Michael Sharpe skewered by @JohntheJack on Twitter

'So here is a challenge for ME activism:
Can you articulate what treatment you want as opposed to what you don't want?
Can you offer a positive vision for care as opposed to negativity about previous research?'

Yes, this has been articulated for at least five years, probably fifteen.
A treatment based on the sort of evidence accepted as reliable in medicine as a whole.
Preferably linked to a coherent causal model that allows for logical refinement.
The BPS model of ME/CFS starting with Wessely and Chalder is incoherent and too vague to be testable. The psychiatric fraternity have shown themselves to be incompetent even in devising something that might come near to a test.

The real issue for people with ME is not whether or not it is biological or psychiatric. It is that the psychiatrists who have chosen to study the illness have shown themselves to be totally incompetent.
 
chrisb said:
On this point there is an interesting comment by Sharpe during the discussion which followed the presentation of Edwards' paper at the CIBA conference in 1992:

"I would suggest that there may be other patient characteristics that are more useful than symptoms in predicting outcome and response to treatment."
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Like, whether they believe in fairies? Dress to the left?
 
'A strong positive message will be more easily heard I think.'

I suppose Dr Sharpe should know. The negative message does not seem to be getting through to the CDC, Parliament, the press, twitter etc. does it?

What a dumb thing to say though. It is the medical profession that are supposed to come up with treatments, not patients. Patients want something that works. Is it that difficult to see that? They don't want something that makes them ineligible for DWP handouts.
 
'Good for you. There were four ams to the trial by the way.'

In a court of law Dr Sharpe would make such a fool of himself in front of the judge that his entire testimony would be considered worthless. To repeat endlessly that 'all my critics are dumb and have not read the paper' is not considered useful evidence.
 
Lucibee said:
I tried to pin him down on what phrase he would prefer... (thread)

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PACE CBT therapist manual said:
Theoretical Model
The model emphasises the importance of the participant’s understanding of their illness
and their interpretation of symptoms. For example they may interpret symptoms as a
warning sign to reduce activity. Fear of symptoms and consequent avoidance of activity
associated with symptoms is central. This model also acknowledges that the
participant’s beliefs and behaviours are influenced by available information and
attitudes of families and friends and that these may also need to be addressed. The
model assumes that physiological (fatigue), cognitive (fear of engaging in activity) and
behavioural responses (avoidance of activity), are linked. Therefore by modifying one
response it is anticipated that changes occur in the other responses. For example,
increasing activity (behaviour) may gradually reduce the fear (cognitions) that activity
leads to worsening of symptoms.
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[My bold]

The manual (and some of the others no doubt), clearly states in as many words the notion of false illness beliefs, even if not that exact phraseology.

Also note it talks about a model, a word which MS seemed averse to using for PACE, but not sure if the context is the same.
 
Robert 1973 said:



Wessely seems very anxious to assure us that he was not an author, when, as Keith points out, nobody has suggested he was. I’m not sure if this is, as Keith suggests, a diversionary tactic or whether there may be more too it.

Wessely’s own tweets suggest that he probably should have been an author and he certainly could have been had he wanted to be. So why did he chose not to be? Was it because he realised that the trial could be a disaster? Was it because he wanted to maintain the illusion that he was no longer involved with ME/CFS research? Or would not being listed as an author have enabled him to undertake some other role pertaining to the trial from which an author would be precluded? I have no idea what the answer is to that last question but I’m very interest to know. Any ideas? (@Lucibee)?
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Ok, I'll throw a wild one out there, could he have been a reviewer of the paper? Correct me if I'm wrong but the list of reviewers is still unknown and not being an author he would have been eligible? Probably me being too cynical.

Sorry about the late reply, this thread is great but long so I'm having to take it slow. Keep up the good work.
 
@Adrian I've sent you a few more files with screen captured tweets. File nos now go up to number 15 (let me know if they have all arrived) that will take the series up to post number 1500 on this thread.

Many thanks also to a @large donner who kindly sent me an Amazon voucher as a thankyou for doing this - it was not required, but the thought was greatly appreciated. I'm going to enjoy browsing Audible offers later tonight. Then tuning in to my next listen. Ahhhh.... :)
 
Jonathan Edwards said:
'So here is a challenge for ME activism:
Can you articulate what treatment you want as opposed to what you don't want?
Can you offer a positive vision for care as opposed to negativity about previous research?'

Yes, this has been articulated for at least five years, probably fifteen.
A treatment based on the sort of evidence accepted as reliable in medicine as a whole.
Preferably linked to a coherent causal model that allows for logical refinement.
The BPS model of ME/CFS starting with Wessely and Chalder is incoherent and too vague to be testable. The psychiatric fraternity have shown themselves to be incompetent even in devising something that might come near to a test.

The real issue for people with ME is not whether or not it is biological or psychiatric. It is that the psychiatrists who have chosen to study the illness have shown themselves to be totally incompetent.
Click to expand...
Actually, Jonathan, I disagree. the real issue for patients like me with a diagnosis in eighties of ME as defined by Melvin Ramsay IS that we have a poorly understood physical illness that has been catastrophically reframed as psychiatric.
 
Jonathan Edwards said:
'A strong positive message will be more easily heard I think.'

I suppose Dr Sharpe should know. The negative message does not seem to be getting through to the CDC, Parliament, the press, twitter etc. does it?

What a dumb thing to say though. It is the medical profession that are supposed to come up with treatments, not patients. Patients want something that works. Is it that difficult to see that? They don't want something that makes them ineligible for DWP handouts.
Click to expand...

Quite, it's his way to further blame us for our plight.

As for saying respect is key.....totally unbelievable....the psychs have ensured we're all treated with total disrespect for decades, decades!
 
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