Professor Simon Wessely says he is misunderstood

[taniaaust1]

Alex. Not ALL psychiatrists or psychologists fail to understand ME! Jesus Christ. You have absolutely no idea how hard some people have been engaging with ALL medical disciplines to better ensure we are taken SERIOUSLY!

It may be different where you are but I can speak as someone who has seen about 7 different psychiatrists and psychologists. I can say that ONLY ONE seemed to have a good understanding of what things are like for ME patients, none of the others had a clue what I was going throu at all. (I can say thou I didnt have any of those push me to exercise as GET and ME/CFS like CBT dont seem to be an "in" fad thing here in Australia with these psych health professions as it is in places like the UK BUT there was a COMPLETE LACK OF UNDERSTANDING on the degree that ME was affecting me and what I was going throu due to it. (I used to go to my psych appointment and was so sick I'd be laying the whole time on their couch and almost falling asleep so the other was doing nearly all the talking)

They couldnt offer me any of the support I needed as they just didnt understand it.. and hence tried then blaming other things on my stress at not getting the help I was needing in my general life to function... so I got hit with a borderline personality disorder diagnoses which is completely wrong as that is something .. A PERSONALITY disorder, one is supposed to develop as a teen not develop when over 30 years old. I was suicidal for the reason I couldnt cope as jsut wasnt getting the PHYSICAL help I was needing just to have the normal life basics. I even got told by a couple of them that they couldnt understand me at all (one ended up trying to get advice from another).

I believe i had PTSD from ME (as I fit the diagnostic criteria.. neighbours even rang the police one night as I was screaming in my sleep) but they wouldnt diagnose with it as they couldnt understand how one could get PTSD from ME and how others are treating you around it. The ME HAD almost killed me and with the lack of physical support.. I was scared it would end up killing me.

I was actually getting flashbacks at times of very bad ME incidences in the past. So not only did they give me a false diagnoses due to their lack of understanding (I'd already had a ME/CFS diagnoses given to me by three different CFS specialists so this false diagnoses just ended up on top of the other) but they also MISS diagnosing PTSD due to their lack of understanding of the ME/CFS. One comment one of them made was "You have to have real trauma to get PTSD". So they wouldnt try to treat me for PTSD and wouldnt give me any psych drugs due to their "borderline personality disorder" diagnoses.

My GP I had then didnt believe I had mental health issues due to what the psychs said and after sending me to psych after psych who kept saying the same thing (they'd jsut go by the previous wrong diagnoses of borderline personality disorder).. then my GP ended up ignoring me when Id go to him about collasping (and I dont think he believed in ME/CFS anyway. He ignored the letters my 3 CFS specialists sent him). The psychs.. undermined my whole medical treatment so I didnt get any help at all and just keep telling me that I had to learn to control my mood issues I was having (something I truely couldnt help at all thou I tried so my failed attempts to control my severe emotional states just made me feel even worst).

So I can say in my case the psychs .. 6 out of 7 of them.. were more harmful to me then of a help. (I still do see one occassionally.. the understanding of ME one thou I havent seen her for over a year. She helped me greatly with the trauma I'd had over bad doctor treatment and their negect of me. The psychs ended up making my CFS specialist say.. well deal with the BPD first and the ME/CFS later.. my other two CFS specialists retired.. so I ended up then with no one helping the ME/CFS and NO ONE treating my symptoms as the psychs had influenced how the CFS specialist thought). It was hell.. I went throu severe FM untreated, severe insomina (not able to sleep for days on end) untreated etc etc. Over 7 years of untreated hell. (I now days have quite a few prescription drugs from anti nausea drug they usually use in chemo patient and other drugs for my symptoms and are hence in a much better mental health state due to not being ignored and not left in severe suffering.. and on top do now get a some gov supported home help to help my basic needs which are affected by ME, be met).

*Note.. It was after YEARS (4 years? I was going weekly at one point) of psychs.. I found out thanks to finally a better specialist who did more testing.. we found out that I had hyperinsulinemia which causes my severe (some times suicidal) mood swings which had lead to the false borderline personality disorder. I also have premenstral dysphoric disorder. So it makes sense that all the psych treatment I had didnt help at all as they were trying to treat disorder I didnt even have. My allergist has me now on a very strict low carb diet for mood control. I think the fact I have MCS due to the ME is what causes me to respond so extremely to abnormally high insulin spikes I get (I get well over 3 times normal amounts of insulin when it spikes).

If you hear others talking of psychs bad.. this is probably why.. LOTS of us have had bad experiences due to psychs not understanding ME or our issues and they arent looking enough for reasons, the other medical conditions which go with ME and ruling those out for causing symptoms but instead giving wrong psych diagnoses which they then find they cant help at all (if they arent blaming the person for the symptom) as it is the wrong diagnoses..

We need desperately to get more people on board and not less. All this "harassment" and "scandal" has achieved is to undermine our very importance.

I do agree with that

Yes. It takes time. It is slow. It is bloody frustrating. People want to move at 10,000 miles an hour in a direction they deem is more important, that changes day-by-day but we have to work with the system - AND ENGAGE.

Do u ever wonder why some people are so desperate for change? and as you put it wanting to move at 10,000 miles per hour. Its cause many of us are fed up with being treated badly for so very long.. You sound like you havent been long term sick eg sick less then 7-10 years.. if u were a long term, severe person, I think you'd more understand peoples desperation for things to be changed. Many of us have been sick 15-30 years.. and arent happy with the no progress and the moving at snails pace, we've already lost a HUGE amount of our lives. We'll be dead before things improve if it continues at the rate we've seen.

If u think Im exaggerating in my medical situation (cause u mentioned about people "exaggerating" in one of your posts) and what Ive gone throu with it.. Im VERY WILLING to publically start putting copies of various doctors/psychs letters/reports which were written about me on this thread which proves just what Im saying about psychs and us and how they are harmful to many of us... and u will see just how many I saw and the things that were wrongly said. pm me if u think im exaggerating and want me to do this publically just to prove to you just what Ive been throu (in case i miss seeing your post). Even my excessive thirst due to POTS was put down to possibily being due to a mental health cause (that one in which people have a psychological thirst... that happened due to all the psychs influences on my CFS specialist.. He had never heard of POTS and wouldnt research it)

Even if you or I raise funds for a 'biobank' or independent research institute. What are you going to research? Why? What happens when it fails? You claim to know how science operates - so you know how slow this goes and how the failure rate is high. There is no simple or obvious solution to ME. Hell, we are still unsure as to what ME is - after 50 or more years!

There are LOTS of things which need to be researched with our illness... ME/CFS research has been quite "fragmented" with often studies abnormalities not followed up with bigger ones or the findings not studied again in a way to go deeper into whatever was found.

Sadly I think more was known probably about ME back before the 1980s... it even had its own scientific journal (Im not refering to the old CFS journal but of Australian/New Zealand ME journal before that one)

 

[barbc56]

That reporting system where I are in Australia is letting many patients down. Due to very low dose Amitripyline my IBS-C got far worst and to the point it caused me to have a prolapse within weeks (something Id NEVER had before). The after effect of this was having to have daily enemas (which I'd never had to do before). If one looks on Wikipedia it does say that this drug slows down bowel peristalisis but my doctors wouldnt report it (even thou I had to see a bowel specialist due to what it did to me and hence now are on things I wasnt on before due to it). The Doctors just said maybe it was just a coincidence my IBS-C got a lot worst and blamed my IBS-C for the sudden prolapse issue (it only took 3 weeks for that drug to give me major issues). They wont blame the drug even thou its taken me 4-5 mths after stopping it for my bowel to get its peristalisis back more (and I still have more issues then I did before that drug trial).

The reporting, at least in the United States is for side effects not already known for a medication.

Again, you have missed my point. It's not whether personal anecdotes are true or not, but for each anecdote given you can most likely find another one that says just the opposite. So how do we discern which one is representative of the health care system? We need to have more evidence than that.

That being said there is a time and place for such stories such as venting and support and there are times we all need that.. However that's not what this thread is about.

Barb C.:>)

 

[Snow Leopard]

CBT is simply an adjunct therapy that happens to be for a disease (CFS) where there is no primary treatment yet available.

In my opinion, if SW doesn't want to be misunderstood, all he needs to do is come out and say this. All these asides about Cartesian dualism etc. are beside the point.

 

[barbc56]

Do u ever wonder why some people are so desperate for change? and as you put it wanting to move at 10,000 miles per hour. Its cause many of us are fed up with being treated badly for so very long.. You sound like you havent been long term sick eg sick less then 7-10 years.. if u were a long term, severe person, I think you'd more understand peoples desperation for things to be changed. Many of us have been sick 15-30 years.. and arent happy with the no progress and the moving at snails pace, we've already lost a HUGE amount of our lives. We'll be dead before things improve if it continues at the rate we've seen.

How do you know this? How can you say some patients aren't desperate for change because they might not be suffering as much? That's insulting. You can't tell this from reading someone's post. Just because someone remarks that some of the stories might be exaggerated is not discounting what individual patients have been going through.

As far as myself I am speaking about the forums, blogs and other venues where memes get repeated over and over until it's difficult to sort out what is factual and what isn't.

I'm fed sick and want change, too. I just might have a different perspective about the reality of our situation and where we need to focus advocacy.

Barb C.:>)

 

[barbc56]

CBT is simply an adjunct therapy that happens to be for a disease (CFS) where there is no primary treatment yet available.

In my opinion, if SW doesn't want to be misunderstood, all he needs to do is come out and say this. All these asides about Cartesian dualism etc. are beside the point.

Maybe he is saying this and people are not hearing it because they want to believe that he is this evil person. When I first heard of him, I thought this. Okay so some of the psychiatric community may be saying this in a round about and slightly clumsy way but I think this is what many psychiatrist are saying.

This is the danger when we look at the world as black and white when the reality is that it's somewhere in between. If we think only in terms of us vs. them that leaves no room for "we" and we desperately need a "we" in our patient community for our situation to improve.

 

[taniaaust1]

Maybe he is saying this and people are not hearing it because they want to believe that he is this evil person.

I dont think so. He's made it clear over the years that he thinks the illness is in our heads.

He's even on record saying something along the lines of he enjoys stirring us up (maybe someone can find that quote for you, I forgot now where I saw it). Thank God for the internet and that quotes he's made in the past to media and other places. They wont ever be forgotten or just go and disappear.

 

[taniaaust1]

How do you know this? How can you say some patients aren't desperate for change because they might not be suffering as much? That's insulting. You can't tell this from reading someone's post. Just because someone remarks that some of the stories might be exaggerated is not discounting what individual patients have been going through.

II should of worded my post better but I do think its true that the sicker someone may be, the more "desperate" they may become of a whole range of things. I think the fact that many of us would go and try something like Rituxmab at an instant regardless of it being a dangerous drug shows how desperate many of us are.

Im seeking to understand why those who are wanting things to change fast are being knocked by others for wanting this.. things have been moving forwards if at all, so slowly..so what is wrong with people wanting a fast change?

.. and that was the only possible reason I could come up with that maybe those thinking like that werent so desperate. Have you another reason which would be logical for why they would be against fast change?? Actually I think it may be a combo of reasons why some are more desperate for faster change then others (not just due to the degree of symptoms).

eg I dont know if its just me but its also the long term ones who I often see doing more advocacy this may be cause those newer to the illness just dont for many years understand all the bullshit stuff which goes on around it with governments etc.. how things have been held back, what people such as Wessely have done over the years.

It takes time and years of reading all the politics which have gone on before and reading of original quotes etc before people come to realize just how bad the whole ME/CFS situation is (before that many quite possibly just think they have just bad doctors and blame that for their poor treatment.. but the cause goes way above that.. above your doctor).. and at that point of realisation of the whole ME/CFS situation, many do become desperate, very desperate to get the whole ME/CFS bullshit changed and that point get more involved in advocacy.

Sorry if my other post offended you.

ps I never said people didnt want change (as Im sure anyone who has ME/CFS wants change) but rather that some seem to be more desperate for it and hence trying to push harder for it.

I personally dont think there is any one direction or area in which advocacy needs focusing on but rather it needs focus being put on all areas till things give.

 

[Firestormm]

News report yesterday.

It is connected to the notion that - and whilst this talks about depression - long term conditions are being targeted for treatment from the physical (if known i.e. directly treatable and not just symptom management) and psychological (to help in coping with the condition) perspectives which is reflective I think of my previous post from the liaison psychiatrist about the way in which treatment and care is ideally being provided.

I say 'ideally' because not everyone everywhere even gets the medications necessary to help manage their respective condition and neither do they get the right (or any) psychological support either.

But this is the way - as has been said I think on this thread or elsewhere - that things are going for long term conditions. It is envisaged that if you:

"Have a long term condition? Let us help you learn how to live with it with physical and psychological interventions. Together they might better improve your quality of life."

That's not intended as a flippant statement meme. I just cannot afford to go into it all further this morning. Thanks.

BBC News:
Cognitive behavioural therapy 'can reduce depression'

Continue reading the main story
Dr Nicola Wiles, from the Centre for Mental Health, Addiction and Suicide Research at the University of Bristol, said:

"While the addition of CBT was effective for patients who had not responded to anti-depressants, not everyone who received CBT got better. These patients had severe and chronic depression so it is unlikely that one treatment would be effective for everyone."

"We need to invest in other research to find alternative treatments for patients whose symptoms have not responded to treatment with anti-depressants."


Chris Williams, professor of psychosocial psychiatry at the University of Glasgow, and part of the research team, said:

"The research used a CBT intervention alongside treatment with anti-depressants. It confirms how these approaches - the psychological and physical - can complement each other.

"It was also encouraging because we found the approach worked to good effect across a wide range of people of different ages and living in a variety of settings."


Paul Farmer, chief executive at the mental health charity Mind, said there was no "one size fits all" treatment for people with mental health problems.

"We welcome this research because it recognises that patients should have the right to a wide range of treatment options based on individual needs," he said.

"Initiatives such as the Improving Access to Psychological Therapies (IAPT) programme has helped to ensure that more treatment options are available for conditions such as depression, however, we know that there still is a huge difference between what treatment people want and what they actually get."

 

[In Vitro Infidelium]

CBT is simply an adjunct therapy that happens to be for a disease (CFS) where there is no primary treatment yet available.

In my opinion, if SW doesn't want to be misunderstood, all he needs to do is come out and say this. All these asides about Cartesian dualism etc. are beside the point.

Absolutely - however there is a strong inhibition against this in the form of it not being an effective promotional message. Medical specialisms and their associated medical schools are in a bizarre 'market' environent in their relationship with the NHS. Commissioning arrangements place treatments in competition, which ultiately translates into overall employment of a given specialism, which has consequent impacts upon the popularity of a given medical school department and its associated hospital - and both relatedly and seperately affects the level of research grant traction a given institution has. Wessely ( as every other academic clinician in the UK) moderate the explicitness of their comments on treatmenents relative to the needs of their institution. Clearly this is undesirable, but it's not specific to Wessely or psychiatry.

IVI

 

[Sean]

CBT is simply an adjunct therapy that happens to be for a disease (CFS) where there is no primary treatment yet available.

In my opinion, if SW doesn't want to be misunderstood, all he needs to do is come out and say this. All these asides about Cartesian dualism etc. are beside the point.

So much this.

Wessely could largely kill this debate in a heartbeat with a clear statement about his views.

If they are as benign and scientifically grounded as he claims they are.

 

[Firestormm]

So much this.

Wessely could largely kill this debate in a heartbeat with a clear statement about his views.

If they are as benign and scientifically grounded as he claims they are.

Read this it might help. Probably won't but it might.

Edit: Am trying to catch up on reading. Got an 'alert' logged in and ssaw your post. Happened I was reading that from Wessely.

Hres the concluysion but try and read the whle piece if you can:

CONCLUSION
I remain proud of the work myself and colleagues did in the early days of CFS, and delighted that my colleagues are continuing to research the illness in a broad multi disciplinary way, and refine or develop new treatments.

There is still so much to do, and so much to learn. Speaking for myself, and as I said recently in a journal piece (pdf nature neurosciences 2011), I do not think that CFS will be solved in a “eureka” single moment, but that progress will come, as it does in most of science, from a series of slow incremental steps.

I would hazard a guess that the most fruitful area of research will come from a combination of neurosciences and psychology, and will be focussed around the sense of physical effort and effortful cognition, but we shall see.

As it is, I don’t regret being involved in CFS research, and I think that with all my colleagues we made a very positive contribution to improving patient care. I still see CFS patients to this day, and that keeps me in touch and remains very satisfying.

But there has been a downside I and others have indeed gone public recently documenting some of the intimidation and threats that we have all received over a long period of time from a very small number of activists.

But because I do still stay in contact with sufferers in the clinic, I know for sure that these extremists are a tiny minority, and do not speak for real patients in any shape or form, indeed they do them a major disservice.

Likewise, I do not blame those who repeat some of the things that they have read about me, and can understand why they might get angry or upset. Most people do not have the time or the access to check each and every quotation for accuracy or context.

I feel however differently towards those who originally extracted or altered the quotes, and persist in doing so over the years despite knowing that these are wrong.

So next time you come across something that purports to be an unfavourable or unflattering quote from myself or one of my colleagues, make sure you check it out first with the actual article.

By all means then feel free to disagree – that’s fine. Because in the end science proceeds by debate, discussion and disagreement. What it doesn’t do is proceed by distortion.

 

[alex3619]

So much this.

Wessely could largely kill this debate in a heartbeat with a clear statement about his views.

If they are as benign and scientifically grounded as he claims they are.

He could indeed change how we and the wider audience construe his views, with one proviso. However this can't demonstrate that his views are strongly grounded in science. They are not. In order for that claim to be made, the whole definition of science has to be something that doesn't resemble science as understood by most scientists.

That proviso is this. He has to act like he believes CBT is only an adjunct therapy, and that includes in media reports, recommendations to government (or other institutions and organizations). This would have to be combined with an acknowledgement that subgroups of patients are harmed by GET, and a diligent investigation to identify those subgroups so they will not be subject to GET. This would include identification of bio-markers. Unfortunately, anything bio- seems to be treated as a B word.

To start with, there is confusion between CBT as a coping mechanism, and CBT used to treat supposed belief patterns that hypothetically underlie CFS. This would have to be disambiguated. He would have to acknowledge that the dysfunctional belief model is an unproven hypothesis. I cannot see that happening in the current climate, though I would be pleasantly surprised if it did. In fact disambiguation of many terms used in this debate would have to occur. If necessary this would mean coming up with new terms, just as I use the DBM.

I think it was White who, in at least one claim I have yet to properly substantiate (I will in time if its out there) who said to an American audience that CBT/GET does not lead to many cures, while telling a UK audience that it leads to large numbers of cures. Which is it? Where is the evidence? The FINE and PACE trials do not show it, at least from the published data. For there to be substantive cures (or full remission) in the PACE cohort, for example, then there must necessarily be a decline in many of the cohort in order for the results to wind up so poor. This is also an alternative explanation as to why any full remissions have not been reported on. A few might exist, but they might skew the stats so much that it would be clear that many got worse. We need the raw data.

One dominant hypothesis I keep thinking about is confusion between conditions that resolve normally and those that don't. This includes, but is not limited to, PVFS on one hand and ME on the other. If they include patients whose fatigue will resolve normally, how is that a cure? Proponents of quack cures use this method to promote themselves. Treat 1000 patients. 20 get better naturally. Claim they were cured. Then anecdotally promote those "cured" patients. They are not lying that these patients are better. Its more subtle than that. If proponents of the DBM want to be taken seriously, they have to be better than these quacks.

In 2000 a locum who was treating SWs patients, irrc, published a letter to the editor in the BMJ. He had immediately rediagnosed half of SWs patients. Ircc this included asthma, heart conditions etc. If I can make it back to a medical library some time I will copy it and quote it directly. If SW cannot get the diagnosis right, how can we deduce that the conclusion that these treatments can lead to cure has any validity? We need published data from very well characterized patients, not the vague patient cohorts under the Oxford definition.

Then there is the issue of biomarkers, which I plan to blog about next year or maybe later. There are very real physical problems in those with ME or IBS or GWI. These must, unless you invoke magic, have biochemical mediators. If the claim that the mind is causing this is to have any credibility, they have to show that these physical abnormalities can be derived from the brain. They cannot show however, ever, that they come from the mind. What they might be able to do though is show that alterations in thought patterns might induce these biochemical mediators. That at least would give them possible mechanisms. They could then try to show that CBT to alter beliefs leads to changes in these biochemical mediators. Where is the research along these lines?

 

[Bob]

By all means then feel free to disagree – that’s fine. Because in the end science proceeds by debate, discussion and disagreement. What it doesn’t do is proceed by distortion.

How ironic.

 

[Bob]

SW is free to say that CFS/ME needs extensive biomedical research funding.

He is free to say that 'chronic fatigue' is not the same as CFS or ME.

He is free to stop claiming that CFS/ME is a psychiatric illness.

He is free to say that the cognitive-behavioural approach is not helpful, except in a very small way for a very small minority of mildly to moderately 'fatigued' patients.

He is free to encourage the use of more selective diagnostic criteria in research.

He is free to encourage the development and use of more selective diagnostic criteria to use alongside NICE and Fukuda, in the NHS, to help with long-term epidemiological research.

He is free to announce the actual results of the PACE Trial.

He is free to stop portraying CFS patients as a bunch of extremists who have personality disorders.

He is free to stop portraying CFS patients as people who consider psychiatric patients to be less worthy than other patients.

He is free to try to understand the actual nature of CFS/ME, and to understand why patients physically react negatively to exertion.

He is free to acknowledge the nature of delayed post-exertional-malaise, and to acknowledge that GET may be totally inappropriate for many patients, because of their physical reactivity to energy expenditure.

He is free to stop portraying CFS as a condition that is perpetuated purely be a fear of exercise, and subsequent deconditioning.

He is free to stop portraying the cognitive-behavioural approach, to treatment, as being highly successful.

He is free to campaign to stop CFS/ME being treated as an extension of normal fatigue and a simple fatiguing illness.

He is free to acknowledge that PACE and FINE Trials have provided "definitive" evidence to disprove his hypothetical model of illness for CFS.

 

[Firestormm]

Bob. Can you back up what you have said above with direct evidence or are you making a generalised assumption? Isn't this exactly the kind of thing that will get the 'popular' vote but fails 'us' when put to the test?

Yes. Wessely is e.g. free to say ME needs extensive biomedical research funding - but have you asked him? I am betting he would agree but probably ask you 'in which direction?'

And the bit about extremists - well did he not cover that in the extract I took from his blog to which you were responding:

"...I know for sure that these extremists are a tiny minority, and do not speak for real patients in any shape or form, indeed they do them a major disservice." ?

I mean I suppose you could argue that his most recent blog about 'misconceptions' was inherently wrong, and that the extract I took from his 10 year overview, was biased, or blinkered, or even 'hid a multitude of sins' or that perhaps he is as 'slippery as an eel' when it comes to addressing Lady Mar's actual questions (although maybe he will get around to that I don't really know).

It's opinion though right? I'm guessing here, totally, but you don't trust him? I think that in general many would say they didn't. But is this based on specific evidence or on generalised perception? And just how recent is any evidence that we see being used? Perhaps none of this really matters.

There was a time when all I had in my head were arguments surrounding the whole - "am I making this up or am I really ill?" routine. It wasn't caused by anything Wessely had said and that I had read - it was caused by all the comments made about what he supposedly said and believed flying around the internet.

It drew - as these things inevitably do - a clear embarkation line. Straight down the middle: Psychiatry vs. 'real' science that sought only to find the truth. Buggar if I know what the hell is going on. It's all now so damn confusing.

I still say I would like to get him and others known faces (from either 'side') into a room and do the Question Time routine. Get all this out in the open once and for all. Overly ambitious perhaps - to expect one meeting over a couple of hours could satisfy everyone - but it might help. And it's not as far-fetched as it sounds either - it could and perhaps is going to happen.

You know there is a search for actual examples occurring on Bad Science at the moment. Seeing as how that forum is getting rather a lot of attention at the moment. I believe something - according to my alerts - has now been produced by way of an example after a rather lot of delay tactics and obfuscation... I shall go and take a peek.

 

[user9876]

CBT is simply an adjunct therapy that happens to be for a disease (CFS) where there is no primary treatment yet available.

In my opinion, if SW doesn't want to be misunderstood, all he needs to do is come out and say this. All these asides about Cartesian dualism etc. are beside the point.

I think he does want to be misunderstood in that he puts out confused and contradictary messages in his papers.

 

[Bob]

Firestormm, You make a fair point that I should provide evidence if I'm going to attribute opinions to him.
And maybe it would be helpful to gather the evidence, in order to clarify his position, and in order to make a strong argument against his position.
But unless I'm going to write a scientific paper, it seems like a waste of time, as no one in authority would read it.

But, every single one of the points that I made is based on direct observation of what SW has either said, or what he has glaringly omitted to say, or on research that he has wholeheartedly supported, such as the PACE Trial. I did not base my points on other people's quotes.

Admittedly, I don't closely follow everything that he writes or says, so it's possible that I could have made the odd mistake, but I wrote my list carefully, and I think I've seen enough of his work to understand the angle that he's coming from, including reading a substantial 2005 'review' paper on CFS that he co-wrote, in which he appears to describe CFS as simply being an extension of 'normal' fatigue. Such a description seems to be central to his misundertandings re CFS.

His model of illness, in the 2005 paper, seems to be that CFS can be triggered by a biomedical mechanism (i.e. viral trigger), but then is 'perpetuated' by fear and deconditioning. (i.e. the virus is got rid of by the body, but the 'fatigue' stays purely as a result of fear and deconditioning.)

I could go through my points and attempt to back them all up with evidence, but it would be too much work.
I don't go out of my way to follow Wessely's work, as it would be a waste of time, but I do come across it often.
The 2005 review paper is one of the few substantial papers, of Wessely's, that I've studied closely, but it outlines his (often seemingly contradictory, and sometimes startling) views on CFS, which don't seem to have changed substantially, based on anything I've read recently.

He may have paid some lip-service to there being subsets of CFS (I think he has, but I'm not certain), but in practise, he has portrayed CFS/ME patients, as a whole, as having a cognitive-behavioural disorder.

In terms of the following quote:

"...I know for sure that these extremists are a tiny minority, and do not speak for real patients in any shape or form, indeed they do them a major disservice." ?

It's a bit late, after he has run a successful national media campaign, portraying CFS patients as a bunch of unbalanced and unruly militants, who have a psychiatric illness, to later back-track with more nuanced comments.

But in any case, the above quote, if it's read in its full context (not provided in your extract - he's written the same stuff elsewhere), is an attempt to make out that the majority of CFS patients don't have a problem with his work, and that the opinions of the 'extremists', re CFS, are outlandish, marginal and not representative of the majority of CFS patients. (i.e. the 'extremists' do a 'disservice' to the majority of 'ordinary' CFS patients, who he says don't have a problem with his work.)

Whereas, I imagine if we asked all CFS patients if they thought their illness was perpetuated by 'fear of activity', then the vast majority might have something to say about that. All the patients, that I have ever spoken to, have reduced their activity levels in reaction to disabling exhaustion, and in order to protect their health, and in order to try to stabilise or improve their symptoms, and in order to try to avoid a massive relapse (a negative physical reaction to exertion). So they've reduced their activity as a practical response to disabling symptoms. Whereas Wessely's belief is that this reduction in activity is the cause of ('perpetuates') ongoing CFS symptoms, rather than a protective mechanism. (Does he not ever listen to patients?)

Wessely's model of illness was substantially proved false by the PACE Trial.
The PACE Trial, in itself, can't prove that the biomedical model is correct, because it wasn't biomedical research, but it certainly does give far more credibility to the biomedical model, than to the cognitive-behavioural model.


All of Simon Wessely's quotes need to read carefully, and in their full context. He often seems purposely vague, slippery, and contradictory, so his work needs to be understood in the whole, in order to understand his position.

 

[taniaaust1]

But, every single one of the points that I made is based on direct observation of what SW has either said, or what he has glaringly omitted to say, or on research that he has wholeheartedly supported, such as the PACE Trial. I did not base my points on other people's quotes.

I'd like to say that that same thing stands for the comments Ive expressed. I havent at all based my opinion on others in these communities quotes but have read many of his papers over time and he's also done quite a lot of general media interviews over the years which also quote him (which Im sure he would of made them correct if they did an interview with him and then put in false quotes saying he said).

I think most of us who dont like him at all have read stuff of his and arent just going by what others have said. He's very sly.. one needs to closely read what he says as he will often be contradicting himself all over the place while trying to get whatever he wants to get across.
..............

One thing which is often quoted by people and which may be wrong.. I'll call it a possible urban ledgend.. is that Wessely if Im remembering right.. wasnt the one who threw the young boy in the pool as often quoted by people .. but another doctor did under Wessely instructions over time, the story evolved to say that Wessely himself did the throwing . (now that info I did not get from the general public media or from Wessely himself. The boy who was involved in this incident his story posted or is on utube or something.. IT IS TRUE a young boy got thrown in the pool by a doctor who believed the ME was in his head, to try to make him swim.. and if Im remembering correctly that dr was under Wessely instuction to do so).

Anyway.. this is how one ME/CFS story has warped slightly but most of what one hears (there are many incredible hardly believable ME/CFS happenstances over the years!!).. one will find it is true if one researchers deep into it.

One thing I have noticed thou.. is that someone (Wessely himself???) appears to be trying to cover up some of what Wessely has been in the past involved with to do with ME/CFS . eg A while ago when I was going throu stuff which had been published in medical journals.. Wessely's name keep coming up in many different articles in their (more then 3 different scientific groups) reference list for a certain thing which was published and in which he was clearly stated as being one of the authors.... When I searched for then this thing.. I then found out his name has been removed from it (with just the other authors now showing). I then tried to get the original article up to double check this weirdness of his name being taken off of the article he did with others.. but unfortunately the journal hasnt got the original article online anywhere (it hasnt got its backdated copies online for several years.. and unfortunately its during that time Wessely was publishing in it and sprouting off a lot of stuff). So the only 100% proof his name has been removed from this article he was one of the authors in, would be to find this old article in its published journal form. (I wish I remembered now what article it was.. I did at the time post on PR about what I'd found and put the links which showed something weird was going on).

So it doesnt now look like he was involved in it .. making it look like others were just supporting his views instead of it being written by himself too (It could of been some kind of published ME/CFS guideline?? which he'd published or something like that.. I cant now remember). Thing is his name is removed from what he's past done but as so many other researchers quoted it to back up their own study stuff and referenced it and him as having written it.. for one who comes across it, one can see he was involved in it. Damage control tactic? Fear of future law suit? as if that original article was online with his name to it.. we'd be quoting it and having a field day on it.

When my boyfriend gets back from overseas next week.. I'll see if he's still got the old email I sent to him at the time I found this out as then I can point out what Im refering to exactly and provide the links to the published article so people can see this strangeness for themselves of his name vanishing and what appears to be a coverup. (email me someone if I forget)

 

[Whit]

I haven't read this whole thread. But it is clear to me that SW is a politician, and adept at the art of swaying public opinion. There will very soon be evidence and a diagnostic test that will disprove his theories, but I'm afraid he will only adjust his theories and play the victim, or whatever the right card is to stay credible to the public. It's likely he will be around for good and I doubt he will ever be shamed publicly even if he deserves to be for all the harm he has caused to so many ill and disabled people.

But he wont' be able to do much harm anymore very soon, once more medical evidence emerges. There is more research into CFS now than there ever has been. SW will soon become irrelevant. Once we have the medical breakthrough that provides real, solid proof of an illness we will have people much more important and well regarded than SW on board doing research and no one will care or listen to him anymore.

 

[alex3619]

I don't see anything wrong, or potentially wrong, in what Bob said in his free to say speech. I am free to say I am a giant prehistoric platypus .... would anyone dispute that? I don't actually have to say it, and it doesn't have to be true. Any DBM proponent is free to say any of the things that Bob listed, they just typically choose not to.

My recollection of the Proctor/Wessely pool affair is different. Again, at risk of being wrong because I couldn't be bothered to do a whole lot of research on this at this point, I don't think Simon was responsible at all. He did however have some part in the authorization process of Ean being sectioned though I do not recall details. He also may have had some idea of what kind of treatment that Ean could have expected. Beyond that I do not think he is culpable in any way .... except of course that he as well as many many others support and promote unproven ideas based around psychosomatic illness.

Its far better, safer, and more productive to focus on how his ideas and hypotheses are wrong, than to concern ourselves with personal conduct. Its simply too hard to prove major misconduct unless someone steps up and gives evidence at an enquiry or similar.

"...I know for sure that these extremists are a tiny minority, and do not speak for real patients in any shape or form, indeed they do them a major disservice."

This is probably at least partially correct, and also irrelevant and misleading. Are ME advocates few in number? Of course. Are the numbers of us who might legitimately be called extremists in a tiny minority? A very tiny minority if you ask me ... maybe all the way down to zero. Do we speak for real patients ... given that Simon's "real" patients probably have a high misdiagnosis rate? That most will not have ME, if not all? That most will have CF is not in doubt, but thats a very problematic diagnosis. Only some will have even Oxford CFS.

We speak because we perceive that things are wrong. Its not necessary that we speak "for" "real" patients. We speak for ourselves, and for others who we hear of and talk with that are harmed. That is enough justification. We speak also because its so very easy to see how there is unfairness in the whole system. Simon is not to blame for all that, but he is part of the system that is responsible. So are other psychiatrists. So, by extension, are other doctors, because they do nothing about this. Its a system that is failing, not an individual, though individuals do have their part to play.

Do we do the cited patients a disservice? How? By insisting on accountability in medicine? By insisting on scientific rigour in psychiatry? By enquiring when analysis clearly shows that something is wrong? By objecting to unfair treatment? By objecting to misdiagnosis with unproven hypothetical diseases which have no objective biomarker? By objecting to treatments which produce no published objective improvements in functional capacity? How dare we want to have our functional capacity improved! How dare we want an objective diagnosis! How dare we complain about subjective unprovable diagnoses! How dare we object to treatments that cannot cure us and might make us worse!

I think a very different statement is in order. I would put it this way:

I know for sure that the number of people able to fight for rational and compassionate treatment of ME and CFS patients are few in number. Most patients are far too sick, and far too isolated, and struggling to just survive. Those who speak out do so from their own experience and the experience of others, and do a major service in highlighting unscientific, irrational and unfair practices in the medical profession. If patients who have a vested interest, stakeholders in the outcome, cannot have a say, any say, what does that say about those in the medical profession who refuse to allow patients any say in their own treatment? What does it say about the scientific process when rational objections to errors, hyperbole and exaggerations in publications are ignored? What does it say about the medical profession when they allow these problems to continue?

Its not us giving the medical profession a bad name. They should look closer to home. We are just the messengers. They write the message.

Do patients make mistakes in doing all this? Of course. So do doctors. To err is human ... but to do nothing is something else, and I do not mean Divine.

Bye, Alex