Who said: don't bother testing patients?

[Lucibee]

The reasoning isn't sound, however. I'm curious to see what you all think of it.

I'm going to need to read these side by side (the pdf from my previous post: https://www.s4me.info/threads/who-said-dont-bother-testing-patients.6532/page-4#post-119524 and the lecture) and see if they are actually concordant. Because from your description, I'm not sure they are. I think he says different things to different audiences and spreads as much confusion as he possibly can.

[ETA - or maybe he's being vague enough so that different audiences have different interpretations?]

 

[Mithriel]

What he was saying was more offensive in 1994 than may be appreciated now. ME had come out of the doldrums in the 1980s with people like Eleanor Bell and others finding sporadic cases not just epidemics. There was a lot of research being done, the polio experts were still sharing their knowledge and it was being seen as a legitimate disease in many quarters.

The ME Association supported local groups and we met and knew we shared the same disease. Ramsay's description of an illness which had a main symptom of an abnormal response to exercise, where symptoms could vary by the day, the week or months was accepted, the only controversy was how it should be treated and what caused it - not different from many other illness in that.

Then SW turned up and started talking about fatigue and neurasthenia, completely ignoring the patients, the doctors and the epidemics. When he talks about ME being a belief he is being completely arrogant. he doesn't care about sick people only pushing his own theory. There were hundreds of people who had ME characterised by energy problems. I, for one, had never had 6 months of fatigue so did not meet his definition of CFS but he just took over and left us in the wilderness. I have never understood where he got the authority, but someone let him do it.

It was like someone coming along and telling people MS did not exist and leaving them abandoned.

He needed the seriousness of ME to get the money to deal with his own pet project of chronic fatigue.

 

[Barry]

But out of these 15,000 people only 38 out of 15,000 people in this survey actually thought they had ME, and most of those didn't fulfil the criteria for CFS.

We then continued this study in primary care, by following up 2,400 patients attending their GPs, of whom half had presented with with a viral illness. 6 months later we had a look at who still had substantial fatigue here and here, and who had CFS [*]. Not many did - 196 overall (10%) had chronic fatigue lasting six months but only 30 had CFS - 1% overall.

Yet of those with CFS, few believed they had ME, and in only 1 was it a post viral condition. Hence CFS is not very common, believing you have ME is very rare, and the two rarely overlap. and I am going to talk about this rare group.

CFS is therefore more important

[My bold]

Not read it all yet, but the thrust of his argument seems reliant on patients' self-diagnosis of their own condition, which just seems weird. When my wife was diagnosed in a bit over 10 years ago, we didn't have a clue what the problem was until medical professionals diagnosed it. And back in 1994 there would have been even less awareness. So how on earth can you start citing the rareness of ME relative to CFS, based on patient's own self diagnosis. It sounds even more dodgy than relying on patient's self-reported outcomes.

 

[Inara]

What he was saying was more offensive in 1994 than may be appreciated now.

Personally, I think I understand it. "Advertizing" was a nice word...there exists another for heavily transporting a certain ideology.

 

[Mithriel]

I was diagnosed by a hospital consultant in 1984. Many people were diagnosed by doctors. 38 out of 15,000 is unbelievable. Where did he get 15,000 people to do a survey in 1994 before the internet was widespread?

He is describing a situation that I never saw and I was involved with ME groups then. There was the ME Association, local people I knew and also pre internet bulletin boards where someone who had access would send out a disc with interesting articles and reports from conferences, things like that.

I, personally, knew more than 38 people with ME

 

[Barry]

What he was saying was more offensive in 1994 than may be appreciated now.

Indeed. His repetitions of "the rise of ME" shows his dismissive attitude, and clear belief it is just an imagined disease.

 

[Lucibee]

OK - I've found the study he was referring to: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539651/

BMJ. 1994 Mar 19; 308(6931): 763–766.
Population based study of fatigue and psychological distress.
T. Pawlikowska, T. Chalder, S. R. Hirsch, P. Wallace, D. J. Wright, and S. C. Wessely
Abstract
OBJECTIVES--To determine the prevalence of fatigue in the general population and the factors associated with fatigue.
DESIGN--Postal survey.
SETTING--Six general practices in southern England. SUBJECTS--31,651 men and women aged 18-45 years registered with the practices.
MAIN OUTCOME MEASURES--Responses to the 12 item general health questionnaire and a fatigue questionnaire which included self reported measures of duration, severity, and causes of fatigue.
RESULTS--15,283 valid questionnaires were returned, giving a response rate of 48.3%, (64% after adjustment for inaccuracies in the practice registers). 2798 (18.3%) of respondents reported substantial fatigue lasting six months or longer. Fatigue and psychological morbidity were moderately correlated (r = 0.62). Women were more likely to complain of fatigue than men, even after adjustment for psychological distress. The commonest cited reasons for fatigue were psychosocial (40% of patients). Of 2798 patients with excessive tiredness, only 38 (1.4%) attributed this to the chronic fatigue syndrome.
CONCLUSION--Fatigue is distributed as a continuous variable in the community and is closely associated with psychological morbidity.

Looks like he was conflating ME with CFS even then. This is doing my head in!

 

[JaimeS]

Not read it all yet, but the thrust of his argument seems reliant on patients' self-diagnosis of their own condition, which just seems weird.

It's one of the worst logical lapses in his argument, such as it is. He goes all over the place.

And back in 1994 there would have been even less awareness.

That's another one. Unless I'm reading it wrong he's basically saying "these people with CFS don't believe they have ME, but if they DO believe they have ME, they actually don't." That definitely relies on how informed people are about ME.

Where did he get 15,000 people to do a survey in 1994 before the internet was widespread?

He probably asked certain hospitals to participate.

Looks like he was conflating ME with CFS even then.

....I noted he seems careful to say CFS is 'real'.

He was one of the authors of the Fukuda criteria, so he probably had a stake in clarifying that he'd developed a criteria for a 'real disease'.

But he says that ME is 'imaginary'. So does he mean some other criteria, or what?

I'll have to read the study above to get a better feel.

@Inara I know you asked for my analysis of the speech Wessley gave -- not ignoring your comment, just may not have time to get into it line-by-line just now.

 

[JaimeS]

OK - I've found the study he was referring to: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539651/
Looks like he was conflating ME with CFS even then. This is doing my head in!

RESULTS--15,283 valid questionnaires were returned, giving a response rate of 48.3%, (64% after adjustment for inaccuracies in the practice registers). 2798 (18.3%) of respondents reported substantial fatigue lasting six months or longer. Fatigue and psychological morbidity were moderately correlated (r = 0.62). Women were more likely to complain of fatigue than men, even after adjustment for psychological distress. The commonest cited reasons for fatigue were psychosocial (40% of patients). Of 2798 patients with excessive tiredness, only 38 (1.4%) attributed this to the chronic fatigue syndrome.

So he's also misquoting himself.

He states in the speech that 10% of patients had chronic fatigue as a symptom, and 1% had 'true CFS'. And that there was a third group who 'claimed' to have ME but didn't meet "the" criteria.

I give up!

 

[Inara]

Inara I know you asked for my analysis of the speech Wessley gave -- not ignoring your comment, just may not have time to get into it line-by-line just now.

Oh no no, please no trouble!

 

[Sean]

I give up!

This is doing my head in!

Welcome to WesselyWorld. Nobody leaves completely sane. Some never leave.

 

[Barry]

He goes all over the place.

My distinct impression. But always heavily in the direction of deep prejudice, and always avoiding scientific argument like the plague. Classic. Although this stuff is old, it gives useful insights into the rather strange and disturbing world SW inhabits.

 

[chrisb]

I am sorry to harp on about what must currently seem like an obsessional interest of mine, but what SW seems to be describing in his Elliot Slater lecture, with his view that ME is merely a belief, appears to be pure Abnormal Illness Behaviour related to the discrepancy between the views of the doctor and the patient as to the nature of the illness. It is strange that having said, in 1988, that this idea was a part of the "new approach", for which it was time, it is never, so far as one can tell, mentioned again with appropriate citations. What he doesn't get is the obligation on the doctor to be "right", and it is hard to see how this is possible in an area of uncertain taxonomy.


It does appear that SW did in fact share some of the views of the patients of the time, with a diagnosis of ME or PVFS, without realising or understanding that he was a part of the problem. There was a widespread view that many TATT people were self diagnosing with ME. They seemed to be unwell, but their condition appeared to be substantially different to ME or PVFS. I am not making the point about rapid-onset viral infection being the only true ME; it is very striking that there are people with insidious onset who display otherwise identical symptoms.


The nature of the debate seems to be most clearly set out in a comment by Susan E Abbey in Somatisation, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome (1993 Chronic Fatigue Syndrome; Ciba Geigy Symposium 173)


Psychiatric disorders have been described in a significant proportion of CFS patients....It is unclear whether the psychiatric disorders are the cause, or result, or a covariate of CFS, and there has been debate as to whether they may be artefactual...… The meaning of these findings is unclear, and probably each of these models for the relationship between psychiatric disorder and CFS operates in some patients. The concepts of "somatisation" and "illness behaviour" are helpful in furthering our understanding of the relationship between psychiatric disorder and CFS and in understanding those individuals who do not appear to have the disorder, but who espouse it for psychological and social reasons.

My understanding of Wessely's lecture is that he is addressing the point about those who espouse the illness whilst not fulfilling the criteria. But it is hard to be sure. For one who is quite capable of lucid expression he is strangely obscure. His major error appears to be to believe that all those claiming to have ME fall within this category. Many did fulfil the criteria for ME, and it is not clear why he thinks he and his allies have any better right to create an illness description than equally, or, arguably, better, qualified colleagues.

 

[Mithriel]

It all shocked me then and the bewildered feeling has never gone away. He was like a conquistador who came to a new land, renamed it, described it and took ownership while ignoring the native population.

 

[Lucibee]

In the Pawlikowska study, it says:

"Thirty eight people described themselves as having the chronic fatigue syndrome. More detailed follow up of these patients will be reported elsewhere. All belonged to social classes I, II or IIIa and 30 were women. Patients with a self diagnosis of the chronic fatigue syndrome had the highest mean fatigue scores..."

I've looked, and there was no detailed follow up of these specific patients reported elsewhere. However, this follow-up study appeared in The Lancet a year later: https://www.ncbi.nlm.nih.gov/pubmed/7752755 (#59 in his CFS files).

It's interesting that those 38 reported in the first study were noted to have the highest mean fatigue scores, so I'm not sure how they then failed to qualify as having CFS (in his lecture), which only really requires a report of unexplained fatigue for 6 months.

The second study doesn't make sense. There is no way that it is large enough to pick up sporadic PVFS in the community - so it's no wonder they didn't find it. And it seems odd to do this type of study on the back of the previous one, which preidentified subjects with fatigue - so surely is the wrong way around. It just seems to be an exercise in obfuscation.

 

[rvallee]

This is the same thing as the previous paper. He is not saying that CFS is imaginary -- if you read the next few paragraphs he says the following:

1) Fatigue is a spectrum, and it's basically a bell curve.
2) People have extreme fatigue -- some meet CFS guidelines and have CFS.
3) These people don't identify as having ME.
4) There is another group who do say they have ME.
5) These people who say they have ME don't actually meet any criteria.
6) Therefore there are two groups: people who think they have ME and meet no criteria, and people who do have CFS and don't identify as having ME. There is little overlap.

This is a strange, almost nonsensical argument to make. Is this that song?

You don't know you're beautiful...
...that's what makes you beautiful!

But once again, he reiterates the same argument from the previous paper. He doesn't say CFS doesn't exist -- he says that there is a group of people who believe they have ME w/o meeting any of the criteria.

But it's still stuck with the paradigm that ME = "chronic fatigue". This is fundamentally wrong and no amount of generous interpretation of intent will change that.

If he wanted to create a distinct illness group separate from ME, fine, but he did the opposite, blurring the lines so that ME disappeared entirely, especially by deliberately not funding research.

Wessely is good at making arguments he does not believe in order to support the ones he does believe. But if he had been honest, he would have made a strict separation between his construct and the neuroimmune disease ME.

 

[rvallee]

Does this really exist to some notable extent?

Most likely only because of the poor criteria of 6 months of unexplained fatigue, which was deliberate blurring.

This is also the likely explanation for most people who swear they are cured of ME, when they never actually had it. Those who fit the actual criteria and do "recover", to a point, always point out that they live very carefully managed lives. Some consider themselves recovered, but only because they have significantly lowered their expectations.

 

[rvallee]

I think he says different things to different audiences and spreads as much confusion as he possibly can.

[ETA - or maybe he's being vague enough so that different audiences have different interpretations?]

He does. So does Sharpe. The claims from PACE are both that it is a seminal paper but also just an old piece from 2011 that is not all that relevant since there are other (tiny) studies (with the same egregious flaws and unblinded self-reported outcomes) showing the same.

It's something they have all left behind because of how they were "treated", even though they are still active participants in maintaining the stranglehold and accepted awards over this and are beaming proud of it.

Sharpe described the PACE conclusion as both showing it only may be beneficial to some, but it is also fully curative to those who want to get better (you do want to get better, don't you?).

Also there are fierce militant activists bullying honest researchers seeking the truth but don't ask for evidence or to name names. (And let's not pay too much attention to the fact that a tribunal ruled they full of crap).

It's deliberate deceit. They know what they're doing. They're not very good at it and only succeed because prejudice makes the medical profession strongly dislike us, but they know what they're doing.

 

[rvallee]

He needed the seriousness of ME to get the money to deal with his own pet project of chronic fatigue.

Good insight. Co-opting a serious disease that was ambiguous to fabricate a new construct that had no legitimate body of evidence.

Devious and cruel. But clever.

 

[rvallee]

In the Pawlikowska study, it says:

"Thirty eight people described themselves as having the chronic fatigue syndrome. More detailed follow up of these patients will be reported elsewhere. All belonged to social classes I, II or IIIa and 30 were women. Patients with a self diagnosis of the chronic fatigue syndrome had the highest mean fatigue scores..."

I've looked, and there was no detailed follow up of these specific patients reported elsewhere. However, this follow-up study appeared in The Lancet a year later: https://www.ncbi.nlm.nih.gov/pubmed/7752755 (#59 in his CFS files).

It's interesting that those 38 reported in the first study were noted to have the highest mean fatigue scores, so I'm not sure how they then failed to qualify as having CFS (in his lecture), which only really requires a report of unexplained fatigue for 6 months.

The second study doesn't make sense. There is no way that it is large enough to pick up sporadic PVFS in the community - so it's no wonder they didn't find it. And it seems odd to do this type of study on the back of the previous one, which preidentified subjects with fatigue - so surely is the wrong way around. It just seems to be an exercise in obfuscation.

Seems to be a quantity over quality empire-building. By publishing many self-reinforcing papers, likely with peers reviewing each others' work, over time they can cite their own and their peers' papers to support new papers, even though they are making the same arguments.

There was an article published a few days (or weeks?) ago showing how there are networks of self-reinforcing researchers who mostly cite themselves and each other. That's likely what happened here, a "foot in the door" approach where the work may be mediocre but it's been cited many times before and since it's an insular exercise, not many people who would contradict them would ever been involved.

Put another way: a proper circle jerk.

And that's how we get absurdities like the Cochrane review, which normally would have never accepted unblinded trials with self-reported outcomes as valid clinical evidence of anything. Some of the researchers reviewed their own work, with the others being friendly peers who share the same beliefs.

The peer review system is broken. This has been said many times but it clearly is broken.