Professor Simon Wessely: A man has got to know his limitations and my limitations are immunology and ME/CFS

Margaret Williams 23rd February 2013:
 

For the attention of Professor Sir Simon Wessely, Professors Peter White OBE and Michael Sharpe

Margaret Williams      23^rd February 2013

Your attention is drawn to two recently published papers, one on fibromyalgia (FM) and the other on myalgic encephalomyelitis (ME).

You will doubtless recall that in 1999, Professors Wessely and Sharpe published their conviction that FM and ME (referred to as CFS/ME), together with irritable bowel syndrome and pre-menstrual syndrome, constitute but one single functional somatic syndrome (Functional somatic syndromes: one or many? S. Wessely, C Nimnuan, M Sharpe. Lancet 1999:354:936-939) and that in 2004, Professor White published his belief that CFS/ME is an individual functional somatic syndrome (In Debate: there is only one functional somatic syndrome.  Peter D White.  British Journal of Psychiatry 2004:185:95-96). In the latter paper, two of you said you still stood by your thesis that FM and ME are components of a single functional somatic syndrome.

Furthermore, when NICE was compiling its Clinical Guideline 53 on CFS/ME, Professor White advised NICE against prescribing anything for bowel problems, stating authoritatively that such interventions: “are not treatments of CFS/ME since bowel symptoms are not part of CFS/ME” (85 FULL 229.6.4.55).

It seems that those who disagreed with such views may have been correct.

On 17^th December 2012 a paper on fibromyalgia from the University of Illinois, Chicago, was published in BMC Clinical Pathology which seriously undermines your own beliefs (Unique immunologic patterns in fibromyalgia. Frederick Behm et al: http://www.biomedcentral.com/1472-6890/12/25).  Here are some extracts:

“Recent data highlight the role of the immune system in FM. Aberrant expressions of immune mediators, such as cytokines, have been linked to the pathogenesis and traits of FM.  We therefore determined whether cytokine production by immune cells is altered in FM patients by comparing the cellular responses …of a large number of patients with FM to those of healthy matched controls”.

“FM is common in patients with autoimmune disorders, such as systemic lupus erythematosus, Sjogren’s Syndrome and rheumatoid arthritis”.

“We utilised multiple immunologic methods to develop an objective test….This test is based on specific abnormalities in the cytokine levels of stimulated peripheral blood mononuclear cells”.

“In the past, FM was claimed to be a rheumatologic, neurologic or psychiatric disease despite the fact that there were no objective links to any of these pathways”.

“Our findings uncovered evidence that FM is instead an immunologic disorder.  They prove that the immunologic basis of FM occurs independently of any subjective features”.

The second paper is about ME (Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins.  Kenny L de Meirleir; Marc Fremont, Vincent Lombardi et al. In vivo 2013:12:177-188).  Here are some extracts from it:

“Myalgic encephalomyelitis (ME) is a debilitating illness…characterised by neurocognitive dysfunction, inflammation, immune abnormalities and gastrointestinal distress.  An increasing body of evidence suggests that disruptions in the gut may contribute to the induction of neuroinflammation.  Therefore, reports of human endogenous retroviral (HERV) expression in association with neuroinflammatory diseases prompted us to investigate the gut of individuals with ME for the presence of HERV proteins”.

“Autoimmune diseases such as multiple sclerosis (MS) and systemic lupus erythematosus (SLE) have many symptoms that overlap with those of ME”.

“Neurological manifestations often associated with ME are analogous to the neuroinflammation and cognitive abnormalities associated with MS and SLE”.

“Additionally, gastrointestinal aberrations, which are common to individuals with MS and SLE, are among the most frequent symptoms reported by those with ME”.

“HERV proteins and serum antibodies against HERVs have been associated with a number of autoimmune diseases, including MS and SLE”.

“Individuals with ME have a significant number of symptoms that are similar to those described in autoimmune diseases such as MS and SLE.  Additionally, the expression of HERV proteins has been observed in the lymphoid tissue of individuals with autoimmune disease….the gut represents the largest lymphoid compartment and is a significant site of ME-related pathology”.

“In this study we have shown that gut biopsies from 8 out of 12 individuals with ME displayed immunoreactivity consistent with the presence of HERV proteins. However, the same immunoreactivity was not observed in the biopsies of the controls”.

“Additionally, we have shown that the immunoreactivity was observed in cells with a phenotype that is consistent with pDCs (plasmacytoid dendritic cells). These observations suggest that the presence of the HERV protein in pDCs may be associated with a pathological manifestation in at least a subset of individuals with ME”.

“While the expression of endogenous retroviral proteins in the pDCs of ME cases does not intrinsically explain pathology, the observation that the immunoreactive proteins are only observed in pDCs is supportive of this concept. This supposition is further supported by our previous report of the dysregulation of inflammatory cytokines in a cohort of ME cases”.

“These data suggest that our observations in subjects with ME may not be unique to this disease but may, in fact, be common to diseases characterised by chronic inflammation”.

“Although the Canadian consensus criteria for ME and the Fukuda criteria for CFS do not include symptoms of autoimmunity, the recent study by Fluge et al supports the notion that at least a subset of individuals with ME may have an autoimmune element to their disease.  Autoimmune diseases such as SLE, MS and rheumatoid arthritis have several common symptoms that overlap with those of ME and all have been associated with the pDC dysfunction.  Moreover, the same autoimmune diseases are also reported to be associated with the expression of HERVs”.

“Inflammation is known to increase HERV expression; therefore if pDC-associated inflammation drives the expression of endogenous retroviruses, it is also conceivable that dysregulated expression of other proteins in pDCs may occur.  Consequently, the antigen-presenting abilities of pDCs may contribute to the production of auto-reactive antibodies, as is observed in ME”.

“The presence of these proteins in the pDCs of individuals with ME but not in controls does support an involvement of pDCs in ME”.

Clearly the role of the immune system in both FM and ME is important.

You will recall that, in his evidence given on 10^th August 2004 before Lord Lloyd of Berwick at the Independent Inquiry into Gulf War Illnesses, Sir Simon is on record as affirming: “A man has got to know his limitations and my limitations are immunology” (Professor Simon Wessely; Minutes of Proceedings).

Can it now be understood why so many people find it inexplicable that Sir Simon was awarded the inaugural John Maddox Prize for being “an inspiration”  for “standing up for science”; for working with“courage and dignity to uphold the standards of science and evidence against the forces of prejudice”; for battling “to ensure that sense, reason and evidence base play a role in the most contentious debates” and for his “sustained resilience and determination to promote good science”, whilst Professor White was awarded an OBE for services to medical education on CFS?

Made worse by CBT or GET? The PACE Trial calls that recovery

IIME-Newslet-1302-01:

The PACE Trial recovery rates were finally published - a publication initially refused but then  forced on the Principal Investigator by patient pressure, and despite the media being used to gloss over the inadequacies and failings of the whole project.

Flawed from the start, with the goalposts changed mid-course, and ending in ignominy with requests to have the data published being met by silence or rejection, and with a media being orchestrated to stop the whole boat from sinking by making ridiculous and feeble supportive statements.

The PACE Trial was a failure!

It failed to produce any valuable data, it failed to support the biased views of those who only wish to promote ME as a somatoform illness, it failed the patients for whom £5 million of scarce funding was wasted.

Recovery was redefined to mean almost anything the authors wanted it to be as so much deviation had occurred from the original PACE protocol.[1]

Out of the four original definitions for the trial three have been changed.[2]

Recovery was supposed to be defined by meeting all four of the following criteria:

(i) a Chalder Fatigue Questionnaire score of 3 or less (out of maximum 11)

This was changed to 18 out of maximum 33

"We therefore considered a score of 18 (highest integral score below the mean plus 1s.D.) or less as within the normal range for fatigue."

(ii) SF 36 physical Function score of 85 or above

This was changed to 60 or more. The entry criteria accepted people with SF-36 scores of equal or less than 65. So patients could have entered the trial with higher scores and deemed recovered at lower scores. This does not make any sense and the investigators should have explained this as well as discussed what happened to the 78% of participants who did not recover. How many deteriorated?

See also: Revalidation Update: why doctors who use or promote CBT or GET for ME/CFS will fail their revalidation

Please support Robert Miller in his hunger strike to get FDA approval for Ampligen

Please support my husband, Robert Miller, in his hunger strike to get FDA approval for Ampligen.

Bob and I ask that other patients do Not follow this action.

We need you to be our voices and advocates with the agencies and your Congress-people.

From Robert:
Yesterday January 29th, I began a hunger strike seeking FDA approval of Ampligen, the only medication in FDA-approved clinical trials for Chronic Fatigue Syndrome, (ME/CFS).
The FDA Advisory Committee voted Ampligen is safe given the serious nature of CFS and the critical unmet need of patients.

Please support access to Ampligen for ALL ME/CFS PATIENTS by sending a note like the one below to the Secretary of Health Kathleen Sebelius, Assistant Secretary of Health Dr. Howard Koh, FDA Commissioner Dr. Margaret Hamburg, and FDA CDER Director Dr. Janet Woodcock and Deputy Director Dr. Sandra Kweder.

You can just copy and paste the emails below, there is also a Template to use as a guide.
Please also email or call your Congressional Representatives and Senators (look them up Here:Just click on your state, http://www.contactingthecongress.org/) and ask them to investigate why the FDA refuses to approve the ONLY medication for CFS despite safe testing for 20 years. This is a health crisis!

Email To: kathleen.sebelius@hhs.gov, margaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov, sandra.kweder@fda.hhs.gov, howard.koh@hhs.gov, ash@hhs.gov, 511bobmiller42@gmail.com

Subject: CFS Patient starts hunger strike for FDA approval of Ampligen

“Long-time ME/CFS patient Robert Miller from Reno, Nevada began a hunger strike in advance of the FDA’s Feb. 2nd, deadline to decide on Ampligen, the ONLY medication in clinical trials for my illness. I support Mr. Miller because my life has been stolen by ME/CFS and I need real treatment options. We have waited 20 years, and we can’t wait any longer. The FDA Advisory Committee voted Ampligen is safe enough to market because CFS is so serious and there are NO medications to treat patients. Please don’t let the FDA reject the only medication CFS patients can hope for any time soon.”

Your Full Name Here:
Address Here:
Years ill

Postexertional malaise, the pathognomonic symptom of ME, is unusual in any psychiatric condition

Despite thousands of peer-reviewed papers documenting their unique characteristics and pathophysiology, ME and FM continue to be mistaken for psychiatric conditions.

Identifying and Treating Common Psychiatric Conditions Comorbid with Myalgic Encephalomyelitis and/or Fibromyalgia

By Eleanor Stein, MD | 18. Januar 2013

Dr Stein is Clinical Assistant Professor in the department of psychiatry at the University of Calgary, Calgary, Alberta, and is in private practice dedicated to the treatment of myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity. She reports no conflicts of interest concerning the subject matter of this article.

---

This article reviews the diagnostic criteria for both myalgic encephalomyelitis (ME) (ie, chronic fatigue syndrome) and fibromyalgia (FM) and describes how to differentiate them from depressive and anxiety disorders, the psychiatric conditions with which they are most often confused. The patients in the following Case Vignettes have ME and/or FM; not all have a psychiatric condition.

Despite thousands of peer-reviewed papers documenting their unique characteristics and pathophysiology, ME and FM continue to be mistaken for psychiatric conditions. This is problematic because it can delay accurate diagnosis and appropriate treatment, often for years. Although they have some symptoms in common (eg, fatigue, cognitive problems, unrefreshing sleep), ME and FM differ from each other and from all known psychiatric conditions. Diagnostic clarity depends on knowledge of the diagnostic criteria for each condition and identifying the pathognomonic, non-overlapping symptoms.

Diagnostic criteria for myalgic encephalomyelitis

The Canadian Consensus Criteria are used for diagnosis of ME. These criteria require the concurrent presence of disabling fatigue, postexertional malaise, unrefreshing sleep, muscle or joint pain, mood or cognitive symptoms, and at least 2 of the following: autonomic, neuroendocrine, or immune symptoms (Table 1).¹ Postexertional malaise (immediate or delayed), the pathognomonic symptom of ME, is unusual in any psychiatric condition: most psychiatric patients feel better rather than worse after mental or physical exertion. Pain is not a core symptom of any common psychiatric condition but is reported to be elevated in major depression.² Autonomic, neuroendocrine, and immune symptoms are not common in any psychiatric condition.

Read more>>

See also: Another cracker from the CBT school of denial: “The bastards don’t want to get better”…
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients 
See also: The putative agent of ME/CFS can be transferred to monkeys 
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: 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

DSM 5 will be mislabeling millions of people with a fake mental disorder that is unsupported by science

Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder
Medical illness will be mislabeled mental disorder

Published on January 16, 2013 by Allen J. Frances, M.D. in DSM5 in Distress

Many of you will have read a previous blog prepared by Suzy Chapman and me that contained alarming information about the new DSM 5 diagnosis 'Somatic Symptom Disorder.'

SSD is defined so over inclusively by DSM 5 that it will mislabel 1 in 6 people with cancer and heart disease; 1 in 4 with irritable bowel and fibromyalgia; and 1 in 14 who are not even medically ill.

I hoped to be able to influence the DSM 5 work group to correct this in two ways: 1) by suggesting improvements in the wording of the SSD criteria set that would reduce mislabeling; and 2) by letting them know how much opposition they would face from concerned professionals and an outraged public if DSM 5 failed to slam on the brakes while there was still time.

And many of you tried to help by making clear just how important this issue is in people's lives. The blog post got many tens of thousands of views, was reposted on 70 additional sites; was widely Tweeted and Facebooked, and elicited more than 300 extremely well informed and often passionate comments- unanimously in strong opposition.

We have failed and DSM 5 has failed us. For reasons that I can't begin to fathom, DSM 5 has decided to proceed on its mindless and irresponsible course. The sad result will be the mislabeling of potentially millions of people with a fake mental disorder that is unsupported by science and flies in the face of common sense.

I suggested ... Read more>>

The Countess of Mar, Professor Hooper and Dr Weir: The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base

Latest Independent on Sunday correspondence

On Sunday 25th November the UK newspaper, the Independent on Sunday, published an article, "ME: bitterest row yet in a long saga" (1) which led to the publication of a letter signed by 27 signatories, which was published on the 2nd December (2).

Today, in response to this, the following letter has been published in the Independent on Sunday, in both the hard copy and on-line:

http://www.independent.co.uk/voices/letters/ios-letters-emails--online-postings-13-january-2013-8449260.html

Scientific understanding always depends upon sound evidence. According to Sir Paul Nurse FRS: "The John Maddox Prize is an exciting new initiative to recognise bold scientists who battle to ensure that sense, reason and evidence base play a role in the most contentious debates." For scientific understanding to prevail, the extensive biomedical evidence base of ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome] must now be recognised by all researchers in the field.

The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base. The Maddox Prize was thereby awarded to the defender of a hypothesis with no evidence base rather than to someone who was upholding true scientific inquiry. Personal attacks against Professor Sir Simon Wessely do not advance the cause, but it is scientifically legitimate to direct criticism at the hypothesis both he and Professor White continue to espouse.

The Countess of Mar
Professor Malcolm Hooper
Dr William Weir
House of Lords, London SW1

.........................

A longer version, too long for the printed edition, is expected to appear on the IoS website:

Sir, 

Professor Peter White, on behalf of himself and his 26 co-signatories, has apologized to the three of us following the publication of their letter on 2 December 2012. He made it clear that he did not intend to imply that we were harassing Professor (now Sir) Simon Wessely. We were not harassing him. None of us believes that harassment is a means of advancing scientific debate, and certainly not in promoting a greater understanding of the causes of ME/CFS.

In the IoS article of 25 November 2012 we were criticizing the award of the Maddox Prize to Professor Wessely because it is axiomatic that the progress of scientific understanding depends upon sound evidence. Sir Paul Nurse, President of the Royal Society, has said: “The John Maddox Prize is an exciting new initiative to recognize bold scientists who battle to ensure that sense, reason and evidence base play a role in the most contentious debates.”

We are in complete agreement with Sir Paul. We would wish the scientific process to prevail, whereby the extensive peer reviewed biomedical evidence base on ME/CFS is acknowledged and used by all researchers in the field to advance the understanding of the disorder, and we have been calling for this for many years.

There can be no doubt that the cause of ME/CFS is a contentious issue and that there remain many unanswered questions. Both Professor White and Sir Simon Wessely have promoted an hypothesis that ME/CFS is due to an abnormal illness belief; that it is perpetuated by dysfunctional beliefs and coping behaviours, and that cognitive behavior therapy (CBT) and graded exercise therapy (GET) are effective treatments for the condition. In an attempt to prove this hypothesis Professor White, principal investigator, and colleagues, including Sir Simon, conducted what has become known as the PACE trial, published in February 2011 in The Lancet, at a cost of some £5m to the taxpayer. No data on recovery rates and positive outcomes have been released and a FOI request to Queen Mary University of London revealed that: “The requested data relating to recovery rates and positive outcomes do not exist. That is to say that such analyses have not been done and there is no intention to do so. The reason for this is that the analysis strategy has changed from the original protocol.”

There has been no attempt by Professor White to correct the misapprehension in respected journals as well as the popular press that the PACE trial demonstrated recovery rates of between 30% and 40%. The release of all the data relating to the PACE trial would be the most telling indication of the efficacy of CBT and GET and would contribute very effectively to the evidence base that precise scientific enquiry demands. 

In our view, the idea that ME/CFS owes its origins to a dysfunctional psyche is an hypothesis that lacks any scientific evidence base. We are therefore at a loss to understand why the Maddox Prize was awarded to the defender of that hypothesis rather than to someone who was upholding the spirit of true scientific enquiry.

Our main interest is in advancing the scientific understanding of the cause of a frequently devastating and debilitating condition which blights the lives of many thousands of people. We do not believe that personal attacks directed against Professor Sir Simon Wessely will advance the cause, but reserve the right to direct criticism at the hypothesis both he and Professor White continue to espouse. We believe that a proper scientific understanding of the cause(s) of ME/CFS will emerge in the fullness of time.


The Countess of Mar 
Professor Malcolm Hooper 
Dr William Weir
House of Lords
London SW1

(1) http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

(2) http://www.independent.co.uk/voices/letters/ios-letters-emails--online-postings-2-december-2012-8373777.html

Arise, Sir Simon

PS: This isn't my handiwork. Pity, because it's a masterpiece(s). Creator wants to stay anonymous.

Margaret Williams 29th December 2012:

Arise, Sir Simon

Margaret Williams      29^th December 2012

On 6^th November 2012 the charity Sense about Science, a sibling of the Science Media Centre, announced that Professor Simon Wessely had been awarded the inaugural John Maddox Prize “for his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues” (http://www.senseaboutscience.org/pages/2012-maddox-prize.html).

Wessely’s plentiful published and spoken views on the psychosomatic nature of ME are well-known, and people will recall that in 2000, Anthony Komaroff, Professor of Medicine at Harvard, said: “There is now considerable evidence of an underlying biological process which is inconsistent with the hypothesis that (ME/CFS) involves symptoms that are only imagined or amplified because of underlying psychiatric distress.  It is time to put that hypothesis to rest” (The Biology of the Chronic Fatigue Syndrome. Anthony Komaroff.  Am J Med 2000:108:99-105).

Twelve years later, Wessely was honoured for his “courage” in continuing to promote exactly that hypothesis (The rewards of science in the UK – http://www.meactionuk.org.uk/The-Rewards-of-Science.htm).

Scientists and others who legitimately and politely challenge Wessely’s disproven beliefs are accused of being part of a “fanatical lobby” (Independent on Sunday: “ME bitterest row yet in a long saga”: 25^thNovember 2012) and of being involved in a campaign to undermine his work and credibility (www.independent.co.uk/voices/letters/ios-letters-emails--online-postings-2-december-2012-8373777.html).

Indeed, in the above letter that is on the website of the Independent on Sunday, Professor Peter White and his 26 co-signatories confirmed that the “accusations” against Professor Wessely are “false” and that “it was because of accusations like this that Professor Wessely received the award in the first place”.

Now we see that Professor Wessely has been awarded a knighthood in the New Year Honours for his work on Gulf War Syndrome.

It can hardly be forgotten that Wessely has denied the very existence of a Gulf War Syndrome: in their official report published in The Lancet (Health of UK servicemen who served in Persian Gulf War; Catherine Unwin, Anthony David, Simon Wessely et al; Lancet 16 January 1999:353:169-178), the authors claimed they found an association with the “belief” of exposure to a chemical attack, but they failed to identify a specific illness among Gulf War veterans and concluded that there is no such thing as Gulf War Syndrome. In an accompanying supportive article, the late Stephen Straus was categoric: “The cumulative studies now confirm that there is no unique Gulf War syndrome”.

Thirteen years later, acknowledging his honour, Wessely says: “There may not be a distinct illness -- Gulf War Syndrome is a misnomer—Rather it’s an illness or health effect” (Military health expert knighted: 28^th December 2012: http://www.bbc.co.uk/news/health-20850694).  Wessely’s comment must be seen in the light of the fact that “illness” is now deemed by some to be a “behaviour” and in order to be afforded legitimacy, one must have a “disease” (The Scientific and Conceptual Basis of Incapacity Benefits (TSO, 2005) written by Gordon Waddell and Mansel Aylward; published by the Department for Work and Pensions).

Nine months after Wessely et al published their negative findings in The Lancet, a two-year study carried out by Dr Beatrice Golomb for the US Defense Department did not support their conclusions.  On 20^th October 1999 at 2.20am it was announced on the BBC World Service that, as a result of the Golomb study, the Pentagon had released a statement confirming that it had changed its policy and now admitted that there could be a link with Gulf War Syndrome and the use of pyridostigmine bromide (PB) anti-nerve gas tablets (which UK troops were forced to take during the conflict in the Gulf). This cast significant doubt on the reliability of Wessely’s findings.

Subsequently the 2008 report of the Research Advisory Committee on Gulf War Veterans’ Illness categorically identified concomitant exposure to PB and organophosphate pesticides as causative agents in GWS (see below).

Evidence presented at the Second World Congress on CFS and Related Disorders (including GWS) on 9-12^th September 1999 in Brussels included findings in GWS of inadequate cardiovascular support (Professor Ben Natelson); the possible role of environmental factors (Professor Paul Levine); reports of 600 cases of anaphylaxis in US Marines (Professor Garth Nicholson), and evidence that the Gulf War conflict had been the most toxic war in military history (Professor Malcolm Hooper), who told of the injection of vaccines which included biological warfare agents and of exposure to chemical warfare agents including mustard gas and sarin.  When they were ordered to take the NAPS (Nerve Agent Protection Sets) tablets, some troops experienced classic autonomic effects such as sweating and uncontrollable diarrhoea, which resulted in their protection suits being soiled with their own excrement.  In addition there was exposure to depleted uranium (DU) and to toxic smoke from oil-well fires and exposure to solvents and biohazards such as malaria, Leishmaniasis, fleas, scabies, sand flies and mosquitos.

It was easy to design studies which gave the desired result, said Hooper, but there was little doubt that the troops had received a cholinergic triple whammy, and he pointed out that almost the entire cholinergic system would be damaged and/or rendered dysfunctional.  Could a person still function?  The answer was No – the central nervous system was affected, as were the autonomic and peripheral nervous systems.  Hooper discussed various diagnostic tests which ought to have been carried out on the Gulf War veterans, including neurological, immunological, cardiovascular, renal and liver function tests, as well as tests for genetic markers, for assessment of oxidative status, for bone density, for pancreatic and gut function and permeability, and for levels of micro-nutrients (Denigration by Design? Update November 1999:  http://www.meactionuk.org.uk/Denigrationbydesign.htm).

On his own admission, in his official study of Gulf War veterans, Wessely performed no clinical examination or laboratory investigations.  He worked only from a self-report questionnaire sent only to selected veterans, yet he confidently concluded that there is no such thing as Gulf War Syndrome and the MOD accepted his findings.

In 1999, statistics showed that in the US, 9,000 Gulf War deployed personnel were dead (and these were previously fit and healthy young men) and that there were 230,000 medical cases.  From the UK alone, 53,000 troops were involved in the Gulf War but it was not known how many were ill or dead because the only epidemiological study on UK veterans was the one done by Wessely et al which failed to identify a specific Gulf War Syndrome.

A review of all the epidemiological data by Lea Steele for the Research Advisory Committee on Gulf War Veterans’ illness in Washington DC published on 17^th November 2008 found between 25 – 30% of deployed and prepared-for-deployment veterans were sick.  In the UK this equates to 13,000 to 16,000 veterans.  Many of these have died and the remainder live with unacknowledged chronic multi-system conditions with deleterious health and social effects on wives and children.

This 2008 report runs to over 450 pages and contains more than 1,800 references.  Its most important findings are that PB and NAPS tablets were causally linked to GWS and that pesticides, especially organophosphates, were causally linked to GWS.

The report states that GWS has the following features:

• it is a complex, chronic, organic illness
• many veterans show evidence of physical brain injury
• it is not a stress-related condition or due to PTSD
• features that have been demonstrated by extensive investigations including advanced brain imaging include abnormalities of brain structure (including cancer); impaired function of the autonomic nervous system; cardiovascular and respiratory dysfunction and disease; neuroendocrine abnormalities resulting in serious physical impairment, Parkinson’s Disease, multiple sclerosis and motor neurone disease; altered control of cerebral blood flow; alterations in immune system and function; genetic variation in enzymes responsible for protection against neurotoxins; damage to the skeletal system at tissue and cellular level; increased cancer risk, especially brain, bowel, blood, bone, bladder and lung (associated with the principle toxins and DU)

(http://www1.va.gov/rac-gwvi/docs/GWIandHealthofGWVeterans_RAC-GWVIReport_2008.pdf).

Notwithstanding this evidence, it seems that nothing has changed the belief of Simon Wessely, the “leading researcher into the health of military personnel” whose work has “dramatically improved mental health services for the Armed Forces” that there is no Gulf War Syndrome.

Perhaps Sir Simon and those who nominated him are unaware of two reports in the journal Neuro-epidemiology that once again seem to prove him to be entirely wrong about Gulf War Syndrome.

A study of meteorological and intelligence evidence tracking the fall-out of chemical weapons and the bombing of chemical weapons stores shows that what the troops reported was correct (though denied by the authorities at the time) and provides direct confirmation of repetitive exposure to low level sarin nerve agent resulting from that fall-out (James J Tuite and Robert W Haley; Neuro-epidemiology 2013:40:160-177).

A companion study shows that exposure to low level sarin nerve agent in fall-out from the bombing  by coalition forces in the initial air war contributed to chronic illness which is “manifested by fatigue, fever and night sweats, memory and concentration problems, pathogen-free diarrhoea, sexual dysfunction, chronic body pain and other symptoms compatible with autonomic nervous system dysfunction and damage to the brain’s cholinergic system, referred to as Gulf War illness” (Robert W Haley and James J Tuite; Neuro-epidemiology 2013:40:178-189).

Is it not curious -- disturbing even – that such honours should be bestowed upon a psychiatrist whose beliefs and doctrine do not accord with the published science and whose beliefs have been so compellingly disproven?

Dear Santa

By Joan Mcparland:
Happy Christmas to all my friends. Instead of Christmas cards this year I have donated to ME Research and to The Salvation Army who will home and are feeding a homeless person for £19 over the holiday period. There are two reasons for this, the first is obvious and the second is that we have visited an M.E. patient who is left to live on £71 a week due to benefit cuts. This patient lives alone, has no heat, no food and family who don't understand the illness and say it's just laziness. Members of the support group very kindly gave us bedclothes and food to try to make Christmas a little brighter for this one of many patients left in this intolerable situation this year.

MERRY CHRISTMAS AND A HAPPY NEW YEAR ! and never worry about the size of your Christmas tree!!

Revalidation Update: why doctors who use or promote CBT or GET for ME/CFS will fail their revalidation

10 years ago, the Belgian government opened their five treatment centres for ME/CFS, the so-called reference centres, to cure 70% of ME/CFS patients with CBT and GET as that is what the Belgian Simon Wessely, psychiatrist Prof. Dr. Boudewijn Van Houdenhove, and his Nijmegen colleagues have been saying for decades.

The Belgian government invested a lot of money, €15 million, but they also reviewed things regularly.

Each review showed that CBT and GET were making things worse.

So, the centres got more time, and more money to improve things.

And after 10 years of treating ME/CFS patients with CBT and GET in five Belgian government centres, it is now crystal clear that CBT and GET make things worse in ME/CFS, which means that CBT and GET harm ME/CFS patients.

the do no harm principle is one of the main principles of medicine, and Revalidation of doctors, which has just started in the UK in the Shipman aftermath, is all about protecting patients against doctors who harm them.

so, the Belgian review of using CBT and GET for ME/CFS for 10 years in five government treatment centres has major implications for revalidation of doctors in the UK as this means that doctors who use and /or promote CBT and /or GET for ME/CFS should fail their revalidation.

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 !!!
See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients

See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program

See also: Tom Kindlon's paper: "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"

See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise

See also: PACE trial's Prof Peter White: Exercise causes Immunological damage in Chronic Fatigue Syndrome and is NOT safe

Emily's death from severe ME prompts Simon Wessely's own charity to give an award to Simon Wessely for decades of ignoring clinical evidence

On Tuesday 6.11.2012, Emily Collingridge was buried. She died from severe MEcfs.

Just hours later Simon Wessely was awarded the Simon Wessely award for vested interest psychiatry for leaving millions of severely ill patients to rot, as Simon Wessely and the other CBT psychiatrist have made sure that there is no proper treatment for this severely disabling neuro immune disease.

Which of the following Simon Wessely charities has awarded Simon Wessely an award?

• Action for ME 
• Action for Young people with ME 
• the MRC 
• the science media Centre 
• the RCGP, run by Mrs Simon Wessely a.k.a. Dr Clare Gerada 
• the BMJ 
• Sense about Science 
• the Lancet 
• Ben Goldenacre 
• Max Pemberton

See also: The Independent: British psychiatrist Professor Simon Wessely should be stripped of an award, fellow scientists said last night

See also: Another cracker from the CBT school of denial: “The bastards don’t want to get better”…
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: 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 Independent: British psychiatrist Professor Simon Wessely should be stripped of an award, fellow scientists said last night

Pathetic attempts to silence us all

Picture kindly supplied by HR.



From Horace Reid:

From: Wessely, Simon
Sent: 12 December 2012
To: MAR, Countess
Subject: RE: My letter of 5 December 2012

Dear Lady Mar

May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet?

==============

He and his journalistic catspaws spent the summer of 2011 and the autumn of 2012 stigmatising the ME community in the broadsheets. He purported that he was exposing the "militants". But in fact he and Dr Esther Crawley and others were attempting to silence us all.

All that was public. It was very public.

He abused his power as a prominent member of the medical establishment, to get a platform for his personal perspective on ME, and so far lazy journalism has let him get away with that. The ME patient community was never afforded any proportionate right of reply in the media - until now.

But once the Countess of Mar, Dr. Weir, and Professor Hooper secured a hearing in the mainstream press for the patients, suddenly the "courageous" winner of the Maddox prize gets stage fright.

At the first sign of a fair fight he wants to duck into anonymity.

Pathetic.