Are ME/CFS Patient Organizations “Militant”?, 2018, Blease and Geraghty

Sasha said:
It's unclear what else is in the 43 pages - it's not stated who wrote it. There were lots of other criticisms sent in, too.
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For some reason I always thought this was a Malcolm Hooper et al document. I may be wrong and have no reference.

ETA: See my next post for a reference
 
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BruceInOz said:
For some reason I always thought this was a Malcolm Hooper et al document. I may be wrong and have no reference.
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In the comments section following the transcript of the interview at
http://www.abc.net.au/radionational...son-of-treatments-for-chronic-fatigue/2993296

I found this comment:

ME Sufferer :
19 Apr 2011 8:21:42am

In this interview Richard Horton spoken about "a 40 page diatribe" that Prof White had to deal with and the Lancet had to publish. The tone f his voice gave away his annoyance at this. The 'diatribe' he referred to was almost certainly the complaint made to the Lancet by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry. Richard Horton's comment on this program has led to Prof Hooper deciding to put his complaint into the public domain. Is this a diatribe or a reasoned paper that points out the many flaws in the pACE trial? Here are the link to the complaint, is it a diatribe (defined by Webster as "a bitter and abusive speech or piece of writing") or is it a reasoned response to bad science? let people decide:

http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

Richrd Horton deliberately tried to pour scorn on anyone who dismisses the PACE trial.
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I suspect this is what made me think it was Hooper.
 
At the time I assumed it was Malcolm Hooper's document he was referring to as a "diatribe". Prof. Hooper was invited to prepare a document to be published but after he had submitted it he heard no more and instead what was published (I think by the journalist who spoke to him) was the "breaking news" of the fear felt by researchers because of death threats and so on and so on.

I haven't seen it mentioned, but doesn't the PACE trial break the Declaration of Helsinki in another way? Patients are meant to give informed consent, yet they were assured that the treatments were completely safe and that any pain or increase of symptoms were not a sign of disease. In a trial where one of the aims of the trial was TO SEE IF THE TREATMENTS CAUSED ANY HARMS. They say that their results show the treatments are safe but they were TESTING for that so how could they tell the patients they would not be harmed.

Just think if it was a drug they assured trial participants was safe at the same time they were collecting data to see if it hurt any of them?
 
Keela Too said:
And perhaps they are not such skilled manipulators of ME attitudes as they first supposed??
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I'm fairly sure I am under the impression that psychology, and propaganda, work best when applied to large groups of people, it's not so hot when applied to individuals.

So the odd few percent not falling for their manipulations is expected, even desirable, as it gives them ammunition and proof that there are deviants, and thus that their chosen profession is both valid and necessary..
 
However at a certain critical point general attitudes can flip, and the old paradigm gets seen for what it was.

I think we are close to reaching that point for ME. Soon the entrenched psychosocial view will be seen as dated, and almost medieval in its approach.
 
Sasha said:
Just revisiting the transcript of the Australian Broadcast Corporation show in which Richard Horton was talking about PACE and patients' reactions to it. Among a lot of other stuff that broke my irony-meter, he said this:

Norman Swan: What next?

Richard Horton: Well what we’re doing right now is waiting for the formal response from the authors to this 43 page attack on their integrity and the study and the request for a retraction. We plan to publish their response to that attack, we will invite the critics to submit versions of their criticisms for publication and we will try as best as we can to conduct a reasonable scientific debate about this paper. This will be a test I think of this particular section of the patient community to engage in a proper scientific discussion.​

...which make my irony-meter catch fire and melt.

@Lucibee, any idea what happened to that plan?
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As an aside, when David Tuller was here in Australia, we reached out to Norman Swan and the producers of his show, to see if they’d be interested interviewing David, as a follow up to this interview with Horton. Unsurprisingly, we got a very clear “no”.
 
Simone said:
As an aside, when David Tuller was here in Australia, we reached out to Norman Swan and the producers of his show, to see if they’d be interested interviewing David, as a follow up to this interview with Horton. Unsurprisingly, we got a very clear “no”.
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Thanks for trying, anyway.

This whole PACE thing seems to be about people in positions of influence screwing up, doing enormous harm to patients and refusing to set things right or apologise. o_O
 
Simone said:
Yep, we weren’t surprised that Swan didn’t want to engage. It’s quite messy having to wipe all of that egg off one’s face! ;)
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Until that broadcast, I used to have a fair bit of respect for Norman Swan since he comes across as so reasonable. But a medical journalist, whose career is all about bringing important medical stories to the public, not being interested in investigating this is just mindblowing.
 
In terms of accusing people of being militants...If you disagree, you're obviously a militant and potentially dangerous. When I went to see Professor Crawley speak at Exeter last November, she told me that either she had consulted the police about me or had been told to consult the police about me or whatever--the audio isn't completely clear. But the notion that my critiques warranted police intervention was clearly insane.
 
Mithriel said:
I haven't seen it mentioned, but doesn't the PACE trial break the Declaration of Helsinki in another way? Patients are meant to give informed consent, yet they were assured that the treatments were completely safe and that any pain or increase of symptoms were not a sign of disease.
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That's very true, of course. But one big reason they don't have informed consent, per Helsinki, is that they did not disclose their links with insurance companies and government agencies. Helsinki's version in effect at the time mandated disclosure to prospective subjects of "any possible conflicts of interest" and "institutional affiliations." They did not do this in their consent forms or leaflets about the trial. It's also important to remember that their protocol specifically promised to adhere to the Declaration of Helsinki. So in not doing so, they were not only violating a human rights document but their own protocol, which was the basis on which they received funding.
 
dave30th said:
That's very true, of course. But one big reason they don't have informed consent, per Helsinki, is that they did not disclose their links with insurance companies and government agencies. Helsinki's version in effect at the time mandated disclosure to prospective subjects of "any possible conflicts of interest" and "institutional affiliations." They did not do this in their consent forms or leaflets about the trial. It's also important to remember that their protocol specifically promised to adhere to the Declaration of Helsinki. So in not doing so, they were not only violating a human rights document but their own protocol, which was the basis on which they received funding.
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Is there no institution who should give a monkey's that they've violated the Declaration of Helsinki? What's the point of having such a thing if no one polices breaches?

It just amazes me how many institutions (Lancet, Psychological Medicine, MRC, ethics committees, GMC, QMUL, KCL, Oxford University, etc. etc.) should have protected patients against what happened in PACE and how every single one of them have not just utterly failed but have turned their backs.
 
BruceInOz said:
Until that broadcast, I used to have a fair bit of respect for Norman Swan since he comes across as so reasonable. But a medical journalist, whose career is all about bringing important medical stories to the public, not being interested in investigating this is just mindblowing.
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this should be in his tweeter :). If we call on plp in private we don't gain much.
 
Sasha said:
It just amazes me how many institutions (Lancet, Psychological Medicine, MRC, ethics committees, GMC, QMUL, KCL, Oxford University, etc. etc.) should have protected patients against what happened in PACE and how every single one of them have not just utterly failed but have turned their backs.
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It really is astounding that for decades virtually every institution and process of governance in the UK with any significant responsibility for this issue has persistently and seriously failed, and behaved in such an appallingly incompetent and callous manner.

That cannot be pure coincidence. That is systemic and deliberate. :grumpy:
 
Sean said:
It really is astounding that for decades virtually every institution and process of governance in the UK with any significant responsibility for this issue has persistently and seriously failed, and behaved in such an appallingly incompetent and callous manner.
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If they don't serve the interests of patients and science then their existence is pointless.

And apparently, their existence is pointless.
 
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