Who said: don't bother testing patients?

chrisb said:
many TATT people were self diagnosing with ME
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TATT?

chrisb said:
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.
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I used to consider my onset 'sudden', but after closer examination, I had multiple health events from 2011-2014 from which I never adequately recovered. 2014 was more my "point of no return" moment than "onset". In that big #MEAction survey with 1800 responders, many others reported similar onset.

chrisb said:
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.
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He's threading a very difficult needle: legitimizing "real" illness while examining "fake" illness. He starts off the lecture by saying "I know many of you hoped I would talk about CFS today, but I am here to talk about something quite different..." (paraphrased). So he is beginning the conversation by explicitly clarifying that this talk is not about CFS. And his sympathy with a patient being described as hysterical is very carefully crafted. He says: of course no one would wish to be described this way; how humiliating, how terrible; and then eventually he arrives at "and yet there is some truth to it."

The labyrinthine nature of the argument is intentional, or maybe it's better to say it's unavoidable, given the thrust of his argument: that there are two phenomena. One is a 'real' disease/disorder. The other is the conviction one is ill in the absence of disease. He labels the second group hysterical, and links them with other historical cases of hysteria. To do this, he must invoke Eliot Slater (who argued that hysteria is a comically lazy non-diagnosis) and somehow, simultaneously, Beard -- who may be the actual originator of the advice that you should not treat or test hysterical patients:

Perhaps the most dismissive voices were those of McEvedy and Beard in 1970, who trivialized the Royal Free Outbreak as “epidemic neuromyasthenia” – a rash of hysterical behavior that spreads (primarily) from woman to woman. A paper from the time reassures the reader that “Care was taken to minimize anxiety and fear in a vulnerable population, and laboratory investigations were limited in number for this reason.” The BMJ received multiple letters of objection from clinicians who had treated patients and/or contracted the illness themselves.
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I'm quoting myself. ;)

Now, contrast Elliot Slater:

In the 1950s a psychiatrist named Elliot Slater studied a cohort of eighty-five patients who had been diagnosed with hysteria. Nine years later, twelve of them were dead, and thirty had become disabled.
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Slater has some fantastic quotes about how a diagnosis of hysteria is permission for the clinician to "stop thinking and reasoning" and I love it but can't find the exact phrase.

Somehow, Wessley decided the best way to honor Slater's memory was to talk about how hysteria was a real thing, and applied to ME. Then he adds the kicker, that saying so "makes me feel worried for me and my family" (paraphrasing). He was saying ME patients were violent maniacs as early as 1994.

Helluva guy.
 
Lucibee said:
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.
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Given this was 1994 and Wessley was one of the authors of the Fukuda criteria, I'm now kinda assuming that was what he referred to.

In order to meet Fukuda, you need fatigue for 6 mo plus at least four out of eight symptoms, off the top of my head:
  • sore throat
  • swollen lymph nodes
  • PEM (early descriptor, but I still think it fits)
  • cognitive issues (concentration, e.g.)
  • unrefreshing sleep
  • headache
Sorry, I'm blanking on the rest but you get the point. You couldn't just be fatigued and meet criteria.
 
rvallee said:
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.
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It literally seems as though it's all in the name. He's saying CFS (Fukuda) is real, but all people who say they have ME have no disease at all.

I think his intent was crappy, for the record.
 
There would appear to have been a distinct change of attitude on the part of SW between January 1992 and October 1993 the dates of his letters to Mansell Aylward.

The latter one contained the statement:

"the main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry..... As we, and now many other groups have shown, the only determinant of outcome in this condition is strength of belief in a solely physical cause then it will also itself contribute to disability and poor outcome."

I fear that this thinking must be on a higher plain which I never attained ,even when well.
 
Inara said:
That contradicts Oxford criteria, doesn't it? And in the Oxford cr., other symptoms than fatigue are optional
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Yes.

My impression is that there were many on the committee to produce Fukuda -- Wessley was one voice amongst over a dozen. Perhaps his ideas weren't pushed forward so much as he might have hoped.

The other possibility is that he began to favor Oxford criteria when he realized Fukuda wasn't generalized enough. Fukuda is a very broad criteria, but it's razor-sharp in comparison to Oxford.

So either Wessley, despite being involved in the creation of Fukuda never liked it; or he learned over time that his work shone best when he used unspecified fatigue, instead.

Or a little from Column A, a little from Column B...
 
JaimeS said:
This is becoming a meme. I've heard this multiple times in the past few weeks! I wonder what's led to an increase in this suggestion (tongue-in-cheek or not) in chronic illness community!
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I don't know what's happened recently but my husband said this same thing (vets treat their patients so much better than human doctors) to me back in the early 1990s.

PS. this thread has some amazing info! thanks to all who have posted!
 
I have been thinking about this thread (and others).We have been looking at so many of these speeches, letters etc, recently and one thing jumps out at me - the number of neat phrases that we have to go back and see are not really so damaging as they sound because they have been taken out of context. From "ME is simply a belief" to "people with ME are the undeserving sick of our society" by way of the PACE trial not being about ME and E C talking about being harassed with a magazine mock up page behind her but carefully not saying she was actually sent that one, there is a superabundance of statements like this.

Now these are professional people in a discipline which uses words and these are not off the cuff remarks. It is almost as if they are trying to make a point in such a way it is deniable.

I understand that we have to be careful to make sure that our claims are valid or we will be shown to be wrong and damage our cause but it means we always have to do so much work and are endlessly caught up in trivia trying to untangle obscurity, opposite meanings, double meanings and context while their real message stands out loud and clear.

I remember one occasion when a guideline for the NHS, or something like that came out, he insurance industry immediately said that ME was a mental illness and they would not be paying out. They had to explain that they weren't saying that at all, it only looked like it. One occasion when it backfired on them
 
Mithriel said:
Now these are professional people in a discipline which uses words and these are not off the cuff remarks. It is almost as if they are trying to make a point in such a way it is deniable.
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7ac.jpg


(or she)!
 
Mithriel said:
It is almost as if they are trying to make a point in such a way it is deniable.
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Plausible deniability, much favoured by politicians and others wanting to deny responsibility. If need be later then saying they are being misinterpreted and that's not what they really meant. But they always overlook one crucial point: plausible deniability only works for so long as the deniability remains plausible! For any individual instance of a behaviour, such things can often be readily deniable. But as repetition of such behaviours builds to show a common pattern, it becomes far less plausible. I think this is also an issue when prosecuting criminals, where the evidence is often built around patterns of behaviour, even though any single instance of a behaviour may be insufficient evidence. Which is why I think the gathering off all these various examples of behaviour may prove to be very important one day.
 
A couple points:

1) I think it would be good to have a thread about tests used by ME experts. This might help pwME and others new to this issue.

2) I looked up synonyms for "undeserving"; I don't have this info handy, but there are lots of derogatory, nasty equivalent terms.

3) Or, maybe it was a typo/misheard? Maybe what was actually said was pwME are the "underserved sick"!

4) And, why would anyone want to see a practitioner who views them as a benefit
scrounger, and a malingerer? Could cut into the cash flow for that type of health care worker.
 
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