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Contesting the psychiatric framing of ME/CFS

Hilary

Senior Member
Messages
190
Location
UK
After the most basic blood tests failed to show anything, my GP suggested I find a private physician (a private GP) to make sure the diagnosis was correct... well, that was optimistic. I found said physician via recommendation. He made me do things such as touch my toes................. looked at my test results, then said he could find nothing wrong - hardly surprising on the basis of his efforts. I raised the possibility of ME to which his response was (I paraphrase I think as it's a long time ago) 'don't even mention that in here - there's no such thing - you've just been a bit depressed and have had too much responsibility' ...... hahahahaha MORON :bang-head:

- what about the fact that I felt gruesomely ill, had IBS, constant headaches, non-existent sleep, barely any cognitive function etc etc. I'd been practising law part time and had two small children, plus we had moved house a couple of times so a bit of modest stress but too much responsibility?? I never felt that and knew he was talking utter rubbish but I was so taken aback and unwell at the time, I don't recall even responding. It had all started the previous year with several infections culminating in infection in my lung - 6 rounds of antibiotics and I never felt well again and went disastrously downhill for 2 years. But the know-it-all doctor immediately put it all down to faulty psychology.......

How stupid and how arrogant.
 

Invisible Woman

Senior Member
Messages
1,267
One doctor I went to see asked me lots of questions about my career. He hmmmm'd and nodded and went on saying that it sounded very stressful. "I'm like sure, if you didn't have the training and experience to do it. But I do so I find it fulfilling", I explained.

Then he goes on about some people not coping with stress. I pointed out he couldn't have it both ways. I was very successful in my job & if I couldn't handle the job he described as being stressful how come I was good at it?

He then started trying to get my husband on side.....

Finally I started with something along the lines of "Now you listen here, sunshine....". He interrupted with an aside to my husband: "oh good she's feisty. I like that. That will improve her chances of recovery." :rolleyes:

My husband didn't know whether to laugh, hide his head on his hands, be prepared to grab me in case I punched the guy....

Edited to add:. Clearly a quack - never even asked about the biscuits!
 

Tally

Senior Member
Messages
367
I guess it's a common experience all through Europe

I'm Croatian, and I got almost all relevant medical test available in Croatia.

Doctors were rude and even cruel with their words sometimes, but I've got to give it to them they were thorough.

Then again, my parents and I did develop a very complex strategy after one particularly abusive visit I had with a specialist. Since then I would refuse to enter the office without both of them accompanying me, even though I'm an adult.

My mom is an emotional person so she would be crying, my dad would be glaring (he's a big gentle nervous softy, but he looks scary on the outside), and I would be calmly rattling off science at the doctor and burrying them under research papers. That seemed to get them to take me seriously. Not that it helped much, I still ended up quite severe and bedridden.

Sorry for continuing off-topic but I though our strategy might help someone else get taken seriously too.
 
Messages
15,786
Worth reading the whole text (though there are quite a few typos). I don't agree with everything that is said, and I think they miss one or two basic points regarding ME/CFS reactions to psychiatrization.

But their main message is about the de-legitimizing of patients who are accused of having any mental health problem. This results in both ME/CFS and mental illness patients being inappropriately deprived of treatment choices, even when their capacity to make treatment choices is unarguably fully intact.

The authors are focused on why the two groups don't band together. One good reason is that (they claim) mental health advocates want more actual psycho-social interventions and less bio-medical interference. Though it sounds like the mental health groups also pretty strongly oppose CBT as not addressing the actual social problems which are causing distress to patients. They also claim that ME patients deliberately distance themselves from mental health issues, which I think fails to reflect the subtlety of the actual situation.

The main point that they miss (perhaps deliberately, to stay within a certain focus) is that ME patients argue against psychologization based on the evidence, and not due to any sort of prejudice. It doesn't make much sense for us to argue about how we should be able to decide our own treatments despite an accused mental incapacity, when there's a fuckload of research showing we actually have a biomedical disease. In fact, merely getting that far in the argument practically concedes the point the ME is a mental health issue.

I do think the argument against the denial of treatment choices in mental health patients with the capacity to make those decisions is a very good one, as well as the admonishment that all patients should be heard regarding what they want as patients. But while I would fully support mental health patients having their treatment rights and preferences recognized, it's simply not an ME/CFS fight. And frankly, we have enough on our plates without trying to defend every other group facing a similar injustice or two, especially when our general goals don't really align.
 
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Dolphin

Senior Member
Messages
17,567
Therefore, this paper attempts to understand why the psychiatric framing of ME/ CFS has been so heavily contested by ME patients and activists. We argue that resistance to the psychiatrisation of ME primarily concerns what might be called epistemic injustices which are inherent in legally enforced psychiatric systems. In other words, once an individual receives a mental health diagnosis, they potentially lose legitimacy, status and rights. As such, it is perhaps not surprising that this is actively resisted by ME/CFS activists and patients. In this context, patient resistance can be understood as contesting the process of psychiatrisation itself and the attendant loss of power, knowledge claims, and rights which are implicit in psychiatric framing.
 

Dolphin

Senior Member
Messages
17,567
Whilst there are important differences between the psychiatrisation and psychologisation of health conditions, the terms are used interchangeably in this context because, in relation to ME/CFS, psychatrisation has primarily involved psychologisation. That is, the psychiatric view of ME/CFS has tended to focus on patients’ faulty thoughts and beliefs, rather than faulty biology or biochemistry.
 

Dolphin

Senior Member
Messages
17,567
In addition, a level of certainty about the psychological basis to ME/CFS is often inserted into these debates, which does not appear to be justified by the existing evidence. For example, in an editorial about CFS/ME, ironically advising doctors to ‘listen to the story of their patients’, the author states:

Certainly
, changing one’s dysfunction illness beliefs, attributions and behaviours into more adaptive ones, and progressively building up one’s physical condition, are necessary steps towards acquiring self-efficacy (Houdenhove 2002, p. 497 our emphasis).


This quote highlights an implicitly held belief that ME/CFS patients have negative behaviours and beliefs which either cause or reinforce their symptoms. Arguably, such framing expressly militates against ‘listening’ to patients as they are, by definition, unreliable. This positions patients in a ‘double bind’ as to be heard they need to campaign vociferously, yet the very ‘stridency’ of their campaigning can be seen as evidence of their mental instability. As a result, an explicit schism has developed between patient advocacy groups and medical authorities over how ME/CFS should be framed (Blease et al. 2016; Hossenbaccus and White 2013; Jason 2012).
 

Dolphin

Senior Member
Messages
17,567
Some commentators have noted that less research funding is spent on conditions where patients are seen as responsible for, or contributing to, their illness, as can be seen in the underfunding of research into lung disease and liver cancer (Johnson 2015; Dimmock et al. 2016). When an illness is framed as psychological, it is people’s reactions, emotions and behaviour, rather than any underlying illness, which become the focus of scrutiny, and it is a short step from this to the assumption that people are ‘responsible’ for their illness and recovery.
 

Dolphin

Senior Member
Messages
17,567
In addition, critics argue that assuming ME/CFS is a psychological problem has resulted in poorly designed research studies which may have included people without the condition and excluded those severely affected by the condition from the studies (Jason et al. 1997; Jason 2012; ME Association 2015; Tuller 2015). ME activists argue that this situation has:

diminished the legitimacy and belief in the severity of the illness among physicians and allowed the psychiatrists to appropriate the condition to their own realm of influence…and put pressure on governments to apply psychiatric labels in order to reduce work claims for illness compensations (Millen 2001, p. 8).
 

Dolphin

Senior Member
Messages
17,567
It is important to note that the discipline of psychiatry has considerably more power and influence than patients’ organisations and individual sufferers, so these debates are not conducted on a level-playing field. In the meantime, people who experience contested illnesses, like ME/CFS, face a particular struggle for legitimation or, what has been referred to as, ‘epistemic justice’.
 
Messages
2,391
Location
UK
Recently Keith Geraghty tweeted regarding a Moss-Morris paper, and in comparison PACE is tame. The authors simply made up the conclusions they wanted. Who needs p-hacking, re-defining recovery in nonsensical ways, outcome switching and the like when you can just ignore your data and write whatever you want?
Highlights what I said a while back somewhere else in PR, that "published results" of clinical trials, are not really that at all - they are simply an interpretation of the results of the trial, and there may well be other interpretations. If the underlying anonymised raw data is made open access for all, then other interpretations can be arrived at. The original authors might well also be more highly motivated to apply good science principles to their trial and findings in the first place.