The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

Sharpe is now saying that PACE critics aren't patients.

It sounds like he's close to declaring that they are "not really ill" or suffer from some personality disorder that compels them to act in this way.

Or maybe he's trying to collect some more evidence of abusive behaviour by patients with provocative tweets (inadvertently producing evidence of his own strange behaviour).
 
strategist said:
It sounds like he's close to declaring that they are "not really ill" or suffer from some personality disorder that compels them to act in this way.
Click to expand...
Henningsen - the Wessely-disciple in Germany - said in a paper (Neurasthenie und chronic fatigue syndrome I guess) that activism* is a proof that CFS is a neurotic disorder.

(*More precisely, to deny the psychological nature of CFS and to insist it was organic was a proof it is neurotic. It has to be noted - at least that's my impression - that it was the BPSers that started the "psychological vs. organic" discussion; I think what pwME fought/fight against is the BPS-conviction that ME isn't real, but only the belief to have an illness called ME. That's pure discrimination, and that's what pwME fight against.)
 
Russell Fleming said:
I have listened to some of the podcast, and wondered if anyone could possibly tell me why Sharpe mentions that people who had depression in the past are likely to develop ME/CFS and that another cause might be 'genetic load' (I think he said).
Click to expand...

The supposed link between CFS and depression goes back to this July 1990 paper: Chronic Fatigue: A Prospective Clinical and Virologic Study

..in which only six of the 26 patients met the Holmes criteria.
The patients in our study were enrolled from 1985 through 1987, before the formal criteria for "CF syndrome" were established in 1988. In retrospect, six of our patients fulfill the criteria of the Centers for Disease Control.
Click to expand...

This was the famous study in JAMA (Journal of the American Medical Association) which found no differences in EBV titers between patients and controls but did find "higher frequency of DSM III depressive illness." This was widely misreported as showing that chronic fatigue syndrome was linked to depression, despite the fact that only about 1 in four of the patients in the study met the 1988 Holmes criteria.

It's hard to overestimate how widely this study was reported at the time. It was a headline in major newspapers and was covered by television news programs (including on my local station in San Francisco). It seems this was the result of JAMA putting out a press release containing the misleading information. AIDS was a huge story back then, so a "comforting" story that eliminated a viral attribution in favor of a psychological one in another "mysterious epidemic" was probably given a lot of play for that reason.

UPI 02.jpg

Hillary Johnson wrote about this incident in "Osler's Web." As I recall from her account, several weeks later, JAMA put out a correction - and no one reported it. The die was cast and probably a lot of young psychiatrists/psychologists filed away in their heads that CFS was "linked" to depression.
 
Last edited:
Lazy idiot doctors tend to give a diagnosis of depression when presented with ME symptoms, I think it's something to do with a 'more than 3 or 4 symptoms and the patient is probably depressed/neurotic' litany that seems to operate, in their heads.

This diagnosis seems to only be overturned when the patient, who has ME not depression, finds that drugs which may work with depression, don't work all that well for PwME, and makes polite enquiries as to what the bloody hell is going on. Possibly leading to other doctors.

So it doesn't surprise me at all that a lot of people with ME have a prior, incorrect, diagnosis of depression.
 
strategist said:
Sharpe is now saying that PACE critics aren't patients.

It sounds like he's close to declaring that they are "not really ill" or suffer from some personality disorder that compels them to act in this way.

Or maybe he's trying to collect some more evidence of abusive behaviour by patients with provocative tweets (inadvertently producing evidence of his own strange behaviour).
Click to expand...

ukxmrv said:
Who does he think these activists who are not patients would be?
Click to expand...


I read that as he's angeling for the "angry (male) online activists attaching themselfs to any cause" - as they have done before? And that was dismissed in the court case over releasing the data?

Maybe time to look for any useful quotes from the ruling....?

Edit: But with his usual vagueness, it's hard to tell what he's really implying :-/
 
Last edited:
Jonathan Edwards said:
Does Michael Sharpe really not know that the person whose complaint sparked this episode was so ill that he is no longer with us? Or that the successful FoI request that has shed some light on things came from someone who has since been too ill to communicate with others?

I have made a decision at present not to get involved in this sort of stuff but for a psychiatrist to behave like this is simply pathological. Psychiatrists are supposed to have respect and sympathy for people in distress.
Click to expand...

On Bullshit
Click to expand...
(2005), by philosopher Harry G. Frankfurt, is an essay that presents a theory of bullshit that defines the concept and analyzes the applications of bullshit in the context of communication. Frankfurt determines that bullshit is speech intended to persuade without regard for truth. The liar cares about the truth and attempts to hide it; the bullshitter doesn't care if what they say is true or false, but rather only cares whether their listener is persuaded.[1]
Click to expand...
https://en.wikipedia.org/wiki/On_Bullshit#cite_note-bullshit-1

It seems quite clear to me that Michael Sharpe does not care about whether things are true or false, but whether they are persuasive to his current audience.
 
Russell Fleming said:
I have listened to some of the podcast, and wondered if anyone could possibly tell me why Sharpe mentions that people who had depression in the past are likely to develop ME/CFS and that another cause might be 'genetic load' (I think he said).
Click to expand...
I think this is very revealing. MS clearly believes there is a correlation, with people suffering from depression being more predisposed to getting ME/CFS. This probably means that in his experience this has actually been true. Which to me says his experience of people PwME is much more likely to be with people misdiagnosed with ME/CFS; people whose fatigue symptoms are perhaps more likely to be related to their mental state - indeed maybe people whose depression etc. might have made them lethargic and disinclined to exercise. The sort of people who might respond better to his kind of therapies. Which to me shows why PACE was so doomed from the outset, and why we are where we are today.
 
DrGvu_NWoAE_kcM.jpg:large


First it was a minority of patients, then it was vexatious patients, then it was people with an agenda along with patients, then it was people who hadn't read the papers, then it was a few badly informed people who had no description because admitting they were academics and doctors would have weakened his argument. Then it was an MP who were unbecoming of being an MP. Now its not patients cos its impossible for thousands of patients to do a little bit each from their couches or beds to share the burden to collate information. Then there's silence over the issue of how ill doing this made some patients because of the physical effort. Then he forgets 30 MPs have taken his study to task in Parliament. So presumably its not MPs cos they would be too busy doing politics.

He never mentions the hundreds of academics by name who have supported and published critiques of his study.

It's all irrelevant anyway even if the FOI requests etc were made by the bloody man on the moon its the content of what has been revealed about his studies and other work and involvements.

People with MS campaign, people with cancer campaign too, so what?
 
Last edited:
large donner said:
DrGvu_NWoAE_kcM.jpg:large


First it was a minority of patients, then it was vexatious patients, then it was people with an agenda along with patients, then it was people who hadn't read the papers, then it was a few badly informed people who had no description because admitting they were academics and doctors would weakened his argument. Then it was an MP who were unbecoming of being MP. Now its not patients cos its impossible for thousands of patients to do a little bit each from there couches or beds to share the burden to collate information. Then there's silence over the issue of how ill doing this made some patients because of the physical effort. Then he forgets 30 MPs have taken his study to task in Parliament. So presumably its not MPs cos they would be too busy doing politics.

He never mentions the hundreds of academics by name who have supported and published critiques of his study.

It's all irrelevant anyway even if the FOI requests etc where made by the bloody man on the moon its the content of what has been revealed about his studies and other work and involvements.

People with MS campaign, people with cancer campaign too, so what?
Click to expand...
MS likes to keep moving the goalposts. I wonder where he learned that.
 
Lucibee said:
omg! It's a conspiracy! Seriously though - please don't do this. Just because QMUL hold the data and employed one of the researchers, doesn't mean that everyone who ever worked or studied there is somehow culpable in this. (I know it was probably said in jest - but just saying)
Click to expand...

Nice one, that. For a while I thought you were being serious until I remembered post#56.
 
You must log in or register to reply here.
Back
Top Bottom