Professor Simon Wessely says he is misunderstood

[Bob]

To back up some of my points:

Somatoform Disorders.
(WPA Series in Evidence & Experience in Psychiatry)
Volume 9
2005
Editors: Mario Maj, Hagop S. Akiskal, Juan E. Mezzich and Ahmed Okasha
ISBN: 978-0-470-01612-1
http://eu.wiley.com/WileyCDA/WileyTitle/productCd-0470016124.html

Chapter 5: Chronic Fatigue and Neurasthenia​

Chronic Fatigue and Neurasthenia: A Review​

Michael C. Sharpe and Simon Wessely​

[Page 253]​

Medical or Psychiatric Diagnosis?

​

Parallel with the debate about aetiology is the argument about whether CFS is most appropriately regarded as "medical" or as "psychiatric". For the same symptoms, the medical diagnosis may be CFS and the psychiatric diagnosis may be an affective, anxiety or somatoform disorder. It can be argued that neither of these diagnoses alone is adequate. The proper use of the DSM-IV axes allows the patient to be given both a medical (Axis III) and a psychiatric (Axis I) diagnosis: the final diagnosis may, for example, be CFS/generalized anxiety disorder. However, we ideally need a classification that avoids two diagnoses being given for the same symptoms. This is a task for the authors of the forthcoming DSM-V [7].​

​

I have yet to get hold of a complete copy of this paper, but I've read quite a bit of it - enough of it to understand the model of illness being promoted.
Unless I've totally misinterpreted it, the above quote seems quite clear that Wessely can see no differentiation between CFS and an anxiety disorder. (He's not necessarily equating them, but he can't differentiate them.)
This, to me, is disturbing, and IMO startlingly ignorant.
The reason, I believe, that he cannot differentiate the two, is that he is only interested in the 'fatigue' aspect of the illness, as evidenced by the following quote:

A Discrete Disorder?

Although CFS is often regarded as a discrete condition, much as neurasthenia used to be, the severity of the symptoms of fatigue is continuously distributed in the general population [2] and the case definition can also be regarded as simply defining cut-off points on these continua.

In terms of the biological aspects of CFS, my understanding is that he believes that a biomedical 'trigger' is only involved in the initial stages of CFS, and then it becomes irrelevant to the perpetuation of symptoms. (I can't remember if he believes that a biological trigger is necessary).

These quotes need to be read in the full context of the whole paper, which is rather contradictory, and vague in many places, IMO. But my understanding is that these quotes follow the general thrust of the paper as a whole.

See my other notes on this paper, here:
http://forums.phoenixrising.me/inde...nding-up-for-science.20231/page-7#post-310521

 

[Firestormm]

Thanks Bob. I shall take a look. You actually read this from Wessely? He does talk about the 'biological' nature of ME for example and what he has been able to determine which - like others - is not very much, but it is there, pituitary, and immune stuff too I seem to recall. Sorry no time to look through it again right now - bit stressed for time.

And I am left wondering - for what it's worth - whether any claims made against him are to some or greater extent a reflection of improving understanding over the years i.e. in the oft-cited 1990's papers he was fishing, in the 00's things began to become clearer; and in the 2010's things are more clear but we still don't know what the f**** is causing ME.

When I say 'clear' I mean that this is definitely a genuine medical condition in Wessely speak. It is 'real'. Although I find the necessity to say this somewhat discomforting - but NICE repeat it so there we go. What causes this aspect is uncertain although he has said himself he's made some discoveries in this regard.

As has been said countless times - what do you do NOW with people who are severely sick but for whom there is no clear cause, or specific treatment? How about 'tea and sympathy' and some attempt at trying to improve their quality of life, if they are able to do more than be bed-bound? And for those most severely affected? Well sympathy and understanding and doing as much as you can - brushing your hair I seem to recall is one example from NICE. Bit crude but there we go.

On BS last night/this morning the 'evidence' what little there has been advanced come from a paper of his dated 1990. Would you like me to forward the 2005 paper if you have a full citation and let them have a look at it? See what interpretation can be made from it?

Edit:

Sorry. Didn't pcik up on the link. My bad.

 

[alex3619]

Hi Firestormm, I too have had concerns over how many of the arguments raised are anachronistic. Commentaries have to take into account the prevailing argument and knowledge of the day. However if this were properly addressed then complete and up to date and unambiguous statements would regularly be made by those pushing CBT/GET. Typically I do not see this.

This is particularly the case in anything that involves evolving scientific discoveries. The position should change over time. However, I think it might be fair (I have yet to investigate much though) that current stated positions do not clearly reflect current science in all too many cases.

 

[Firestormm]

Hi Firestormm, I too have had concerns over how many of the arguments raised are anachronistic. Commentaries have to take into account the prevailing argument and knowledge of the day. However if this were properly addressed then complete and up to date and unambiguous statements would regularly be made by those pushing CBT/GET. Typically I do not see this.

This is particularly the case in anything that involves evolving scientific discoveries. The position should change over time. However, I think it might be fair (I have yet to investigate much though) that current stated positions do not clearly reflect current science in all too many cases.

Morning Alex - ooppss afternoon here - my bad again

Yeah it's a mish-mash. You ever talked to a shrink? Ever got an unambiguous answer? Me neither. Is it a failing or is it a reflection of not really knowing for sure?

I was thinking earlier. You know when science science gets published and we all rush to take a peek. You know? proper science. Stuff we can believe in. Tangible stuff. I mean we give that - I would suggest - a correct amount of caution, don't we?

Our condition is NOT clearcut. After all these years something would have been produced by now. I really do believe that. Anyway, I think it's a bit 'odd' that we treat science science with due skepticism and yet seem to disregard and scorn the hypothesise presented in the lesser-science papers.

Are we being fair? Do we really care? I don't. A complete mind-&&&& some of that stuff. Broad strokes might be applied up the line, but it's how they are delivered on the ground that gets more of my focus I am afraid.

Sorry. Bit wonky delivery above. Said some stuff here earlier this morning might better explain where I am coming from. Probably won't though!! Bit done in now

 

[Valentijn]

Thanks Bob. I shall take a look. You actually read this from Wessely? He does talk about the 'biological' nature of ME for example and what he has been able to determine which - like others - is not very much, but it is there, pituitary, and immune stuff too I seem to recall. Sorry no time to look through it again right now - bit stressed for time.

The problem I have with those sorts of statements is that they are made for the express purpose of placating patients, their families, etc. With most bad-CBT proponents, they will make very different statements to different audiences:

A) "I believe your symptoms are real" - said to the patient, at the start of bad-CBT.
B) "You could recover if you change your outlook" - said to the patient later in CBT, after trust has been gained.

These aren't really contradictory, because symptoms are real regardless of whether they originate biologically or psychologically. But statement A is extremely misleading.

C) "Patients improve with psychological treatments" - said in research papers.
D) "CFS is similar to other psychosomatic/functional disorders because ..." - also in research papers.

Statements C and D strongly imply that the cause is largely or entirely psychological, even if the paper doesn't come out and say it.

E) "CFS is a somatoform disorder, and patients should be managed with appropriate psychological treatment." - said in guides written for other practioners.
F) "Patients with somatoform disorders, such as CFS, waste resources by getting referrals, hence such referrals should be denied once the CFS diagnosis is certain." - said in lectures and presentations.

They say what they think in front of their peers and future peers. No patients are expected to gain access to these materials (say "hi" to the internet), so opinions are phrased most bluntly.

I can't provide specific examples of this, especially as pertaining to Simon Wessely, but it is a general theme in ME/CFS literature. Be vague and conciliatory when addressing patients, make strong implications in research publications but leave a little wiggle room for later denial, and say what you think in front of a sympathetic audience when you don't think your statements will reach the patient population.

But based on this generalized experience, if you want to know what Wessely really thinks, his website is the last place to look.

 

[Bob]

The problem I have with those sorts of statements is that they are made for the express purpose of placating patients, their families, etc. With most bad-CBT proponents, they will make very different statements to different audiences...

Yes, I agree with this. If you want to know about Simon Wessely's work, don't read his PR material, but look at his work, as a whole. And be aware that his opinions are not often stated explicitly. But you have to understand the consequences, or implications, of his work, in order to understand his approach to CFS.

For example, in those quotes that I gave from the 2005 paper. He doesn't state that CFS is an anxiety disorder. But he asserts that it is not possible for a clinician to differentiate CFS from anxiety disorders. Now, some people might say that is perfectly reasonable, but that's only if they don't fully understand the nature of CFS/ME, and if they believe that the only symptom that patients suffer from is a vague feeling of 'fatigue', and if they believe that CFS is a neurotic illness. But from another perspective, it shows that he doesn't understand the fundamental nature of CFS/ME and hasn't listened to (or he's listened but not 'heard') any CFS/ME patients describe their symptoms, and that he isn't interested in the myriad of exploratory biomedical CFS/ME research that has been carried out. With the right knowledge, CFS/ME can easily be distinguishable from anxiety disorders.

My current understanding of Wessely's work is that he believes that CFS is at least partly a result of focusing to much on symptoms (leading to 'fear' and then 'avoidance' and then 'deconditioning'.) And that if we are distracted from our symptoms, and helped to gradually exercise more, then we will get better. His theory revolves around symptoms being 'perpetuated' (i.e. 'caused') purely by psychological factors, after the initial (possibly biological but also psycho-social?) trigger has been resolved. It's not a helpful approach, as it ignores the reality of a heavy-hitting biomedical illness, involving a unique type of reactive exhaustion and systemic symptoms.

It is only by understanding the differences between CFS and psychiatric/psychological illnesses, that advances can be made in CFS/ME research. So that attitude of trying to fit CFS into a psychiatric mould, inhibits insight into CFS, blocks appropriate research into CFS, and ultimately blocks treatments being discovered.

 

[natasa778]

As has been said countless times - what do you do NOW with people who are severely sick but for whom there is no clear cause, or specific treatment? How about 'tea and sympathy' and some attempt at trying to improve their quality of life, if they are able to do more than be bed-bound? And for those most severely affected? Well sympathy and understanding and doing as much as you can - brushing your hair I seem to recall is one example from NICE. Bit crude but there we go.

Gosh I don't believe I am reading this!

Whoever said that one MUST understand the clear cause of a condition or have specific bullet proof treatment to target root cause???? Those def help, but OMG where would we be if we only medically treated diseases with known root causes ? Ever heard of treating underlying pathologies, going as far upstream as possible, whilst waiting for further answers?

 

[Bob]

Gosh I don't believe I am reading this!

Sorry, my post was based on a serious misunderstanding.
I thought Firestormm was quoting SW.

It looks bad, but that's not how it would be interpreted by his intended audience.
To the intended audience, what it means, is that there is no widely accepted treatment for CFS.
So what do you do for a patient if there is no treatment?
You can only offer sympathy, understanding and support.

He does have a provocative way with words, which is probably symptomatic of his beliefs about the illness.
It's almost as if he is saying that nothing really needs to be done for the patient, beyond making them a cup of tea and brushing their hair.
It comes across as very patronising, and dismissive.
But if you believe that a patient is bed-bound because they are focusing on their symptoms too much, then this sort of attitude is not surprising.

But it needs to be read in context. Does he go on to discuss exactly what can be done for patients, in practical terms? What meds they can be offered. What personal care they can be offered. How to help them get well?

Or does he say that no personal care should be offered because that would reinforce illness beliefs?

 

[natasa778]

It looks bad, but that's not how it would be interpreted by his intended audience.
To the intended audience, what it means, is that there is no widely accepted treatment for CFS.
So what do you do for a patient if there is no treatment?
You can only offer sympathy, understanding and support.
He does have a provocative way with words.

What I cannot believe ... (for lack of better words as am gobsmacked) that there are patients who suppose themselves intelligent who fall for this crap.

 

[Valentijn]

What I cannot believe ... (for lack of better words as am gobsmacked) that there are patients who suppose themselves intelligent who fall for this crap.

I'm not surprised by it.

These people have spent decades learning how to screw with people's heads.

 

[Wildcat]

The problem I have with those sorts of statements is that they are made for the express purpose of placating patients, their families, etc. With most bad-CBT proponents, they will make very different statements to different audiences:

A) "I believe your symptoms are real" - said to the patient, at the start of bad-CBT.
B) "You could recover if you change your outlook" - said to the patient later in CBT, after trust has been gained.

These aren't really contradictory, because symptoms are real regardless of whether they originate biologically or psychologically. But statement A is extremely misleading.

C) "Patients improve with psychological treatments" - said in research papers.
D) "CFS is similar to other psychosomatic/functional disorders because ..." - also in research papers.

Statements C and D strongly imply that the cause is largely or entirely psychological, even if the paper doesn't come out and say it.

E) "CFS is a somatoform disorder, and patients should be managed with appropriate psychological treatment." - said in guides written for other practioners.
F) "Patients with somatoform disorders, such as CFS, waste resources by getting referrals, hence such referrals should be denied once the CFS diagnosis is certain." - said in lectures and presentations.

They say what they think in front of their peers and future peers. No patients are expected to gain access to these materials (say "hi" to the internet), so opinions are phrased most bluntly.

I can't provide specific examples of this, especially as pertaining to Simon Wessely, but it is a general theme in ME/CFS literature. Be vague and conciliatory when addressing patients, make strong implications in research publications but leave a little wiggle room for later denial, and say what you think in front of a sympathetic audience when you don't think your statements will reach the patient population.

But based on this generalized experience, if you want to know what Wessely really thinks, his website is the last place to look.

###########################################



.

well said and incisive, thanks for posting..... appreciated by someone who HAS read amounts of his work and transcripts/videos of his, prof wessely's, lectures

 

[Esther12]

Thanks Bob. I shall take a look. You actually read thisfrom Wessely? He does talk about the 'biological' nature of ME for example and what he has been able to determine which - like others - is not very much, but it is there, pituitary, and immune stuff too I seem to recall. Sorry no time to look through it again right now - bit stressed for time.

I posted what ended up being a quite lengthy response to that here: http://forums.phoenixrising.me/inde...-and-all-in-the-mind.13979/page-2#post-232012

I thought that he'd spun his own research and impact quite heavily. Looking back, my response was light on citations, but I was typing it up quickly, and he didn't cite his claims, so it was a chore to work out exactly what papers he was talking about.

eg:

We did a lot of biological studies you can see from the paper list on the website. We published on vitamin levels, the autonomic nervous system, HLA antigens and other genetics papers, growth hormone, why you need to test for celiac disease, anti nuclear antibodies, neuro imaging, DHEA and others. No, we didn't find the elusive biomarker, but it was not for want of trying. [12]​

So this is his spin against those critical of the emphasis given to psychological research? He hasn't referenced the papers for us to look through them, but I remember looking at the autonomic one specifically because he had mentioned it previously as evidence that he does not just focus on psychological research. Its worth bearing in mind that its a follow up study, after others had already found evidence of this abnormality. This is from the conclusion:

We conclude that some autonomic dysfunction is present
in CFS patients, the most likely explanation being physical
inactivity. Testing patients before and after physical activity
is restored, such as with graded exercise therapy or cognitive
behaviour therapy, could help confirm this suggestion

If that's his conclusion, fine, but I don’t think he should act like these sorts of papers are not part of his psychological work, or the promotion of the view that CFS is best treated as a cognitive-behavioural problem.

The thread that was from started with me just complaining about Wessely, but it's ended up being somewhere that I tend to post my (usually critical) thoughts on papers of his that I've read. I've got a blasted cold that will not leave me alone right now, so am not really up to joining in these discussions, but if you wanted to look at criticism of Wessely you could look there. I'd be quite happy to have you point out any area where you may feel I'd been unfair, in the thread or via PM (PM might be better for me, as it would mean I could respond slowly without having the discussion move on *cough* *cough*. Might work better for you too if you're stressed for time).

As has been said countless times - what do you do NOW with people who are severely sick but for whom there is no clear cause, or specific treatment? How about 'tea and sympathy' and some attempt at trying to improve their quality of life, if they are able to do more than be bed-bound? And for those most severely affected? Well sympathy and understanding and doing as much as you can - brushing your hair I seem to recall is one example from NICE. Bit crude but there we go.

Now, we work to ensure that patients can trust their doctors. We make sure that thsoe who make misleading claims about the efficacy of treatments are removed from positions on influence. We make sure that doctors know that if the engage in the psychosocial management of patients, or work to encourage cognitions which are thought to be 'positive' without the informed consent of patients, that this is wrong. There needs to be an acknowledgement of and apology for the false claims which have been made about the value of cognitive and behavioural interventions for patients diagnosed with CFS.

I don't know how worthwhile it is paying the NHS to provide tea and sympathy to CFS patients, and think that our current state of ignorance about CFS means that there is little value in medicalising aspects of patient's lives. Were it not for quackery about CFS promoted by those working within the NHS, I think that lots of CFS patients would be more able to get tea and sympathy from their own social networks. I'd have much rather been left to decide for myself how to live my own life than have been 'cared' for according to the BPS model. Everyone's different, and patients should have ways of being able to request different services as they think are appropriate, but I don't think that there should be an assumption that, just because someone has been diagnosed with CFS, that there is anything that the NHS can do to help: it seems far from clear to me that this is the case.

 

[Bob]

Were it not for quackery about CFS promoted by those working within the NHS, I think that lots of CFS patients would be more able to get tea and sympathy from their own social networks.

I think Wessely is of the belief that belonging to a social network (i.e. a support group) reinforces illness-beliefs, and therefore prolongs illness.
So I'm not sure if he believes that tea and sympathy are actually the best approaches to treatment.

The same for receiving welfare benefits: I think he believes that receiving welfare benefits reinforces illness beliefs.
My understanding is that some of the NHS clinics do not provide letters/evidence for welfare benefit claims because such letters would be a 'conflict of interest'. (i.e. they would not help the patient get better, but would reinforce the patients' belief that they are ill.)

I'm going from memory, so I could have some of this wrong, but I seem to remember seeing evidence for this.

 

[Enid]

But the man is a psychiatrist - tea and sympathy is the best they can offer.

 

[GracieJ]

I think Wessely is of the belief that belonging to a social network (i.e. a support group) reinforces illness-beliefs, and therefore prolongs illness.
So I'm not sure if he believes that tea and sympathy are actually the best approaches to treatment.

The same for receiving welfare benefits: I think he believes that receiving welfare benefits reinforces illness beliefs.
My understanding is that some of the NHS clinics do not provide letters/evidence for welfare benefit claims because such letters would be a 'conflict of interest'. (i.e. they would not help the patient get better, but would reinforce the patients' belief that they are ill.)

I'm going from memory, so I could have some of this wrong, but I seem to remember seeing evidence for this.

Mad hatter's tea party!

I think there is validity in the idea that something very deep, basic, and tribal is going on culturally about us -- abandon those who are too sick to travel, leave them to "die" in a sense. I'm amazed and shocked over and over (why would I get used to it??) how little people really THINK when a sick person is in front of them. Easier to give the knee-jerk, tribal preservation response of "There's nothing wrong... get up, get going, the tribe is moving out to the next pasture/oasis/hunting ground to avoid that other unfriendly tribe/pack of wolves/change of seasons. Oh -- and if there really is something wrong -- either die or get over it, because we're leaving NOW."

Those who do think about it are coming from a higher consciousness -- this person in front of me is sick, we live in a time where we have time and space now to slow down, have compassion, listen, deal with what is. It is not life or death survival issues, and most certainly not a black-and-white, get well or die scenario.

In doing my best to read up on Simon Wessely and piece together the paper trail, I really do think he started out with the best of intentions. I'm scratching my head on the rest... maybe this is his own gut-level, tribal, knee-jerk reaction for survival. Most people receiving hate mail and even death threats are wise enough to take precautions where needed, ignore the naysayers, and get on with it. If he truly had our best interests at heart, he would have done so, so I have to think that there is something else going on, a need for going down in history as a great scientist or something to the point where denial runs supreme. He IS misunderstood -- he has talked out both sides of his mouth so much, it's clear he really does not have our interests at heart, though he wants to claim he does.

With an illness with such horribly debilitating symptoms and few answers, tea and sympathy go a looooong way!!!

Edit after seeing Enid's response: Tea and sympathy from compassionate parties!!

 

[alex3619]

Anyway, I think it's a bit 'odd' that we treat science science with due skepticism and yet seem to disregard and scorn the hypothesise presented in the lesser-science papers.

In a way this is the crux of the problem. Science-based science has a claim to being the best we can produce with current understanding as its (eventually) tested and examined. Faulty science usually gets rejected, though it can take a while.

Nonscience is something else. It cannot be properly tested. It cannot be properly verified. In the case of psychosomatic medicine it tends to rely on subjective verification. The underlying model is never tested. Outcomes are subject to huge bias as objective markers are not used. As we have seen in CBT/GET there are objective markers yet they scamper from them whenever they can. Why? Excuses like its too hard for patients simply do not have credibility.

Fold in systemic to delibate confusion or use of vague terms and even reasoning about these issue is problematic. It can be spun any which way.

Valentijn in post 285 is talking about some of the types of argument that led me to start writing my book. When researchers cannot, based on their models of disease, treat patients with honesty, then there will always be a lack of trust. That works two ways. I wonder how much that has led them to misunderstand and misinterpret patients? When they give conflicting messages to different nonpatient audiences though that raises a whole new series of questions. I wlll be asking many of them in my book. Will the real opinion please stand up? That is why simply quoting something from these writers may have no relevance to their real stance.

I agree there is a huge stigma associated with CFS and ME research in connection with psychiatry. However its mostly due to psychosomatic medicine itself. Far too many doctors don't want anything to do with it. The same goes for researchers. According to Ghaemi (I reviewed his book earlier this year) most new docs don't want anything to do with psychosomatic medicine, even those interested in psychiatry. The discipline is dying, very very slowly. Most just don't take it seriously. The BPS was proposed as a method to revitalize psychosomatic medine. It failed. I don't think it had to fail, I think it failed because BPS is more bPs with psychosomatic medicine taking an undeserved and privileged place. I think most docs can sense that, though of course this is only my opinion - I can't substantiate it. I doubt whether most bureaucrats understand that though.

Bye, Alex

 

[Enid]

There's one problem with tea and sympathy - it came from ordinary mortals - like picking me up in the street - though medics decalared me well. Even the Police stopped to ask if all was well.

 

[GracieJ]

It also strikes me that Wessely made mistake one as a psychiatrist, figuratively speaking: If a person is in your office for an appointment, that person 1) must have a psychiatric problem and 2) must need psychiatric care.

It makes me very sad that CBT has been used in this way. As presented in David Burns' book that came out many years ago, it is a very useful set of life skills and management tools, emotionally healthy ways of dealing with life that many of us just do not come into in the natural course of growing up with other human beings who also did not grow up with that skill set.

(Book title is Feeling Good: The New Mood Therapy.)

 

[alex3619]

GracieJ

 

[GracieJ]

alex3619 That's enough to give a small child nightmares! lol