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

[tatt]

Wessely thinks blinding will be a problem in a rituximab trial, I dont think he has ever mentioned this as a problem in the PACE trial. In fact it isn't as much of an issue issue for rituximab as for PACE as they plan to infuse saline so the patients, at least, will not be aware of what they get. Don't know enough about rituximab to know if those administering the solutions can tell the difference. As I know this I'm sure Wessely does - and is just trying to undermine the rituximab trial. Dont think he's ever mentioned blinding as a problem for PACE or accepted any of the other well documented problems. I'm afraid in the UK those prbems, despite being well documented, are still largely ignored by the medicl establishment and the press.

You've paraphrased some of his comments so its not possible to point out the areas where he has been evasive or economical with the truth.

If Rituximab is ever approved by NICE - and he will do his best to ensure it isn't - he would have to prescribe it or, more likely, to refer patients to other doctors to prescribe it. Once a physical treatment is approved he, as a psychiatrist, should ony be treating patients with ME if they also had psychiatric illness and that was the major concern.

Proper investigation and treatment of patients with ME is expensive. In the uk labelling it as a psychiatric problem means patients are denied proper testing. Its supposed to be a diagnosis of exclusion but many peope dont even get the few recommended tests. Hence you get things like undiagnosed coeliac disease. When you do get a decent ME service (like Newcastle) 40% are found to have treatable problems. I quote "(40%) of patients seen by the Newcastle Service could in fact be diagnosed with other conditions. The most common alternative diagnosis in these patients was fatigue associated with a chronic disease (47% of all alternative diagnoses). The next common alternative diagnosis was primary sleep disorder (20%), including 8 patients with obstructive sleep apnoea and 12 with another primary sleep disorder – an important finding since sleep disorders form a significant and potentially treatable diagnostic group. Furthermore, 15% of all alternative diagnoses were psychological/psychiatric illnesses (most commonly, depression, anxiety and post-traumatic stress disorder); 13% were “unexplained” but not ME/CFS (5.2% of total referrals); and 4% were cardiovascular disorders (vasovagal syncope in patients with fatigue symptoms, who also had a history of episodes of loss of consciousness"

 

[sianrecovery]

Awful - given how damn easy it is to rule out sleep apnea. My doctor here in the UK won't test for it. Partly thanks of course, to the likes of Wessely. Thanks also to Lisa for her critique.

 

[Cateye]

These are his words you'll read in this link. Time and time again he discouraged full examination .

His devastating influence on Medical perception and thus on lifes of ME patients, are felt not only in the UK but in several other countries.
Our situation is horrible. And yes, he has by far the biggest role in this horrific tale.

If only it were a 'tale' and not real life.

http://forums.phoenixrising.me/index.php?threads/simon-wessely-quotes.21025/

 

[AnnieS]

Wessley has made it very clear numerous times over his involvement in this illness that he believes it's psychiatric in origin and bio medical treatment will not help. He has an utter cheek to now try and suggest he is merely saying his treatments may be one source of help (not forgetting the PACE trial showed this isn't even true) and he welcomes bio medical treatment too

 

[Cort]

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.

Thanks William

 

[Cort]

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.

It's selective in that I focused on parts of recent papers that answered the questions I was asking. It's not selective in that I simply took the last three or four papers I could get my hands on.

Wessely et. al. do surely believe that deconditioning and patterns of behaviour cause problems and can exacerbate ME/CFS but that also not the whole story. Let's be fair - if Wessely says in print that ME/CFS is a neurological/psychiatric disorder along the lines of autism/ Parkinson's and depression and that the biological causes of fatigue needed to be studied further - then let's take him at his word. (He's actually saying something very similar to Mady Hornig there.)

I wouldn't have Simon Wessely lead a research program into ME/CFS - he's a psychiatrist and he's going to push as hard for CBT/GET as he can - but he doesn't appear to be saying - at least anymore - that it's all deconditioning and wrong thinking (???)

 

[Cort]

Wessely thinks blinding will be a problem in a rituximab trial, I dont think he has ever mentioned this as a problem in the PACE trial. In fact it isn't as much of an issue issue for rituximab as for PACE as they plan to infuse saline so the patients, at least, will not be aware of what they get. Don't know enough about rituximab to know if those administering the solutions can tell the difference. As I know this I'm sure Wessely does - and is just trying to undermine the rituximab trial. Dont think he's ever mentioned blinding as a problem for PACE or accepted any of the other well documented problems. I'm afraid in the UK those prbems, despite being well documented, are still largely ignored by the medicl establishment and the press.

You've paraphrased some of his comments so its not possible to point out the areas where he has been evasive or economical with the truth.

If Rituximab is ever approved by NICE - and he will do his best to ensure it isn't - he would have to prescribe it or, more likely, to refer patients to other doctors to prescribe it. Once a physical treatment is approved he, as a psychiatrist, should ony be treating patients with ME if they also had psychiatric illness and that was the major concern.

Proper investigation and treatment of patients with ME is expensive. In the uk labelling it as a psychiatric problem means patients are denied proper testing. Its supposed to be a diagnosis of exclusion but many peope dont even get the few recommended tests. Hence you get things like undiagnosed coeliac disease. When you do get a decent ME service (like Newcastle) 40% are found to have treatable problems. I quote "(40%) of patients seen by the Newcastle Service could in fact be diagnosed with other conditions. The most common alternative diagnosis in these patients was fatigue associated with a chronic disease (47% of all alternative diagnoses). The next common alternative diagnosis was primary sleep disorder (20%), including 8 patients with obstructive sleep apnoea and 12 with another primary sleep disorder – an important finding since sleep disorders form a significant and potentially treatable diagnostic group. Furthermore, 15% of all alternative diagnoses were psychological/psychiatric illnesses (most commonly, depression, anxiety and post-traumatic stress disorder); 13% were “unexplained” but not ME/CFS (5.2% of total referrals); and 4% were cardiovascular disorders (vasovagal syncope in patients with fatigue symptoms, who also had a history of episodes of loss of consciousness"

I provide numerous quotes straight from the text. Here's one where I didn't. It in regard to whether ME/CFS is a psychiatric condition

I have learned from bitter experience that it is best to answer this question with another. By psychiatric and psychological do you mean hysterical, non-existent
or imaginary? In which case the answer is unequivocally no. At other times I vary my question: do you consider illnesses such as schizophrenia, major depression,
Alzheimer’s disease or autism to be psychiatric or psychological? If you do, then the answer might be yes. Now, having agreed our terminology, what do we know?

First, we know that prospective studies have established that the risk of CFS is increased in people with a history of depression. Second, cross-sectional studies
that compared CFS with other medical conditions have shown that the proportion of CFS patients with co-morbid psychiatric disorders is too high to be simply
explained as a reaction to having the illness but is compatible with the idea that this co-morbidity might reflect a shared underlying CNS dysfunction. Third, we
know that, as with other chronic disabling conditions, addressing the pattern of beliefs, emotions and behaviours that CFS sufferers experience doesn’t explain
why they got ill in the first place but can play an important part in treatment, as confirmed in the large and elegant PACE trial5.

Why is there such resistance from some quarters? Some sadly continue to answer my first question above in the affirmative. It remains the case that conditions that are perceived or classified as psychiatric in origin are associated with stigma and are still being labelled as being ‘all in the mind’, and those who suffer from them are not given the same respect as those with ‘physical’ illnesses. Unless and until this changes, the controversy will persist.

 

[Cort]

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.

This - 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) - is a very bad thing and I think it goes to the heart of the anger towards Wessely. The UK medical system has boxed people with ME/CFS in and they have few options. That's the result of a total adherence to the "it's all in the mind" idea. It's also the result of little study into ME/CFS which has failed produce biomarkers and treatment trials that have focused mostly on behavioral therapies.

I would note that the CDC is in a very similar position. They are very leery of promoting anything that isn't "evidence-based" and there isn't much evidence-based support for non behavioral therapies. I submit that's because they haven't really been given the chance.

 

[tatt]

Cort I appreciate the effort you made but Wessely has for many many years insisted that ME is a psychiatric problem and only a psychiatric problem and has defended a therapy that makes some people a lot worse while doing very little for anyone else. If he hadnt existed it might have been possible to get some research into the real causes of ME years ago- and to get proper testing to rule out other diseases BEFORE someone is given an ME diagnosis.

Faced with increasing evidence of physical problems causing ME he is trying to preserve his dignity by misrepresenting his past pronouncements. That is how politicans - and he's a medical politician - operate. But some of us have experience of medical politics and recognise what he is doing. Take a look at this where he defends his early reserach arguing ME was like depression http://www.meassociation.org.uk/201...-fatigue-syndrome-journal-article-march-2012/ and where he said years later that actually he under-estimated the effect of anxiety ( by implication he is still writing off a physical cause). I'm paraphrasing but the full text is in the link. I dont think he has really said that the biological causes of the illness need to be investigated because he has said, many times, that this is a psychiatirc problem. Autism and schizophrenia are regarded as psychiatric problems, not physical ones, in the UK.

Wessely is already preparing the ground for denying the result of the rituximab trial, if it proves to be successful.

Ask him if you can publish the full correspondence and we can point out where he is deliberately misleading you.

 

[Cort]

Cort I appreciate the effort you made but Wessely has for many many years insisted that ME is a psychiatric problem and only a psychiatric problem and has defended a therapy that makes some people a lot worse while doing very little for anyone else. If he hadnt existed it might have been possible to get some research into the real causes of ME years ago- and to get proper testing to rule out other diseases BEFORE someone is given an ME diagnosis.

Faced with increasing evidence of physical problems causing ME he is trying to preserve his dignity by misrepresenting his past pronouncements. That is how politicans - and he's a medical politician - operate. But some of us have experience of medical politics and recognise what he is doing. Take a look at this where he defends his early reserach arguing ME was like depression http://www.meassociation.org.uk/201...-fatigue-syndrome-journal-article-march-2012/ and where he said years later that actually he under-estimated the effect of anxiety ( by implication he is still writing off a physical cause). I'm paraphrasing but the full text is in the link. I dont think he has really said that the biological causes of the illness need to be investigated because he has said, many times, that this is a psychiatirc problem. Autism and schizophrenia are regarded as psychiatric problems, not physical ones, in the UK.

Wessely is already preparing the ground for denying the result of the rituximab trial, if it proves to be successful.

Ask him if you can publish the full correspondence and we can point out where he is deliberately misleading you.

As you know I am not up on all things Wessely but that paper doesn't really bother me. He says there's no "Compelling" immune dysfunction - maybe natural killer cells are not compelling - a lot of people don't think they are because of how variable they are....I don't agree. I think he's left out a good deal of other research evidence as well. He wants validation in a field that's not well studied...

I also think that researchers are going to find problems with blood vessel function and the probably the mitochondria and it may end up in the muscles (and the brain.) I think the some, maybe most people with ME/CFS don't do well or do minimally well with mind/body techniques like CBT (i.e they are minimally treatable). But I don't really expect to agree with Wessely. He doesn't say ME/CFS is all in the mind here and he doesn't deny there are physical issues. He does have a psychiatric slant.

I can handle all that (in doses. ) So long as there are other figures to balance out some of the lapses I can handle it.

What is egregious is the UK medical system which has denied ME/CFS patients any options other than CBT/GET and UK research efforts that focused almost totally on behavioral research. That's the real problem in my opinion. To the extent that he's facilitated that - or the public believes he's facilitated that - is the extent to which he's going to spur alot of anger. That's my outsiders view of the situation.

I think we probably overestimated the links with affective disorder (and when I went back to the Maudsley we then did a neuroendocrine paper which was the first to suggest that there were some biological differences between major depression and CFS2) and underestimated the influence of anxiety. Over the years antidepressants have not proven that helpful in managing CFS, unlike the CBT model that we developed the following year. No compelling viral or immunological biomarker has been found. This is not as some claim for want of trying—as we were doing the interviews for the JNNP paper we also collected samples for a blinded study of the VP 1 antigen, which had been claimed to be a specific enteroviral marker and a test for ‘ME’.3 That would prove to be one of many false dawns in the story of CFS. It still seems to me that the most fruitful avenue for research is going to be via neurosciences, and understanding the nature of the sense of physical and mental effort, which is at the heart of the condition.

I continued for the next decade to work on problems like CFS, and had some successes. We showed for example that it was not ‘yuppie flu’, and that it also was not untreatable.4 It wasn’t plain sailing though, since it was impossible to get rid of the stigma of being a psychiatrist, which transferred itself to the patients. I found, and still find, that hard to accept, but it was a fact of life, and 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. Eventually I would move on academically, even though I continue to see CFS patients clinically.

I may have moved on but some things have not really changed. Re-reading the 1989 paper, I am struck by what we wrote in the discussion. In the intervening almost quarter of a century our observation on clinical bias has been partly addressed, but the rest remains as true as ever.

“It is not our intention to adjudicate between the opposing views of physical or psychological aetiology. With the expanding knowledge concerning the biological basis of many psychiatric illnesses such a division becomes increasingly meaningless. However, both patients, and some doctors, continue to insist on such distinctions. It is instead our purpose to point out the serious consequences that result from this division. Not only will this lead to bias in research based on general hospital samples (as most has been), but it also suggests that many patients are being deprived of effective treatment”.

 

[Martinigal]

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.

Thanks Cort for your thoughtful reply. I think that the most helpful thing for me was what I learned from Toni's book, and that was Acceptance. Acceptance is a difficult, never ending journey. It's a practice, so to speak, like yoga. The intention is never to be perfect, it's the journey of progressing without getting to some perfect point. So there is no judgement because you are right where you are supposed to be at any time. And believe me I am far from even growing in acceptance at this point. And things are so different for us all. Toni talks about appreciating what is around you, while she laid in her bed, looking out at a beautiful garden with birds chirping. I do not live in a beautiful environment. I hear horrible things because of where I live, there is no window to look out to calm me. Also I couldn't clean my house so that was always an issue, the chaos around me because I was unable to fix it. It's a complex thing, but when I was reading her book, I was much more present and accepting. Also, it was when I read Toni's book that I realized I was not alone in my isolation. I lost a lot of friends and family members when I fell ill. It never occurred to me that was very common when one becomes chronically ill. That really helped me a lot, knowing I was not alone in that. I would say if we all could adopt an energy of accepting where we are and all that comes with it, we'd all be a lot happier. Of course that doesn't mean we should sit quietly and stop advocating for ourselves, in fact we'd probably have more energy to advocate because our minds wouldn't be full of all the shoulds, coulds, want to's, loss we constantly think about. Advocating for the medical industry to take notice and continue to try is a wonderful thing to put energy into. I hope this makes sense.

 

[tatt]

So long as there are other figures to balance out some of the lapses I can handle it.

What is egregious is the UK medical system which has denied ME/CFS patients any options other than CBT/GET and UK research efforts that focused almost totally on behavioral research. That's the real problem in my opinion. To the extent that he's facilitated that - or the public believes he's facilitated that - is the extent to which he's going to spur alot of anger. That's my outsiders view of the situation.

"the public" believe he's faciitated that because it happens to be true. He is one of the doctors who has insisted on the distinction between physical and psychiatric illness by insisting it was "illness belief" that caused people to stay ill. There hasn't, until recently, been other figures in the uk to balance out - he has had that much influence. This is a smaller country than America and I don't think you appreciate what a strangehold one person can exert here.

You need to stop taking Wesseley's words at face value and look at what he actually does (blocks tests, blocks investigation).

 

[tatt]

realised I havent fully dealt with the quote "With the expanding knowledge concerning the biological basis of many psychiatric illnesses such a division becomes increasingly meaningless. However, both patients, and some doctors, continue to insist on such distinctions." Wessely has insisted - at length and to the considerable detriment of those in the UK - that the "biologic basis" of ME is that the illness is produced in the mind and that psychiatric treatment will enable people to get better. So its all in the thoughts. He believes that you can think yourself out of this illness with a bit of CBT and GET, despite all evidence to the contrary.

Why are you still here, Cort, and not thinking yourself better? And if that rather provocative comment makes you feel any anger you will perhaps begin to understand why so many people feel anger at Wessely. He claims to be a scientist but ignores scientific method.

 

[Cateye]

Cort, reread this please :
"Wessely et. al. do surely believe that deconditioning and patterns of behaviour cause problems and can exacerbate ME/CFS but that also not the whole story. Let's be fair - if Wessely says in print that ME/CFS is a neurological/psychiatric disorder along the lines of autism/ Parkinson's and depression and that the biological causes of fatigue needed to be studied further - then let's take him at his worD."

Neurological/psychiatric?
In the lines of autism, Parkinson,depression?
Causes of 'fatigue"?

Where is the Scientific proof for any of that? It's neurological with Psychological effects due to either inflammatory Cytokines etc in the brain or due to long term neglect and often abuse by doctors. Dealing alone, not being believed has it's effects, sure.
But his plee for 'neurolology/psychiatry' is way too obvious these years. And it truly has no scientific basis whatsoever.

Depression like MDD seems to be the opposite in fact. Cortisol high versus cortisol low, a recent study found certain genes up in one and down in the other.

Other than 'fatigue' there is not a lot if common ground. So he could also say ME is much like cancer, couldn't he? Fatigue is common but not the Hallmark for ME. I thought we all knew by now.

When people mainly feel fatigued, they don't have ME. ME has most in common with MS, if we have to look for another disease. Low grade inflammation, innate immune system problems, CNS abnormalities, ...

If You find a doctor who tests thoroughly, there ARE obvious patterns of immune dysfunction. Not only NK cells, but monocytes, bcells, interleukins/chemokines, rnasel, elastase, PGE2, extreme viral load peaks ... Patterns that are the same year after year after year.
It's not one marker that sets ME apart, but different markers together.

Under UK Influence, these tests are never ever performed by gp's or in Major university hospitals.

Probably the biggest gtb/get trial has been performed in Belgium. A report over 5 years of treating 800 patients in 'cfs Centers' in the biggest university hospitals was issued in 2008. It was a disaster. Not only did people get worse, the percentage of those (mild cases) still working at the beginning dropped. The percentage of those feeling better was only 6%, way under placebo percentages (16%).

This report never was published like Pace. They didn't intent to.
Consequences? The opposite of what You would expect after such a through report. All immune tests etc where advised against from then on! Ans CBT/get still remains the only accepted 'treatment' untill this day!

National social security doesn't want this to be legitmized. It's that simple.
We get the 'nothing wrong, back to work' after 'expert' 'examinations' (psychiatrists!).
If we don't we Loose our income.
I fought in court and won. But they can do it over and over again ...
So it's a sword of Damocles over your head, all the time.

CBT btw is not the same as TonI Bernhardt's acceptance. Don't mix those two. CBT is About changing daily life activity (read: no naps, apply the 20 minute rule: activity for 20 minutes, brief pauze, again activity for 20 minutes ... Try this feeling horribly sick and weak to the bone), About not looking for a physical explenation. Instead regard everything you've done, who You are, what or how You think as a maintaining factor, a causitive factor.
I've done it (to keep my benefits) so i know.

I get Wessely and his wish for psychiatry/neurology bc that's the way to keep ME patients in the psych offices. I don't get how You still can't read him as a narrowminded but very Well spoken, very influencial psychiatrist who seems to want ME kept out of neurology/immunology by any Means. Think 'insurances' and you'll probably understand.

Until now the US has not been under great CBT/get unfluence other than their infiltration of Science magazines.
But when you've been IN it for this many years like we have, when You have to fight on Every angle bc of it, when people You love get bedridden bc of it, or commit suïcide by Total neglect and ridicule, when misdiagnoses are a direct result if it, when the few Doctors who do believe and study and perform the needed tests get shunned and even loose their licence or professor positions bc of it, You would get the anger.

Tatt explains it better.
But this Goes further than the UK. How did Katrina get locked up do You think? And others?

I hope bc of recent Science -that can no longer be swepped away- i hope You escape the CBT/get dominance in the US. I really do.

It's the results of the fase2 by fluge & Mella that makes psychiatrists uncomfortable. For the first time.
Their research is much too solid to be neglected. This is where the psychiatry/neurology Card gets played in high gear. This is where a 'perhaps we were wrong' would have been much more welcomed.

 

[Martinigal]

"the public" believe he's faciitated that because it happens to be true. He is one of the doctors who has insisted on the distinction between physical and psychiatric illness by insisting it was "illness belief" that caused people to stay ill. There hasn't, until recently, been other figures in the uk to balance out - he has had that much influence. This is a smaller country than America and I don't think you appreciate what a strangehold one person can exert here.

You need to stop taking Wesseley's words at face value and look at what he actually does (blocks tests, blocks investigation).

This Wesseley character should step out of the forum of ME. Sounds like he's done some real damage in the way the medical community views ME and has caused potentially irreparable damage to those suffering from ME in the UK. At the very least he has pushed back any medical research on the ME for years. I don't know a thing about his work, but listening to the very real feelings of those speaking from that country, I would want him thrown out of the discussion.
That being said, just my opinion, what is GET? I've googled it but no results. Thanks!

 

[Cort]

realised I havent fully dealt with the quote "With the expanding knowledge concerning the biological basis of many psychiatric illnesses such a division becomes increasingly meaningless. However, both patients, and some doctors, continue to insist on such distinctions."

Wessely has insisted - at length and to the considerable detriment of those in the UK - that the "biologic basis" of ME is that the illness is produced in the mind and that psychiatric treatment will enable people to get better. So its all in the thoughts. He believes that you can think yourself out of this illness with a bit of CBT and GET, despite all evidence to the contrary.

Why are you still here, Cort, and not thinking yourself better? And if that rather provocative comment makes you feel any anger you will perhaps begin to understand why so many people feel anger at Wessely. He claims to be a scientist but ignores scientific method.

Based on my reading I just disagree that Wessely now believes that ME/CFS is all in the mind. I know he's focused on CBT/GET and I know that he's been a key figure in the UK going down the path they did. I haven't seen any evidence that he's objected to that - that he's ever called for more biological research. I've seen him vociferously object to downplaying the role CBT/GET and play. He's a behaviorist

Check out this proposed model of ME/CFS from 2009

There's a lot I don't like about this...The focus on psychology (overactive females with previous psych disorders who have increased use of doctors) who, after viral infection or whatever, spend too much time in bed or exhibit boom and bust activity and end up with to CFS. Tucked in there are biological changes.

It's an upsetting and incomplete look at ME/CFS and even though some biological changes are in there Wessely's complete focus on psychology. I don't believe that I had any unusual personality factors, I had not any previous psychological illnesses, I am not a woman, I was not overactive, and I was not under stress and I was not seeing doctors at all.

I don't fit any of his so called predisposing factors or his maintaining factors. After I got ill I did not get deconditioned. I did not spend prolonged periods in bed, I did not exhibit boom and bust activity -unless boom and bust activity would be trying to act normally - his model of ME/CFS does not fit me at all!

Yet does Wessely ever admit that a substantial percentage of patients do not fit his model? That he's cobbled together findings from studies that support his hypothesis and ignored those that don't? No he doesn't...It's a intellectually dishonest approach to this disease. He's in love with his hypothesis and he promotes it as much as possible and the UK has bought into it and many patients have reaped those costs.

To be honest, though, this ignoring of conflicting reports is an approach permeates research. Researchers often ignore conflicting reports in their studies. That is not integrity in research - it's trying to win a game. That's not how I was taught to do things.

I agree - it's a ugly thing..There's no denying that.

 

[Martinigal]

Based on my reading I just disagree that Wessely now believes that ME/CFS is all in the mind. I know he's focused on CBT/GET and I know that he's been a key figure in the UK going down the path they did. I haven't seen any evidence that he's objected to that - that he's ever called for more biological research. I've seen him vociferously object to downplaying the role CBT/GET and play. He's a behaviorist

Check out this proposed model of ME/CFS from 2009

There's a lot I don't like about this...The focus on psychology (overactive females with previous psych disorders who have increased use of doctors) who, after viral infection or whatever, spend too much time in bed or exhibit boom and bust activity and end up with to CFS. Tucked in there are biological changes.

It's an upsetting and incomplete look at ME/CFS and even though some biological changes are in there Wessely's complete focus on psychology. I don't believe that I had any unusual personality factors, I had not any previous psychological illnesses, I am not a woman, I was not overactive, and I was not under stress and I was not seeing doctors at all.

I don't fit any of his so called predisposing factors or his maintaining factors. After I got ill I did not get deconditioned. I did not spend prolonged periods in bed, I did not exhibit boom and bust activity -unless boom and bust activity would be trying to act normally - his model of ME/CFS does not fit me at all!

Yet does Wessely ever admit that a substantial percentage of patients do not fit his model? That he's cobbled together findings from studies that support his hypothesis and ignored those that don't? No he doesn't...It's a intellectually dishonest approach to this disease. He's in love with his hypothesis and he promotes it as much as possible and the UK has bought into it and many patients have reaped those costs.

To be honest, though, this ignoring of conflicting reports is an approach permeates research. Researchers often ignore conflicting reports in their studies. That is not integrity in research - it's trying to win a game. That's not how I was taught to do things.

I agree - it's a ugly thing..There's no denying that.

Wow Tatt, I thought that was a quite personal attack on Cort, who spends hours of his time delivering all sorts of information to us on ME and FMS. Please do not disrespect him in that way. No need to make this personal. Remember he is on your side!

 

[Snow Leopard]

Why should we care what SW thinks these days?

He held things back in the past, but he has less power these days than people seem to give him credit for.

Over-analysing SW's comments isn't going to advance the science, nor build research capacity for biological focused research.

Yes he has harmed us in the past, but we need to move forward and focus on something more constructive.

 

[Nasim Marie Jafry]

I have exchanged emails with Simon in the past, he can be charming and plausible, but he typically avoids the difficult questions. I am rather bemused at his opening statement: "Forgive me, but I am getting rather tired about the latest interest/comment ...' as he is usually quite happy to be in the limelight and has spent the last twenty years writing papers which convey the strong (entirely unsubstantiated) message that ME is perpetuated by false illness beliefs. The more severely ill you are, the more likely there are to be psychological reasons.

He has more or less successfully buried the illness ME in the UK and replaced it with a 'fatigue' narrative. He has not done this alone, he has esteemed colleagues such as Peter White (architect of infamous PACE trial), and has of course been propped up by lazy health editors.

Our health editors are no David Tullers, they lack all curiosity about the history of ME and prefer just to accept Simon's version. I am unusual perhaps in having been diagnosed with ME before Simon's deep involvement in the illness, many years ago, and I have seen how the ME narrative has been hijacked and distorted by psychiatry. I was diagnosed with Ramsay-ME by Peter Behan consultant neurologist in 1984, triggered by Coxsackie B4 virus. Behan wrote the preface to Ramsay's 1986 excellent text, 'Myalgic Encephalomyelitis and Postviral fatigue states: the saga of Royal Free disease', but you won't ever hear Simon refer to Ramsay-ME in his many media appearances - he prefers to bury it.

CFS as defined by Oxford criteria essentially weakened and diluted the criteria for ME in early nineties, to the extent that celebrities and soap stars now run around claiming to have had ME, but miraculously they always recover, unlike most pwME, who live with the relapsing and remitting symptoms for decades.

I appreciate as an outsider it is hard to understand exactly what the Wessely school has done in UK, and Simon always makes sure that he comes up smelling of roses, in fact it often seems to be much more about *him*, and not the 250 000 ME sufferers.

I imagine he is welcoming the Rituximab trial because it is simply untenable to keep the biopsychosocial line going. And for someone who is so invested in the welfare of ME patients, he has done precious little to counter the grotesque misrepresentation of the ME community in the UK media, and one would argue has actually aided it.

 

[tatt]

Wow Tatt, I thought that was a quite personal attack on Cort, who spends hours of his time delivering all sorts of information to us on ME and FMS. Please do not disrespect him in that way. No need to make this personal. Remember he is on your side!

it's not a personal attack on Cort at all - just an attempt to show him what Wesseley is like, because that is what Wessely has been saying to patients with ME. He doesn't express it quite as blatantly in writing but English doctors have understood his message. If you see it as a personal attack on Cort then you should see Wessely as personally attacking everyone in the UK who has CFS or ME.