Lucibee
Senior Member (Voting Rights)
Yes, that's what I was referring to, but I gather it was obtained by fairly dubious means, so was glad to find a more "legitimate" version.
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Yes, that's what I was referring to, but I gather it was obtained by fairly dubious means, so was glad to find a more "legitimate" version.
EzzieD
Senior Member (Voting Rights)
Ah, it was dubiously obtained? There are copies of it dotted about all over the Net, but it's unfortunate if it can't be used to quote from - I guess because it has 'not for circulation' scribbled on the front page.
I actually remember that quote being reported on when it was said back in 1994, so would have thought there would be some other record of it somewhere than that one set of dubiously-obtained notes. But perhaps 'someone' took active steps to make all other quotable records of that speech 'disappear' at some point...
rvallee
Senior Member (Voting Rights)
And from this day forward, the BPS model of illness shall be forever known as psychosophistry.
JaimeS
Senior Member (Voting Rights)
Though still distasteful, this appears to mean something quite different from the implications of the line as it has been isolated.
He is saying:
1) CFIDS and ME have operationally-defined criteria.
2) There is a memetic nature to the illness, such that people may think they have the disease regardless of whether they meet such criteria.
3) Therefore there are two groups of people: people who meet the criteria and people who believe they do, but do not.
4) This essay is concerned with that second group of people.
Wessley argues that there's a 'real' illness, but that the patients he would like to discuss don't have it. It seems to be a strange premise, but it is one that I've seen often, both from BPS theorists and from patients themselves: those who are 'really' suffering versus those 'undeserving ill'. I haven't figured out, yet, why it's such a popular theme, but it's really persistent.
It's interesting that Wessley acknowledges a distinct entity CFS and compares it to the social construct of saying one has ME as though they're completely separate phenomena.
Therefore, this line doesn't at all mean what it appears to, once removed from its context. He means the people who swear they have ME but don't meet established criteria for ME.
CBT and GET proponents have done enough terrible things that we can be perfectly honest and condemn their actions. We've used this quote for ages thinking it meant something else.
It reminds me again to be ever-cautious judging from single-line quotes.
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JaimeS
Senior Member (Voting Rights)
Hard to argue with that, though. I would also like appropriate and effective medications.
The argument here is "don't swamp the patient with 50 pills" and I can't call that unreasonable.
Now THAT'S unreasonable. FFS.
Even if I'm just looking at "okay we know that -- now what do we do about it?" -- like cytokines...
-- I've recently told my doctor that I don't want to be tested for anything about which I can do nothing --
B12?! Cheap test, easy fix? No?
ANS? Cheap test, easy fix? No?
Even NKC levels, there are things you can do (lactoferrin, e.g.). And so?
Sly Saint
Senior Member (Voting Rights)
same in the current NICE guidelines:Hard to argue with that, though. I would also like appropriate and effective medications.
The argument here is "don't swamp the patient with 50 pills" and I can't call that unreasonable.
Now THAT'S unreasonable. FFS.
Even if I'm just looking at "okay we know that -- now what do we do about it?" -- like cytokines...
-- I've recently told my doctor that I don't want to be tested for anything about which I can do nothing --
B12?! Cheap test, easy fix? No?
ANS? Cheap test, easy fix? No?
Even NKC levels, there are things you can do (lactoferrin, e.g.). And so?
1.2.2.4 Tests for serum ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.
1.2.2.5 Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis.
1.2.2.6 The following tests should not be done routinely to aid diagnosis:
- the head-up tilt test
- auditory brainstem responses
- electrodermal conductivity.
Inara
Senior Member (Voting Rights)
Does this really exist to some notable extent?
JaimeS
Senior Member (Voting Rights)
Scroll down and see what they say about exercise. I was surprised to see:
- Advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply go to the gym or exercise more) should not be offered to people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) because this may worsen symptoms.
- Strategies for managing chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) should not include an imposed rigid schedule of activity and rest.
But then there's also:
- Strategies for managing chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) should not include prolonged or complete rest or extended periods of daytime rest in response to a slight increase in symptoms.
And they explicitly mention that there isn't evidence that CoQ10, or B12, or Vit C, or the most basic stuff helps people (though if the patient wants some that's up to them, it adds to CYA).
But there's more to work with than I thought.
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JaimeS
Senior Member (Voting Rights)
Yes.
You can do palliative treatments, treat comorbidities, etc. Without testing you're just feeling your way forward in the dark.
JaimeS
Senior Member (Voting Rights)
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.
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JaimeS
Senior Member (Voting Rights)
Loss of time sense. Pretty bad cognitive symptom for me -- I do this all the time
Inara
Senior Member (Voting Rights)
I don't read it like you. How do you come to that conclusion? I only read the page Lucibee displayed. I interpret it such like Wessely differentiates between CFS and ME. CFS is defined operationally, ME - is not? CFS is a real diagnosis - ME is not? He says things about ICD that puzzle me (CFS under neurological and psychiatric - maybe in the US? - and WHO encourages not to use ME - really?) So Wessely is saying ME is an unreal disease, while CFS is real.
For him, CFS is fatigue, and he seems to refer to figures that show that there were people with ME that didn't meet CFS criteria - he doesn't say which ones explicitly, but since he refers to fatigue alone one can assume he means the Oxford criteria. It is not impossible to have ME without fatigue. It shows that Wessely doesn't/didn't understand and/or is fixated on fatigue.
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But what they do on the CFS/ME clinic programmes to get round the ‘imposed rigid schedule of activity and rest’ is to work with participants on setting their priorities and of course the overall thrust is about increasing activity it is relatively subtle but they sort of con you in to your own schedule of activity which of course to be seen to be doing what’s expected everyone most likely commits too much.
Changing the wording in the guidelines is probably relatively straightforward - but making sure that they don’t get mangled in the implementation is a whole other mountain to climb. As we know BPS are masters of twisting words to whole new meanings and the move away from GET to activity or symptom management programmes shows that with a veneer of change but underlying thinking remaining solid BPS
JaimeS
Senior Member (Voting Rights)
According to the paper that shows up as a scan in this thread, very few people actually had CFS -- I'd have to read the whole thing in order to know what that meant to Wessley in the 1990s -- and a VERY small number thought they had ME and did not meet the (which?) criteria. Both numbers were rather small in comparison to the population he examined.
Leaning into my computer and squinting at the poorly-scanned font I can make out the following:
- In an initial population survey, Wessley looked at data from 15,000 people, 38 of whom said they had ME. Most did not fit the criteria for ME.
- In a follow-up study of 2,400 patients for 6 months, Wessley found:
- Half had a viral illness over this period of time
- 196 had developed chronic fatigue -- which, shockingly, Wessley differentiates from CFS or ME
- 30 patients had 'true' CFS (again, what does he mean by this -- which criteria?)
- One of the patients had developed CFS post-virally
- "Yet of those with CFS, few believed they had ME" <-- what? Why not? What kinds of questions did he ask to determine this? [Edit: and did he ask them if they "believed" they had CFS, too? What might they have said in that case? Is this just a semantics argument really?]
- "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."
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JaimeS
Senior Member (Voting Rights)
Yep. Or CFS is a real illness, but ME is a belief.
[Edit -- I went and changed my wording in a few of these successive posts because I realized that Wessley was always saying it was CFS or CFIDS that was a 'real thing' and always saying that ME was the delusion. I changed my language accordingly.]
Who's that Canadian researcher who wrote on BDSM? He went on to repeat this numerous times.
[Edit 2: That would be Shorter.]
[Edit 3: see Wessley's lecture, below. He mentions Shorter.]
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JaimeS
Senior Member (Voting Rights)
Yeah, telling a clinician that the practice they've been engaging in is harmful to the patient, especially anything 'behavioral' and I don't imagine they'll turn on a dime. I agree that changing practice is going to be a huge problem.
JaimeS
Senior Member (Voting Rights)
I found his original lecture notes on this! They're long so I'm pasting in a Google doc.
I had to make paragraphs where it looked like they belonged, and I corrected some spelling and such because I assume it was a transcript.
I have a far better understanding of his thinking. I can finally see how he has arrived at the conclusions he has.
The reasoning isn't sound, however. I'm curious to see what you all think of it.
I had to make paragraphs where it looked like they belonged, and I corrected some spelling and such because I assume it was a transcript.
I have a far better understanding of his thinking. I can finally see how he has arrived at the conclusions he has.
The reasoning isn't sound, however. I'm curious to see what you all think of it.
Inara
Senior Member (Voting Rights)
That's how I understand it. He's actually advertising his fatigue-Oxford-CFS-agenda, like "Look, I'm opnening your eyes - I created CFS and I'll show you this is reality - the only reality". He's discrediting ME. It was maybe the beginning of his CFS-CF-CBT-GET success.
Inara
Senior Member (Voting Rights)
Would you be willing to summarize it or to quote which part seems important to you?
Edit: My conclusion hasn't changed from what I read.
He actually says ME is a symptom of a psychiatric disorder - an already known one (he doesn't name it). He critisizes psychiatry for being in a bad state not to have understood it, and to acknowledge ME (and CFS?) as a real disease.
By the way, he's often referring to psychiatric disorders as "unreal diseases". But today, we are attacked for the real vs. unreal discussion. It's nothing the ME community started.
Is he implying he is psychiatry's savior to show to the world what ME or CFS really is?
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