Simon Wessely's Big Shift? CBT Icon Calls For Big Rituximab Trial

[Cort]

Big Shift?
[fright]

[/fright]The prime mover behind CBT and GET's prominence in the UK - the man who argued that chronic fatigue syndrome is not a real disease but is caused by poor coping skills - said in response to a recent Rituximab study that it's tragic that ME/CFS has not been taken seriously. He also called for a major Rituximab study to take place.

"There is now a strong case to be made for a larger trial," says Simon Wessely of King's College London, who has treated people using cognitive behavioural therapy.​

"The belief that [CFS] is all in the mind has been around since the beginning," he says. "It's tragic that it might take a study like this to take sufferers seriously."
​

Not All in One's Mind After All?

Simon Wessely has come a long way in 25 years. The biggest advocate for the idea that ME/CFS is, in fact, all in one's mind - that the disease is essentially a product of poor coping and illness beliefs - has by inference raised the possibility that it's not so - at least for some.

Check out some of the things he's said in the past.

Though disordered immunity and persisting viral infection have recently attracted attention, it is important that immunologists do not deflect attention away from the wider aspects of the chronic fatigue/postviral syndrome.

Anthony David, Simon Wessely, Anthony Pelosi. Lancet 1988:July 9th: 100?101

Manufactured by the Mind

Numerous times in the past Wessely has stated he believes ME/CFS is literally manufactured by the mind.

I will argue that ME is simply a belief, the belief that one has an illness called ME..... .I will argue that this line here [overhead slide] represents not the line between low and high cortisol responses [but] the line between real and unreal illness.

Simon Wessely, Microbes, Mental Illness, the Media and ME: The Construction of Disease, 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, April 1994.

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[/fleft]The biggest problem clinicians faced Wessely thought was not that ME/CFS was an illness but that patients actually believed they had a real illness.

The clinical problem we address is the assessment and management of the patient with a belief that he/she has an illness such as CFS, CFIDS or ME...The majority of patients seen in specialist clinics typically believe that their symptoms are the result of an organic disease process...

Sharpe M, Chalder T, Wessely S et al. General Hospital Psychiatry 1997:19:3:185?199

Psychological Intervention Critical

The biggest mistake an ME/CFS patient could make was to reject social or psychological intervention.

The rejection of any social or psychological intervention may set in motion a series of maladaptive behavioural patterns. If this is so, then one would expect the prognosis for neurasthenia/CFS to be poor. There is considerable evidence that this is so.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

Wessely was man who knew how to attract attention. He knew how to punch buttons and enjoyed doing so. In the statement below comparing ME/CFS to spirits and demons he ensured he would never be forgotten.

Spirits and Demons

In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the same...To the majority of observers, including most professionals, these symptoms are indeed all in the mind.

Simon Wessely. Editorial. NEJM 2000:342:2:129?130

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[/fright]By 2006 Wessely was still fighting against the recognition of ME/CFS as an actual illness

Labelling physical symptoms as an illness carries the risk of the symptoms becoming self-validating and self-reinforcing, often promoted by the Internet, support groups, self-help literature and mass media.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

Not a Serious Disorder

Whatever chronic fatigue syndrome was, it wasn't serious and treating it a biomedical disease one could have grave consequences for the patient including the production of something called an illness identity.

Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self-reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME. Diagnosis leads to transgression into the sick role, the act of becoming a patient even if complaints do not call for it, the development of an illness identity and the experience of victimization.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

Assigned to investigate Gulf War Syndrome, Wessely came to believe that the same maladaptive processes working in ME/CFS are at play in Gulf War Syndrome.

Instead Wessely favours psychological explanations for what he views to be a 'Gulf War health effect' which he believes to be caused by stress, specifically troops' anxiety about chemical weapons and vaccines, as well as misinformation about Gulf War Syndrome.[40] (Wikipedia)

Overview and Signs of Mellowing (?)

Wessely's never denied the physical triggers of the illness but has always believed that pyschological and social factors perpetuate it and should be the primary research and treatment focus.

His model proposes "that the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviours. These beliefs and behaviours interact with the patient's emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability..."

As studies emerged of pathophysiological dysfunction and the outcry against his thesis that ME/CFS is actually mostly in the mind grew and grew and instead of welcoming them Wessely began asserting that a drive to remove psychiatry from ME/CFS existed.

The Shift

Wessely's admission a couple of years ago hat we could all be completely wrong about ME/CFS suggested some mellowing may have taken place. Wessely's call for bigger Rituximab study essentially means he's admitting the possibility that he may have been very, very wrong.

Wessely is a big cheese. He was appointed a Fellow of the Academy of Medical Sciences - the highest honor and professional recognition in UK academic medical science in 1999, and was knighted in 2013. In 2014 he was elected president of the Royal College of Psychiatrists.

The UK officials who've been listening to Wessely dissuade them from pathophysiological research are now hearing him pull for a bigger Rituximab trial. Could Wessely pull a Paul on the road to Damascus type switch and go full bore advocating for a Rituximab trial? If he does how would the UK respond? The UK has funded some huge CBT/GET trials before. Would it help Invest in ME fund a really big trial?

That would be an amazing turnaround. As the Rituximab trial results come out others in the UK medical system must be starting to feel a bit queasy. Wessely's motivation for his statement may simply be an effort to get on the right side of history but the ME/CFS community can use that motivation and other similar ones to push for more and more funding.

• Find a Review of the Rituximab study Wessely reacted to here.

 

[Cort]

Check out the excellent New Scientist post on the latest Rituximab study to come out - which Wessely's comment was featured in

http://www.newscientist.com/article...ve-chronic-fatigue-syndrome.html#.VZkx7PlViko

 

[Merry]

He's smart in the sense of always maneuvering to make himself look good, in control, on the winning side.

I have puzzled over what exactly he means. What's tragic? What does "tragic that it might take a study like this" mean? What's "a study like this"? I considered the possibility that he was misquoted. Or cognitive dissonance or shame contributed to the awkwardness of the statement.

If he's trying to say how tragic that patients haven't been taken seriously all these years, when he himself has been behind that mistreatment, what a little shit he is.

What he should be saying is, "I was wrong. I'm so very sorry for the harm I've done."

 

[Cort]

He's smart in the sense of always maneuvering to make himself look good, in control, on the winning side.

I have puzzled over what exactly he means. What's tragic? What does "tragic that it might take a study like this" mean? What's "a study like this"? I considered the possibility that he was misquoted. Or cognitive dissonance or shame contributed to the awkwardness of the statement.

If he's trying to say how tragic that patients haven't been taken seriously all these years, when he himself has been behind that mistreatment, what a little shit he is.

What he should be saying is, "I was wrong. I'm so very sorry for the harm I've done."

The guys got some major cajones to suggest he wasn't behind the all in the mind stuff that's permeated the UK for decades - if that's what he did. I think you're right. It's hard to interpret what he said in those quotes. I imagine somewhere inside, though, he's worried about what the future might bring. His work could be quickly discredited.

In any case I'm glad he said what he said - it can only help.

 

[Cort]

He's smart in the sense of always maneuvering to make himself look good, in control, on the winning side.

I have puzzled over what exactly he means. What's tragic? What does "tragic that it might take a study like this" mean? What's "a study like this"? I considered the possibility that he was misquoted. Or cognitive dissonance or shame contributed to the awkwardness of the statement.

If he's trying to say how tragic that patients haven't been taken seriously all these years, when he himself has been behind that mistreatment, what a little shit he is.

What he should be saying is, "I was wrong. I'm so very sorry for the harm I've done."

Until I read the quotes collected on Wessely I didn't how far he had gone....I didn't know the tenth of it really.. They're rather amazing!

 

[Sarah1982]

I really hope this means doctors here in the UK will stop fobbing us off! But I'm confused regarding the comments, is this a good thing or not, In both your opinions? I've read and reread and still my brain won't kick in lol sorry!

 

[Cort]

I really hope this means doctors here in the UK will stop fobbing us off! But I'm confused regarding the comments, is this a good thing or not, In both your opinions? I've read and reread and still my brain won't kick in lol sorry!

It's a good thing. I think Merry is right to note that he was quoted and I have the feeling that the writer tagged some sentences together that weren't together before. His call for a bigger Rituximab study was clear, though, a nd given what he's stood for in the past - that is a jaw dropper.

Wessely's actually been quite good at debunking physiological findings in ME/CFS. For him to trust the Rituximab results suggests that he considers them to be quite strong - a good sign...

 

[sianrecovery]

I remember talking to someone in the field who had attended one of the Weasel's presentations at a conference, and been shocked at the contempt and mockery W had openly displayed for ME patients. I think he is an unprincipled careerist who built a little empire on his idea, and the process, led to the suffering and sometimes the deaths of a generation of ME patients in the UK. He doesn't publish interesting or original work; he is mediocre in every sense, other than the scale of the harm he has inflicted. That's the tragedy.

 

[serotone9]

The sooner history forgets that guy the better - preferably after he's been fully exposed as the charlatan he is.

 

[acouchy]

First time I read this quote I got excited then I realized that it is very vague. He could very well still be saying that this illness is a real psychological illness and not a real physiological illness. Don't know about the larger trial part of his comment. Wonder if he will try to link the study results somehow to mental illness. It just is not clear enough for me to believe that he has changed.

 

[Cort]

First time I read this quote I got excited then I realized that it is very vague. He could very well still be saying that this illness is a real psychological illness and not a real physiological illness. Don't know about the larger trial part of his comment. Wonder if he will try to link the study results somehow to mental illness. It just is not clear enough for me to believe that he has changed.

I know everyone is rightfully wary about Mr. Wessely. The way I see it this statement - "It's tragic that it might take a study like this to take sufferers seriously." can only refer to the positive Rituximab trial.

Unless he was quoted completely out of context i.e. that he actually considered it tragic that a chemotherapy drug trial was needed to take a psychological disorder seriously it seems like a positive statement to me. That fact that he was reported calling for a major Rituximab trial nixes the idea that he was being sarcastic.

The most likely interpretation is that he saying that he does consider the disorder serious and that it's tragic that it's taken a chemotherapy trial for that to be made clear. I don't know how that would be "tragic" though. If the drug works it's a boon, not a tragedy. The tragedy is that it's taken so long but he doesn't appear to be referring to that. I agree it's is an odd sentence that leaves room open for interpretation.

 

[acouchy]

I know everyone is rightfully wary about Mr. Wessely. The way I see it this statement - "It's tragic that it might take a study like this to take sufferers seriously." can only refer to the positive Rituximab trial.

Unless he was quoted completely out of context i.e. that he actually considered it tragic that a chemotherapy drug trial was needed to take a psychological disorder seriously it seems like a positive statement to me. That fact that he was reported calling for a major Rituximab trial nixes the idea that he was being sarcastic.

The most likely interpretation is that he saying that he does consider the disorder serious and that it's tragic that it's taken a chemotherapy trial for that to be made clear. I don't know how that would be "tragic" though. If the drug works it's a boon, not a tragedy. The tragedy is that it's taken so long but he doesn't appear to be referring to that. I agree it's is an odd sentence that leaves room open for interpretation.

Hopefully his statement means what it appears to mean. Should be interesting to see if he comments further. Wish phase 3 results were out now. Can't believe I am saying this... I wish he would comment again. I may be filled with disbelief but I am still secretly hoping that this is the first step in his walking away from this illness.

 

[Lartista]

PAGE 33 Why & When do Doctors Collude with Patients? Independent consultant Professor Simon Wessely paid for by UNUM PAUL REVERE to influence doctors to deny ME/CFS claims. (link below)
HE HAS NOT CHANGED, SO TO DO KID YOURSELF. He is UNETHICAL. In my past research of Idiot Simon Wessely was PAID for by UNUM PAUL REVERE to write semi-annual training papers/reviews influencing doctors deny ME/CFS patients disability claims, see link below page 33. THIS IS ONE OF THE MOST UNETHICAL DOCTORS I HAVE EVEN SEEN, only 2nd to my C.I.A./FDA/EPA research. With so many medical papers validating our serious illness he is trying to change directions NOT FOR US, but to get himself lined up for NEW MONEY to hurt the next unidentifiable illness. He is preparing to attack whatever illness the insurance companies tell him to go after next. If we were able to dig into the banks accounts of these doctors, we could find great amounts of compensation they get to influence the medical industry into denying claims. HIS GAME OF MAKING MONEY ON US IS OVER AND HE IS REALIGNING FOR HIS KNEW TARGET...
https://meagenda.files.wordpress.com/2008/12/cmoreport2007_up1431.pdf

 

[Cecelia]

I don't believe for a second that he has changed, only that his positioning has. I believe that he wants to be in front of whichever way the trend is going. He would not want to make his about face too late and have the glare of a spotlight on his consistent opposition to the idea that this is a physical illness and his contemptuous ridicule of patients. I think all he cares about is what is good for #1.

 

[Hello!]

Until I read the quotes collected on Wessely I didn't how far he had gone....I didn't know the tenth of it really.. They're rather amazing!

Same here. What he has done is unspeakably evil.

 

[Lartista]

PAGE 33 Why & When do Doctors Collude with Patients? Independent consultant Professor Simon Wessely paid for by UNUM PAUL REVERE to influence doctors to deny ME/CFS claims. (link below)
HE HAS NOT CHANGED, SO TO DO KID YOURSELF. He is UNETHICAL. In my past research of Idiot Simon Wessely was PAID for by UNUM PAUL REVERE to write semi-annual training papers/reviews influencing doctors deny ME/CFS patients disability claims, see link below page 33. THIS IS ONE OF THE MOST UNETHICAL DOCTORS I HAVE EVEN SEEN, only 2nd to my C.I.A./FDA/EPA research. With so many medical papers validating our serious illness he is trying to change directions NOT FOR US, but to get himself lined up for NEW MONEY to hurt the next unidentifiable illness. He is preparing to attack whatever illness the insurance companies tell him to go after next. If we were able to dig into the banks accounts of these doctors, we could find great amounts of compensation they get to influence the medical industry into denying claims. HIS GAME OF MAKING MONEY ON US IS OVER AND HE IS REALIGNING FOR HIS KNEW TARGET...
https://meagenda.files.wordpress.com/2008/12/cmoreport2007_up1431.pdf

Cort, I have a doctor friend in England sick with our illness. He was he one who turned me onto researching Wessely and I found years of documents where he was PAID by UNUM to go against us, go against doctors who felt bad for us and tried to help us, he went to all odds to discredit us. HE IS PAID BY INSURANCE COMPANIES TO DO THIS DISGUSTING BEHAVIOR. He need to find the next illness... MCS Multiple Chemical Sensitivity is at risk... anything that causes disability and has no tangible proof is where he will go..

 

[Simone]

For me, Wessley's quotes in the New Scientist article were what really stood out too. It's difficult to tell whether he is changing his beliefs around the underlying cause of ME/CFS, or he's positioning himself so as to still be an authority on ME/CFS (by quietly changing sides when no one is looking). But that he felt compelled to make such a statement reflects the strength of Rituximab as a potential treatment. (And, if Rituxmab is an effective treatment (& more effective than a placebo), it would be difficult to maintain the Deconditioning-Exercise Aversion model, which will leave Wessley with a bit of an issue on his hands).
It strikes me too that many outside the ME/CFS community would be unaware of Wessley's role in the history of ME/CFS treatment. Where we might read cognitive dissonance in his comment, someone outside the community might see a highly respected expert and advocate for pwME/CFS. The door is still open for him to change horses... to reframe his work as an essential component of treatment (ie: modify GET to have a more biometric basis, along the lines of Klimas/Van Ness; position CBT where it should be: as a support/coping mechanism). Perhaps he is positioning to yet be on the right side of history?

 

[Lartista]

For me, Wessley's quotes in the New Scientist article were what really stood out too. It's difficult to tell whether he is changing his beliefs around the underlying cause of ME/CFS, or he's positioning himself so as to still be an authority on ME/CFS (by quietly changing sides when no one is looking). But that he felt compelled to make such a statement reflects the strength of Rituximab as a potential treatment. (And, if Rituxmab is an effective treatment (& more effective than a placebo), it would be difficult to maintain the Deconditioning-Exercise Aversion model, which will leave Wessley with a bit of an issue on his hands).
It strikes me too that many outside the ME/CFS community would be unaware of Wessley's role in the history of ME/CFS treatment. Where we might read cognitive dissonance in his comment, someone outside the community might see a highly respected expert and advocate for pwME/CFS. The door is still open for him to change horses... to reframe his work as an essential component of treatment (ie: modify GET to have a more biometric basis, along the lines of Klimas/Van Ness; position CBT where it should be: as a support/coping mechanism). Perhaps he is positioning to yet be on the right side of history?

Research who pays him and you will know that a tiger does not lose it's stripes just because you shave him. Wessely gets paid by independent insurance companies to influence opinions to deny disability claims for ME/CFS and other illnesses. He will move on the the next illness that dose not have a traceable diagnosis to make his next commision. His time of done making money on us.

 

[Cort]

what I don't understand how he makes money off of suggesting that's a big

Research who pays him and you will know that a tiger does not lose it's stripes just because you shave him. Wessely gets paid by independent insurance companies to influence opinions to deny disability claims for ME/CFS and other illnesses. He will move on the the next illness that dose not have a traceable diagnosis to make his next commision. His time of done making money on us.

consultant Professor Simon Wessely paid for by UNUM PAUL REVERE to influence doctors to deny ME/CFS claims. (link below)
HE HAS NOT CHANGED, SO TO DO KID YOURSELF. He is UNETHICAL. In my past research of Idiot Simon Wessely was PAID for by UNUM PAUL REVERE to write semi-annual training papers/reviews influencing doctors deny ME/CFS patients disability claims, see link below page 33. THIS IS ONE OF THE MOST UNETHICAL DOCTORS I HAVE EVEN SEEN, only 2nd to my C.I.A./FDA/EPA research. With so many medical papers validating our serious illness he is trying to change directions NOT FOR US, but to get himself lined up for NEW MONEY to hurt the next unidentifiable illness. He is preparing to attack whatever illness the insurance companies tell him to go after next. If we were able to dig into the banks accounts of these doctors, we could find great amounts of compensation they get to influence the medical industry into denying claims. HIS GAME OF MAKING MONEY ON US IS OVER AND HE IS REALIGNING FOR HIS KNEW TARGET...
https://meagenda.files.wordpress.com/2008/12/cmoreport2007_up1431.pdf[/QUOTE]
But how does he make money of love

PAGE 33 Why & When do Doctors Collude with Patients? Independent consultant Professor Simon Wessely paid for by UNUM PAUL REVERE to influence doctors to deny ME/CFS claims. (link below)
HE HAS NOT CHANGED, SO TO DO KID YOURSELF. He is UNETHICAL. In my past research of Idiot Simon Wessely was PAID for by UNUM PAUL REVERE to write semi-annual training papers/reviews influencing doctors deny ME/CFS patients disability claims, see link below page 33. THIS IS ONE OF THE MOST UNETHICAL DOCTORS I HAVE EVEN SEEN, only 2nd to my C.I.A./FDA/EPA research. With so many medical papers validating our serious illness he is trying to change directions NOT FOR US, but to get himself lined up for NEW MONEY to hurt the next unidentifiable illness. He is preparing to attack whatever illness the insurance companies tell him to go after next. If we were able to dig into the banks accounts of these doctors, we could find great amounts of compensation they get to influence the medical industry into denying claims. HIS GAME OF MAKING MONEY ON US IS OVER AND HE IS REALIGNING FOR HIS KNEW TARGET...
https://meagenda.files.wordpress.com/2008/12/cmoreport2007_up1431.pdf

Research who pays him and you will know that a tiger does not lose it's stripes just because you shave him. Wessely gets paid by independent insurance companies to influence opinions to deny disability claims for ME/CFS and other illnesses. He will move on the the next illness that dose not have a traceable diagnosis to make his next commision. His time of done making money on us.

 

[Cort]

For me, Wessley's quotes in the New Scientist article were what really stood out too. It's difficult to tell whether he is changing his beliefs around the underlying cause of ME/CFS, or he's positioning himself so as to still be an authority on ME/CFS (by quietly changing sides when no one is looking). But that he felt compelled to make such a statement reflects the strength of Rituximab as a potential treatment. (And, if Rituxmab is an effective treatment (& more effective than a placebo), it would be difficult to maintain the Deconditioning-Exercise Aversion model, which will leave Wessley with a bit of an issue on his hands).
It strikes me too that many outside the ME/CFS community would be unaware of Wessley's role in the history of ME/CFS treatment. Where we might read cognitive dissonance in his comment, someone outside the community might see a highly respected expert and advocate for pwME/CFS. The door is still open for him to change horses... to reframe his work as an essential component of treatment (ie: modify GET to have a more biometric basis, along the lines of Klimas/Van Ness; position CBT where it should be: as a support/coping mechanism). Perhaps he is positioning to yet be on the right side of history?

You may be right. he does appear to be repositioning himself. I doubt he would give up on CBT/GET. he would surely try to insure that is added as an adjunct treatment - which would be futile honestly if a real treatment was found. Maybe it could be a mini adjunct treatment