Lady Mar writes to Prof Wessely

[Esther12]

Perhaps it would be productive to compare what has been said of any model thought to have been relevant to our condition in general - with what the changing view might be? Digging up past papers and past quotes is all well and good (with context of course); but how about comparison's? And let's not beat about the bush here, there have been many (more) papers published hypothesising a 'physical' cause or physical perpetuating factor(s) in ME - i.e. physical models - and yet they gain very little practical headway or general acceptance from any health authority.

I think your standards are way too low. Anyone who lumps CFS patients together and treats them according to some physical model is a quack imo. I've not seen any good evidence which could be used to justify such an approach. That does nothing to legitimise those who lump CFS patients together and treat them according to some psychological model.

Like any decent doctor, I will change my views and hence advice when the evidence changes - for example when a different treatment approach proves to be as safe but more effective than either CBT or GET , and indeed would be delighted to so.

The evidence has not changed, and Wessely's only example was about the emergence of new treatments, rather than evidence related to his work. It is not that there used to be good evidence that supported Wessely's theories or his belief that it was morally acceptable to encourage the cognition that CFS patients had control over their symptoms or recovery, and now this evidence has somehow changed. Good doctors restrict themselves to being open and honest with and about patients, and only making claims which are supported by the evidence. Wessely is a bad doctor.

Also - while it would have been quackery to treat patients as if their health problems were a result of XMRV without making it clear to them that this was a highly experimental approach and getting informed consent for this, the difficulty of falsifying psychological theories and models does mean that quackery in this area is even more dangerous.

Encouraging patients to believe that they have control over their symptoms and that they are reversible, when there is no good evidence that this is the case, is repulsive and abusive quackery. I never consented to being 'managed' in such a way, and made a number of really important life decisions based upon the assumption that my doctors were trying to provide me with accurate information, rather than psychosocially manipulate me (and I wasted a huge amount of time devoting myself to GET following bullshit 'positive' claims about efficacy). Still, patients and doctors are being manipulated by the disgusting way in which the results from PACE were spun. This is clear cut quackery. Anyone working in the area of providing the psychosocial management of CFS who had any respect for patients would be speaking out about it.

I think that it is vital to keep pushing on the past problems which have surrounded CFS, and which people like Wessely have profited from. Without some acknowledgement of how seriously things went astray, we will not be able to move forward effectively.

Complicated topic, and I only had time for a v quick post. A bit irritated I've not been able to keep up with the Wessely fun of the past couple of weeks.

 

[Bob]

All this wealth of 'physical' data that keeps being published (certainly now on an almost weekly basis), has done very little in terms of gaining a consensus that might better influence clinical treatments. Even if you compare Ampligen to PACE (even applying the patient-preferred results) - this is the height at which the bar has been set.

There isn't a single consensus. But I think there is some consensus to be found, as to the nature of CFS/ME, within the biomedical research community. I think many, or most, would agree that the immune system is involved.
I think we have some distance to go before a full consensus because the current evidence is clearly not robust enough, and there maybe subsets of CFS/ME.

In 15 years I have tried (trialled) many, many drugs aimed primarily at symptom relief. Sometimes going through so many of the same type of drug before I either decided not to bother or found a version that seemed to help. Drugs are not perfect. Why then do you expect CBT or GET or Activity Management to be perfect either? I suggest that we apply our own experiences to clinical management treatments and can be accused fairly of confirmation bias.

I think you are missing the point, Firestormm. GET has proved to be clinically worthless at improving disability.
But the mis-promotion of GET has led many clinicians to believe that CFS patients should just get off their backsides and exercise. This isn't helpful for patients.
Remember the newspaper headlines after the PACE Trial press conference? e.g. "CFS patients should exercise in order to recover" (I paraphrase, but they were very similar to this.)
The mis-promotion of GET distorts medical treatment, clinical care, overall insight into CFS/ME.

If GET were promoted honestly, then I wouldn't have a problem with it.

 

[Bob]

Perhaps it would be productive to compare what has been said of any model thought to have been relevant to our condition in general - with what the changing view might be? Digging up past papers and past quotes is all well and good (with context of course); but how about comparison's? And let's not beat about the bush here, there have been many (more) papers published hypothesising a 'physical' cause or physical perpetuating factor(s) in ME - i.e. physical models - and yet they gain very little practical headway or general acceptance from any health authority.

There isn't a single biomedical model.
It's an evolving and growing field, with no absolute consensus.
However, I think that most biomedical researchers would agree that the immune system is involved.

One of the problems, of course, is that there are probably subsets of CFS/ME, and no widely adopted way to differentiate subsets. The CDC failed to find ways to differentiate subsets over the past decades. Some researchers have recently started to use various methods to try to differentiate subsets.

The absence of a single biomedical model, is partly (or possibly mainly) why the psychiatric model has found a foothold. The psychiatric model does not usually acknowledge subsets in its approach to defining CFS, although as the PACE Trial demonstrated, their model doesn't really help any CFS patients, when looking at objectively measured disability.

There have been extensive forum discussions about historic biomedical models.
We've had long discussions about the past descriptions of ME.
The historic descriptions have evolved and changed over time, and are still evolving.

 

[SilverbladeTE]

Bob

Why create a perverse theory that CFS patients are not able to work because they receive benefits?
It seems more like a political stance than a serious medical approach to treatment.

Considering some of Wessley's own family were murdered by a regime with *exactly that kind of sick ideaology*....
sigh. And it is back, as folk in the UK are slowly waking up to see (and it's sweeping over parts of the Continent, see Greece especially)
Wessely is obviously "grandstanding" he wants to be a "doyen", his entire attitude seems to be that of an egotist, not a healer.

 

[Valentijn]

. . . the individuals and bureaucracies whose attention we must ‘win’, are not going to be engaged by us following a tactic of fighting on ground where the ‘enemy’ was 20 years ago.

Excellent point. But not to worry, I'm making good progress in getting to the more recent stuff. The old stuff is mostly for context and completeness, and starting at the beginning seemed as good a place as any.

 

[Firestormm]

As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive, or unchanging. Benefits can often make patients worse.

I took that comment (didn't read the context) to relate to ME, Bob. This was a shrink talking about the psychological effect that could happen if someone was to say 'your condition is permanent' given the current and previous knowledge of ME. If you told someone who received an award e.g. DLA when bedbound that they would not ever recover - then as we don't know the aetiology of ME or it's nature - it might be seen as making 'patients worse'. See?

This isn't about denying patients benefits because they have ME or any other condition come to that which is not terminal. It is a shrink's view that expressing 'permanence' can be negative in terms of a person's 'hope' for some form of recovery.

Being on benefits is guilt enough the way this bloody world is working these days. The above is reflective of those opinions also expressed in regard to disability aids in my view. Uncomfortable reading for sure but I don't think they/he is advocating people who need wheelchairs should not have them provided! Or that people in need of benefits should be denied them - and certainly not because they share the same damn diagnosis as me!

 

[Roy S]

Pretzel logic and amateur psychotherapy
give me a headache.
Ebenezer Scrooge

 

[Firestormm]

Pretzel logic and amateur psychotherapy
give me a headache.
Ebenezer Scrooge

I have said many many times that this sort of thing will mess with your head

It shouldn't though prevent us from trying to understand the 'other side of the argument' rather than merely dismissing it. How then are we to address these views more pro-actively when we encounter them either in our engagement with clinicians or scientists at a personal level or when doing so on behalf of others?

For sure, the flip side of the debate is easier. If I say I need a wheelchair one can argue for the positive benefits it might bring - it enables me to be more mobile (not that I'd be able to power the damn thing on my own for long) and get out more. But will I be less inclined to try and walk under my own steam? Will I 'give up'?

We are I think talking in the abstract about ME and not about individuals here and until such time as the science is able to provide evidence that e.g. muscle wastage is a result of ME - then there is no evidence that ME means a wheelchair or that ME is permanent let alone progressive.

On another thread Dolphin posted a narrative from one of White's presentations from 2008 I think it was. In that White referred to 'some scientists' (Dolphin provided a link to the video that I haven't watched); who are alleged to have said in 1978 that ME was 'incurable'.

Now against that background - a claim that ME was incurable when there has been no model advanced since that this is the case or that the extent of the disease means a e.g. wheelchair is necessary at some point i.e. progressive: perhaps you can see where these views are coming from. Or at the very least consider their position.

These people - the prominent shrinks - are not daft. They are not unintelligent. They are not bigoted against ME. NICE provides a balance between the two 'sides' in many respects. It acknowledges (from memory) that some will recover and that some will be more affected and for longer.

Trying (and probably failing) to better understand these oft-dismissed-out-of-hand views is not wrong in my view. It is essential. People with any other condition will see psychiatrists. Psychiatrists and Psychologists will be involved in the research. If you think their views need changing then only by engaging with them after having tried to understand their views - will change occur.

The predominant view in healthcare now is that for long-term conditions 'exercise' is the best way to achieve either improvement or to maintain some level of health. That psychology - thinking about how we deal with our disability and what thoughts/behaviours might be holding us back in some way - has a very definite part to play.

'Exercise' is not for everyone - it is not mandatory. Even the treatments laid out by NICE are at the patient's discretion - as NICE is at pains to point out. You are not going to stop people expressing views that you don't agree with personally or that you think are unfair - but maybe by engaging with them and trying to better understand their views we can be better prepared to argue our case.

 

[Valentijn]

I took that comment (didn't read the context) to relate to ME, Bob. This was a shrink talking about the psychological effect that could happen if someone was to say 'your condition is permanent' given the current and previous knowledge of ME. If you told someone who received an award e.g. DLA when bedbound that they would not ever recover - then as we don't know the aetiology of ME or it's nature - it might be seen as making 'patients worse'. See?

Only if you buy into the psychosomatic theories of ME (yes, he was talking ME in that quote).

I've noticed Wessely referring to some amazing statistics of psychiatric disease in ME patients - basically that about 75% of us have psychiatric disorder in every study he's involved in up through 1996 so far.

So I looked at the questionnaires - the same symptoms that are common in ME are heavily featured, especially on the somatic scales. Headaches? Feeling sick? Run down? Hot or cold spells? Trouble sleeping? Feeling less capable? Not doing things as well? Can't read books now? Guess what ... you have psychiatric disease! Or, just maybe, comparing patients with pretty much any physical illness to healthy controls via somatic questionnaires is always going to reach a conclusion of increased psychiatric disorder.

This probably accounts for the differences in psychiatric prevalence in ME patients found in some Wessely studies (75%) versus other studies (normal compared to a chronic illness of known biological origins).

So, while I suppose it is possible that we have mental illness based solely on our physical symptoms and lack of known biological cause, thus far it is not a strongly or intelligently supported position.

 

[SilverbladeTE]

"Oh if we can't find a simple physical anwer it has to be psychological!"

BULLSHIT!
That is ridiculous beyond belief. We have tons of studies showing physical abnormalities, ergo it is physical, WTF do folk think M.E. is: Professor X making millions of folk think they are ill by telepathy?!

"BY THE POWER OF CEREBRO, YOU WILL ALL FANCY ME ROTTEN, THOSE WHO DON'T WILL GET M.E. !"

We still don't understand a heck of a lot of stuff in physics, hence things like the Large Hadron Collider
Why the HELL do folk think it's any different with biology (medicine), hm?
problem is these psychs are grossly ignorant, HAPPILY to be so idiots.

We have discovered the workings/causes of many the *simple, gross* ailments over last 150 years.
now we're starting to work out the more complex ones, like M.E., M.S., diabetes etc that simply could NOT be understod without MRI scanners, genomic sequencing etc etc

yes, diabetes, like, why does the body turn on the islets of Langerhans? Docs were blinded by the simple function and treatment (injection) and didn't get interested in the complete lack of understanding of initial cause.
Insulin shots are a blind alley, as diabetes rates soar, true cause of diabetes is needed to be understood and treated, not the symptoms (obviously insulin research/treatment is vital to keep folk alive, but very odd attitude amongst medicla profession that well, that was all they needed ot know and do, insulaina nd similar treatments, rather than work on deeper cure/treatment for whatever the heck autoimmune trigger was the true cause).

Our bodies are the result of about 4 billion years of evolution. Every damn day, more understanding is made, the complexities of biology are at least on par if not greatly more so than complex Physics. (I'd suggset Biology is more complex to a Brobdignagian degree, but that's esoterica)


Diagosis by exclusion, with no clear hard test, many folk who have M.E., won't have M.E., they'll have something else as has been repeatedly shown. So I'd bet on 25% to 30% of us having "something other than infection or immune triggered ME"
And fair number will have M.E. and something else on top of each other, grossly complicating the issue (M.E. and say, thyroid issues,sleep apnea etc)

this provides ripe fertile ground for FLIM FLAM ARTISTS!
same crap as has gone on for centuries, where there's doubt, social anxiety, ignorance, abuse etc, scuzzballs and egotists will coem in, slap their "brand" on it and try to rule the roost.
parallels with M.S and syphillis are good ones.

M.E. like *many illnessess* reacts badly to stress (at least as far as patient's distress levels are concenrned), it is not CAUSED by psychology.
all this shows a common problem with our cultures, that the "professional classes" are so divorced from practical realities and hard logic that their heads are so far up their arses they are stoned on their own farts!

this is off the M.E. topic completely, but espouses on how such parts of cultures can completely lose the plot
http://www.bbc.co.uk/news/magazine-20756888

 

[barbc56]

Why is it that we hold Wessely accountable for his statements made at least a decade and a half ago, yet, many patients until lately, believed that XMRV was responsible for our illnesses? Should they be held accountable for having a false belief in something that was never proven as a cause of our illness. Think about it. Anyone's views can change throughout life for many different reasons. It comes down to a double standard.

As far as Lady Mar, I thought Wessely was very generous even answering her letter. It seems like people are expecting him to state his complete philosophy/perspective in one letter to one person.

In some cases past behavior is relevant, if used in an historical sense. I don't like that his behavior either. But we need to move beyond that instead of looking for any way to blame him for something we can't change now. We can't ignore the past but we also have to be realistic about what happened.

Do I particularly like what Wessely says? No. Do I think he is a bit two faced? Yes. Do I think he has done damage to our community. Yes, yes, yes, but we also need to ask ourselves how much of that "damage" was done by default because of the times and how much was malicious?

He did state he doesn't believe me/cfs, is a somatic illness. As someone said upthread, that's a start. Change comes in small increments.

I hate to use a dictionary definition when writing but found this one makes a good point:

Default- a selection made usually automatically or without active consideration due to lack of a viable alternative.

http://www.merriam-webster.com/dictionary/default

At that time there weren't any other diagnosis for a disease not understood.

Yes we have valid complaints. Look how the system works. People are being turned down when they deserve disability. In the states 90% of all applicants for SSDI, Social Security Disability Insurance, are turned down. Ninety percent!! Automatically, pretty much regardless of the condition. That's inexcusable. If people are being turned down for disability because they have me/cfs, that's also inexcusable. But how much does this have to do specifically with me/cfs? I can't speak for the British system or systems from other countries but in the US it's not specific to me/cfs but a pragmatic yet inhumane policy by the government to save money. Unfortunately, most governments often use pragmatic decisions to justify their actions.

Just my two cents worth. I think I need to move beyond this thread.

Barb C.:>)

 

[Valentijn]

He did state he doesn't believe me/cfs, is a somatic illness.

That is not what he said.

 

[barbc56]

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

#185
http://forums.phoenixrising.me/inde...tes-to-prof-wessely.20750/page-10#post-319645

 

[alex3619]

somatoform == psychiatric

http://medical-dictionary.thefreedictionary.com/somatoform disorder
"Any of a group of disorders characterized by physical symptoms representing specific disorders for which there is no organic basis or known physiological cause, but for which there is presumed to be a psychological basis."

This definition contains a logical fallacy. Technically, by this definition, there are not only no somatoform disorders, but most of the claimed psychosomatic illnesses are clearly not somatoform disorders. See, I don't think CFS is a somatoform disorder either! Nor ME.

However, saying what ME or CFS isn't can easily be slight of hand. I do not believe anyone posting on these forums is really a frog. So what? The real question is what he thinks the classification should be.

Simon W. does believe in psychosomatic illness including hysteria, or he used to. He has yet to provide even one iota of evidence that can be undeniably attributed to any psychosomatic illness. It all relies on the psychogenic fallacy. Could psychosomatic illnesses exist? Yes. Is there evidence that older interpretations of thoughts and emotions affecting illness have validity - again yes. Is there any objective evidence these cause illness? Not to my knowledge, and I have been looking for a long time. It relies on a rhetorical argument that is a fallacy.

Just to be clear, there is no objective evidence these perpetuate illness either.

I am yet to be convinced that any psychosomatic illness as we currently understand the term even exists. They exist by definition only: they say so, so there! As I said in one of my earlier blogs, I would prefer to believe in the Easter Bunny. There is far more evidence of Mr. Bunny.

I wonder what Simon thinks of the likelihood that one of the oldest hypotheses about ME, that its caused by enteroviruses, is about to be resurrected? It turns out, if the science can be verified and robustly tested, that rejecting enteroviruses was based on a now demonstrably incomplete model of the virus lifecycle. The enterovirus hypothesis is back, and with it the herpes virus hypothesis. These can be combined - they are both relying on poorly- or non-replicating viruses.

 

[Valentijn]

#185
http://forums.phoenixrising.me/inde...tes-to-prof-wessely.20750/page-10#post-319645

He's talking about the classification and using a very specific terminology to refer to it.

But if there is any accuracy to your interpretation of what he's saying, it's because he thinks physical symptoms should be excluded from CFS entirely (and presumably relegated to somatoform diagnoses). But as far as what he thinks CFS is now, of the sort that includes patients with physical symptoms? Psychosomatic.

 

[Roy S]

Roy S said:
Pretzel logic and amateur psychotherapy
give me a headache.
Ebenezer Scrooge

I have said many many times that this sort of thing will mess with your head

Thank you for for that confirmation. Since it is Christmas I will try to be especially charitable.

In my opinion amateur psychotherapy is potentially harmful. It can be especially harmful with patients with severe neurological ME/CFS due to what I believe is probable brain inflammation in the areas of the brain that are very delicate and affected by psychotherapeutic techniques. Just because someone has been treated with those techniques doesn't make one competent to practice them.

A surprisingly high number of patients are apparently adversely affected even when it's done by professionals (CBT). I hope the Countess of Mar will [clears throat] ...'explore' that subject in future public correspondence with Wessely.
　
I wrote about my background in this thread: http://forums.phoenixrising.me/index.php?threads/congressional-oversight-hearing-asap.474/
　
　
　
　
　

 

[Valentijn]

CFS is not classified as a somatoform disorder. Nor do I believe it should be. In addition, like many of my colleagues in liaison psychiatry, I think that the classification of somatoform disorders is unsatisfactory.

. . . many patients will be best described as having undifferentiated somatoform disorder . . . .
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Not be confused with somatization disorder. You have to be younger to get that one.

 

[user9876]

Why is it that we hold Wessely accountable for his statements made at least a decade and a half ago, yet, many patients until lately, believed that XMRV was responsible for our illnesses? Should they be held accountable for having a false belief in something that was never proven as a cause of our illness. Think about it. Anyone's views can change throughout life for many different reasons. It comes down to a double standard

Wessely is a senior scientist (payed by the UK state) and one who makes many public pronouncements as such he should be held accountable for them. Unlike patients he speaks from a position of responsibility and he should act as such following a good methodology, assessing evidence and being clear about implications and saying where there is uncertainty about the evidence. Academics expect freedom but with that comes a responsibility and they should be held to account.

As far as Lady Mar, I thought Wessely was very generous even answering her letter. It seems like people are expecting him to state his complete philosophy/perspective in one letter to one person.

He shouldn't need to state his opinions since they should be clear in his academic work. Part of the scientific process is about stating clear theories with well formed definitions. Look at the debate that has been on this thread about what he means - to me the lack of clarity and formality behind his work makes him a bad scientist. Personally if I was reviewing his papers I would insist on clear definitions and a clear chain of reasoning before allowing them to be published. This would remove the call for him to clarify his views.

In some cases past behavior is relevant, if used in an historical sense. I don't like that his behavior either. But we need to move beyond that instead of looking for any way to blame him for something we can't change now. We can't ignore the past but we also have to be realistic about what happened.

Scientists get things wrong but as they experiment and evidence accumulate theories and models evolve. However, there needs to be a method that allows that to happen. In a historical sence we should look at how scientists have progressed ideas and make judgements on how they will progress them in the future.

Personally I find the way the PACE trial has been run and results kept hidden very worrying. It was a complete work of incompetance yet Wessely is still praising it as a well run trial. We need proper scientists with good scientific method looking at ME - nothing else should be acceptable.

 

[heapsreal]

Wessely is a senior scientist (payed by the UK state) and one who makes many public pronouncements as such he should be held accountable for them. Unlike patients he speaks from a position of responsibility and he should act as such following a good methodology, assessing evidence and being clear about implications and saying where there is uncertainty about the evidence. Academics expect freedom but with that comes a responsibility and they should be held to account.

He shouldn't need to state his opinions since they should be clear in his academic work. Part of the scientific process is about stating clear theories with well formed definitions. Look at the debate that has been on this thread about what he means - to me the lack of clarity and formality behind his work makes him a bad scientist. Personally if I was reviewing his papers I would insist on clear definitions and a clear chain of reasoning before allowing them to be published. This would remove the call for him to clarify his views.



Scientists get things wrong but as they experiment and evidence accumulate theories and models evolve. However, there needs to be a method that allows that to happen. In a historical sence we should look at how scientists have progressed ideas and make judgements on how they will progress them in the future.

Personally I find the way the PACE trial has been run and results kept hidden very worrying. It was a complete work of incompetance yet Wessely is still praising it as a well run trial. We need proper scientists with good scientific method looking at ME - nothing else should be acceptable.

PACE was a well run trial showing that it isnt effective, so now it shouldnt be recommended.

 

[Sean]

PACE was a highly manipulated trial, that still failed to deliver the result its authors and supporters desperately wanted.