Sunday, July 31, 2011

World exclusive: the full text of the death threat to Prof Simon Wessely

I am unable to travel in general , because of the severity of this malingering disease, let alone all the way to London so let's say professor Wessely has come to visit me. I could obviously tell him what I think about Pinocchio psychiatry, but I wouldn't because he would start to cry, just like he did on the BBC a few days ago and who would want to see a crying psychiatrist? So, to play it safe, I would compliment him on his hairstyle. But, I realise now that this would constitute a death threat in the mind of Prof Wessely so I would have to come up with something else, wouldn't I ?

Read more>>

World exclusive: Prof Wessely admits in the BMJ that there were no ME/CFS patients in the ME/CFS PACE trial


It is always nice to read a well-balanced article. It's just a shame that the BMJ, since the days that Prof Wessely was their editor, have failed to publish such an article about ME/CFS.

The article by Mr. Nigel Hawkes is no exception to this rule. A two-year-old can tell you that there are always two sides to the coin but unfortunately Mr. Hawkes has never heard of this principle.

It would have been nice when he mentions that someone has compared Prof Wessely to Josef Mengele, the Nazi doctor, that he would have provided us with a link or another way to check the source, because I've never seen this on the Internet myself. The other thing a proper journalist would then do is ask the question, why would someone compare Prof Wessely to Josef Mengele?

Would it have anything to do with the severely disabled boy, named EAN Proctor, who could not move and was put facedown in a hospital pool by psychiatrists to make him move. When he didn't because he couldn't, he had to be rescued.

Would it have something to do with the nonsense prof Wessely and all the other CBT psychiatrists continue to proclaim about this severely disabling infectious neurological disease?

Would it have something to do with the fact that CBT psychiatrists section people with a severely disabling neurological disease
just because they don't believe the patient and because they don't want to acknowledge the more than 5000 research papers, which show all sorts of physical abnormalities in ME/CFS. By doing so, they disrupt and destroy countless lives. Any doctor who has done casualty or psychiatry can tell you that sectioning a dangerous psychotic patient is usually difficult, why then sectioning someone with a neurological disease is easy beggars belief.

Would it have something to do with the fact that CBT, which is completely useless to put it mildly, is sold to us as a cure, yet many reviews have shown, including the one which was just published in the Journal for psychotherapy, that it is completely useless as patients have been saying for decades.

Would it have something to do with the fact that GET, Graded Exercise Therapy, is torture treatment for ME patients and many of us have had severely relapses and been turned into bedridden patients whose health has been completely destroyed to the point that we are completely dependent on others. And again, many reviews have shown that ME patients are made worse by GET. And we all know that doctors should not use torture on patients but if you are a psychiatrist using torture on ME patients than that is Obviously fine and no problem with any medical regulating authority.

Now, one would think that if a reporter doesn't ask these simple questions, that the editor of the BMJ would tell the reporter to go back to his laptop and answer these questions, otherwise his article will not be published. But as this is the BMJ that asked a psychiatrist for advice on a retrovirus, then obviously this doesn't happen.

The other thing is, as Prof John Coffin has recently stated in a Boston newspaper, many ME patients are seriously disabled. Now I am one of those lucky ones. Let's suppose for a minute that I would like to harass prof Wessely. Now, please remember that severely disabled ME patients like myself are bedridden and totally dependent on others, including writing e-mails or this piece. Now I don't have his e-mail address, but even if I would write him an e-mail and asked him where he bought his glasses or something like that, if he doesn't like it, he would just delete the e-mail.

Now I can try to phone him, even though I don't have his telephone number, but my cognitive dysfunction, and hypersensitivity to noise, mean that I can only make one telephone call a day, lasting only 1 to 2 minutes. And I can tell you there's not a lot you can say in one or two minutes. Apart from the fact that there is no point to phone him, he could obviously put the phone down, but it's apparently easier to say something nice about us in the BMJ than to do this.

Now I am unable to travel in general , because of the severity of this malingering disease, let alone all the way to London so let's say professor Wessely has come to visit me. I could obviously tell him what I think about Pinocchio psychiatry, but I wouldn't because he would start to cry, just like he did on the BBC a few days ago and who would want to see a crying psychiatrist? So, to play it safe, I would compliment him on his hairstyle. But, I realise now that this would constitute a death threat in the minds of Prof Wessely so I would have to come up with something else, wouldn't I ?

Any self-respecting journalist or editor could and should have known this about ME patients, and if they didn't, well, then they should have done some research, even e-mailed me or someone else who is bedridden with severe ME. But as we all know, the CBT psychiatrists and the BMJ, one of the official CBT propaganda magazines, do not want the world and the doctors to find out that ME is a severely disabling, neurological and infectious disease.

There is however a silver lining in this delightful article, which most people haven't noticed, because it's well hidden in between lots of niceness about ME patients.

Prof Wessely admits in the BMJ that there were no ME/CFS patients in his ME/CFS XMRV study


It is always nice to read a well-balanced article. It's just a shame that the BMJ, since the days that Prof Wessely was their editor, have failed to publish such an article about ME/CFS.

The article by Mr. Nigel Hawkes is no exception to this rule. A two-year-old can tell you that there are always two sides to the coin but unfortunately Mr. Hawkes has never heard of this principle.

It would have been nice when he mentions that someone has compared Prof Wessely to Josef Mengele, the Nazi doctor, that he would have provided us with a link or another way to check the source, because I've never seen this on the Internet myself. The other thing a proper journalist would then do is ask the question, why would someone compare Prof Wessely to Josef Mengele?

Would it have anything to do with the severely disabled boy, named EAN Proctor, who could not move and was put facedown in a hospital pool by psychiatrists to make him move. When he didn't because he couldn't, he had to be rescued.

Would it have something to do with the nonsense prof Wessely and all the other CBT psychiatrists continue to proclaim about this severely disabling infectious neurological disease?

Would it have something to do with the fact that CBT psychiatrists section people with a severely disabling neurological disease
just because they don't believe the patient and because they don't want to acknowledge the more than 5000 research papers, which show all sorts of physical abnormalities in ME/CFS. By doing so, they disrupt and destroy countless lives. Any doctor who has done casualty or psychiatry can tell you that sectioning a dangerous psychotic patient is usually difficult, why then sectioning someone with a neurological disease is easy beggars belief.

Would it have something to do with the fact that CBT, which is completely useless to put it mildly, is sold to us as a cure, yet many reviews have shown, including the one which was just published in the Journal for psychotherapy, that it is completely useless as patients have been saying for decades.

Would it have something to do with the fact that GET, Graded Exercise Therapy, is torture treatment for ME patients and many of us have had severely relapses and been turned into bedridden patients whose health has been completely destroyed to the point that we are completely dependent on others. And again, many reviews have shown that ME patients are made worse by GET. And we all know that doctors should not use torture on patients but if you are a psychiatrist using torture on ME patients than that is Obviously fine and no problem with any medical regulating authority.

Now, one would think that if a reporter doesn't ask these simple questions, that the editor of the BMJ would tell the reporter to go back to his laptop and answer these questions, otherwise his article will not be published. But as this is the BMJ that asked a psychiatrist for advice on a retrovirus, then obviously this doesn't happen.

The other thing is, as Prof John Coffin has recently stated in a Boston newspaper, many ME patients are seriously disabled. Now I am one of those lucky ones. Let's suppose for a minute that I would like to harass prof Wessely. Now, please remember that severely disabled ME patients like myself are bedridden and totally dependent on others, including writing e-mails or this piece. Now I don't have his e-mail address, but even if I would write him an e-mail and asked him where he bought his glasses or something like that, if he doesn't like it, he would just delete the e-mail.

Now I can try to phone him, even though I don't have his telephone number, but my cognitive dysfunction, and hypersensitivity to noise, mean that I can only make one telephone call a day, lasting only 1 to 2 minutes. And I can tell you there's not a lot you can say in one or two minutes. Apart from the fact that there is no point to phone him, he could obviously put the phone down, but it's apparently easier to say something nice about us in the BMJ than to do this.

Now I am unable to travel in general , because of the severity of this malingering disease, let alone all the way to London so let's say professor Wessely has come to visit me. I could obviously tell him what I think about Pinocchio psychiatry, but I wouldn't because he would start to cry, just like he did on the BBC a few days ago and who would want to see a crying psychiatrist? So, to play it safe, I would compliment him on his hairstyle. But, I realise now that this would constitute a death threat in the minds of Prof Wessely so I would have to come up with something else, wouldn't I ?

Any self-respecting journalist or editor could and should have known this about ME patients, and if they didn't, well, then they should have done some research, even e-mailed me or someone else who is bedridden with severe ME. But as we all know, the CBT psychiatrists and the BMJ, one of the official CBT propaganda magazines, do not want the world and the doctors to find out that ME is a severely disabling, neurological and infectious disease.

There is however a silver lining in this delightful article, which most people haven't noticed, because it's well hidden in between lots of niceness about ME patients.

Anti-ME brigade play victim

31st July, 2011 Indigo Jo:

In Wessely’s interview on Radio 4, he made the bizarre claim that patients would prefer to be told they had an incurable viral illness than a psychological one:

Yes, certainly, you can feel almost the depths of the passion sometimes when generally people seem to prefer to be diagnosed with a, like a retrovirus, a potentially incurable maybe even fatal illness rather than an illness which, for which we do have some reasonable, but not perfect treatments. I think really a test to the strength of feeling here, I would rather have an incurable virus than a potentially curable disorder, if the cure or treatment involved any acknowledgement that it was social or psychological!

Of course, patients already know they have a physical illness. A well person would not be in their right mind to prefer an incurable retroviral illness to a psychological one that could be relieved through therapy, but these are not well people. That is the difference. There has been much research that demonstrates the existence of various pathologies in ME patients, and Byron Hyde noted in an interview with a Swedish ME organisation that he does not merely diagnose someone with ME but finds and diagnoses these pathologies. Many of them, such as connective tissue disorders, hypothalamic and pituitary dysfunction, osteoporosis and dorsal root ganglionitis, cannot possibly be psychological, and neither can the abnormal brain scans people with ME give. The viral origins of ME (particularly enterovirus as already mentioned) are already well-acknowledged, as are the serious viral infections ME sufferers are prone to, so there is no question of someone choosing to have a viral infection; they already have one.

Read more>>

Significant incidence of adverse events related to anaesthesia in patients with chronic fatigue syndrome


Anaesthesia for patients with idiopathic environmental intolerance and chronic fatigue syndrome

M. McD. Fisher* and M. Rose

+ Author Affiliations

Royal North Shore Hospital of Sydney, St Leonards, NSW 2065, Australia
*Corresponding author. E-mail: mfisher@med.usyd.edu.au
Accepted July 21, 2008.

Next Section
Abstract

Background Idiopathic environmental intolerance syndrome (IEI), formerly known as multiple chemical sensitivity syndrome (MCSS), and chronic fatigue syndrome (CFS) are controversial diseases and there is little information in the literature regarding the appropriate conduct of anaesthesia in such patients.

Methods We studied 27 patients referred to our anaesthetic allergy clinic with IEI and CFS and performed literature and web searches on anaesthesia in these disorders.

Results The patients had a significant incidence of adverse events related to anaesthesia which were not allergic in nature. The adverse effects usually occurred postoperatively and were self limiting. Patients with IEI and CFS are not at risk of anaphylaxis and there is no scientific evidence that any drug or technique is excessively hazardous. Neither our patients nor the review of the scientific literature supported available web-based recommendations for the anaesthetic management of patients with IEL and CFS.

Conclusions We suggest that the anaesthetist may be best to use the technique they would use if the patient did not have CFS or IEI but avoid drugs to which there is a history of adverse response. Anaesthesia is likely to be associated with adverse effects in these patients but the effects are not likely to be severe. A series of recommendations for the safe and harmonious conduct of anaesthesia in patients with CFS and IEI are provided.

Full ARTICLE

Saturday, July 30, 2011

Professor Hooper: Wessely’s Words Revisited

Malcolm Hooper 30th July 2011

with acknowledgement to members of the ME community

Tom Feilden’s notably excited introduction to his interview with Professor Simon Wessely about the disorder ME on the BBC’s Today programme on 29th July 2011 exemplified a failure to exercise the requisite journalistic neutrality when reporting a “story” (http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm).

Feilden seemed excessively eager to inform the nation about Wessely’s claims of how he, a genuine scientist, is harassed and threatened by patients with ME to the extent that his mail has to be routinely scanned before he is allowed to access it and how he needs police protection as he has received death threats.

A dramatic and disturbing story by Wessely, but is it true or is it, as some people believe, an attempt to denigrate sick people and direct attention away from the ever-growing body of biomedical evidence which invalidates his own now-disproven beliefs about the disorder?

When challenged in the past to provide actual evidence – corroborated by the police -- of such threats to his life, did Wessely produce any evidence? The police take death threats seriously so each would be allocated a crime incident number. Have any of these alleged death threats been substantiated? Have there ever been any prosecutions and have they ever been reported in the press?

Does Prof Simon Wessely suffer from false harassment beliefs?



Prof McClure, emails, legitimate questions and disrespect

By: Chris Douglas:

This email was sent to Prof McClure on 23.12.10. It raises valid concerns and questions about her intention to test the blood of participants in the WPI/NCI's UK XMRV study. The read receipt was received on 9.2.11 (six weeks later) and said "Your message was deleted without being read". . If this is the level of disrespect shown to patients who ask legitimate questions about research that could have such an enormous impact on their lives, then researchers should not be surprised if patients feel insulted and marginalised and behave accordingly. .

Dear Professor McClure,

I am writing on behalf of myself and other participants in the UK research study being run by the Whittemore Peterson Institute at the University of Nevada (WPI) and the US National Cancer Institute (NCI). As you are aware, this study is testing participants for the presence of XMRV.

It has come to our attention that you are willing to accept blood samples from participants of this study in order to run your own tests for the presence of XMRV. In response, we wish to raise the following questions and make the following points. Firstly, which methods will be used to detect XMRV in blood samples and will these methods replicate those used in the original Science paper and/or those published in AIDSReviews in 2010?

If the Science methods will not be used, please can you clarify why they will not be used? Also, if these methods will not be used, please can you clarify how findings from your own research can be deemed robust in terms of potential validation of, or challenge to, those of the WPI and the NCI? Specifically, will you be using an antibody test and, if so, whose test will this be? We understand that Imperial has not developed its own antibody assay and that previous blood samples from the college have been sent to a lab in Switzerland that works exclusively with mice retroviruses and not human MLVs. Please can you confirm if you will be using an antibody assay developed by the WPI/NCI and, if not, why not? Also, will you be using a clinical control from the WPI or the NCI? In addition to questions about the test methodologies, we are concerned about the ethics and professionalism of taking blood from participants of a study that has yet to be published and would appreciate your comments on whether this is acceptable, standard practice in the scientific world. With respect to the aims of your research, we would appreciate clarification of the reasons for your continued pursuit of XMRV in ME patients given your ongoing denial of the retrovirus’ existence as a human pathogen and its links with ME.

Throughout this year, patients have witnessed your apparent unwillingness to work collaboratively with, particularly, the WPI, as well as various public attacks on their work (e.g. on Australian radio, in the BMJ and via the Science Media Centre press release about the Lo et al paper). You are also on record as saying that “Nothing on God's Earth could persuade me to do more research on CFS [i.e. ME]” after receiving “ghastly” emails from some patients.

More recently, we have seen your involvement in the orchestrated, simultaneous publication (in Retrovirology) of four research papers (plus one commentary) that imply XMRV is a lab contaminant. So close to Christmas, the timing of this onslaught was cruel and callous in the extreme and demonstrates little care and compassion for the patients who (one would assume) the research is intended to help. I am sure that you will understand how these actions and comments would make patients highly suspicious of your motives in drawing their blood and we would appreciate hearing your response to these concerns so that we may understand better the rationale behind any further tests.

This insight would be useful not only for those participating in the WPI/NCI study, but also for other ME patients who you may wish to recruit.

Yours sincerely,
By: Chris Douglas

Chronic fatigue syndrome: understanding a complex illness


Stephen T. Holgate, Anthony L. Komaroff, Dennis Mangan and Simon Wessely

Abstract | Chronic fatigue syndrome (CFS) is a debilitating illness that affects many
people. It has been marred by controversy, from initial scepticism in the medical
community about the existence of the condition itself to continuing disagreements
— mainly between some patient advocacy groups on one side, and researchers
and physicians on the other — about the name for the illness, its aetiology, its
pathophysiology and the effectiveness of the few currently available treatments.
The role of the CNS in the disease is central in

Friday, July 29, 2011

BBC News: ME research should focus on physical symptoms



See also: Research funding for ME should be directed into physical causes, medical experts urge today

Research funding for ME should be directed into physical causes, medical experts urge today


Friday 29 July 2011 by Will Stone, Health & Social Affairs Reporter, morningstaronline.co.uk:
willstone@peoples-press.com

Research funding for ME and chronic fatigue sufferers should be directed into physical rather than psychological causes, medical experts urged today.

ME Association charity medical advisor Charles Shepherd said there was a great deal of frustration that all government funding was being focused on whether the illness has any psychological causes.

Mr Shepherd spoke out in response to reports that a small group of protesters were intimidating scientists investigating ME to ensure that their work primarily focuses on whether the condition is caused by a virus.

Although he described the attitude of protesters as "completely unacceptable" he said they had a justifiable complaint as there has been "almost nil" government-funded research into the biomedical aspect of the illness.

"Yes, there may be a psychological input to the illness in some people but the anger, the frustration, is the fact that all this effort, all this government funding, has been going just to the psychological side," said Mr Shepherd.

ME Association spokesman Tony Britton stated that physical-based research would be far more appropriate.

He told the Morning Star: "There's still a huge amount of ignorance surrounding ME, it's a vastly misunderstood illness.

"It's hugely frustrating that there are a lot of sceptics in the medical profession who claim the condition does not exist and these research-funding decisions do nothing to disprove them."

A spokeswoman for the Medical Research Council conceded that more research was needed into all aspects of the condition, including what causes the illness, and said the body has announced plans to invest up to £1.5 million investigating its underlying causes.

willstone@peoples-press.com

ME charity slams 'misuse' of funding


Friday 29 July 2011 by Will Stone, Health & Social Affairs Reporter, morningstaronline.co.uk:
willstone@peoples-press.com

Research funding for ME and chronic fatigue sufferers should be directed into physical rather than psychological causes, medical experts urged today.

ME Association charity medical advisor Charles Shepherd said there was a great deal of frustration that all government funding was being focused on whether the illness has any psychological causes.

Mr Shepherd spoke out in response to reports that a small group of protesters were intimidating scientists investigating ME to ensure that their work primarily focuses on whether the condition is caused by a virus.

Although he described the attitude of protesters as "completely unacceptable" he said they had a justifiable complaint as there has been "almost nil" government-funded research into the biomedical aspect of the illness.

"Yes, there may be a psychological input to the illness in some people but the anger, the frustration, is the fact that all this effort, all this government funding, has been going just to the psychological side," said Mr Shepherd.

ME Association spokesman Tony Britton stated that physical-based research would be far more appropriate.

He told the Morning Star: "There's still a huge amount of ignorance surrounding ME, it's a vastly misunderstood illness.

"It's hugely frustrating that there are a lot of sceptics in the medical profession who claim the condition does not exist and these research-funding decisions do nothing to disprove them."

A spokeswoman for the Medical Research Council conceded that more research was needed into all aspects of the condition, including what causes the illness, and said the body has announced plans to invest up to £1.5 million investigating its underlying causes.

willstone@peoples-press.com

It is the lack of quality of Psychiatric science and its distorted reasoning that enrages ME sufferers


David Allaby, publicservice.co.uk, 29 July 2011:


No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with "the scientist" interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.

This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC's Tom Fielden: "People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.

"That really attests to the strength of feeling here – I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological."

No, Dr Wessely, I suspect that that is not what ME sufferers feel – not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed – and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.

They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.

Dr Wessely accuses his hostile critics of "trying to make me into a leper". Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee's Professor Jill Belch said: "It's important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

They obviously didn't tell Dr Wessely. Anyone whose life has been shattered by ME or CFS – they can be separated – would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.

I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story – the tens of thousands of people in the UK whose lives have been almost shut down by ME.

I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.

David Allaby

The real victims of ME are those with the disease


David Allaby, publicservice.co.uk, 29 July 2011:


No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with "the scientist" interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.

This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC's Tom Fielden: "People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.

"That really attests to the strength of feeling here – I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological."

No, Dr Wessely, I suspect that that is not what ME sufferers feel – not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed – and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.

They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.

Dr Wessely accuses his hostile critics of "trying to make me into a leper". Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee's Professor Jill Belch said: "It's important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

They obviously didn't tell Dr Wessely. Anyone whose life has been shattered by ME or CFS – they can be separated – would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.

I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story – the tens of thousands of people in the UK whose lives have been almost shut down by ME.

I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.

David Allaby

0% (yes, ZERO) of ME research is allocated to disease aetiology

by Chris Douglas on Friday, July 29, 2011 at 2:30pm
In 2006, the UK Clinical Research Collaboration published a report called ‘UK Health Research Analysis (2006)’.

This report confirmed that ~68% of research funds across all illnesses (as spent by the 11 largest Government and charity funders of health research) was allocated to disease aetiology (causation) and underpinning.

In contrast, between 2000-10, the Medical Research Council allocated 0% (yes, ZERO) of ME research funds (over £4m in total) to aetiology and underpinning.

Instead, over 80% of these funds were allocated to testing psychiatric and self-help therapies.

Psychiatric therapies 62.2%
Self help therapies 19%
GP training on ‘medically unexplained symptoms’ 8.2%
Risk markers (shared with IBS) 4.5%
Ethnicity prevalence 3.5%
Population study (shared with IBS and CWP) 2.6%

If cancer patients (a) saw the MRC spend just £4m on their illness over ten years and (b) saw 80% of that allocated to psychiatric research and none of it to aetiology, wouldn’t they be a bit cross too ?

Why ME patients are fed up with psychiatric research

by Chris Douglas on Friday, July 29, 2011 at 2:30pm
In 2006, the UK Clinical Research Collaboration published a report called ‘UK Health Research Analysis (2006)’.

This report confirmed that ~68% of research funds across all illnesses (as spent by the 11 largest Government and charity funders of health research) was allocated to disease aetiology (causation) and underpinning.

In contrast, between 2000-10, the Medical Research Council allocated 0% (yes, ZERO) of ME research funds (over £4m in total) to aetiology and underpinning.

Instead, over 80% of these funds were allocated to testing psychiatric and self-help therapies.

Psychiatric therapies 62.2%
Self help therapies 19%
GP training on ‘medically unexplained symptoms’ 8.2%
Risk markers (shared with IBS) 4.5%
Ethnicity prevalence 3.5%
Population study (shared with IBS and CWP) 2.6%

If cancer patients (a) saw the MRC spend just £4m on their illness over ten years and (b) saw 80% of that allocated to psychiatric research and none of it to aetiology, wouldn’t they be a bit cross too ?

BBC News: Scientists working on Chronic Fatigue Syndrome (CFS), or ME, are abusing and intimidating patients


Professor Simon Wessely, of King's College London Speaking on the programme on Friday, and ME Association's Dr Charles Shepherd condemned the abuse, but said sufferers had a justifiable complaint that no government-funded research was looking at the bio-medical aspects of the illness.


Dr Shepherd said that while he condemned the intimidation, there was frustration that all the Government funding was focused on whether the illness has a psychological cause.

He added: ''This sort of personal intimidation ... is I believe completely unacceptable and it is also counterproductive because it doesn't stop the type of research going on and it puts good researchers off, there is no doubt about that.

''I think you need to put this into the context of the fact that we have about 250,000 people with this illness. A very, very tiny minority of these people are involved in this sort of behaviour.

''But what people do however have a justifiable complaint about is that there has been very little, or almost nil, Government-funded research into the biomedical aspect of this illness.

''We have a whole spectrum of people there who have an illness ranging from a physical illness at one end to a psychiatric cause of chronic fatigue at the other, and it is rather like putting everyone who has a chronic headache, from migraines to brain tumours, under a chronic headache syndrome saying that they all have the same cause and the same treatment.''

He added: ''Yes, there may be a psychological input to the illness in some people but the anger, the frustration, is the fact that all this effort, all this Government funding, has been going just to the psychological side.

''I don't want to see scientists leaving the field. I want a debate with scientists and it's the way I feel we should do it. It's the way I do it.

''Scientific debates, criticism is healthy but it should be done through the medical journals, through constructive criticism. As I said, intimidation, personal abuse, has no role to play in this whatsoever.''

Thursday, July 28, 2011

Professor Hooper in the BMJ: Professor Wessely, Peter White et al do not study ME; they use their own Oxford criteria to select people with psychiatric disorders as classic ME is too burdensome for them


Re:History of prejudice
Malcolm Hooper, Emeritus Professor of Medicinal Chemistry
University of Sunderland
Re: Ending the stalemate over CFS/ME. Godlee 342:doi:10.1136/bmj.d3956

The editor of the BMJ refers to the "unproductive standoff" in relation to the long-running disagreement about the nature of ME between the evidence-based biomedical school dating back to at least 1956 (with the WHO classifying ME as a neurological disorder in 1969) versus the ideology of the "psychosocial" school, whose vested interests in maintaining their idiosyncratic categorisation of ME as a mental disorder are a matter of public record 1.

That standoff includes the psychosocial school directing in 1992 that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms2; in 1994 ME was described by them as merely "a belief"3; in 1996 they recommended that no investigations should be performed to confirm the diagnosis4; in 1997 they referred to ME as a "pseudo-disease diagnosis" 5, and in 1999 they 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" 6.

In his letter to the BMJ7 Peter White et al dismiss key symptomatology of ME including ataxia, palpitations with cardiac arrhythmias and loss of thermostatic stability as being of dubious validity, yet those symptoms are specifically required for a diagnosis of ME as stipulated by 26 international experts from 13 countries who between them have 400 years experience of diagnosing over 50,000 patients8.

These experts base their latest criteria on biomedical research and clinical experience of widespread inflammation and multisystemic neuropathology found in ME.
Although claiming to do so, Peter White et al do not study ME; they use their own Oxford criteria that select people with psychiatric disorders in which chronic fatigue is a feature9 .



White says their own criteria are easier to use and insists that they do not exclude those with ME simply because he believes ME to be a mental disorder.
Furthermore, in his letter to the BMJ Peter White complains that the criteria which define people with classic ME are too burdensome for doctors to use.
When did the careful assessment of sick people stop being part of the practice of medicine, especially when the disorder in question is known to be a complex multi-system disorder?
References
1. http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf
2. Medical Research Council Highlights of the CIBA Foundation Symposium on CFS, 12-14th May 1992, reference S 1528/1 (section entitled "The Treatment Process"), now held in the MRC secret files on ME at the National Archive, Kew, and closed not for the customary 30 years but for the unusually lengthy period of 73 years
3. "Microbes, Mental Illness, The Media and ME - The Construction of Disease". Simon Wessely; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, 12th May 1994 (transcript and Wessely's own working notes)
4. Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners; Royal Society of Medicine (CR54), October 1996
5. "Chronic Fatigue Syndrome and Occupational Health"; A Mountstephen & M Sharpe; Occupational Medicine 1997:47:4:217-227
6. "ME. What do we know - real physical illness or all in the mind?" Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde (transcript)
7. BMJ 2011:343:d4589
8. Journal of Internal Medicine: Accepted Article: doi:10.1111/j.1365- 2796.2011.02428.x
9. JRSM 1991:84:118-121
Competing interests: I am a long term advocate for people with ME and have published and lectured extensively on their plight and the injustices they and their carers have suffered as a conseqence of the deeply flawed ideological views of some psychiatrists and the Government agencies that have persistently denied or ignored the massive volume of peer-reviewed, published biomedical evidence.


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

XMRV - The case against contamination

by Bob on July 2011, forums.phoenixrising.me:

Preface

I’ve collected together some of my posts from the forum about XMRV and contamination.
The numbers in brackets, e.g. (1), point you towards the 'references' at the bottom of the page, for further info.

In this blog, I discuss the evidence that I believe demonstrates that each of the contamination theories relating to XMRV is not based on conclusive evidence, or even based on the balance of evidence.

With such an overwhelming number of negative XMRV/CFS studies published, it is easy to assume that XMRV in CFS patients is just a case of contamination, and that the WPI's research is just plain wrong.

I am not trying to argue that contamination isn’t an issue to be taken seriously, but I am presenting the evidence to show that the case for contamination has not been proven, and that there is still a lot more research to be carried out before we gain a good knowledge about XMRV, and any related viruses.

I've avoided detailed analyses of the specifics of individual studies, but I've provided links for further information, in the 'references' section.

I'm not going to cover all the issues, but I'm going to try to explain why our total knowledge about XMRV is still in its infancy and why it is far from proven that the XMRV discovered in CFS patients is due to contamination.


Introduction

Although there have now been a large number of negative XMRV studies, there has also been a handful of positive XMRV studies (14), mostly unrelated to CFS. On top of this, there are a large number of ongoing investigative XMRV studies (14), which, for example, look at the cellular action of XMRV. There is still only one published positive study that shows a convincing association between XMRV and CFS, but there are reportedly a number of positive XMRV/CFS studies in the pipeline (15).

The Alter & Lo study which detected P-type MLV-related viruses hasn't satisfied everyone, in terms of it being an XMRV validation study, but the results of the Alter/Lo study are interesting in their own right, and have probably given added impetus to the XMRV reseearch.

There is a great deal of ongoing scientific investigation into XMRV, and unfortunately it's probably going to be a long time before there are any firm conclusions about if, and how, XMRV affects ME/CFS patients and the rest of the population.

It has been stated by various people, that XMRV is a contaminant, or that XMRV is not a real virus, or that there is no association between XMRV and CFS/ME, or that XMRV is not a human virus. The CFS community has also been told that “it’s a bust”, and that we should forget about XMRV and not worry ourselves about it.

But all of these statements and conclusions are currently just opinions because there is no scientific consensus, as the many published research papers offer conflicting results and evidence. There is so much that we don't know about XMRV that it is far too early to draw any conclusions from the relatively tiny amount of research that has been carried out so far.


Contamination theories

These are the contamination theories that we have to date:

Theory 1. Detection of XMRV is due to false PCR readings (i.e. cross reactivity).
Theory 2. XMRV is not a virus but only mouse DNA contamination.
Theory 3. XMRV is purely a mouse virus.
Theory 4. XMRV is DNA contamination from a cell line.
Theory 5. XMRV is purely a cell line virus (Purely a lab artifact).
Theory 6. XMRV is a wild human virus but doesn't exist in CFS patients.

The WPI’s research and the original Science paper have been accused of all of these.

There seems to be a general scientific consensus that the first 4 have now been disproved, and that XMRV is actually a real virus. That doesn’t make the WPI’s research immune from the first 4 contamination theories, but the strength of the WPI’s original Science paper is such it is hard for these theories to stick.

So let’s go through each of these theories in turn... Read more>>

WHAT THE International Consensus Criteria FAIL TO ADDRESS

WHAT THE ICC FAILS TO ADDRESS
by Karina Maier on Wednesday, July 27, 2011 at 6:21pm

While I am very happy about the fact that our specialist assembled and created an International Consensus Criteria I am not so happy with some of the content. On top of the list: the ICC fails to address the fact that a significant number of mothers who are diagnosed with ME/CFS have one or several children suffering also ME/CFS, or other neuro-immune diseases such as Autism, Asperger and so forth.

It is clear that this criteria is supposed to be the first step in establishing a quantitative score for establishing measurable factors that are most relevant to the illness, but I think the fact that SEVERAL family members are suffering from ME/CFS, or other neuro-immune diseases, is very RELEVANT for future research!

If the ICC shall be a guidance for clinicians and future research the disease has to be addressed as for what it is - an infectious disease where often several family members are afflicted by various neuro-immune diseases.

Additionally, the International Consensus Criteria is supposed to be "guidelines specifically for the use of by the primary care physician in the hope of improving rapid diagnosis and treatment by first line medical provider", but it has failed to endorse sufficient recommendation for physicians caring for children with ME.

It is very important to carefully pace mental and physical activities of children suffering of ME and it can not be stated enough: a reduced school curriculum is an integral part of treating children with ME and protects children from further deterioration due to mental and physical overexertion. Recommendation should emphasize a strongly reduced school attendance and reduced school curriculum, avoidance of sensory overload (such as loud class rooms), preventention of exposure to flu out brakes in schools, no competitive sports activities and so forth. In moderate to sever cases school attendance might be not advisable at all. Home schooling, mixed with short school attendance is often a better solution.

There has to be clear guidelines for pediatric physician, general physician, schools, school boards, teachers and any other agency dealing with children. Not only to protect children with ME but also to protect parents from child protective services, who are more often than not miss-informed by miss-informed treating physician, - which leads to the unimaginable tragedies of sick children being removed from parents and placed in foster care, or even mental institutions.

Karina

Wednesday, July 27, 2011

XMRV in Blood Cells of Sjögren's Syndrome Patients


NIH Summer Poster Day 2011 is scheduled for Thursday, August 4th 2011:

(It will be held in the Natcher Conference Center (Building 45) from 9:00 am to 3:00 pm. If you want to participate in Summer Poster Day, you must sign up in advance, and your mentor must approve your poster title. You can sign up to present a poster beginning June 1. The deadline to sign up is Wednesday, July 6 at 5:00 pm (EDT). All submissions must be approved by participants' preceptors by Friday, July 8 at 5:00 pm (EDT).)



440. Catherine W Cai Detection of Xenotropic Murine Leukemia Virus-Related Virus (XMRV) in Blood Cells of Sjögren's Syndrome Patients Emory University Hometown: Atlanta, GA Dr. Gabor Illei, Preceptor Molecular Physiology and Therapeutics Branch

https://www.training.nih.gov/summer_poster_day_2011

https://www.training.nih.gov/assets/Summer_Poster_Day_Program_2011.pdf

Tuesday, July 26, 2011

Dr Myhill News: GMC CAVES IN! ALL SANCTIONS REMOVED!


Message from Craig Robinson:---
GMC CAVES IN! ALL SANCTIONS REMOVED! NO RESTRICTIONS LEFT IN FORCE. SARAH CAN PRACTISE TOTALLY AS NORMAL. 100% VICTORY!!!!!
Craig Robinson

Please circulate widely.

Larry died soon after being found well enough to work. His last words: "It's a good job I'm fit for work."

Larry Newman was assessed by an Atos staff member and awarded zero points. To qualify for sickness benefit he needed 15. He died from lung problems soon after

Amelia Gentleman, guardian.co.uk, Sunday 24 July 2011:

Larry Newman attended a work capability assessment in March 2010, when a degenerative lung condition made it impossible for him to go on working in the wood veneer showroom where he had spent much of his career. His weight had dropped from 10 to seven stone, and he had trouble breathing and walking.

The Atos staff member who carried out the medical test awarded him zero points. To qualify for employment and support allowance, the new sickness benefit, he needed to score 15 points, and in July he received a letter from jobcentre officials stating that he was not eligible for the benefit (worth around £95 a week) and would be fit to return to work within three months.

He was devastated by the decision, and dismayed to note a number of inaccuracies in the report that accompanied the letter. He decided to appeal against the decision, but before three months was up he died from his lung problems.

His widow, Sylvia Newman, recalls that one of the last things he said to her, as doctors put him on a ventilator, was: "It's a good job I'm fit for work." He was trying to make her laugh, she says, but it was also a reflection of how upset he had been by the conclusion of the medical test.

"He was so hurt by it. It made him so upset that they thought he was lying, and he wasn't," she says. "I think it added to him just giving up."

Mrs Newman has lodged an official complaint, with the help of Citizens Advice staff, highlighting 12 inconsistencies in the report by the Atos assesser. It said her husband had been unaccompanied. "I was with him, although in his medical report they claimed that I was in the waiting room," she says. The report says that Mr Newman's pulse was fine, that he had no scars on his chest and that he managed to climb on to the examination bed without any problem. Mrs Newman says that her husband did not get on to the examination bed, that his pulse was not taken, and that the assesser did not look at his chest, otherwise he would have seen scars.

"He never touched Larry, he never took his pulse.There were endless inaccuracies," she added, describing the report as "make-believe".

Read more>>

See also: 3 more assessed "fit for work" by ATOS die

Monday, July 25, 2011

Prof Jason: only 10% of patients identified as having CFS actually had ME (Myalgic Encephalomyelitis)


Posted on July 23, 2011, 11:12 pm by a rainbow at night:

“In a study of the Reeves empirical criteria [for CFS], Jason et al reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME.“

Read more>>

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

The best definition for M.E. (Myalgic Encephalomyelitis) is Ramsay’s definition of 1986


Posted on July 23, 2011, 11:12 pm by a rainbow at night:

Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs. The best definition for M.E. is Ramsay’s definition of 1986, which describes the key feature being “muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis.” He goes on to write, “Without it, I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” [A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988).]

After several outbreaks of what was undoubtedly M.E., the CDC ... Read more>>

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

"Why I think the new Myalgic Encephalomyelitis International Consensus Criteria are not much better"


Posted on July 23, 2011, 11:12 pm by a rainbow at night:

I’m sorry I haven’t posted with my IGeneX results, yet. But right now I feel like talking about the new International Consensus Criteria for Myalgic Encephalomyelitis. And no, I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it…

First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look to ... Read more>>

Sunday, July 24, 2011

Short version of the International Myalgic Encephalomyelitis Consensus Criteria for GP's and consultants



Myalgic Encephalomyelitis: International Consensus Criteria
J Intern Med. 2011. doi: 10.1111/j.1365-2796.2011.02428.x

Carruthers BM, van de Sande MI, de Meirleir KL, Klimas NG, Broderick G, Mit-chell T, Staines D, Powles ACP, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, Mikovits JA, Miwa J, Murovska M, Pall ML, Stevens S.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

MYALGIC ENCEPHALOMYELITIS:
INTERNATIONAL CONSENSUS CRITERIA

Adult and Pediatric
Clinical and Research

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions.
Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features.
Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient:
 will meet the criteria for post-exertional neuroimmune exhaustion (A),
 at least one symptom from three neurological impairment categories (B),
 at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and
 at least one symptom from energy metabolism/transport impairments (D).

Short version of the International Myalgic Encephalomyelitis Consensus Criteria for GP's and consultants.pdf

FULL version of the International Myalgic Encephalomyelitis Consensus Criteria.pdf

The PACE trial: almost £5 million spent on, well, nothing, you couldn't make it up!


Posted by nmj:

The current chaos of criteria is why we have people all over the Internet claiming to have recovered from ME, touting nonsense about how 'believing they can get better, got them better'.

It's because of hopelessly flawed criteria that these people have been told they have ME in the first place, or more worryingly may have diagnosed themselves.

This is why we are so angry about the PACE trial, almost £5 million being spent on, well, nothing. (PACE used the Oxford criteria, devised by UK psychiatrists, which actually exclude neurological disorders, so that people who are a bit fed up and deconditioned can actually be diagnosed with ME. Yes, you couldn't make it up!)
Dr Esther Crawley and others have revived the recent BMJ thread on ME and posed the question: Will adopting the Canadian criteria improve the diagnosis of chronic fatigue syndrome? The answer is, of course it will! Dr Crawley and her colleagues are - unsurprisingly - dragging their heels ... Read more>>

Saturday, July 23, 2011

Kevin Short: Myalgic Encephalomyelitis International Consensus Criteria' by Dr Bruce Carruthers et al, a landmark document


Kevin Short, July 2011

M.E., NEW INTERNATIONAL CRITERIA AND THE END OF
'FATIGUE' AND 'OPATHY' TERMINOLOGY?

In the light of recent clarifications and expert findings I believe that use of the terms 'Chronic Fatigue Syndrome/CFS', 'Fatigue Syndrome/FS', 'Fatigue', 'CFS/ME', Myalgic Encephalopathy and the like in reference to Myalgic Encephalomyelitis patients is clearly unjustified, harmful and needs to cease.

The new 'Myalgic Encephalomyelitis: International Consensus Criteria'[1] by Dr Bruce Carruthers et al was published online in the Journal of Internal Medicine in July 2011 – doi: 10.1111/j.1365-2796.2011.02428.x.

This landmark document is an outstanding evidence-based patient diagnosis and research subject selection guideline that warrants widespread application. It was produced by an erudite international expert panel that between them have seen many thousands of ME patients in 13 countries and have engaged with both long-established and cutting-edge evidence from clinical practice and research settings. The document is designed for adult and paediatric clinical and research use and it is to be followed up with further supportive resources from the consensus panel as specified.
Set against a context of unhelpful, opaque and profound international medico-political controversy on disease terminology and related matters, the new international consensus document brings much needed clarity; stating:

“The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).”[2]

The new international consensus document then goes on to cite evidence in the scientific literature underpinning myalgic encephalomyelitis terminology and its ICD classification and sets out problems with various broad-ranging patient selection criteria that give misplaced emphasis to 'fatigue':
“The problem with broadly inclusive criteria is that they do not select homogeneous sets of patients. The Centers for Disease Control prevalence estimates increased tenfold from 0.24% using the Fukuda criteria to 2.54% using the Reeves empirical criteria. Jason et al suggest there are flaws in Reeves’ methodology because it is possible to meet the empirical criteria for ME without having any physical symptoms and it does not discriminate ME/CFS patients from those with Major Depressive
Disorder. Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments, and waste scarce research funds.”[3]

“Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has “chronic fatigue” attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS.”[4]
The current revision/edition of the WHO International Classification of Diseases that most countries subscribe to, including the UK, is the tenth one (ICD-10). A few countries use their own 'clinical modification' version of the WHO ICD. The standard/unmodified WHO ICD-10 primary tabular list uses the term 'Postviral Fatigue Syndrome/PVFS' as the primary disease label with 'Benign Myalgic Encephalomyelitis/ME’ as its synonym. PVFS/ME is classified in ICD-10 under 'Diseases of the Nervous System' at section G93.3 (Other disorders of brain) and nowhere else. In doing so the WHO implicitly recognises the history of viral involvement in the disease and specifically excludes the disease from mental and behavioural disorders such as 'Fatigue Syndrome' - which is classified separately and exclusively in ICD-10 under 'Mental and behavioural disorders' at section F.48.0 (Other neurotic disorders). The WHO have confirmed on many occasions that such disease classification is always exclusive and that listed disease entities are not classified under more than one rubric and are not interchangeable.

Taxonomical confusion has arisen in this field for three main reasons. Firstly, certain psychiatrists have made and published widespread claims that are factually incorrect and at odds with the WHO (see below). Secondly, because a few countries, including the USA, use their own unique “clinical modification” version of the WHO ICD which is different from the world standard. Thirdly, because the WHO did not put all of the details of their ICD 10th Revision in their online website summary. For accuracy on ICD-10 classification therefore, full reference needs to be made to the three-volume published/book version[5].

The term 'Chronic Fatigue Syndrome/CFS' (not to be confused with ICD-10-F.48.0 'Fatigue Syndrome/FS') is in fact not entered/categorised anywhere in the ICD-10 tabular list whatsoever and is not therefore an ICD-10 disease classification/term in its own right. It is merely listed in the ICD-10 alphabetical index as a term by which PVFS/ME (ICD-10-G93.3) may be referred to but crucially, in clarifying this point to members of the UK ME community, the WHO unequivocally stated:
“ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The index (i.e. volume iii) cannot be taken as definitive.” [Dr Robert Jacob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO HQ, Geneva. 4th February 2009].

Prior to this clarification there was understandable use of the compromise term 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome' or 'ME/CFS'[6] (as opposed to 'CFS/ME' - see below) by many ME activists given that so many genuine ME patients have unfortunately been labelled and studied as CFS patients. Now that the WHO and the new Myalgic Encephalomyelitis International Consensus Criteria have added clarity to matters, use of the compromise ME/CFS
terminology is no longer justified in my view: It is far better to simply stick to ICD-10 recognised 'Myalgic Encephalomyelitis' terminology in our literature and relegate to a caveat or footnote the fact that many genuine ME patients and research subjects have been labelled as CFS. Surely the best way for ME activists to assist fellow patients that are inappropriately labelled with CFS is to refuse to adopt the latter terminology any longer and insist that patients are examined, diagnosed and included in biomedical research studies on the scientifically justifiable basis set out in the new Carruthers et al international consensus criteria?

Alongside the problem of various “fatigue” labels diverging from WHO-IDC-10 Myalgic Encephalomyelits taxonomy, in the UK, we have the added problem of the use of Myalgic Encephalopathy by Dr Charles Shepherd and his associated charity. This wholly unclassified label was subsequently taken up by The National Institute for Health and Clinical Excellence (NICE) in production of its psychosocial 'CFS/ME' clinical guideline 53. The “encephalopathy” terminology is very broad-ranging and, given that most medical dictionaries state something along the lines of “the hallmark of encephalopathy is an altered mental state”[7] is wide open to psychosocial misattribution in my view. Moreover, to reiterate the views of the expert international consensus panel, the encephalomyelitis terminology is evidence-based and entirely justified:

“In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology”[8]

With regard to the encephalopathy matter therefore, Dr Bruce Carruthers, lead author of the international consensus criteria, earlier cautioned:
“The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since - opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion."[9]

Even if the reason for the '-opathy' name change at the UK ME Association was well-meaning it is clear that Dr Carruthers' concerns on motives behind terminology change are broadly justified. Consider for example the case of Professor Simon Wessely who, in spite of the tenth edition of the International Classification of Diseases and a large body of biomedical evidence claimed “that ME is simply a belief, the belief that one has an illness called ME”[10]. Wessely then went on to misrepresent Myalgic Encephalomyelitis in a various professional fora as mental illness and misrepresent WHO ICD-10 taxonomy as merely patients' own "lay label". He did this, by his own admission, in order to pursue a "constructive labelling" "strategy" of having physical ME gradually subsumed into the rubric of mental disorders - by "gradually expanding understanding of the condition to incorporate the psychological and social dimensions." Thus, in The British Medical Journal Professor Wessely tellingly stated:
“One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome. It may seem that
adopting the lay label endorses the implicit causal theory and reinforces the perceived disability. For better or worse, the medical profession has lost the monopoly on naming conditions, and rejecting lay terms can needlessly alienate patients. A compromise strategy is “constructive labelling,” expanding on the lay name. It would mean treating chronic fatigue syndrome as a legitimate illness, acknowledging that it may have a viral trigger (as many patients report), while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the chief medical officer’s report of the term chronic fatigue syndrome/myalgic encephalitis reflects such a compromise, albeit an uneasy one."[11]
Myalgic Encephalomyelitis is WHO ICD-10 disease classification, not the "lay label" that Professor Wessely misleadingly claims. ME is rightly classified in ICD-10 as neurological/physical disease and accompanied by a large body of biomedical evidence. ME is not "simply a belief" as Wessely disgracefully asserts. Caveat Emptor therefore: the psychiatrists' “constructive [re]labelling” “strategy” gradually moves 'PVFS/ME' to 'ME/CFS' to 'CFS/ME' to 'CFS' to 'FS' to 'F' etc in disregard of a growing body of biomedical evidence and all in aid of "gradually expanding understanding of the condition to incorporate the psychological and social dimensions." In my view such a questionable shift is aided by changing to an „encephalopathy’ label “the hallmark of [which] is an altered mental state”

Returning to the new International Consensus Criteria, not only do the authors cite evidence against use of 'fatigue' terminology and in support of encephalomyelitis pathology, in their concluding remarks, Carruthers et al state:
“Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”[12]

I could not agree more, but if the ME community want state agencies to properly use ICD-10 Myalgic Encephalomyelitis disease taxonomy then we need to consistently lead by example.

Kevin Short, July 2011.
contact@angliameaction.org.uk

This text is available online as a PDF document at:
www.angliameaction.org.uk/docs/new-international.pdf
[Permission to repost]
ENDNOTES:
[1] Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 20 July 2011. Bruce M Carruthers, Marjorie I van de Sande, Kenny L De Meirleir, Nancy G Klimas, Gordon Broderick, Terry Mitchell, Don Staines, Peter Powles, Nigel Speight, Rosamund Vallings,
Lucinda Bateman, Barbara Baumgarten-Austrheim, Nicoletta Carlo-Stella, John Chia, Austin Darragh, Daehyun Jo, Don Lewis, Alan R Light, Sonya Marshall-Gradisbik, Ismael Mena, Judy A Mikovits, Kunihisa Miwa, Modra Murovska, Martin L Pall, Staci Stevens. Please cite this article as; doi: 10.1111/j.1365- 2796.2011.02428.x Available online at:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
[2] Ibid.
[3] Ibid.
[4] Ibid.
[5] For accuracy in ascertaining WHO ICD-10 disease classification, full reference needs to be made to the three-volume published/book version. The bibliographic details of all three volumes are:
- International Statistical Classification of Diseases and Related Health Problems -
Tenth Revision – Second Edition: Volume 1 – Tabular List – ISBN: 92 4 154649 2.
- International Statistical Classification of Diseases and Related Health Problems -
Tenth Revision – Second Edition: Volume 2 – Instruction Manual – ISBN: 92 4 154653 0.
- International Statistical Classification of Diseases and Related Health Problems -
Tenth Revision – Second Edition: Volume 3 – Alphabetical Index – ISBN: 92 4 154654 9.
[6] See, for example, ME/CFS: TERMINOLOGY by Margaret Williams at:
www.angliameaction.org.uk/docs/me-cfs-terminology.pdf
http://meactionuk.org.uk/ME_CFS_TERMINOLOGY.pdf
And ME/CFS: Classification Issues by Margaret Williams at:
http://meactionuk.org.uk/ME_CFS_Classification_Issues.pdf
[7] “The hallmark of encephalopathy is an altered mental state.” See:
http://en.wikipedia.org/wiki/Encephalopathy
[8] Carruthers et al op. Cit
[9] Dr Bruce Carruthers, in personal correspondence with Kevin Short in 2005 with a view to his comments being made public. Viewable on-line at:
www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm
[10] In “Microbes, Mental Illness, The Media and ME: The Construction of Disease”; Simon Wessely; 12th May 1994; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London. A copy of Professor Wessely's own 12th May 1994; 9th Eliot Slater Memorial Lecture notes, along with comment, is available here:
http://www.meactionuk.org.uk/wessely_speech_120594.htm http://www.meactionuk.org.uk/wessely_speech_120594.pdf
Cited in 'Submission re: DSM-V and ME/CFS', Compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group, 20 March 2010:
http://www.meactionuk.org.uk/DSM-V-submission.htm
http://www.meactionuk.org.uk/DSM-V-submission.pdf
[11] Managing patients with inexplicable health problems. Baruch Fischhoff, Simon Wessely. BMJ Volume 326, 15 March 2003. BMJ 2003;326:595–7.]
[12] Carruthers et al op. Cit.
--ENDS--

Friday, July 22, 2011

Prof Hooper and Margaret Williams: Science versus Psychiatry – again

Prof Malcolm Hooper and Margaret Williams 22nd July 2011

In her BMJ editorial in which she referred to “myalgic encephalitis” instead of the correct term “myalgic encephalomyelitis” (Ending the stalemate over CFS/ME: BMJ 2011:342:d3956), Fiona Godlee described the disagreement between the biomedical and psychosocial schools of thought about ME as “an unproductive standoff in which…all progress is being stifled by increasingly aggressive intimidation of researchers”.

The “unproductive standoff” certainly existed and may be said to be the result of 25 years of inflexible arrogance by “overly powerful psychiatrists who hold key positions in medicine, research, media gatekeeping and government policy…suppressing the argument that ME may be biomedical rather than psychiatric” (Let psychiatric and biomedical lobbies be heard equally in CFS/ME research; Caroline Davis: BMJ 2011:343:d4544).

Following her editorial, Godlee published a letter from Professor Peter White (Chief Principal Investigator of the notorious PACE Trial) in which he was joined by Alastair Miller (medical advisor to the charity Action for ME) and by paediatrician Esther Crawley (renowned for her belief in the Lightning Process in the management of ME) in which they decried the need for adequate assessment of patients with ME as being “a significant burden” on both patients and doctors.

When did careful assessment of sick people stop being part of the practice of medicine, particularly when the disorder in question is known to be both complex and chronic? The answer seems to be that it was when Wessely School psychiatrists and others who work for the insurance industry became the arbiters of what constitutes disease or disability.

In their published letter, White et al use inverted commas when referring to “symptoms” of ME such as “ataxia” and “palpitations with cardiac arrhythmias” and “loss of thermostatic stability”, denoting their dismissal of such symptoms as genuine components of ME; indeed, White et al go on to refer to the assessment of “too many symptoms of dubious validity”.

Godlee also afforded a platform for psychiatrist Alastair Santhouse (who, with Esther Crawley, was a member of the Guideline Development Group that produced the NICE Clinical Guideline on “CFS”) to reject valid criticisms of the PACE Trial (“the sound rebuttal by the Medical Research Council and the Lancet to allegations that the PACE trial was in some way improper should be proof enough” – BMJ 2011:343:d4550).

However, a positive step has just been taken towards resolving the “standoff”.

Not only were researchers from 13 countries including the UK not intimidated by their patients with ME, they have now produced International Consensus Criteria specifically for ME (ME: International Consensus Criteria; Bruce M Carruthers et al; Journal of Internal Medicine: Accepted Article: doi:10.1111/j.1365-2796.2011.02428.x).

Between them, the international panel have about 400 years of both clinical and teaching experience of ME; they have authored hundreds of peer-reviewed publications and they have diagnosed or treated approximately 50,000 (fifty thousand) ME patients.

The abstract is clear: “In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organisation’s International Classification of Diseases (ICD G93.3)”.

The expert authors explain that the purpose of developing the latest international criteria was to base them on current knowledge of ME that reflects the complex symptomatology and they have produced guidelines which “promote optimal recognition of ME by primary care physicians and other health care providers”.

The authors point out that ME “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”.

They note that the use of overly inclusive criteria in research has included people who do not have ME and that this leads to “biased research findings, inappropriate treatments, and waste(d) scarce research funds”.

The International Consensus Criteria are soundly supported by research and are based on 123 cited references; the authors note that broadly based studies show a lack of objective findings and state that “the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low threshold of fatigability and symptom flare in response to exertion”.

The authors are explicit: “Pain and fatigue are crucial bioalarm signals that instruct patients to modify what they are doing in order to protect the body and prevent further damage. Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport”.

The panel members consider the neurological impairments including structural and functional abnormalities seen on neuroimaging studies in ME; they address the immune impairments including decreased natural killer cell signalling and function; abnormal growth factor profiles; decreased neutrophil respiratory bursts with a shift towards a Th2 profile; chronic immune activation with increases in inflammatory cytokines, pro-inflammatory alleles, chemokines and T lymphocytes, and dysregulation of the antiviral ribonucelase L (RNaseL) pathway.

They consider the evidence of profound energy impairment and poor cardiac performance and they note the possible involvement of altered control and reduced cortisol production during and after exercise.

They note the evidence of abnormal blood pressure regulation and the measurable vascular abnormalities that suggest the brain is not receiving sufficient circulating blood volume when the patient is upright and that this is intensified when standing in one place such as in a grocery checkout line.

The authors discuss the clinical application of their criteria, as well as paediatric considerations and research applications.

The authors conclude that they “believe the International Consensus Criteria will help clarify the unique signature of ME” and they state unambiguously that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for (Health and) Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.

This approach could not be more different from that used by Professor White in the PACE Trial, in which he used the intentionally broad Oxford criteria that do not discriminate between ME and chronic medically unexplained fatigue.

The adoption of these international diagnostic criteria would ensure that future studies are investigating people with well-defined ME and would thus satisfy one of the biggest complaints from within the ME community (ie. that previous studies have not been looking at a homogeneous group of ME patients). It would certainly be a positive step towards resolving the standoff between science and psychiatry.

The Canadian/International Consensus Criteria identify patients who are more physically debilitated and have greater physical and cognitive functional impairments

by tonybritton on July 22, 2011:

From The Journal of Internal Medicine, July 2011 (manuscript accepted 15 July 2011 and published online on 20 July 2011)


Myalgic Encephalomyelitis: International Consensus Criteria


Bruce M Carruthers, MD, CM, FRCP(C) (coeditor); Independent, Vancouver, B.C., Canada

Marjorie I van de Sande, BEd, GradDip Ed (coeditor); Independent, Calgary, AB, Canada

Kenny L De Meirleir, MD, PhD; Department of Physiology and Medicine, Vrije University of Brussels, Himmunitas Foundation, Brussels, Belgium.

Nancy G Klimas, MD; Department of Medicine ,University of Miami Miller School of Medicine and Miami Veterans Affairs Medical Center, Miami, FL, USA

Gordon Broderick, PhD; Department of Medicine, University of Alberta, Edmonton, AB, Canada

Terry Mitchell, MA, MD, FRCPath; Honorary Consultant for NHS at Peterborough/Cambridge, Lowestoft, Suffolk, United Kingdom.

Don Staines, MBBS, MPH, FAFPHM, FAFOEM; Gold Coast Public Health Unit, Southport, Queensland; Health Sciences and Medicine, Bond University, Robina, Queensland, Australia AC

Peter Powles, MRACP, FRACP, FRCP(C), ABSM; Faculty of Health Sciences, McMaster University and St. Joseph’s Healthcare Hamilton, Hamilton, ON, Canada.

Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH; Independent, Durham, United Kingdom

Rosamund Vallings, MNZM, MB, BS, MRCS, LRCP; Howick Health and Medical Centre, Howick, New Zealand.

John Chia, MD; Harbor-UCLA Medical Center, University of California, Los Angeles; EV Med Research, Lomita, CA, USA

Alan R Light, PhD; Depts or Anesthesiology, Neurobiology and Anatomy,University of Utah, Salt Lake City, Utah, USA.

Judy A Mikovits, PhD; Whittemore Peterson Institute, University of Nevada, Reno, NV USA

Martin L Pall, PhD; Department of Biochemistry & Basic Medical Sciences, Washington State University, Portland, OR, USA

Staci Stevens, MA; Department of Sports Sciences, University of the Pacific, Stockton, CA USA.

et al.



Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

Some symptoms of the Fukuda criteria overlap with depression whereas the Canadian Consensus Criteria [20] differentiate ME patients from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21].

The six-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months. Notwithstanding periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.


>--< The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days. >--< Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. These guidelines are designed specifically for use by the primary care physician in the hope of improving rapid diagnosis and treatment by first-line medical care providers. This may result in the development of an additional short form version that would build on the relationships linking symptoms to formulate an abbreviated screening protocol. For the first time clinical, paediatric and research applications are provided, which will advance the understanding of myalgic encephalomyelitis and enhance consistency of diagnoses internationally. The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and etiology of myalgic encephalomyelitis. Full ARTICLE

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

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