Simon Wessely, ME/CFS and Rituximab II: CBT Advocate Explains "New" Stance

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Simon Wessely recently stated in the New Scientist regarding Rituximab

"There is now a strong case to be made for a larger trial. The belief that [CFS] is all in the mind has been around since the beginning. It's tragic that it might take a study like this to take sufferers seriously."

I asked him a number of questions about his statements and his work. I asked whether ME/CFS had turned out to be more complex than he first thought, whether his statement reflected a change of course in his thinking, whether there had been too much of emphasis on behavioral approaches to ME/CFS in the UK and others.

Wessely's Response to My Email

In the email to me he provided his full response to the New Scientist reporter. First he stated:

"Forgive me, but I am getting rather tired about the latest interest/comment and sadly of course abuse. I have had a lot of polite inquiries in the last few days to which I reply, and inevitably rather other unpleasant ones which I don’t.[fright]

Basset-hound-ears.jpg


[/fright]In fact what I said was neither a “climb down” as some have said , nor the opposite, as others have said. And no, it was not an attempt to influence events, funding, the past or the future. My first comment was what any medical academic would say in similar circumstances. I accept that as ever journalists do shorten what you say, which is the risk you always take when talking to them, but I have lived my career thinking it's always better to talk to journalists than not, although not all my colleagues agree.

So this is my first response to the journalist at New Scientist, who asked me about rituximab and whether or not this would end the debate as to the existence of CFS - “does this make it clear that CFS genuinely exists” I replied:

“There hasn't been a debate as to whether CFS genuinely exists for years. Whether or rituximab is the answer is a technical question. There is now a strong case to be made for a larger trial, and I hope that takes place Blinding will be a problem though given that it has to be given IV and has side effects”
The reporter asked him "Do you think this provides new hope that there might be a biological mechanism behind at least some of the cases, dispelling the widespread assumption among some that “it’s all in the mind”?

In his email to me Wessely argued that he's never thought ME/CFS was all in the mind. He said in the email to me that "If you have read any of my work over the last 25 years you can anticipate my reply (to the reported, which was as follows"

“The belief that this is all in mind has been around since the beginning and is a sad reflection on how we approach illness as a society It is tragic that it might take such a study to take sufferers seriously. Imagine what it is like for those with disorders such as autism, schizophrenia, bipolar, OCD and so on and so forth who as yet have no such bio marker. Are their illnesses somehow less valid? I find it depressing and dispiriting that so many people seem only to be willing to take an illness seriously when there is a blood test for it “
Wessely then stated the he's a scientist and as such he believes in "large randomised controlled trials" That, he said, should hardly be "front page news". He said he's written a book on the randomised controlled trial although "sadly very few people ever bought it.". He reiterated that he's fed up with the idea that ME/CFS is all in the mind and the idea that "now the proper scientists have found out its real after all” line.

When asked by me if he would use OK of the drug, Wessely replied "

"If rituximab becomes approved for the treatment of CFS by our NICE (similar but not quite the as your FDA) then yes, we would prescribe it. Why would we not?
____________________________________-

Literature Review

Wessely asserted that he's never believed ME/CFS is "all in the mind", that it's a real illness with biological aberrations. He said that "if you've read my work you would understand this." I haven't read much of his work but I looked at three recent papers/comments to Journals to try and get a sense of where he's at.

The questions I asked myself were: Does Wessely believe ME/CFS is a real illness? Does he believe biological factors are in play? Does his statement that he would support an ME/CFS Rituximab and treat ME/CFS patients with Rituximab if it is approved make sense given what he's written?

1st PAPER: Chronic fatigue syndrome: understanding a complex illness Stephen T. Holgate, Anthony L. Komaroff, Dennis Mangan and Simon Wessely. NATURE REVIEWS | NEUROSCIENCE VOLUME 12 | SEPTEMBER 2011 | 539

In the "Chronic fatigue syndrome: understanding a complex illness" piece Wessely and three other researchers/experts (Stephen Holgate, Anthony Komaroff and Dennis Managan) were asked a series of questions. The second involved viruses and the immune system.

When asked "How strong is the evidence that viral infections and/or immune dysregulation play a part in the aetiology
of CFS?"


Wessely stated:

" Immune dysfunction is likewise known to be associated with CFS — we and others, for example, have shown immune activation in patients with CFS. However, we do not know if this indicates that immune activation may have an aetiological role in the disease or, alternatively, if it is confounded by low cortisol levels or sleep dysfunction, both of which are commonly found in CFS patients and both of which are associated with immune activation.
  • Without stating he'd be willing to treat ME/CFS with immune factors/antivirals Wessely acknowledges some immune dysfunction is present.
Does CFS have a psychiatric or psychological component?

To paraphrase, Wessely stated that if by psychiatric you mean ME/CFS is a hysterical and imaginary illness the answer is no. If by psychiatric you mean it's something like autism, Alzheimer's disease or major depression the answer is probably yes. He asserted that having a chronic illness cannot account for the higher than normal rates of mood disorders in ME/CFS and suggested some shared central nervous system problems are found in
both. He stated that as with any chronic disabling illness that addressing beliefs, behaviors and emotions "can play an important part in treatment".

  • Wessely discards the idea that ME/CFS is all in the mind and puts it in the context of other neurological/psychiatric disorders (more on this later). He asserts addressing beliefs, etc. can be important.

When asked if CFS is ultimately a disease of the CNS (neurological and/or psychiatric)?

Wessely stated that he "would be surprised if the pathology does not involve some dysfunction within the CNS." He also noted the limitations of our classifications. He suggested that diseases are split into the neurological or psychological camps based more on history than science. Autism and schizophrenia, for instance, are not psychological disorders - they're neurological disorders that treated by psychiatrists. He stated:
"After all, why are schizophrenia or autism still classified as psychiatric — the answer is nothing to do with the nature or aetiology of the condition but simply because psychiatrists treat them, not neurologists."
  • My take on this is that Wessely puts ME/CFS into the realm of biologically based psychiatric/neurological disorders.

When asked "What is the best way for the field to make progress? What could be the role of neuroscience in advancing the field?

Wessely stated:

"new insights into the nature of CFS are most likely to emerge from the neurosciences, by which I mean basic and clinical neurosciences and psychology. Understanding the nature of the sense of the mental and physical effort that these patients experience and the consequences of experiencing this effort will lie at the heart of it."
  • A theme is starting to emerge. Wessely puts his feet in both camps - psychology and neurology (neurosciences) - regarding ME/CFS. This mixed approach came to the fore in a comment to a published editorial by Dr. Newton where Wessely and two others argue that fatigue should not be approached either solely using a biological or a psychosocial approach but should employ both.

SECOND PAPER: Occup Med (Lond). 2010 Dec;60(8):665-6; author reply 666-7. doi: 10.1093/occmed/kqq166. Making sense of fatigue: the need for a balanced approach. Harvey SB, Mykletun A, Wessely S.
[fleft]
chronic-fatigue-syndrome-Research.jpg
[/fleft] Wessely et. al. agreed "with the need to consider biological processes in fatigued individuals" and noted that a recent UK study of self-reported chronic fatigue syndrome found higher rates of psychiatric disorders were present prior to their coming down with ME/CFS. They also noted, however, that studies indicate that fatigue can occur without psychiatric distress and that experiencing chronic fatigue can produce emotional issues.

They stated that CBT/GET can be helpful in ME/CFS as well as fatigue associated illnesses as rheumatoid arthritis, multiple sclerosis and cancer but that "these results should not be seen as evidence of chronic fatigue being a mere consequence of psychiatric distress; there is ample research demonstrating this is not the case [3,8]. Nor should they be seen as diminishing the potential impact of biological factors."

While arguing that psychological factors should be assessed in ME/CFS they stated "We agree that a better understanding of the biological aspects of fatigue is essential and share Newton and Jones’ hope that this will lead to novel treatment options."

THIRD PAPER: A Modern Perspective on Some of the Most Highly cited JNNP Papers of All Time. The nature of fatigue: a comparison of chronic “postviral” fatigue with neuromuscular and affective disorders. J Neurol Neurosurg Psychiatry 2012;83:4e5. doi:10.1136/jnnp-2011-301216

Finally in 2012 Simon Wessely was asked to look back at his first published study in 1989. The study "The nature of fatigue: a comparison of chronic “postviral” fatigue with neuromuscular and affective disorders" turned out to be one of the most cited highly papers in the JNNP journal over time. It found that "post-viral fatigue" (ME/CFS) was different from neuromuscular disorders such as myasthenia gravis and was closer to, but different from depression. Had it stood the test the time?

Wessely stated he felt it had. He felt that the links with depression in ME/CFS had been over-estimated and the links with anxiety had been under-estimated over time. He also stated I "became identified with the ‘all in the mind’ view of CFS, which was ironic since my interest in the condition was triggered by the fact that I did not think this was an imaginary or non-existent disorder, as many did at the time." He again argued against the division between biological and psychological disorders stating that the biological basis of many so-called psychiatric disorders makes the division meaningless.

Conclusion

This was a quick review. It is no ways complete. It suggested that Wessely is committed to the use of CBT and GET in ME/CFS and defends the use of these practices vociferously. I didn't find any evidence from hisrecent writings, though, to suggest that he believes ME/CFS is all the mind or that biological problems aren't present. If he doesn't acknowledge all the biological aberrations present in the disease or if he doesn't focus on them, he does acknowledge they are there and agrees they should be studied further.

Based on this short survey his statement that a larger Rituximab trial should be done makes sense. His statement that he would use it in his patients would logically follow as well.

But then there's this problem of a British medical system that severely limits treatment options - with which Wessely is highly identified. What is one to make of that? If Wessely has always acknowledged the biological aspects of ME/CFS - even as he has emphasized it's psychological aspects - why is the British medical system so conservative? If it's true that Wessely puts ME/CFS in some sort of mixed biopsychosocial/neurological classification which warrants further biological research, why has UK's medical system has failed miserably to get that message?

I 'm an outsider but my guess is that while Wessely does give some support to biological research but that support ends when it comes to different treatment options. My guess is that the dissatisfaction with the available treatment options is the primary driver of the more aggressive and active advocacy groups found in the U.K. - and the many personal attacks on Simon Wessely.[fright]

Reeves-CFS-CDC.jpg
[/fright]As Dr. Wessely bemoans the attacks on him the fact they're there is something to think about. Nothing occurs in a vacuum. Psychologists in the U.S. - where a more balanced approach prevails - are not getting shredded by ME/CFS patients. Why? Probably because the U.S. employs a more balanced approach to ME/CFS. Psychiatrists are not writing the book on treatment options here. They appear to be in the U.K.

While the options in the States may not be great and while many do not have access to them, they are still present. Many ME/CFS experts are willing to experiment and sometimes those experiments work out. That happens to a much lesser extent in the U.K.

Has Wessely been misunderstood? My guess is that he has to some extent but he's also been understood. He's been the torchbearer for CBT/GET for years. In doing so he's helped sow a wind that appears to have almost entirely taken over the British approach to treatment. The cost of his success is many people being upset with the most visible proponent of CBT/GET.
 
Last edited:

Martinigal

Active Member
I think that CBT is always useful, no matter where you are in life or what you're dealing with. I really did get help from a book called How To Be Sick by Toni Bernhard, which is basically a Buddhist approach to acceptance. It's not at all suggestive of any chronic illness being emotional in foundation, but instead its message is, you find yourself sick, the medical community doesn't yet have the tools to diagnose you, so how can you remain calm and balanced in the midst of what's happening.

It literally brought me back from the edge of suicide. When one wakes up daily in pain and foggy headed, unproductive, loss of friends and family, nothing to really look forward to, a book like this was transformative for me. Can someone tell me what GET is? I tried to find it myself, but no luck. Thanks!

As far as Dr. Wessely goes, I agree he is keeping his feet in both camps, but I'm not sure that's a bad thing. Not in terms of people with ME starting out with some mental illness, but certainly once the body falls into the ravages of ME, I think any type of therapy is very important. That's why I mention How To Be Sick, because this is a therapeutic book which deals directly with undiagnosed chronic illness.

On the other hand, the need for a biological cure/help is far more dire than most people realize.
 
Last edited by a moderator:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Well said Martinigal :)....I agree that mind/body stuff can be useful where-ever you are in life - including chronic illness - and I'm glad you got help from Toni's book. Can I ask if there were any practices or exercises in particular that you found helpful? I also agree - and I'm SURE that Toni would agree - that the need for a real cure is far more dire than most understand.

I think it's pretty clear that the focus on CBT has not helped in that regard - that it's created a barrier that ME/CFS researchers have had to surmount.

I think that CBT is always useful, no matter where you are in life or what you're dealing with. I really did get help from a book called How To Be Sick by Toni Bernhard, which is basically a Buddhist approach to acceptance. It's not at all suggestive of any chronic illness being emotional in foundation, but instead its message is, you find yourself sick, the medical community doesn't yet have the tools to diagnose you, so how can you remain calm and balanced in the midst of what's happening. It literally brought me back from the edge of suicide. When one wakes up daily in pain and foggy headed, unproductive, loss of friends and family, nothing to really look forward to, a book like this was transformative for me. Can someone tell me what GET is? I tried to find it myself, but no luck. Thanks!

As far as Dr. Wessely goes, I agree he is keeping his feet in both camps, but I'm not sure that's a bad thing. Not in terms of people with ME starting out with some mental illness, but certainly once the body falls into the ravages of ME, I think any type of therapy is very important. That's why I mention How To Be Sick, because this is a therapeutic book which deals directly with undiagnosed chronic illness.

On the other hand, the need for a biological cure/help is far more dire than most people realize.
 

cfsStevew

Member
Hi Cort - there are no doubt a lot of others more suited to give detail on this but I have to be clear with you - Wessely is an extremely oily character. Even in your contact I notice the usual obfuscation. He is proposing a psychiatry/neurology category that doesnt exist. He always states 'I never said its all in the mind' - because thats a laymans term and its too inaccurate to cover what he says. To get Wessely you need to be very incisive with your questions. Wessely says CFS is 'a real illness' and that illness is psychiatric. Then he always goes on to explain that psychiatric illness is 'real' and how awful it is people dont think depression is a 'real' illness. (which we do - its a psychiatric illness which CFS/ME is not). Wessely is a master of self-promotion and presenting himself as the hero. He repeatedly makes assertions about how poorly people with ME were treated before he came along (unsubstantiated) and that he decided to take them seriously - and suggest they had a psychiatric illness based upon false illness belief and deconditioning.

To get a really clear picture of what happened in the UK I recommend reading Magical Medicine on the MEAction website, and Corporate Collusion...

You are right tho that he keeps a toe in the water by admitting biological abnormalities - its just that he dismissed as essentially side effects of the psychiatric illness.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think that CBT is always useful, no matter where you are in life or what you're dealing with. I really did get help from a book called How To Be Sick by Toni Bernhard, which is basically a Buddhist approach to acceptance. It's not at all suggestive of any chronic illness being emotional in foundation, but instead its message is, you find yourself sick, the medical community doesn't yet have the tools to diagnose you, so how can you remain calm and balanced in the midst of what's happening.

It literally brought me back from the edge of suicide. When one wakes up daily in pain and foggy headed, unproductive, loss of friends and family, nothing to really look forward to, a book like this was transformative for me. Can someone tell me what GET is? I tried to find it myself, but no luck. Thanks!

As far as Dr. Wessely goes, I agree he is keeping his feet in both camps, but I'm not sure that's a bad thing. Not in terms of people with ME starting out with some mental illness, but certainly once the body falls into the ravages of ME, I think any type of therapy is very important. That's why I mention How To Be Sick, because this is a therapeutic book which deals directly with undiagnosed chronic illness.

On the other hand, the need for a biological cure/help is far more dire than most people realize.
GET is graduated exercise therapy. In the right hands such as Dr. Klimas and Staci Stevens (and at the right time) it can be help increase fitness and well-being. In the wrong hands it can be devastating. Even Wessely would not argue that it leads to a cure.
 

cfsStevew

Member
GET is graduated exercise therapy. In the right hands such as Dr. Klimas and Staci Stevens (and at the right time) it can be help increase fitness and well-being. In the wrong hands it can be devastating. Even Wessely would not argue that it leads to a cure.
Cort Wessely was an adviser on the PACE trial and they claimed there would be 2/3 recovery from GET and CBT...they fiddled the numbers and post hoc claimed 1/3 recovery based on absurd numbers: I highly recommend these videos:

https://www.youtube.com/user/MEAnalysis/videos
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi Cort - there are no doubt a lot of others more suited to give detail on this but I have to be clear with you - Wessely is an extremely oily character. Even in your contact I notice the usual obfuscation. He is proposing a psychiatry/neurology category that doesnt exist. He always states 'I never said its all in the mind' - because thats a laymans term and its too inaccurate to cover what he says. To get Wessely you need to be very incisive with your questions. Wessely says CFS is 'a real illness' and that illness is psychiatric. Then he always goes on to explain that psychiatric illness is 'real' and how awful it is people dont think depression is a 'real' illness. (which we do - its a psychiatric illness which CFS/ME is not). Wessely is a master of self-promotion and presenting himself as the hero. He repeatedly makes assertions about how poorly people with ME were treated before he came along (unsubstantiated) and that he decided to take them seriously - and suggest they had a psychiatric illness based upon false illness belief and deconditioning.

To get a really clear picture of what happened in the UK I recommend reading Magical Medicine on the MEAction website, and Corporate Collusion...

You are right tho that he keeps a toe in the water by admitting biological abnormalities - its just that he dismissed as essentially side effects of the psychiatric illness.
Thanks CFSSteveW

I do think Wessely has a more nuanced view of psychiatric - he includes autism and Parkinson's in there - but I also acknowledge I have little background in his work. I did ask more detailed questions but probably not as detailed or incisive as you might want. I wanted him to open up so the questions were more open ended. He didn't answer most of them but he did open up a little bit. The review was limited to just a couple of questions.

There's no doubt that its a very complex, decades-long situation that my little survey can't do justice to. Thanks for recommending the book.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort Wessely was an adviser on the PACE trial and they claimed there would be 2/3 recovery from GET and CBT...they fiddled the numbers and post hoc claimed 1/3 recovery based on absurd numbers: I highly recommend these videos:

https://www.youtube.com/user/MEAnalysis/videos
Agreed. The UK patient community did a great job analyzing and pointing out the flaws of the PACE trial. I think their voices got through.
 

cfsStevew

Member
Hi Cort - sorry if my message sounded a bit critical - there is a lot of depth to the tale of Wessely thats probably not obvious especially when you try to contact/discuss issues with him...I'd like to get some of my UK ME buddies to join in and explain if poss...

The best source of info is

http://www.meactionuk.org.uk/

Professor Malcom Hooper, Margaret Williams have carefully documented and outlines his stance along with his associates. The Countess of Marr also...its quite easy to get the idea superficially that he is a ok guy after all etc but it goes a lot deeper...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi Cort - sorry if my message sounded a bit critical - there is a lot of depth to the tale of Wessely thats probably not obvious especially when you try to contact/discuss issues with him...I'd like to get some of my UK ME buddies to join in and explain if poss...

The best source of info is

http://www.meactionuk.org.uk/

Professor Malcom Hooper, Margaret Williams have carefully documented and outlines his stance along with his associates. The Countess of Marr also...its quite easy to get the idea superficially that he is a ok guy after all etc but it goes a lot deeper...
Not to worry...I imagine your comment will be quite mild compared to some others :cool:
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi Cort - sorry if my message sounded a bit critical - there is a lot of depth to the tale of Wessely thats probably not obvious especially when you try to contact/discuss issues with him...I'd like to get some of my UK ME buddies to join in and explain if poss...

The best source of info is

http://www.meactionuk.org.uk/

Professor Malcom Hooper, Margaret Williams have carefully documented and outlines his stance along with his associates. The Countess of Marr also...its quite easy to get the idea superficially that he is a ok guy after all etc but it goes a lot deeper...
Not to worry...I imagine your comment will be quite mild compared to some others :cool:
 

J William M Tweedie

Well-Known Member
It's always good journalism to go to the source with seminal questions. Bravo Cort! Well done. Ultimately if science forges ahead and we get the necessary research/trials done, we will all be better off and closer to understanding our afflictions.
 

MsJustice

New Member
Very selective. From most of what I've read of Wessely, Sharpe, White and their like-they believe that we become deconditioned, through our patterns of behaviour and this is perpetuated by the erroneous belief that we have a distinct disease and that effort will harm us. Some of the abnormal findings are then explained as similar to deconditioned patients.
 

Willowtree

New Member
As cfsStevew said, and beautifully put may I say, he is a very oily character who will deny he's said what people accuse him of, because they've simply adapted his words to their own way of speaking. A quick google of his line"aberrant illness beliefs' along with his name brings up a ream of information on his true words, and consequent obfuscation.

He is a nasty piece of work who has done great damage to ME patients since at least the 1980's, not helped by his influence, via various committees he's stood on, on the British government and the NICE guidelines. He, and his fellow committee members, wrote the NICE guidelines (to which every UK doctor must adhere or face losing their licence to practise, or at least face prosecution) on ME (or CFS as he prefers), including the advice not to perform any tests beyond basic blood tests, since performing extra tests 'validates the patient's illness beliefs' (my phraseology, not necessarily his, but the meaning is correct to a layperson).

He often has spoken/written in the past of his research on CFS, and commented on the high number of patients in the group with co-morbid depression and anxiety. What he fails to mention is that the definition of CFS he used to identify patients for research is sufficiently loose as to include people with 'just' depression or anxiety that are also experiencing fatigue. Thus, his research really should be taken with a very large pinch of salt. Not that he is still involved in CFS research. He left the field a few years back. I won't speculate on his reasons.
 

LewieP's Mummy

New Member
Hello,
I've just signed up so that I can comment here, but thought I'd also say that there isn't an option to tick that you have ME on the sign up form - I refuse to call what I have CFS, as that is a made up term that does not cover this nasty illness.
I wanted to comment on out Simon Wessely and the harm he has caused many people with ME in the UK. For many years he has promoted ME as 'all in the mind', rather than the physical illness it is, and his influence has spread widely throughout the UK, leading the NHS to offer CBT and GET as the only 'treatment' for ME. His subsequent fudging of the research by changing the success criteria when not enough people showed an improvement when undertaking GET was completely dishonest, and caused us further damage.
I had both treatments forced on me as the only solution to having ME; GET not surprisingly made me worse, just like it did for many people during his research; CBT helped me manage the emotional aspects of having ME, but again, unsurprisingly, made no difference to my symptoms.
Thankfully, I'm now part of the precursor to the UK rituximab trial, so I may well have successful treatment in the future.
 

tatt

Well-Known Member
I'm tired tonight so just a few quick comments

Wessely was responsible for the PACE trial. You have read the criticisms of that, the shifting of the goalposts etc, That should prepare you for how Wessely will react to questions. He is the reason little research has been done into the physical causes of ME in Britain.

He claims to have been threatened with violence and to have received very abusive comments - never heard of the police arresting anyone or him being given police protection and you'd expect that if they were credible threats. He's not responded to questions about them. Therefore there is some scepticism about the reality of these complaints. If they are real many people in the public eye attract crank comments, if the police take them seriously there are arrests and prosecutions.

There is a lot of frustration that Wessely, who is supposed to be a scientist, has ignored the evidence of physical differences in ME patients. His attitude has been that ME is a real illness but a psychiatric one where any physical symptoms are created by the psychiatric illness and/or by deconditioning.

In the UK you are lucky to be offered any treatment. If you are it will consist of CBT and GEt and you can't have one without the other. It is claimed to be a "cure" - and the only "cure". People die in the uk like this one http://www.theguardian.com/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome
 
Wessley is a careerist who built his career on the basis of his convenient classification of CFS/ME as an hysterical disorder. I know clinicians who have worked with him, and seen through his charm to his deep contempt for MEers as a patient cohort. I have also lost good friends to a system that convinced them they were neurotics, not worthy of 'real' treatment efforts. If the NHS had actually responded with appropriate investigations to each patient, it would have taken billions of pounds at a time of rapidly-shrinking resources. Hence the money spent on PACE. Wessely now sees the mounting evidence of tangible biomarkers, and is trying to hedge his bets. I have absolutely no interest in anything else he can add to the debate. A second class mind, focussed on personal aggrandisement, brings little fresh thought to this complex, emergent, phenomenon. History will not remember him kindly, if at all.
 

lisapetrison

Active Member
My background is in the kind of research methodologies that the PACE study uses. I spent a good bit of time a while back reading the paper closely and putting together a critique.

As psych papers go, this one is pretty weak.

I wrote to both Wessely and Peter White, asking for comments or correction of errors, and did not get a response.

http://paradigmchange.me/pace/
 
Well, I can definately remember Wessley saying that ME/CFS is no more a "physical illness" than depression or schizophrenia, can't remember his exact words but he was clear in that in his reply to the Countess of Mar that ME/CFS IS a psychiatric illness, he made a clear line on that one, so he is a bit slimy to say the least in his reply to Cort's questions. (although personally I do not see psychiatric illnesses as any less real or biological or whatever, its just that ME isn't a psychiatric illness but thanks to him most people here in the UK now seem to think that it is 'psychosomatic' or something).

I agree though that the bigger problem in the UK is the ignorant belief by the British Medical Association about this disease and this incorrect info is passed onto every doctor here in the UK via the British Mecial Journal, which they all read. That saying that the doctors are only as good as the information they are given certainly holds true. That recent article in the BMJ that Cort commented on (May issue? the rise and fall of a reseacher) has already caused me alot of headache here.
Last week I had to have a telephone consulation with one of the consultants in the NHS hospital that is organising the prelimary B cell trial in London(the prelimary trial to the rituximab trial if there ever is one) as I am taking part in this preliminary trial. I asked him afew questions regarding other treatments (antiviralss) and testing and recent research findings(ie the Mady Hornig one), he had no knowledge of any of this but did keep quoting almost word for word the recent article in the BMJ about there being no consistent abnormalites found despite exhausive research etc, etc blah blah blah....(this hospital does dish out CBT and GET though). Afterwards it was clear that he knew about none of the recent advances made in the research world in ME, and this is a doctor in charge of an ME/CFS team commisioned by Invest in ME to do the prelimary B cell trial, so it isn't going to get any better than that in the UK. But sadly it is not his fault, they are only as good as the information they are given and that information is given to them via the BMJ which they all read and seem to take it as gospel, and that any other information is incorrect, fact. By the way I asked when there would be a Rituximab trial and they are still sticking to the wait and see what happens in Norway first scenario, so no change there yet, another couple years wait at least.

So yeah, that recent BMJ article on which Cort did a piece (the rise and fall of a researcher), that is what is causing me at present, a big headache here the UK. I really feel that in the research world these last couple of years that the tide is changing, and that over the next few years alot of things are going to happen.
everywhere that is but the UK, that BMJ article seems to been the final nail in the coffin, now feels like another 10 years at least dealing with doctors that think it is a psychosomatic illness or not there at all. I mean I was ready to start educating/updating any doctor here I have to "do battle" with on the recent advances in reseach like Rituximab trials, Van Ness cardiopulmonary testing, recent Mady Hornig reseach, and I think it would have been interesting for them too. Now I just feel that they will have a choice between believing the info I can offer them, or believing this new BMJ article and they will inevitably choose the latter, so there is no point at all anymore. Sorry to be a downer on this one but if felt like there was a break in the storm, and now it has closed in again here in the UK thanks to that Bmj article.

So how can we turn all this around? I mean if doctors are only as good as the info they are given, how about actually suing the BMJ on this recent article on the grounds that it is just not true what was written and that it will have a directly negative effect on ME patients' medical care in the UK as a result no matter what doctor they have to see? Is this possible? ie force the BMJ to publish a more 'balanced' and accurate article. I thought the WHO had a go at them in the past for only publishing psychiatric biased articles on ME,and not a single one on an biological research. If there are any lawyers out there who are reading and want to get involved please let me know. Seriously though, I am game if they want a fight, bring it on, does anyone with legal expetise want to help for free? I have had enough of the British medical association, they seem to have this erroneous belief of what ME is and isn't, and this if born through their own ignorance, it is right at the top and get's passed down through the entire medical system in the UK. Enough is enough, grow up!
 

marcie myers

New Member
Home • Write or Call the White House
mce-anchor

Corresponding with the White House
Write or Call the White House

President Obama is committed to creating the most open and accessible administration in American history. That begins with taking comments and questions from you, the public, through our website.
Call the President

Phone Numbers

Comments: 202-456-1111
Switchboard: 202-456-1414
TTY/TTD

Comments: 202-456-6213
Visitor's Office: 202-456-2121
Write a letter to the President

Here are a few simple things you can do to make sure your message gets to the White House as quickly as possible.
1. If possible, email us! This is the fastest way to get your message to President Obama.

2. If you write a letter, please consider typing it on an 8 1/2 by 11 inch sheet of paper. If you hand-write your letter, please consider using pen and writing as neatly as possible.

3. Please include your return address on your letter as well as your envelope. If you have an email address, please consider including that as well.

4. And finally, be sure to include the full address of the White House to make sure your message gets to us as quickly and directly as possible:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
 

Get Our Free ME/CFS and FM Blog!



Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top