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

Also to the journalist who has been well and truly played by MS and KG. He failed to do his homework.

 

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).

 

One thing that has just occurred to me. MS must be so annoyed that he can't block people from writing unflattering comments in the Guardian!

 

https://twitter.com/user/status/1058820931655737344

https://twitter.com/user/status/1058821753256972289

https://twitter.com/user/status/1058822749584527366

 

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.)

 

Who does he think these activists who are not patients would be?

 

Urm, hard to say really as nobody cares about ME patients. Oh, maybe our carers - our spouses, our parents, our children? Of course they have so much time left after doing the caring thing that they can spend hours every day hounding Sharpe et al.

 

There were healthy people present at the protest in New York City, and at MillionsMissing events. I don't see anything wrong in getting help from other people.

 

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.

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.



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.

 

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.

 

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 :-/

 

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.

 

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.

 

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?

 

I'm working on mine...

 

From twitter it seems he really doesn't like the work of @dave30th which is a sign that it is succeeding

 

MS likes to keep moving the goalposts. I wonder where he learned that.

 

Nice one, that. For a while I thought you were being serious until I remembered post#56.