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

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

 

No idea. Maybe someone should ask him? I tried, but I think my query was too vague or broad (or something).

 

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:

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?

 

The success of propaganda depends on the psychology behind it, so will be affected by how skilled the propagandists are at psychological techniques ... .

 

And perhaps they are not such skilled manipulators of ME attitudes as they first supposed??

 

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.

 

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”.

 

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.

 

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!

 

And swans' eggs are very large.

 

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.

 

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.

 

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.

 

this should be in his tweeter . If we call on plp in private we don't gain much.

 

If they don't serve the interests of patients and science then their existence is pointless.

And apparently, their existence is pointless.