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

Paywalled at https://link.springer.com/article/10.1007/s11673-018-9866-5

 

I can't see the paper but possibly they are asking the wrong question?

Maybe they should be asking "Are ME/CFS impatient organisations "militant", and if so why would this be?".

 

How about:

"Has the medical establishment been falsely accusing ME patients as 'militant'?"

 

Full paper from sci hub here

 

The labelling of patients as militant is just part of a pattern of negative stereotyping of patients.

 

From one conversation with a medical doctor (hospital appointment after one of the articles claiming death threats) it's further split into "good militant" patients and "bad militant" patients.

People with HIV/AIDS and their supporters were OK as their situation was "more serious" and "they were going to die" as an explanation for why PWME should not be able to adopt the same tactic.

So HIV/AIDS supporters were fine to demonstrate, throw blood, invade offices etc where-as if PWME did this we would be demonised. The reason being that they had a serious disease with no cure and we don't have a serious disease and anyway there are treatments like CBT and GE for us.

 

If we're militant, we have every reason to be so. Compared to the Aids movement, we are gentle - maybe too gentle.

Well, nice. Now it's the good vs. bad stereotyping.
But don't forget we're not living in the 80s anymore. Today, if we acted like the Aids movement, we'd probably be in trouble.

I find it interesting this topic is thematized in a publication.

 

Good point and the toxic message around CFS in the uk (I don't think you have this image problem In the states, obviously the SMC part engineered this) is there is little pathology in the way of barrier to Improvement, effective treatment exists, extremists have an irrational dislike of anything connected to psychology so they u reasonably "attack" anyone trying to help them if they don't like the connection , these militants are threatening & harming researchers and hurting their fellow patients by putting off researchers.

 

I agree you here @ukxmrv as the "the medical establishment" (wish Geraghty had used "UK medical establishment") has taken on the dual position of viewing the patient as militant while minimizing the seriousness of the illness. It leads to a loop, where any action of patient advocacy feeds back into the belief that our illness is borne of irrational beliefs and hence our behavior just proves that we are irrational and seeking validation through medical support...instead of the truth, which is we are quite ill, medically neglected, and seeking medical support on par with our level of illness. It's a nasty cycle. I don't think it is as bad in the US simply because we don't have the level of institutionalized medicine that exists in the UK. Distrust and prejudice are more spotty depending on the organization or personal beliefs of the doctor. We have pockets of open-minded doctors here and many doctors who are just ignorant because they have no information...and some carry-overs from the 80's who are fully committed to a psychiatric model. However, there was a recent post on Twitter by Dr. Reinhold which complicates the UK narrative, wherein she expressed strong top-down pressures within the NHS on doctors who are open to the biological model of ME/CFS. The treatment of Dr. Myhill is certainly evidence of this.

 

Another example:

 

Ironically those who accuse us of militancy are in many ways simply reflecting their own strategy rather than ours.

 

Straight propaganda technique.

What is disturbing about it is not that it gets used, but that it is so successful for so long.

 

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?

 

Earlier in the transcript, it says:

Richard Horton: Well we have been deluged with dozens of letters raising serious objections to the conduct and interpretation of the study. Most recently a 43 page diatribe calling for the paper to be retracted based upon the fact that it is entirely invalid and unethical.

Norman Swan: What’s the nature of the criticism?

Richard Horton: Pretty much every aspect of the study you can think of has been impugned. First of all the population is biased, it’s dealing with a predominately young, healthy population whereas the chronic fatigue syndrome, ME, in a population our critics claim contains a substantial number of people who are bed ridden. Given the fact that treatments are being offered which do regard chronic fatigue as reversible then that somehow undermines the view that ME is a neurological condition. There is this feeling that ME being an organic disease in the views of some patients that means that any view that contradicts that and offers a treatment against that particular perspective must therefore by definition be unethical. So this study is we are told breaching the Declaration of Helsinki.​

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.

The study did, of course, breach the Declaration of Helsinki, but by failing to disclose the authors' conflicts of interests to patients before the trial, such that they didn't give properly informed consent.

 

I think because it has since been reworked into a report. Formatting alone will do that.