Posted by Kati:
The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest.
He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.
Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science?
Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits, "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.
Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades!
It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.
We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.
Read more>>
See also: Dutch doctors blunder by dismissing symptoms in XMRV positive ME patient as psychosomatic and fail to diagnose Metastatic Breast Cancer
See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
See also: Famous pop star shows British journalists how to write a proper article about Prof Wessely, the alleged death threats and ME
Doctor Speedy and ME in search of medical honesty
Wednesday, August 31, 2011
Anaesthetic error in Birmingham hospital leaves teenager paralysed for life
A teenager was left paralysed from the waist down after a spinal anaesthetic was wrongly left in place for too long, a hospital has admitted.
Sophie Tyler, 14, of Risca, near Newport, had gallstone surgery in Birmingham Children's Hospital in 2008.
But a pain-killing epidural infusion was not removed for two days, permanently damaging her spinal cord.
The hospital said it was "deeply sorry" and that it had made changes to prevent it happening again.
Sophie, now 17, underwent the surgery on 27 May 2008, solicitors for her family said.
A day later she complained of numbness in her right leg.
After two days of receiving the epidural, the numbness had spread to both legs and Sophie was barely able to move her feet.
However, hospital staff did not stop the pain-killing anaesthetic until the night of 29 May.
The following day, Sophie underwent an MRI scan, which revealed that the anaesthetic had entered the spinal cord and damaged the membranes, paralysing her from the waist down.
'Very determined'
Sue Tyler said it had "completely changed" her daughter's life.
"From being an outgoing teenager her life has altered overnight and we have all had to come to terms with what has happened.
Obituary: Ruth Brinker, Founder of Project Open Hand, the organization that serves hot meals to people with HIV and other illnesses
Brinker passed away on Monday of natural causes. The group's Development Director Bob Brenneman told KQED News that Brinker was a fearless woman.
She started Open Hand at a very scary time here in San Francisco and at a time when a lot of people her age were figuring they can settle back and enjoy retirement. She saw how the AIDS epidemic was affecting so many people and she knew she could do something about it and she just rolled up her sleeves and did it.
Project Open Hand now serves hot meals to some 7,200 people in San Francisco and Alameda counties every year. Brinker's work has inspired the formation of more than 100 similar groups in the U.S. and abroad.
The current executive director of Project Open Hand posted his remembrance here.
The site for the memorial has yet to be determined.
Tuesday, August 30, 2011
Famous pop star shows British journalists how to write a proper article about Prof Wessely, the alleged death threats and ME
Posted by cinderkeys:
If you've been following the news lately, you may have come across a story or two about a small group of psychiatrists who study myalgic encephalomyelitis, aka "chronic fatigue syndrome." The psychiatrists in question say they've received death threats from ME patients ... the very people they're trying to help! Gasp!
The reason for the threats, they claim, is that patients with ME—a disease that causes chronic pain, debilitating exhaustion, and worsening of symptoms after even minimal exertion—are opposed to research that implies their illness could be linked to psychological problems.
"I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones," says Simon Wessely, one of the more famous (or infamous) ME psychiatrists. "That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer – and I don't mean that as a joke."
He argues that the threats are potentially as damaging to medical research as attacks made by animal rights activists.
The ME community has responded by collectively rolling its eyes.
Digging a bit deeper
Before you jump to any conclusions, rest assured that ME patients and advocates do NOT believe that death threats are a legitimate means of activism or self-expression. There's a lot of anger, yes, but assassination attempts are not on the table.
So why aren't they taking the threats seriously?
First of all, ... Read more>>
If you've been following the news lately, you may have come across a story or two about a small group of psychiatrists who study myalgic encephalomyelitis, aka "chronic fatigue syndrome." The psychiatrists in question say they've received death threats from ME patients ... the very people they're trying to help! Gasp!
The reason for the threats, they claim, is that patients with ME—a disease that causes chronic pain, debilitating exhaustion, and worsening of symptoms after even minimal exertion—are opposed to research that implies their illness could be linked to psychological problems.
"I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones," says Simon Wessely, one of the more famous (or infamous) ME psychiatrists. "That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer – and I don't mean that as a joke."
He argues that the threats are potentially as damaging to medical research as attacks made by animal rights activists.
The ME community has responded by collectively rolling its eyes.
Digging a bit deeper
Before you jump to any conclusions, rest assured that ME patients and advocates do NOT believe that death threats are a legitimate means of activism or self-expression. There's a lot of anger, yes, but assassination attempts are not on the table.
So why aren't they taking the threats seriously?
First of all, ... Read more>>
Anonymous said: Brian Nicholson, UK patient with ME, sectioned for "abnormal illness beliefs" again
Anonymous said... :
Brian nicholson has been given depixol for being deluded about his health August 30, 2011 10:36 AM Anonymous said...
Brian nicholson suffers from severe ME CFS and needs as much help against the Uk mental act for having ME. BRIAN can hardly stand up the room is spinning so much with rotational stigma or neuro otological injury or vestibular injury brian is being denied access to even Ent surgeon.
Brian has fallen and hit his head on a concrete floor no xrays or mri wAs taken by psychiatrists.
Brians global drs are prof hyde prof mathias and prof grahame prof aziz also he has seen dr ronald schondorf in montreal. They cannot do anything against the mental health act for Me cfs patients.
One secretary has called it absolutely outragious being denied treatment.
Brian is writing to the dept of health Sec of state for health local mp agent sanders medical dr dr liam fox head of MoD Has been informed. He has even been given instruction from defence intelligence to get to a hospital. Access was denied. He has met local people who have been trying to help him get publicity but he has been told not to go to the newspapers. His insurance company is unum insurance.
He has also tested positive for lyme and mycoplasma fermentans incognitus as found in gulf war syndrome.
He needs help Brian nicholsons contact no is 07812731494
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
Brian nicholson has been given depixol for being deluded about his health August 30, 2011 10:36 AM Anonymous said...
Brian nicholson suffers from severe ME CFS and needs as much help against the Uk mental act for having ME. BRIAN can hardly stand up the room is spinning so much with rotational stigma or neuro otological injury or vestibular injury brian is being denied access to even Ent surgeon.
Brian has fallen and hit his head on a concrete floor no xrays or mri wAs taken by psychiatrists.
Brians global drs are prof hyde prof mathias and prof grahame prof aziz also he has seen dr ronald schondorf in montreal. They cannot do anything against the mental health act for Me cfs patients.
One secretary has called it absolutely outragious being denied treatment.
Brian is writing to the dept of health Sec of state for health local mp agent sanders medical dr dr liam fox head of MoD Has been informed. He has even been given instruction from defence intelligence to get to a hospital. Access was denied. He has met local people who have been trying to help him get publicity but he has been told not to go to the newspapers. His insurance company is unum insurance.
He has also tested positive for lyme and mycoplasma fermentans incognitus as found in gulf war syndrome.
He needs help Brian nicholsons contact no is 07812731494
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
Prof Hooper's response to the Department of Health regarding the classification of ME
Prof Hooper's response to the Department of Health regarding the classification of ME
Permission to repost.
On the 18th of July, Professor Hooper sent a letter to the Secretary of State for Work and Pensions and to the Secretary of State for Health on the discrepancy between the departments' classifications of ME. This letter is already in the public domain:
http://www.meactionuk.org.uk/dwp_doh_classification.htm
To date he has received no response from the Secretary of State for Work and Pensions but has received a reply from the Department of Health. The following letter is Professor Hooper's response to that reply:
http://www.meactionuk.org.uk/Butler-letter-reply-28-8-11.htm
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
Mr Adam Butler
Customer Service Centre
Department of Health
Richmond House
79 Whitehall
London
SW1A 2NS
28th August 2011
Your ref: TO00000632586
Dear Mr Butler
re: The major discrepancy between the Department of Health and the Department for Work and Pensions on the same medical issue
Thank you for your letter of 11th August 2011 sent in response to my letter of 18th July 2011 to The Rt Hon Iain Duncan Smith MP, Secretary of State at the Department for Work and Pensions that was copied to The Rt Hon Andrew Lansley MP, Secretary of State for Health, on whose behalf you replied.
I am grateful for the courtesy shown by Mr Lansley, a similar courtesy not having been shown by Mr Duncan Smith from whose Department I have received no acknowledgement, so this letter will be copied to him.
In my letter I drew attention to a serious error in the Statutory Payments Manual (SPM 50605) used by decision-makers, namely the categorisation of ME as a mental health disorder.
In your reply you confirm that this error was the responsibility of the DWP: “You suggest that guidance used by decision-makers in the Department for Work and Pensions (DWP) is unsatisfactory. The DWP’s Health and Benefits Division was responsible for drafting the guidance”.
It is, of course, the case that Professor Peter White, a psychiatrist who works for the permanent health insurance industry, was and remains lead advisor on “CFS” to the DWP and, despite irrefutable evidence that he is incorrect, he is firmly committed to his belief that ME is a somatoform (mental) disorder and he advises the DWP accordingly.
Herein lies the major discrepancy between two Departments of State: whilst the DWP rejects the WHO ICD-10 classification of ME as a neurological disorder and follows Professor White’s beliefs that it is a mental disorder, the Department of Health nominally accepts the WHO ICD-10 classification of it as a neurological disorder.
There are in fact two related issues, one being the discrepancy between two Departments of State outlined above and the other relating specifically to the DoH, this being the failure of the DoH to comply with the 1995 mandate to observe the WHO-ICD-10 classification system (see below).
The first issue
To summarise (and reiterate) the position of both Departments of State and their previous public statements about the nature of ME:
1. the Department of Health accepted ME as an organic disease in 1987 (Hansard, HC 27th November 1987, column 353)
2. in a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3) 2484/200), in his capacity as Parliamentary Under Secretary of State for Health, Stephen Dorrell MP set out the official view of the Department of Health on ME: referring to the Disability Handbook produced by the Disability Living Allowance Board, the Minister stated: “The Handbook recognises that in some persons with ME there is evidence of persisting viral infections in muscles, with some evidence of muscle damage. Hence, a physical cause for ME is recognised”
3. on 16th August 1992, Stephen Dorrell MP, Minister of Health, went on public record confirming that “ME is established as a medical condition” when he addressed a meeting of the Leicestershire ME Group
4. not only the DoH but also the DWP recognises that ME is a physical disorder. In the British Library Current Awareness Topics Update for March 2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p; titles II and XVI; evaluating cases involving chronic fatigue syndrome (CFS). Fed Regist 1999 Apr 30;64(83);23380-4: “In accordance with 20 CFR 402.35(b)(1), the Commissioner of Social Security gives notice of Social Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the evaluation and adjudication of disability claims involving Chronic Fatigue Syndrome (CFS). This Ruling explains that, when it is accompanied by appropriate medical signs or laboratory findings, CFS is a medically determinable impairment that can be the basis for a finding of “disability”. This Ruling ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS, and provides a consolidated statement of these policies and procedures”
5. this was reported in the Disability Rights Bulletin, Summer 2000, in the following terms: “In assessing DLA higher rate mobility component for people with ME, recent guidance advises decision makers to assume in the vast majority of cases that the claimant has a physical disablement. The Commissioner, in CDLA/2822/99, held that an award of the higher rate mobility component can be made on the basis of the physical element of the condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in the vast majority of claims, if a doctor says the claimant has ME or CFS then that can be taken as an opinion that they have a physical disablement”
6. on 18th September 2002, the Director of Communications at NICE issued a Communications Report which stated: “Following discussions with the Department of Health and other national agencies the Institute has adopted a new classification system that will be applied Institute-wide” (2.7.1.1); “The ICD classification has been used as a basis for the new Institute classification directed at the informed reader” (2.7.1.4); “ICD-10…classification codes are mandatory for use across England” (2.7.1.5)
7. ME has been included as a neurological disorder in the UK Read Codes (F286) used by all GPs since 2003
8. by letter dated 11th February 2004 to the Countess of Mar, the Parliamentary Under Secretary of State at the Department of Health, Lord Warner, confirmed that the DoH accepts the WHO classification of ME as a neurological disorder. That letter was placed by Lord Warner in the House library for access by all MPs.
9. ME has been included in the National Service Framework for long-term neurological condition since its inception in 2005
10. the DoH has confirmed on numerous occasions, many documented in Hansard, that the DoH itself and the UK Government accepts ME to be a neurological disorder, for example on 2nd June 2008 the then Parliamentary Under Secretary of State, Lord Darzi, was unequivocal: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition….I have acknowledged that CFS/ME is a neurological condition…the Government…have made it clear that… it is a neurological rather than a mental condition”
11. by letter dated 3rd August 2011 (reference TO00000632783), Tim Morgan from the Department of Health Customer Services Centre confirmed the following: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD. There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. (It is, of course, the case that Government officials such as yourself may use bogus names -- known as “office names” -- when writing to members of the public [“Civil servants use bogus names to sign official letters”; Roya Nikkhah; Sunday Telegraph; 20th June 2004], so the true authorship of both your own letter and that of Tim Morgan remains unconfirmed but must nonetheless be taken as authoritative documents).
You say in your letter: “As you may know, in 2007, NICE published Clinical Guideline 53 (CG53) on the diagnosis and management of CFS/ME in adults and children, to advise the NHS on the treatment of CFS/ME in England and Wales”. The documentary evidence outlined above makes it all the more troubling that the NICE Guideline Development Group which produced CG53 expressly rejected the WHO classification of ME as a neurological disorder and voted to remove from its deliberations its initial acceptance of ME as an organic disorder, this being confirmed by patient representative Tanya Harrison in her letter of resignation dated 16th July 2007 from the GDG: “the final straw came when the group voted to remove that ME/CFS is a physical illness”, which reflects the beliefs and advice of Professor Peter White to the DWP.
Mindful of the above evidence, it will not be sufficient for you to reply to this current letter saying that this discrepancy between two Departments of State is a medical matter for the PCTs to address.
It is a policy issue and thus a matter for the two Secretaries of State themselves to address and resolve without further delay.
The WHO has classified ME as a neurological disorder since 1969 and ME cannot be taxonomically considered by the DWP or any other Department to be a somatoform disorder; that the DWP persists in doing so is all the more disturbing when, in another Department of State, the entire NHS is mandated to regard ME as a neurological disorder.
The second issue
Permission to repost.
On the 18th of July, Professor Hooper sent a letter to the Secretary of State for Work and Pensions and to the Secretary of State for Health on the discrepancy between the departments' classifications of ME. This letter is already in the public domain:
http://www.meactionuk.org.uk/dwp_doh_classification.htm
To date he has received no response from the Secretary of State for Work and Pensions but has received a reply from the Department of Health. The following letter is Professor Hooper's response to that reply:
http://www.meactionuk.org.uk/Butler-letter-reply-28-8-11.htm
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
Mr Adam Butler
Customer Service Centre
Department of Health
Richmond House
79 Whitehall
London
SW1A 2NS
28th August 2011
Your ref: TO00000632586
Dear Mr Butler
re: The major discrepancy between the Department of Health and the Department for Work and Pensions on the same medical issue
Thank you for your letter of 11th August 2011 sent in response to my letter of 18th July 2011 to The Rt Hon Iain Duncan Smith MP, Secretary of State at the Department for Work and Pensions that was copied to The Rt Hon Andrew Lansley MP, Secretary of State for Health, on whose behalf you replied.
I am grateful for the courtesy shown by Mr Lansley, a similar courtesy not having been shown by Mr Duncan Smith from whose Department I have received no acknowledgement, so this letter will be copied to him.
In my letter I drew attention to a serious error in the Statutory Payments Manual (SPM 50605) used by decision-makers, namely the categorisation of ME as a mental health disorder.
In your reply you confirm that this error was the responsibility of the DWP: “You suggest that guidance used by decision-makers in the Department for Work and Pensions (DWP) is unsatisfactory. The DWP’s Health and Benefits Division was responsible for drafting the guidance”.
It is, of course, the case that Professor Peter White, a psychiatrist who works for the permanent health insurance industry, was and remains lead advisor on “CFS” to the DWP and, despite irrefutable evidence that he is incorrect, he is firmly committed to his belief that ME is a somatoform (mental) disorder and he advises the DWP accordingly.
Herein lies the major discrepancy between two Departments of State: whilst the DWP rejects the WHO ICD-10 classification of ME as a neurological disorder and follows Professor White’s beliefs that it is a mental disorder, the Department of Health nominally accepts the WHO ICD-10 classification of it as a neurological disorder.
There are in fact two related issues, one being the discrepancy between two Departments of State outlined above and the other relating specifically to the DoH, this being the failure of the DoH to comply with the 1995 mandate to observe the WHO-ICD-10 classification system (see below).
The first issue
To summarise (and reiterate) the position of both Departments of State and their previous public statements about the nature of ME:
1. the Department of Health accepted ME as an organic disease in 1987 (Hansard, HC 27th November 1987, column 353)
2. in a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3) 2484/200), in his capacity as Parliamentary Under Secretary of State for Health, Stephen Dorrell MP set out the official view of the Department of Health on ME: referring to the Disability Handbook produced by the Disability Living Allowance Board, the Minister stated: “The Handbook recognises that in some persons with ME there is evidence of persisting viral infections in muscles, with some evidence of muscle damage. Hence, a physical cause for ME is recognised”
3. on 16th August 1992, Stephen Dorrell MP, Minister of Health, went on public record confirming that “ME is established as a medical condition” when he addressed a meeting of the Leicestershire ME Group
4. not only the DoH but also the DWP recognises that ME is a physical disorder. In the British Library Current Awareness Topics Update for March 2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p; titles II and XVI; evaluating cases involving chronic fatigue syndrome (CFS). Fed Regist 1999 Apr 30;64(83);23380-4: “In accordance with 20 CFR 402.35(b)(1), the Commissioner of Social Security gives notice of Social Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the evaluation and adjudication of disability claims involving Chronic Fatigue Syndrome (CFS). This Ruling explains that, when it is accompanied by appropriate medical signs or laboratory findings, CFS is a medically determinable impairment that can be the basis for a finding of “disability”. This Ruling ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS, and provides a consolidated statement of these policies and procedures”
5. this was reported in the Disability Rights Bulletin, Summer 2000, in the following terms: “In assessing DLA higher rate mobility component for people with ME, recent guidance advises decision makers to assume in the vast majority of cases that the claimant has a physical disablement. The Commissioner, in CDLA/2822/99, held that an award of the higher rate mobility component can be made on the basis of the physical element of the condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in the vast majority of claims, if a doctor says the claimant has ME or CFS then that can be taken as an opinion that they have a physical disablement”
6. on 18th September 2002, the Director of Communications at NICE issued a Communications Report which stated: “Following discussions with the Department of Health and other national agencies the Institute has adopted a new classification system that will be applied Institute-wide” (2.7.1.1); “The ICD classification has been used as a basis for the new Institute classification directed at the informed reader” (2.7.1.4); “ICD-10…classification codes are mandatory for use across England” (2.7.1.5)
7. ME has been included as a neurological disorder in the UK Read Codes (F286) used by all GPs since 2003
8. by letter dated 11th February 2004 to the Countess of Mar, the Parliamentary Under Secretary of State at the Department of Health, Lord Warner, confirmed that the DoH accepts the WHO classification of ME as a neurological disorder. That letter was placed by Lord Warner in the House library for access by all MPs.
9. ME has been included in the National Service Framework for long-term neurological condition since its inception in 2005
10. the DoH has confirmed on numerous occasions, many documented in Hansard, that the DoH itself and the UK Government accepts ME to be a neurological disorder, for example on 2nd June 2008 the then Parliamentary Under Secretary of State, Lord Darzi, was unequivocal: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition….I have acknowledged that CFS/ME is a neurological condition…the Government…have made it clear that… it is a neurological rather than a mental condition”
11. by letter dated 3rd August 2011 (reference TO00000632783), Tim Morgan from the Department of Health Customer Services Centre confirmed the following: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD. There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. (It is, of course, the case that Government officials such as yourself may use bogus names -- known as “office names” -- when writing to members of the public [“Civil servants use bogus names to sign official letters”; Roya Nikkhah; Sunday Telegraph; 20th June 2004], so the true authorship of both your own letter and that of Tim Morgan remains unconfirmed but must nonetheless be taken as authoritative documents).
You say in your letter: “As you may know, in 2007, NICE published Clinical Guideline 53 (CG53) on the diagnosis and management of CFS/ME in adults and children, to advise the NHS on the treatment of CFS/ME in England and Wales”. The documentary evidence outlined above makes it all the more troubling that the NICE Guideline Development Group which produced CG53 expressly rejected the WHO classification of ME as a neurological disorder and voted to remove from its deliberations its initial acceptance of ME as an organic disorder, this being confirmed by patient representative Tanya Harrison in her letter of resignation dated 16th July 2007 from the GDG: “the final straw came when the group voted to remove that ME/CFS is a physical illness”, which reflects the beliefs and advice of Professor Peter White to the DWP.
Mindful of the above evidence, it will not be sufficient for you to reply to this current letter saying that this discrepancy between two Departments of State is a medical matter for the PCTs to address.
It is a policy issue and thus a matter for the two Secretaries of State themselves to address and resolve without further delay.
The WHO has classified ME as a neurological disorder since 1969 and ME cannot be taxonomically considered by the DWP or any other Department to be a somatoform disorder; that the DWP persists in doing so is all the more disturbing when, in another Department of State, the entire NHS is mandated to regard ME as a neurological disorder.
The second issue
MEA's response to Max Pemberton's quackery
Full text of ME Association response to Dr Max Pemberton’s article in the Daily Telegraph
by Tony Britton on August 30, 2011:
‘Protestors have got it all wrong on ME’ – Dr Max Pemberton, Daily Telegraph, Monday 29 August, 2011
INTENDED FOR PUBLICATION
UPDATED 30.08.2011: "Dr. Speedy, the MEA messed up a tweet to you, I see, but said they don't want it up as it might jeopardise the chances of being published. They have taken it down from their website."
See also: It is testament to the complexity of Max Pemberton's brain that the mind is capable of ignoring almost 5000 research papers of evidence that ME is a severely disabling neurological disease
See also: Max Pemberton has got it all wrong on ME
Monday, August 29, 2011
It is testament to the complexity of Max Pemberton's brain that the mind is capable of ignoring almost 5000 research papers of evidence that ME is a severely disabling neurological disease
That doctors feel threatened by the idea that ME is a severely disabling neurological and infectious disease says a lot about the power of Prof Simon Wessely's movement of Ignoring Clinical Evidence.
It might seem strange that a group of doctors deliberately promote Ignoring Clinical Evidence but that is the state of affairs of CBT psychiatry in the 21st-century.
Even more baffling if you realise that Max Pemberton's article appeared online on Friday, 26 August, and many people including myself tweeted a few things to Max Pemberton in an effort to help write a sensible article about ME.
The online article was pulled from the site on Friday, 26 August. Dr. Pemberton had the whole weekend to look at the evidence presented to him and rewrite his article. As one can see from the picture below, I tweeted a few very important things about this disease to him. But as a great friend of Prof Wessely and Ben Goldacre, Max Pemberton obviously decided that ignoring clinical evidence is the way forward in 21st-century medicine.
Prof Wessely and his crew wasted £11 million of taxpayers money on the PACE and FINE trials. Even though they used the Oxford criteria, which were deliberately created to select people with tiredness caused by depression, and which deliberately exclude people with neurological ME, the PACE and FINE trials still showed that CBT and GET are useless.
The Dutch CBT psychiatrists tried to claim that the PACE trial showed that 30% of patients were cured by these so-called treatments, they didn't mention that these patients were still so bad that they still fulfilled the criteria to start the trial in the first place. And the Lancet, which is very much into ignoring clinical evidence as well, had no choice but to remove this comment from the Dutch CBT psychiatrists.
That doctors feel threatened by the idea that ME is a severely disabling infectious disease says a lot about the power of Prof Simon Wessely's movement of Ignoring Clinical Evidence. It’s an attitude that has ruined the lives of many people living with this severely disabling infectious disease. Yet, for me, a psychological explanation of why Prof Wessely and Max Pemberton are into ignoring clinical evidence is a very real one.
However, it is testament to the complexity of the brain that the mind is capable of ignoring almost 5000 research papers of evidence that ME is a severely disabling neurological disease. But money and power are all more important than the lives of millions of severely disabled people.
As a model for understanding Prof Wessely and Max Pemberton, the psychological explanation of telling psycho blah blah for power and money is as valid as any other.
One final note, if CBT and GET would the next best thing since sliced bread, then obviously all ME patients would be shouting this from the roofs. The fact that all of us have been saying for decades that CBT is useless and that GET is extremely dangerous for people with ME, which has been backed up by many reviews of these silly treatments, should tell a thing or 2 to doctors who are willing to listen to their patients.
But the one thing that becomes clear from this article is that Dr. Pemberton is not only into ignoring clinical evidence, he also doesn't listen to his patients, just like his dear old friend Prof Simon Wessely.
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: The putative agent of ME/CFS can be transferred to monkeys
See also: The Lancet will withdraw comment that claims that PACE participants had a 30% recovery rate with CBT and GET
Max Pemberton has got it all wrong on ME
That doctors feel threatened by the idea that ME is a severely disabling neurological and infectious disease says a lot about the power of Prof Simon Wessely's movement of Ignoring Clinical Evidence.
It might seem strange that a group of doctors deliberately promote Ignoring Clinical Evidence but that is the state of affairs of CBT psychiatry in the 21st-century.
Even more baffling if you realise that Max Pemberton's article appeared online on Friday, 26 August, and many people including myself tweeted a few things to Max Pemberton in an effort to help write a sensible article about ME.
The online article was pulled from the site on Friday, 26 August. Dr. Pemberton had the whole weekend to look at the evidence presented to him and rewrite his article. As one can see from the picture below, I tweeted a few very important things about this disease to him. But as a great friend of Prof Wessely and Ben Goldacre, Max Pemberton obviously decided that ignoring clinical evidence is the way forward in 21st-century medicine.
Prof Wessely and his crew wasted £11 million of taxpayers money on the PACE and FINE trials. Even though they used the Oxford criteria, which were deliberately created to select people with tiredness caused by depression, and which deliberately exclude people with neurological ME, the PACE and FINE trials still showed that CBT and GET are useless.
The Dutch CBT psychiatrists tried to claim that the PACE trial showed that 30% of patients were cured by these so-called treatments, they didn't mention that these patients were still so bad that they still fulfilled the criteria to start the trial in the first place. And the Lancet, which is very much into ignoring clinical evidence as well, had no choice but to remove this comment from the Dutch CBT psychiatrists.
That doctors feel threatened by the idea that ME is a severely disabling infectious disease says a lot about the power of Prof Simon Wessely's movement of Ignoring Clinical Evidence. It’s an attitude that has ruined the lives of many people living with this severely disabling infectious disease. Yet, for me, a psychological explanation of why Prof Wessely and Max Pemberton are into ignoring clinical evidence is a very real one.
However, it is testament to the complexity of the brain that the mind is capable of ignoring almost 5000 research papers of evidence that ME is a severely disabling neurological disease. But money and power are all more important than the lives of millions of severely disabled people.
As a model for understanding Prof Wessely and Max Pemberton, the psychological explanation of telling psycho blah blah for power and money is as valid as any other.
One final note, if CBT and GET would the next best thing since sliced bread, then obviously all ME patients would be shouting this from the roofs. The fact that all of us have been saying for decades that CBT is useless and that GET is extremely dangerous for people with ME, which has been backed up by many reviews of these silly treatments, should tell a thing or 2 to doctors who are willing to listen to their patients.
But the one thing that becomes clear from this article is that Dr. Pemberton is not only into ignoring clinical evidence, he also doesn't listen to his patients, just like his dear old friend Prof Simon Wessely.
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: The putative agent of ME/CFS can be transferred to monkeys
See also: The Lancet will withdraw comment that claims that PACE participants had a 30% recovery rate with CBT and GET
Sunday, August 28, 2011
Professor Hooper’s longer response to the Observer's article about Professor Wessely’s allegations of death threats
Professor Hooper has given permission for this longer article he submitted to the Observer to be made public:
Observer article about Professor Wessely’s allegations of death threats:
Professor Hooper’s response
25th August 2011
No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years.
No matter what the degree of provocation, it is indefensible to liken people with myalgic encephalomyelitis (ME) to the Animal Liberation Front extremists. This will create a further tidal wave of loathing against them. It is an inexcusable attack on the whole ME community, not just on those few people who may have behaved irrationally. It might be thought that, of all people, psychiatrists would know how to recognise and deal with unbalanced behaviour instead of exploiting it.
Wessely says he is concerned that such behaviour is putting off researchers but it is he who is putting them off by his endless purveying of so much negative publicity about people with ME. He perpetuates the dismissive, often contemptuous, attitude of many healthcare professionals toward those with the disease.
The problem is that although these scientists claim to be studying patients with ME, they are studying people with chronic “fatigue” (ie. chronic tiredness) but then claiming that their results apply to those with ME; this has resulted in a lack of appropriate NHS medical services for those with ME and in incalculable harm and distress to patients and their desperate families.
Even though the World Health Organisation has classified ME as a neurological disorder since 1969, the Wessely School teaches that it is not a neurological but a psychosocial (behavioural) disorder.
There are about 250,000 ME patients in the UK. By comparison, there are about 83,000 people in the UK suffering from multiple sclerosis, yet the far larger numbers of ME patients coping with an equally serious neurological disorder are not only denied both medical and social support but are ridiculed, mocked, disbelieved, derided and abused by those charged with their medical and social care.
Dr John Greensmith noted in a letter to The Scotsman (when Wessely was making the same claims of vilification by patients seven years ago): “It is deplorable if he has been so treated, no matter how controversial his views. It is instructive, however, to examine how Professor Wessely has raised passions to this level of fervour by, perhaps, more than any other single individual, being responsible for making the area as controversial as it is”.
There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the “Wessely School”).
Most of them work for the medical and permanent health insurance industry. The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control. In 1994, Wessely went on record about the industry’s concerns: “By 1990 insurance and disability claims (for ME) were doubling every year”. There is plentiful written evidence that the Wessely School advise their insurance industry paymasters that ME is a “functional” (ie. non-organic) disorder, which is to the financial advantage of the industry, as functional disorders are excluded from cover.
Wessely and his colleagues are also advisors on ME to Government Departments of State (and Wessely’s wife is Chair of the Royal College of General Practitioners); as a result, people with ME are specifically targeted by the Department for Work and Pensions, making it difficult for them to claim State benefits, with the financial support necessary for basic survival being ruthlessly withdrawn. Many very sick and destitute ME patients have had no alternative but to commit suicide, rates of which in ME are known to be higher than average (sadly, a fact does little to mitigate the charge that they were “mental malingerers”).
The Wessely School’s blatant financial conflict of interest has been roundly condemned by a group of senior parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.
The Wessely School’s endless assertions that ME does not exist except as an aberrant illness belief by those who are seeking secondary gain (an assertion for which there is not a shred of evidence, as the many doctors, nurses, medical scientists, lawyers, teachers, and others who have lost their valued careers, salaries, homes, marriages and even families because of ME will readily confirm) has created a climate of disgust for patients with ME, giving rise to such banner headlines as “GPs despise the ME generation” published in the medical trade magazine “GP Medicine”. Since the 1980s, they have made a point of mocking and denigrating sufferers from ME in a way they would not dare do about patients with multiple sclerosis or other neurological disorders and this has been fed to and reflected in the national media.
The Wessely School insist that they can cure ME by “cognitive restructuring” (ie. brain-washing patients into believing that they do not suffer from an organic illness but from wrong illness beliefs) and by forcing them to ignore their symptoms and engage in a programme of incremental exercise (one MP suffering from ME collapsed and died leaving the House of Commons gym, having been told to exercise back to fitness).
What is ME?
ME is a chronic, acquired neuroimmune disorder that affects every bodily system, not only the neurological and immune systems but also the endocrine, cardiovascular and respiratory systems as well as the musculoskeletal and gastrointestinal systems.
There is evidence of widespread, chronic inflammation and of serious problems with the blood vessels in both adults and children.
The muscles of people with ME have been shown to take much longer to recover from minimal exercise. Direct impairments in oxygen delivery have been clearly demonstrated. Cardiac output in ME patients has been shown to barely meet metabolic demand, so it is no wonder that patients feel – and are – extremely ill, with profound incapacity and nausea; many patients cannot stand unsupported and often have difficulty maintaining their balance.
There are more abnormal genes in ME than in cancer: there is compelling evidence linking ME with exposure to environmental toxins and chemical warfare agents. Gene expression research has demonstrated 16 genes as having an expression profile associated with ME. Genes affecting the immune system and the functioning of muscles have been shown to be abnormal. A neuronal component was identified that is associated with hypomyelination of the central nervous system. The researchers specifically pointed out the association of organophosphates (which include household pesticides) and chemical warfare agents with the damaged genes.
Notably, after one of the researchers who discovered these acquired (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who control funding for ME research at the Medical Research Council, he lost his tenure and his contract was not renewed.
He was not hounded out of his research by patients with ME, but by those whose mission seemed to be to ensure that his voice was silenced, leaving the way open for more dismissal and disparagement of those battling a devastating disease.
At a press briefing in the United States on 3rd November 2006, ME was described by Anthony Komaroff, Professor of Medicine at Harvard and a world-renowned ME expert as “this terrible illness”.
People die from ME and UK coroners have recorded it as a cause of death.
Evidence from autopsies of ME patients is chilling: there is evidence of oedema, inflammation in 75% of the spinal cord, damaged arteries, congestion of the liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of muscle fibres with release of muscle fibre contents into the circulation, some of which are toxic to the kidney), and degeneration of the brain. The Medical Director of one US support foundation commented: “Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients”.
However, when in 2002 the UK Chief Medical Officer publicly stated that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease, the British Medical Journal quoted Professor Michael Sharpe responding by saying that just because the CMO says something, it doesn’t mean that doctors will pay any attention.
The Wessely School’s published views about people with ME
Since about 1987 the Wessely School have consistently rejected the biomedical evidence of serious organic pathology in ME.
In 1990 Wessely asserted that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients”.
That same year he wrote in a medical textbook: “The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”.
In 1991, he cited medical comments made between 1880 and 1908 on patients with neurasthenia, with the clear implication that such descriptions apply equally well to today’s ME patients: “always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician”.
In 1992 the Wessely School directed that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms; that same year, Wessely went on record about his intention to “eradicate” ME.
In 1994 ME was described by Wessely as merely “a belief” and a “myth” (“I will argue that ME is simply a belief, the belief that one has an illness called ME……I will argue that this line here (pointing to a slide) represents…the line between real and unreal illness”) and he openly named and mocked a seriously ill ME patient in a lecture; that person is now dead.
In 1996, under the guise of a Report from the Joint Royal Colleges of Physicians, Psychiatrists and General Practitioners, the Wessely School recommended that no investigations should be performed to confirm the diagnosis. (This advice to doctors was re-stated in the 2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School were instrumental. This means that investigations such as a comprehensive immune profile cannot be ordered in the UK -- even though one specific immune test always corresponds to disease severity in ME patients -- nor can patients be sent for fMRI scans that show clear evidence of hypoperfusion in the brain, nor can doctors request SPECT scans that show reduced blood flow through the brain stem in ME patients in a particular pattern that to date has not been found in any other disease process).
In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease diagnosis”.
In 1999 Sharpe said about ME patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service”.
Between February and April 2002 Wessely was involved with a poll of “non-diseases” carried out amongst doctors by the British Medical Journal: along with big ears and freckles, the poll found ME to be a non-disease that is best left medically untreated. As a result, patients with ME were struck off their GP’s list, one extremely sick person being told scathingly “This practice does not treat non-existent diseases”.
For those who want or need to find out about the published organic pathology in ME, a summary of the biomedical abnormalities can found in Section 2 of “Magical Medicine: How to Make a Disease Disappear” (http:///www.meactionuk.org.
The Wessely School’s dismissal and rejection of the biomedical evidence on ME has continued unabated. It was not the fact that UK scientists such as Professor Myra McClure failed to find evidence of the retrovirus XMRV found in ME patients by US researchers that caused such an eruption of anger within the ME community: it was the utterly triumphant and contemptuous comments of certain of those scientists whose studies failed to replicate the original XMRV study published in Science (2009:326:585-589) that so incensed some people with ME and the medical scientists and clinicians who are striving to help them.
Patients with ME know what Wessely really thinks about them, as his published views leave no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS patients, see “Quotable Quotes about ME/CFS”: http://www.
The views of the Wessely School about ME have repeatedly been shown by medical scientists of international repute to be completely wrong: the recently published International Consensus Criteria for ME produced by 26 world experts from 13 countries points to widespread inflammation and multisystemic neuropathology, consistent with the WHO classification of ME as a neurological disorder, of which the cardinal symptom is post-exertional nalaise. The authors state: “Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome, is a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measureable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology.”
What is astonishing is that no NHS clinician has the autonomy to regard ME as a somatoform disorder because the WHO classifies it as a neurological disorder; the Department of Health has confirmed in writing that: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD. There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”.
Not only the Wessely School themselves but also many GPs and NHS neurologists are in breach of that mandate: in 2010, 84% of neurologists questioned stated that they do not believe that ME exists as a neurological condition.
Who is abusing whom?
For the Wessely School to ignore the scientific evidence that ME is a biomedical disorder is abusive of patients with the disorder; for them to advise the DWP decision-makers and to train ATOS examiners that ME is a mental disorder is abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious and significant medical disorder with reproducible multiple systemic abnormalities is abusive.
This widespread abuse of ME patients continues unabated in the UK.
Robin McKie implies that it is these scientists themselves who are being abused by the very patients they are trying to help. If this is true – and if it is corroborated by the police and is not another public attack on people with ME so often used by the Wessely School in the past when yet more research appears that vitiates their own beliefs -- it is an entirely unacceptable state of affairs and must be condemned without reservation.
However, responsible journalists should exercise the requisite journalistic neutrality when reporting a “story” and report the whole issue, not just regurgitate uncritically what they are fed by those with well-established vested interests. McKie would do well to redress the balance by reporting the presentation by Catriona Courtier at the Royal Society of Medicine meeting in the “Medicine and me” series on 11th July 2009 in which she emphasised the scandalous situation faced by ME patients in the UK:
“Over the twenty years I have had this illness, what has really bedevilled the situation of patients with ME has been the belief, which has been persistently promulgated, that we are suffering, not from a physical illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources, the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment against the patient's wishes.
“Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect that should exist between doctor and patient. They have done a great disservice to both patients and to the medical profession.
“I began by describing the severely affected as the weakest among us. In some ways they are the strongest… to live for many years with an illness like ME is a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to”.
That patients with ME continue to be neither listened to, appropriately investigated nor correctly cared for but abused and effectively abandoned is believed by many to be the shameful legacy of the Wessely School.
Notes for Editors
1. All the above statements can be substantiated by literature references.
2. Much other information has been omitted purely for reasons of space; there are many harrowing stories, as documented by Natalie Boulton in her book “Lost Voices” and her DVD “Voices from the Shadows” that is to be shown at an international film festival in the autumn.
Observer article about Professor Wessely’s allegations of death threats:
Professor Hooper’s response
25th August 2011
No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years.
No matter what the degree of provocation, it is indefensible to liken people with myalgic encephalomyelitis (ME) to the Animal Liberation Front extremists. This will create a further tidal wave of loathing against them. It is an inexcusable attack on the whole ME community, not just on those few people who may have behaved irrationally. It might be thought that, of all people, psychiatrists would know how to recognise and deal with unbalanced behaviour instead of exploiting it.
Wessely says he is concerned that such behaviour is putting off researchers but it is he who is putting them off by his endless purveying of so much negative publicity about people with ME. He perpetuates the dismissive, often contemptuous, attitude of many healthcare professionals toward those with the disease.
The problem is that although these scientists claim to be studying patients with ME, they are studying people with chronic “fatigue” (ie. chronic tiredness) but then claiming that their results apply to those with ME; this has resulted in a lack of appropriate NHS medical services for those with ME and in incalculable harm and distress to patients and their desperate families.
Even though the World Health Organisation has classified ME as a neurological disorder since 1969, the Wessely School teaches that it is not a neurological but a psychosocial (behavioural) disorder.
There are about 250,000 ME patients in the UK. By comparison, there are about 83,000 people in the UK suffering from multiple sclerosis, yet the far larger numbers of ME patients coping with an equally serious neurological disorder are not only denied both medical and social support but are ridiculed, mocked, disbelieved, derided and abused by those charged with their medical and social care.
Dr John Greensmith noted in a letter to The Scotsman (when Wessely was making the same claims of vilification by patients seven years ago): “It is deplorable if he has been so treated, no matter how controversial his views. It is instructive, however, to examine how Professor Wessely has raised passions to this level of fervour by, perhaps, more than any other single individual, being responsible for making the area as controversial as it is”.
There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the “Wessely School”).
Most of them work for the medical and permanent health insurance industry. The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control. In 1994, Wessely went on record about the industry’s concerns: “By 1990 insurance and disability claims (for ME) were doubling every year”. There is plentiful written evidence that the Wessely School advise their insurance industry paymasters that ME is a “functional” (ie. non-organic) disorder, which is to the financial advantage of the industry, as functional disorders are excluded from cover.
Wessely and his colleagues are also advisors on ME to Government Departments of State (and Wessely’s wife is Chair of the Royal College of General Practitioners); as a result, people with ME are specifically targeted by the Department for Work and Pensions, making it difficult for them to claim State benefits, with the financial support necessary for basic survival being ruthlessly withdrawn. Many very sick and destitute ME patients have had no alternative but to commit suicide, rates of which in ME are known to be higher than average (sadly, a fact does little to mitigate the charge that they were “mental malingerers”).
The Wessely School’s blatant financial conflict of interest has been roundly condemned by a group of senior parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians.
The Wessely School’s endless assertions that ME does not exist except as an aberrant illness belief by those who are seeking secondary gain (an assertion for which there is not a shred of evidence, as the many doctors, nurses, medical scientists, lawyers, teachers, and others who have lost their valued careers, salaries, homes, marriages and even families because of ME will readily confirm) has created a climate of disgust for patients with ME, giving rise to such banner headlines as “GPs despise the ME generation” published in the medical trade magazine “GP Medicine”. Since the 1980s, they have made a point of mocking and denigrating sufferers from ME in a way they would not dare do about patients with multiple sclerosis or other neurological disorders and this has been fed to and reflected in the national media.
The Wessely School insist that they can cure ME by “cognitive restructuring” (ie. brain-washing patients into believing that they do not suffer from an organic illness but from wrong illness beliefs) and by forcing them to ignore their symptoms and engage in a programme of incremental exercise (one MP suffering from ME collapsed and died leaving the House of Commons gym, having been told to exercise back to fitness).
What is ME?
ME is a chronic, acquired neuroimmune disorder that affects every bodily system, not only the neurological and immune systems but also the endocrine, cardiovascular and respiratory systems as well as the musculoskeletal and gastrointestinal systems.
There is evidence of widespread, chronic inflammation and of serious problems with the blood vessels in both adults and children.
The muscles of people with ME have been shown to take much longer to recover from minimal exercise. Direct impairments in oxygen delivery have been clearly demonstrated. Cardiac output in ME patients has been shown to barely meet metabolic demand, so it is no wonder that patients feel – and are – extremely ill, with profound incapacity and nausea; many patients cannot stand unsupported and often have difficulty maintaining their balance.
There are more abnormal genes in ME than in cancer: there is compelling evidence linking ME with exposure to environmental toxins and chemical warfare agents. Gene expression research has demonstrated 16 genes as having an expression profile associated with ME. Genes affecting the immune system and the functioning of muscles have been shown to be abnormal. A neuronal component was identified that is associated with hypomyelination of the central nervous system. The researchers specifically pointed out the association of organophosphates (which include household pesticides) and chemical warfare agents with the damaged genes.
Notably, after one of the researchers who discovered these acquired (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly criticised the psychiatrists who control funding for ME research at the Medical Research Council, he lost his tenure and his contract was not renewed.
He was not hounded out of his research by patients with ME, but by those whose mission seemed to be to ensure that his voice was silenced, leaving the way open for more dismissal and disparagement of those battling a devastating disease.
At a press briefing in the United States on 3rd November 2006, ME was described by Anthony Komaroff, Professor of Medicine at Harvard and a world-renowned ME expert as “this terrible illness”.
People die from ME and UK coroners have recorded it as a cause of death.
Evidence from autopsies of ME patients is chilling: there is evidence of oedema, inflammation in 75% of the spinal cord, damaged arteries, congestion of the liver and spleen, ischaemia of the bowel, rhabdomyolysis (the breakdown of muscle fibres with release of muscle fibre contents into the circulation, some of which are toxic to the kidney), and degeneration of the brain. The Medical Director of one US support foundation commented: “Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients”.
However, when in 2002 the UK Chief Medical Officer publicly stated that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease, the British Medical Journal quoted Professor Michael Sharpe responding by saying that just because the CMO says something, it doesn’t mean that doctors will pay any attention.
The Wessely School’s published views about people with ME
Since about 1987 the Wessely School have consistently rejected the biomedical evidence of serious organic pathology in ME.
In 1990 Wessely asserted that ME exists “only because well-meaning doctors have not learnt to deal effectively with suggestible patients”.
That same year he wrote in a medical textbook: “The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”.
In 1991, he cited medical comments made between 1880 and 1908 on patients with neurasthenia, with the clear implication that such descriptions apply equally well to today’s ME patients: “always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician”.
In 1992 the Wessely School directed that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms; that same year, Wessely went on record about his intention to “eradicate” ME.
In 1994 ME was described by Wessely as merely “a belief” and a “myth” (“I will argue that ME is simply a belief, the belief that one has an illness called ME……I will argue that this line here (pointing to a slide) represents…the line between real and unreal illness”) and he openly named and mocked a seriously ill ME patient in a lecture; that person is now dead.
In 1996, under the guise of a Report from the Joint Royal Colleges of Physicians, Psychiatrists and General Practitioners, the Wessely School recommended that no investigations should be performed to confirm the diagnosis. (This advice to doctors was re-stated in the 2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School were instrumental. This means that investigations such as a comprehensive immune profile cannot be ordered in the UK -- even though one specific immune test always corresponds to disease severity in ME patients -- nor can patients be sent for fMRI scans that show clear evidence of hypoperfusion in the brain, nor can doctors request SPECT scans that show reduced blood flow through the brain stem in ME patients in a particular pattern that to date has not been found in any other disease process).
In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease diagnosis”.
In 1999 Sharpe said about ME patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service”.
Between February and April 2002 Wessely was involved with a poll of “non-diseases” carried out amongst doctors by the British Medical Journal: along with big ears and freckles, the poll found ME to be a non-disease that is best left medically untreated. As a result, patients with ME were struck off their GP’s list, one extremely sick person being told scathingly “This practice does not treat non-existent diseases”.
For those who want or need to find out about the published organic pathology in ME, a summary of the biomedical abnormalities can found in Section 2 of “Magical Medicine: How to Make a Disease Disappear” (http:///www.meactionuk.org.
The Wessely School’s dismissal and rejection of the biomedical evidence on ME has continued unabated. It was not the fact that UK scientists such as Professor Myra McClure failed to find evidence of the retrovirus XMRV found in ME patients by US researchers that caused such an eruption of anger within the ME community: it was the utterly triumphant and contemptuous comments of certain of those scientists whose studies failed to replicate the original XMRV study published in Science (2009:326:585-589) that so incensed some people with ME and the medical scientists and clinicians who are striving to help them.
Patients with ME know what Wessely really thinks about them, as his published views leave no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS patients, see “Quotable Quotes about ME/CFS”: http://www.
The views of the Wessely School about ME have repeatedly been shown by medical scientists of international repute to be completely wrong: the recently published International Consensus Criteria for ME produced by 26 world experts from 13 countries points to widespread inflammation and multisystemic neuropathology, consistent with the WHO classification of ME as a neurological disorder, of which the cardinal symptom is post-exertional nalaise. The authors state: “Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome, is a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measureable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology.”
What is astonishing is that no NHS clinician has the autonomy to regard ME as a somatoform disorder because the WHO classifies it as a neurological disorder; the Department of Health has confirmed in writing that: “The ICD-10 is an NHS Information Standard….The NHS has a long history of using the ICD. There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added)….Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”.
Not only the Wessely School themselves but also many GPs and NHS neurologists are in breach of that mandate: in 2010, 84% of neurologists questioned stated that they do not believe that ME exists as a neurological condition.
Who is abusing whom?
For the Wessely School to ignore the scientific evidence that ME is a biomedical disorder is abusive of patients with the disorder; for them to advise the DWP decision-makers and to train ATOS examiners that ME is a mental disorder is abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious and significant medical disorder with reproducible multiple systemic abnormalities is abusive.
This widespread abuse of ME patients continues unabated in the UK.
Robin McKie implies that it is these scientists themselves who are being abused by the very patients they are trying to help. If this is true – and if it is corroborated by the police and is not another public attack on people with ME so often used by the Wessely School in the past when yet more research appears that vitiates their own beliefs -- it is an entirely unacceptable state of affairs and must be condemned without reservation.
However, responsible journalists should exercise the requisite journalistic neutrality when reporting a “story” and report the whole issue, not just regurgitate uncritically what they are fed by those with well-established vested interests. McKie would do well to redress the balance by reporting the presentation by Catriona Courtier at the Royal Society of Medicine meeting in the “Medicine and me” series on 11th July 2009 in which she emphasised the scandalous situation faced by ME patients in the UK:
“Over the twenty years I have had this illness, what has really bedevilled the situation of patients with ME has been the belief, which has been persistently promulgated, that we are suffering, not from a physical illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources, the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment against the patient's wishes.
“Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect that should exist between doctor and patient. They have done a great disservice to both patients and to the medical profession.
“I began by describing the severely affected as the weakest among us. In some ways they are the strongest… to live for many years with an illness like ME is a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to”.
That patients with ME continue to be neither listened to, appropriately investigated nor correctly cared for but abused and effectively abandoned is believed by many to be the shameful legacy of the Wessely School.
Notes for Editors
1. All the above statements can be substantiated by literature references.
2. Much other information has been omitted purely for reasons of space; there are many harrowing stories, as documented by Natalie Boulton in her book “Lost Voices” and her DVD “Voices from the Shadows” that is to be shown at an international film festival in the autumn.
Professor Hooper's letter to the Observer, in response to Robin McKie's silly article
This letter was submitted by Professor Hooper to the Observer, in response to the article by Robin McKie "Chronic fatigue syndrome researchers face death threats from militants", published on Sunday the 21st of August 2011, http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis/print
Professor Hooper was contacted out of the blue by the reader's editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie's article.
The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.
He received an acknowledgement from the reader's editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
25 August 2011
Dear Sir
No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.
It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.
ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.
The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.
No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.
For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.
These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.
The true ME story has yet to be told.
Malcolm Hooper
Permission to repost.
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
See also: Dr. Hilary Jones, When you say, "ME is controversial", did you check that with Alison, Annabel and Sophia? Now, I'm sure you didn't, because all three died of ME. Yes you read that right, …
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: The putative agent of ME/CFS can be transferred to monkeys
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
Professor Hooper was contacted out of the blue by the reader's editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie's article.
The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.
He received an acknowledgement from the reader's editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
25 August 2011
Dear Sir
No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.
It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.
ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.
The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.
No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.
For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.
These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.
The true ME story has yet to be told.
Malcolm Hooper
Permission to repost.
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
See also: Dr. Hilary Jones, When you say, "ME is controversial", did you check that with Alison, Annabel and Sophia? Now, I'm sure you didn't, because all three died of ME. Yes you read that right, …
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: The putative agent of ME/CFS can be transferred to monkeys
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
Prof Wessely action men doll in stores for Christmas...
PS: This isn't my handiwork. Pity, because it's a masterpiece(s). Creator wants to stay anonymous.
UK Blood Transfusion Services: OBLIGATORY: ME and CFS patients must not donate
Source: UK Blood Transfusion Services:
http://www.transfusionguidelines.org.uk/index.aspx?pageid=6287§ion=8&publication=STD&Highlight=fatigue
Post Viral Fatigue Syndrome: Including Myalgic Encephalopathy (ME) and Chronic Fatigue Syndrome (CFS)
Obligatory Must not donate if: Not resolved.
Update Information This entry was last updated in TDSG-LD Edition 203, Release 02
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
Friday, August 26, 2011
The longer professor Wessely's campaign about the death threats lasts, the clearer it becomes that it is simply a campaign of bullying the sick and disabled
Photo from We Campaign for ME
If there were really death threats issued against Prof Simon Wessely, then the police should deal with them and we don't need to read about them in the papers on a daily base for weeks.
The more often this is published, the clearer it becomes that professor Wessely does not want the police to be involved and that he does not want the police to solve the issue.
All he wants is to remain in power, and to make sure that no one finds out that ME/CFS is a severely disabling infectious disease.
He also wants to make sure that no one finds out that there are thousands of scientific papers showing all sorts of physical abnormalities in people with ME/CFS which are deliberately ignored by CBT psychiatrists, the CDC, the NHS and Nice to the detriment of millions of severely ill people.
As a doctor in general, and as a patient who has been bedridden for many many years and is totally dependent on others, in particular, I can't say I'm very impressed with this sort of doctoring.
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Professor of Psychology, Rhona Johnston shows that ME/CFS is NOT a psychological condition (on a UK Government website !!!) … a MUST READ
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
See also: Dr. Hilary Jones, When you say, "ME is controversial", did you check that with Alison, Annabel and Sophia? Now, I'm sure you didn't, because all three died of ME. Yes you read that right, …
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
More psychobabble from Simon Wessely, who doesn't seem to have any insight into all the suffering his denial psychiatry has caused and is still causing
Simon Wessely, spectator.co.uk, 27 AUGUST 2011:
http://www.spectator.co.uk/essays/all/7190703/mind-the-gap.thtml
"I am proud of what we achieved. We set up what was the first and is now probably the largest NHS service for CFS sufferers.
We have now seen over 3,000 patients, and the majority of them are very grateful for the treatment they have received. Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics.
They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological. Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries.
I have been called a new Dr Mengele, the next Dr Shipman; somebody said that my wife is a ‘rat who should be thrown into a cage with infected mice’. One blogger wrote a post addressed to me in which he called me ‘the born personal physician of Heydrich, Goebbels or Hitler’. I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim. OK, let’s keep a sense of proportion. It’s only a small number of people who do this.
I have been seeing CFS sufferers now for over 20 years and our patients bear little resemblance to the internet extremists. They are perplexed, uncertain, and desperate for help from whatever quarter, provided that they are treated with respect by someone who believes they are ill. Nor are they anti-psychiatry.
For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.
My mother told me that to specialise in psychiatry, I would need a thick skin. Usually I have one.
But three things here anger me. First, the repeated claim that we don’t think our patients have an illness. They do, and to say otherwise is insulting. Second, even if you don’t think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queen’s Square are the best we have. They are by no means a cure — but nor are the treatments that we offer to sufferers from rheumatoid arthritis, MS, Parkinson’s, schizophrenia and many more.
No one would advocate leaving them without any prospect of treatment. And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.
It’s not so much the threatening emails and blogs that rile. It’s the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues — the claims go on and on.
The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word ‘not’ deleted, for instance. And transcripts of our speeches are sometimes altered so that ‘yes’ becomes ‘no’."
http://www.spectator.co.uk/essays/all/7190703/mind-the-gap.thtml
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
Nurofen alert: Nurofen box may contain a powerful anti-psychotic drug
Nurofen alert after drug mix-up
People have been warned to check before taking a popular painkiller in case the box contains a powerful anti-psychotic drug that can cause suicidal behaviour. In an error at the warehouse, blister packs of Seroquel X, which is used for treating schizophrenia, depression and bipolar disorder, were put …
http://www.thetimes.co.uk/tto/health/news/article3145727.ece
People have been warned to check before taking a popular painkiller in case the box contains a powerful anti-psychotic drug that can cause suicidal behaviour. In an error at the warehouse, blister packs of Seroquel X, which is used for treating schizophrenia, depression and bipolar disorder, were put …
http://www.thetimes.co.uk/tto/health/news/article3145727.ece
Dr Greensmith's Open letter sent to Professor Simon Wessely RE the "M.E. death threats story"
PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS
Open letter sent to Professor Simon Wessely, Institute of Psychiatry, King's College London
from Dr John H Greensmith, M.E. Community Trust.org,
with copies for publication and his expected reply to all media in which the "M.E. death threats story" appeared.
Dear Professor Wessely,
I wonder if you realise the terrible distress you have caused amongst the M.E. Community with your "M.E. death threats" story, repeated in several broadcasts and newspapers, each time gathering a little more inaccuracy and venom?
To be scrupulously fair, you have never mentioned Myalgic Encephalomyelitis (or its initials M.E.), nor do I believe that any allegations you make apply to M.E. sufferers because they are too ill to carry them out, or attend your clinic for treatment which, for them, would either be ineffective or make a majority worse but you know that M.E. is often, quite unjustifiably, taken to be synonymous with Chronic fatigue Syndrome (CFS). M.E. patients have certainly appeared in the headlines and even a cartoon.
Will you, therefore, make it clear, in the same places you enjoyed the publicity, that you specifically exclude people with M.E. or, if you do include them, will you say according to which diagnostic criteria?
In advance of any response you make, may I offer some comfort to people with this dreadfully disabling illness that we know is a discrete illness with a physical cause or underlying disease process, for which psychiatric history or concurrent illness is not a prerequisite and this organisation will be properly researching it with valid experimental design; subjects selected according to criteria at least as discriminatory as the Canadian Consensus Criteria, rather than the heterogeneous CFS, within which bundle there is not an illness that one could not include if one desired and appropriate statistical analysis. All of these will be subject to a consultation preview period - to which you will be invited - before we go ahead, funded by money gained by subscription, donations and charitable fund raising initiatives, whose independence of its donors is assured, conducted by researchers whose careers do not depend on the outcome.
This will take some time but since you say you know the dreadful experience of a death threat, you may wish to take the opportunity to set minds at rest and prevent some unnecessary deaths, by their own hands, amongst people you may have inadvertently affected.
Yours sincerely
drjohngreensmith@mecommunitytrust.org
M.E. Community Trust.org
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
See also: ME/CFS Researchers Face Threats from Militant Islamic Extremist Terrorists
See also: Lynn did not need to receive death threats. CBT psychiatrists have made sure that no medical research has been done in the last 20 years or so to find treatment and a cure for ME, an infectious disease
See also: The first picture of the death threats against Prof Simon Wessely has now been released
See also: The following cartoon in The Times shows how desperate the Times and Prof Wessely are to make sure that no one finds out that ME/CFS is a serious and very disabling Infectious disease
See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
Open letter sent to Professor Simon Wessely, Institute of Psychiatry, King's College London
from Dr John H Greensmith, M.E. Community Trust.org,
with copies for publication and his expected reply to all media in which the "M.E. death threats story" appeared.
Dear Professor Wessely,
I wonder if you realise the terrible distress you have caused amongst the M.E. Community with your "M.E. death threats" story, repeated in several broadcasts and newspapers, each time gathering a little more inaccuracy and venom?
To be scrupulously fair, you have never mentioned Myalgic Encephalomyelitis (or its initials M.E.), nor do I believe that any allegations you make apply to M.E. sufferers because they are too ill to carry them out, or attend your clinic for treatment which, for them, would either be ineffective or make a majority worse but you know that M.E. is often, quite unjustifiably, taken to be synonymous with Chronic fatigue Syndrome (CFS). M.E. patients have certainly appeared in the headlines and even a cartoon.
Will you, therefore, make it clear, in the same places you enjoyed the publicity, that you specifically exclude people with M.E. or, if you do include them, will you say according to which diagnostic criteria?
In advance of any response you make, may I offer some comfort to people with this dreadfully disabling illness that we know is a discrete illness with a physical cause or underlying disease process, for which psychiatric history or concurrent illness is not a prerequisite and this organisation will be properly researching it with valid experimental design; subjects selected according to criteria at least as discriminatory as the Canadian Consensus Criteria, rather than the heterogeneous CFS, within which bundle there is not an illness that one could not include if one desired and appropriate statistical analysis. All of these will be subject to a consultation preview period - to which you will be invited - before we go ahead, funded by money gained by subscription, donations and charitable fund raising initiatives, whose independence of its donors is assured, conducted by researchers whose careers do not depend on the outcome.
This will take some time but since you say you know the dreadful experience of a death threat, you may wish to take the opportunity to set minds at rest and prevent some unnecessary deaths, by their own hands, amongst people you may have inadvertently affected.
Yours sincerely
drjohngreensmith@mecommunitytrust.org
M.E. Community Trust.org
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
See also: ME/CFS Researchers Face Threats from Militant Islamic Extremist Terrorists
See also: Lynn did not need to receive death threats. CBT psychiatrists have made sure that no medical research has been done in the last 20 years or so to find treatment and a cure for ME, an infectious disease
See also: The first picture of the death threats against Prof Simon Wessely has now been released
See also: The following cartoon in The Times shows how desperate the Times and Prof Wessely are to make sure that no one finds out that ME/CFS is a serious and very disabling Infectious disease
See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
Thursday, August 25, 2011
Professor Simon Wessely: such is his influence that no state funding is forthcoming to support any other research than his own
By Margaret Cook:
<-->
I’ve said before in this column that the most important thing I have learned in a lifetime of medical practice, is that you should LISTEN to what the patient tells you. So, following my own advice, and feeling somewhat humbled, when they asked if I needed to know more about ME, where would I go? I replied that I could do worse than coming to this particular group. That raised me in their estimation. But I picked up a name, the significance of which did not strike me until afterwards.
Simon Wessely, professor of epidemiology and liaison psychiatry at Guy’s, King’s and St Thomas’s Schools of Medicine, Dentistry and Biomedical Sciences, London. Ah, what a Big Cheese he sounds. It seems that he has been central to the psychiatric perspective that ME does not exist at all, and that the related "Chronic Fatigue Syndrome" is a mental condition best managed by a psychiatric therapeutic approach.
He has downplayed the need for research into diagnostic markers for the condition(s), and such is his influence that no state funding is forthcoming to support any other research than his own. For a mystery condition, this is closing down the portals and reducing the chance of the broad, open perspective needed to break through the barriers of prejudice and ignorance.
After I left the meeting, that name echoed in my subconscious mind, until a day or so later, I suddenly remembered where I had met it before.
In May 2003, a revolutionary issue of the BMJ challenged the age-old association between doctors and their lavishly-generous sponsors, the pharmaceutical companies. The attack was bold, and very shocking to those who had not thought of how the profession prostitutes itself for funding, and how both treatment and research are distorted as a result. Well done, the editor, said some of us. But not all.
One of the foremost who objected to the challenge to our collective integrity was the aforementioned Professor Simon Wessely, who (using a reductio ad absurdum argument), refused to countenance the possibility of his judgment being swayed by any such paymaster. He wrote: "It is time we doctors grew up."
He no doubt subscribes to the principle of the double-blind, randomised clinical trial, yet is himself blind to the possibility that doctors can be biased by that most powerful motivator, money.
You can tell from every sentence of his letter that he is used to dictating principles and having everyone in his orbit humbly accept his gospel. If I needed persuading that the ME community merited my support, this letter and its author would convince me. When you have enemies like him, you need a powerful lot of friends.
See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
See also: This is the worst from The Times yet: Prof Simon Wessely finally showing evidence of the death threats against him
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
<-->
I’ve said before in this column that the most important thing I have learned in a lifetime of medical practice, is that you should LISTEN to what the patient tells you. So, following my own advice, and feeling somewhat humbled, when they asked if I needed to know more about ME, where would I go? I replied that I could do worse than coming to this particular group. That raised me in their estimation. But I picked up a name, the significance of which did not strike me until afterwards.
Simon Wessely, professor of epidemiology and liaison psychiatry at Guy’s, King’s and St Thomas’s Schools of Medicine, Dentistry and Biomedical Sciences, London. Ah, what a Big Cheese he sounds. It seems that he has been central to the psychiatric perspective that ME does not exist at all, and that the related "Chronic Fatigue Syndrome" is a mental condition best managed by a psychiatric therapeutic approach.
He has downplayed the need for research into diagnostic markers for the condition(s), and such is his influence that no state funding is forthcoming to support any other research than his own. For a mystery condition, this is closing down the portals and reducing the chance of the broad, open perspective needed to break through the barriers of prejudice and ignorance.
After I left the meeting, that name echoed in my subconscious mind, until a day or so later, I suddenly remembered where I had met it before.
In May 2003, a revolutionary issue of the BMJ challenged the age-old association between doctors and their lavishly-generous sponsors, the pharmaceutical companies. The attack was bold, and very shocking to those who had not thought of how the profession prostitutes itself for funding, and how both treatment and research are distorted as a result. Well done, the editor, said some of us. But not all.
One of the foremost who objected to the challenge to our collective integrity was the aforementioned Professor Simon Wessely, who (using a reductio ad absurdum argument), refused to countenance the possibility of his judgment being swayed by any such paymaster. He wrote: "It is time we doctors grew up."
He no doubt subscribes to the principle of the double-blind, randomised clinical trial, yet is himself blind to the possibility that doctors can be biased by that most powerful motivator, money.
You can tell from every sentence of his letter that he is used to dictating principles and having everyone in his orbit humbly accept his gospel. If I needed persuading that the ME community merited my support, this letter and its author would convince me. When you have enemies like him, you need a powerful lot of friends.
See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
See also: This is the worst from The Times yet: Prof Simon Wessely finally showing evidence of the death threats against him
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
This is the worst from The Times yet: Prof Simon Wessely finally showing evidence of the death threats against him
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
See also: ME/CFS Researchers Face Threats from Militant Islamic Extremist Terrorists
See also: Lynn did not need to receive death threats. CBT psychiatrists have made sure that no medical research has been done in the last 20 years or so to find treatment and a cure for ME, an infectious disease
See also: The first picture of the death threats against Prof Simon Wessely has now been released See also: The following cartoon in The Times shows how desperate the Times and Prof Wessely are to make sure that no one finds out that ME/CFS is a serious and very disabling Infectious disease See also: Premorbid risk markers for growing nose syndrome in a large cohort of CBT psychiatrists
The following cartoon in The Times shows how desperate the Times and Prof Wessely are to make sure that no one finds out that ME/CFS is a serious and very disabling Infectious disease
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET
See also: ME/CFS Researchers Face Threats from Militant Islamic Extremist Terrorists
See also: Lynn did not need to receive death threats. CBT psychiatrists have made sure that no medical research has been done in the last 20 years or so to find treatment and a cure for ME, an infectious disease
See also: The first picture of the death threats against Prof Simon Wessely has now been released
Wednesday, August 24, 2011
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Write about ... chronic illness and email your contribution to the Guardian before 3.30pm UK time on Wednesday 24 August
A report linking chronic illness to suicide has highlighted the level of distress caused by some conditions. Tell us your experiences
guardian.co.uk, Tuesday 23 August 2011 18.00 BST:
Article history
According to a report published by the thinktank Demos, at least 10% of suicides in Britain are linked to terminal or chronic illness, accounting for more than 400 deaths a year. These findings draw attention to the unacknowledged level of distress caused by some chronic conditions.
As part of our people's panel series, we would like to hear from four readers who suffer from a chronic illness and tell us how you manage it. What would you want in terms of providing better medical, practical and psychological support to manage your condition?
If you would like to participate, please email Jessica Reed (jessica.reed@guardian.co.uk) before 3.30pm on Wednesday 24 August, with a contribution of about 200-275 words. Please include your Comment is free username, your real name and a number we can contact you on. We'll pick four entries for publication. The subject line of your email should be "People's panel" and you should include an element of comment – your opinion on the issue being debated. If you object to having your real name used, mention this – but be aware that signed contributions are more likely to be selected.
Please note that we may not be able to respond to all submissions.
guardian.co.uk, Tuesday 23 August 2011 18.00 BST:
Article history
According to a report published by the thinktank Demos, at least 10% of suicides in Britain are linked to terminal or chronic illness, accounting for more than 400 deaths a year. These findings draw attention to the unacknowledged level of distress caused by some chronic conditions.
As part of our people's panel series, we would like to hear from four readers who suffer from a chronic illness and tell us how you manage it. What would you want in terms of providing better medical, practical and psychological support to manage your condition?
If you would like to participate, please email Jessica Reed (jessica.reed@guardian.co.uk) before 3.30pm on Wednesday 24 August, with a contribution of about 200-275 words. Please include your Comment is free username, your real name and a number we can contact you on. We'll pick four entries for publication. The subject line of your email should be "People's panel" and you should include an element of comment – your opinion on the issue being debated. If you object to having your real name used, mention this – but be aware that signed contributions are more likely to be selected.
Please note that we may not be able to respond to all submissions.
Tuesday, August 23, 2011
ME/CFS Researchers Face Threats from Militant Islamic Extremist Terrorists
by Danny Ze-dog on Tuesday, August 23, 2011:
Researchers Face Threats from Militant Islamic Extremist Terrorists
"Err.. not quite." says Simon Wessely, correcting the title of this piece.
Researchers Face Threats from Militant Survivalists?
"No.."
Researchers Face Threats from Giant Sea Scorpions?
"No, you're getting farther from it, now.."
Researchers Face Threats from Militant...
"Patients."
Militant... Patients? Seriously?
"Err.. yes."
(...)
In The Face of Terrorism, Fundamentalist Researchers Remain True To Their Faith
by an Impartial Observer
Professor Simon Wessely has recommended that the UK government go to Orange Alert due to the threat of terrorist violence from a new breed of militants - people who suffer from chronic fatigue syndrome.
"Do not underestimate the Militant Sick." says Wessely, a London-based psychiatrist. "There is a whole cadre of extremists out there, who are even more deluded than average CFS patient. We must consider them a threat to national security."
Many of them "incite violence with rabid conspiracy theories and anti-Wessely propaganda", according to Wessely.
These include the assertion that Wessely and some of his colleagues have ties to insurance giants who do not want to have to pay out if CFS/ME is universally recognized as a physical disease.
"The idea that some of us are Chief Medical Officers for insurance giants is ridiculous", says Wessely's colleague Peter White, Chief Medical Officer for an insurance giant.
Yet, as this reporter reminded Wessely, members of a 2006 Parliamentary Inquiry group came to the same conclusion that many patients have about possible vested interests, describing them as "an area for serious concern". That group included a Minister of State for the Environment (The Rt Hon Michael Meacher MP), a former President of the Royal College of Physicians (Lord Turnberg), the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge).
"Sociopaths, every one of them." says Wessely. "It is indeed a serious concern that there is a CFS terrorist cell in Parliament."
Could it be argued, using Wessely's own logic, that the active efforts by the so-called "psych lobby" to prevent research into a physical cause of CFS/ME, to discourage doctors from ordering laboratory tests for CFS/ME patients, as well as to separate patients from 'enabling' influences such as like-minded family members and support groups, as well as the sporadic use of forced psychiatric hospitalization, qualify as state-sponsored terrorism?
"We are not threatening patients with death", replies Wessely. "We are just saying that if they don't cooperate, we will force them to do things that they think might kill them, or make them want to kill themselves. I don't see why we can't agree to disagree on that."
Most biomedical researchers disagree with Wessely and his associates. Some argue, for example, that evidence suggests that CFS and ME patients could suffer serious damage or even death as a result of the exercise programs prescribed by the psychosomatic school. On the other hand,
Researchers Face Threats from Militant Islamic Extremist Terrorists
"Err.. not quite." says Simon Wessely, correcting the title of this piece.
Researchers Face Threats from Militant Survivalists?
"No.."
Researchers Face Threats from Giant Sea Scorpions?
"No, you're getting farther from it, now.."
Researchers Face Threats from Militant...
"Patients."
Militant... Patients? Seriously?
"Err.. yes."
(...)
In The Face of Terrorism, Fundamentalist Researchers Remain True To Their Faith
by an Impartial Observer
Professor Simon Wessely has recommended that the UK government go to Orange Alert due to the threat of terrorist violence from a new breed of militants - people who suffer from chronic fatigue syndrome.
"Do not underestimate the Militant Sick." says Wessely, a London-based psychiatrist. "There is a whole cadre of extremists out there, who are even more deluded than average CFS patient. We must consider them a threat to national security."
Many of them "incite violence with rabid conspiracy theories and anti-Wessely propaganda", according to Wessely.
These include the assertion that Wessely and some of his colleagues have ties to insurance giants who do not want to have to pay out if CFS/ME is universally recognized as a physical disease.
"The idea that some of us are Chief Medical Officers for insurance giants is ridiculous", says Wessely's colleague Peter White, Chief Medical Officer for an insurance giant.
Yet, as this reporter reminded Wessely, members of a 2006 Parliamentary Inquiry group came to the same conclusion that many patients have about possible vested interests, describing them as "an area for serious concern". That group included a Minister of State for the Environment (The Rt Hon Michael Meacher MP), a former President of the Royal College of Physicians (Lord Turnberg), the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge).
"Sociopaths, every one of them." says Wessely. "It is indeed a serious concern that there is a CFS terrorist cell in Parliament."
Could it be argued, using Wessely's own logic, that the active efforts by the so-called "psych lobby" to prevent research into a physical cause of CFS/ME, to discourage doctors from ordering laboratory tests for CFS/ME patients, as well as to separate patients from 'enabling' influences such as like-minded family members and support groups, as well as the sporadic use of forced psychiatric hospitalization, qualify as state-sponsored terrorism?
"We are not threatening patients with death", replies Wessely. "We are just saying that if they don't cooperate, we will force them to do things that they think might kill them, or make them want to kill themselves. I don't see why we can't agree to disagree on that."
Most biomedical researchers disagree with Wessely and his associates. Some argue, for example, that evidence suggests that CFS and ME patients could suffer serious damage or even death as a result of the exercise programs prescribed by the psychosomatic school. On the other hand,
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