Simon Wessely recently stated in the New Scientist regarding Rituximab
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]
[/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:
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"
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 "
____________________________________-
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:
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".
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:
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:
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]
[/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]
[/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.
"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]
[/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:
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"
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 "
____________________________________-
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:
- Without stating he'd be willing to treat ME/CFS with immune factors/antivirals Wessely acknowledges some immune dysfunction is present.
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:
- 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:
- 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]
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]
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.
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....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.
