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

Andy

Andy

Retired committee member
Abstract

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.
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Paywalled at https://link.springer.com/article/10.1007/s11673-018-9866-5
 
Abstract looks excellent to me. I love the way they turn it around and accuse the medical authorities of being the ones doing harm, and talk of 'epistemic injustice'.
We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS.
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:):):):):):)
 
strategist said:
The labelling of patients as militant is just part of a pattern of negative stereotyping of patients.
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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.

ukxmrv said:
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.
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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.
 
ukxmrv said:
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.
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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.
 
ukxmrv said:
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.
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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.
 
My daughters GP was seriously threatened by a specialist
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"seriously threatened"? Who are the militants?

ukxmrv said:
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.
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If people with HIV/AIDS have the energy to run around throwing blood, invading offices etc it's understandable because they were going to die.
If people with ME have the energy to raise their voice, let alone stand up and walk around, they "can't be that ill then", and we don't have the excuse of being desperate because we're going to die, because we're not. Staying ill for decades and only living half a life if we're lucky doesn't have the same ring to it as "going to die", especially when there are people insisting that we can get better.
 
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?
 
Trish said:
Do you know what he is referring to here?
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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.
 
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