Contesting the psychiatric framing of ME/CFS

[Tom Kindlon]

https://link.springer.com/article/10.1057/s41285-017-0047-0

Social Theory & Health

pp 1–15

Contesting the psychiatric framing of ME/CFS

• Helen Spandler
• Meg Allen

Abstract

ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate.

This paper examines why framing the condition as a psychiatric issue—what we refer to as ‘psychiatrisation’—has been so heavily contested by patients and activists.

We argue that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law.

We highlight the potentially harmful consequences of psychiatrisation which can lead to people’s experiential knowledge being discredited.

This stems, in part, from a psychiatric-specific form of ‘epistemic injustice’ which can result in unhelpful, unwanted and forced treatments.

This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant field of contention, for both ME/CFS patients and mental health service users/survivors.

Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation.

Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.

Keywords
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Epistemic injustice Mental health activism Psychologisation Psychiatrisation Psychiatric field of contention

https://twitter.com/i/web/status/899277113525764096

 

[Jonathan Edwards]

I wonder if they miss the point that the reason people are resisting a psychiatric label is that there is no good reason to apply one and the supporting research is flawed? It sounds as if they are saying the patients are entitled to complain because they are not just stigmatised, they are losing money. They are entitled for that reason but it is a distraction from the fact that they are also rightly complaining because the science is wrong.

 

[A.B.]

Understanding that the science is wrong is large task.

There is not yet an awareness that psychiatric research on ME/CFS is built on flawed foundations that compromise the validity of the conclusions. We're slowly getting to a point where PACE is viewed as flawed. The next step requires understanding that PACE is the rule, not the exception.

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?

 

[me/cfs 27931]

If the science is wrong, then the medical treatment is wrong.

I really don't care how my disease is framed, as long as I get appropriate medical treatment.

 

[Manganus]

I'm reading the paper (am far from finished), but so far I'm struck by the seemingly sincere attempt to understand and present the issue, including patients' perspectives.

http://sci-hub.cc/saveme/b9fb/10.1057@s41285-017-0047-0.pdf

But the study's premises are very much tilted towards sociology and psychology. One can't expect wonders.

For example, the practice of pacing, which was favoured by many ME/CFS patients, has been actively discredited by the medical establishment and contested by a controversial ‘evidence base’ (ME Association 2015; Goudsmit et al. 2012). In a context where there is little medical help available to sufferers, the dismissal of an approach which many patients claim helps them manage their condition has been much criticised by patient groups. This example illustrates the way that the credibility of patients own knowledge is disbelieved or ‘unfairly deflated’ (Blease et al. 2016, p. 5).

Individuals who suffer epistemic injustice are ultimately dehumanised, and this has significant negative consequences for patient care (Carel and Kidd 2014). It is notable that people with CFS/ME report not being believed as one of the most distressing aspects of their illness experience (Åsbring and Närvänen 2002).

In Mental Health Law, and in common lay understandings, mental (in)capacity and mental disorder are usually conflated. This often relates to the notion of ‘unsound mind’. In other words, when people are deemed mentally ill, they are already deemed to lack mental capacity. This is often related to, and intertwined with, notions of irrationality and untrustworthiness (Szmukler 2004).

This issue is so important to our argument that it requires further elaboration.

For example, when someone is diagnosed as ‘psychotic’ they are, in effect, told that they see things that are not there, believe things that are not true, or hear things that others cannot. In other words, they are seen as experiencing ‘hallucinations’ or ‘delusions’.

Similarly, if someone is diagnosed as clinically depressed, their depression is viewed as an unreasonable reaction to their social circumstances, unlike grief which may be seen as a reasonable response to a significant loss.

Transferring this logic to CFS/ME, psychiatrisation means sufferers are effectively told that they are not ‘really’ suffering from a physical illness, are ‘deluded’ and believe things that are not true.

This is understandably distressing to many ME/CFS patients, even if the medical professional is well intentioned. This may be why ME activists often claim that psychiatry frames them as ‘hysterical and malingering’, even though is rarely stated explicitly by the psychiatric profession.

 

[Invisible Woman]

,"This may be why ME activists often claim that psychiatry frames them as ‘hysterical and malingering’, even though is rarely stated explicitly by the psychiatric profession."

Really? Perhaps the authors of this paper should try talking to some actual ME patients then because many of us have been told exactly that by docs, some psychiatric & some otherwise.

 

[Manganus]

,"This may be why ME activists often claim that psychiatry frames them as ‘hysterical and malingering’, even though is rarely stated explicitly by the psychiatric profession."

Really? Perhaps the authors of this paper should try talking to some actual ME patients then because many of us have been told exactly that by docs, some psychiatric & some otherwise.

I think the paragraph should be understood to refer to what doctors say publicly about patients and their condition rather than what they say to patients or in the hospital's mess hall (or, what do you call it? the staff restaurant? the canteen?).

 

[Dolphin]

https://www.facebook.com/mecfslegalglobal/posts/503295033340139?hc_location=ufi

ME CFS Legal Resource - Global
1 hr ·
This article examines the framing of ME/CFS (then slips into ME?) by psychiatry. This is not an empirically research based paper. It has some positives but fails to consider the source of the approach by psychiatry and their motivations for making this a medically contestable condition: (a) the motivation to protect insurance companies, the DWP and their medical health costs; and (b) the conflicts of interest of those who perpetuated the psychiatric approach to ME/CFS (ie ties to insurers, health bodies and DWP).

Two papers would have assisted their understanding here:

1. J. Dumit, 'Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses.' Soc Sci Med. 2006 Feb;62(3):577-90. Epub 2005 Aug 8 (http://moscow.sci-hub.cc/209d470d3be3b5143fe5…/dumit2006.pdf) and

2. M. Beaulieu, 'Stigma and legitimation in chronic fatigue syndrome : the role of social location', PhD, Department of Sociology, McGill University, 1997 (http://digitool.library.mcgill.ca/webclient/StreamGate…)

 

[Tally]

ME/CFS patients go through very extensive medical workup before receiving diagnosis. I have a very high stack of medical papers from HIV test, to brain MRI, to opinions of two different psychiatrists and psychological testing.

Why is no one looking into my reasoning when I say I am HIV negative and I don't have a brain tumor, but when I say I don't have a psychiatric illness suddenly my motives need to be questioned? I have equally valid medical papers that say I don't have any of those 3 (and many others).

Research hasn't uncovered any viruses so when I say that with high probability ME/CFS isn't a viral illness I am being reasonable. Same thing goes for psychiatric research into ME/CFS but when I say it's not psychiatric condition my motives are questioned.

Double standards much?

 

[Invisible Woman]

I think the paragraph should be understood to refer to what doctors say publicly about patients and their condition rather than what they say to patients or in the hospital's mess hall (or, what do you call it? the staff restaurant? the canteen?).

I understand what you mean but....

How we are treated as patients seems to be more in line with what is said directly to us (without witnesses) or what is written in reports to our GPs, employers etc..

Those informal chats in the canteens matter because this is what is truly believed.

For example: if a colleague was not,say sexist, to my face in public but used sexism to undermine me behind my back with my co-workers and employer that is still sexism. It's just covert. And arguably worse.

 

[IreneF]

The strange thing about MUS conditions is that you can be diagnosed as having a psychological disorder without being positively diagnosed by a psychiatrist or psychologist. It's like a pulmonologist saying, "It's not your lungs so it must be your heart," without you ever seeing a cardiologist.

 

[alex3619]

If the science is wrong, then the medical treatment is wrong.

I really don't care how my disease is framed, as long as I get appropriate medical treatment.

My take is that nearly all patients are with you on these points. Indeed I was thinking exactly the same thing earlier today. We want treatments that work. I wonder what percentage of long term patients have tried CBT or GET? I have. They do not work in any way similar to what is claimed for very many of us, and the science is atrocious.

There is the issue that psychiatry has kept falling into this hole since Charcot. Isn't it time they embraced twentieth century scientific standards? I am just worried that by then it might be the twenty second century, they are moving so slowly. I don't want to see an end to psychiatry, I am not antipsychiatry, I do however want to see scientific psychiatry, and not a pretense at scientific psychiatry from far too many. Is good science, and effective treatment, too much to ask for?

 

[alex3619]

Double standards much?

Is that a rhetorical question?

 

[adreno]

"We argue that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law."

I didn't need to read any further than that. It's clear that the authors are still viewing ME in a psychiatric/psychological framework. According to them, ME patients reject psychiatrization, not only because of the stigma of mental illness, but also because of how mental illness patients are being treated in society. So it really becomes a critique of societal treatment of mental illness, using ME as an example.

 

[Valentijn]

I think the paragraph should be understood to refer to what doctors say publicly about patients and their condition rather than what they say to patients or in the hospital's mess hall (or, what do you call it? the staff restaurant? the canteen?).

Most of the quack CFS researchers have said exactly those things in their published research. And they've said it even more blatantly in conferences, letters to the DWP, etc.

 

[Sean]

Double standards much?

Is that a rhetorical question?

Do you need to ask?

 

[trishrhymes]

ME/CFS patients go through very extensive medical workup before receiving diagnosis. I have a very high stack of medical papers from HIV test, to brain MRI, to opinions of two different psychiatrists and psychological testing.

Extensive testing? I wish.

I was diagnosed by a GP 27 years ago on the basis that I hadn't recovered as she expected after an infection and was still feeling very unwell 6 months later with symptoms that fitted the diagnosis of ME. Apart from the most basic standard blood tests that was it.

27 years on and I still haven't been referred to any consultant by my GP's, only to a completely ignorant GP at an 'ME clinic'. They see no reason to do more, I assume because they think it's all in my head.

I think this is a very common experience in the UK.

I have never been tested for POTS, EDS, MCAS, cardiac or circulatory problems, brain scans, Lyme disease, viruses or any of the other more sophisticated tests.

I'm just grateful I was never sent to a psychiatrist or forced to do GET.

 

[Hilary]

Extensive testing? I wish.

I was diagnosed by a GP 27 years ago on the basis that I hadn't recovered as she expected after an infection and was still feeling very unwell 6 months later with symptoms that fitted the diagnosis of ME. Apart from the most basic standard blood tests that was it.

27 years on and I still haven't been referred to any consultant by my GP's, only to a completely ignorant GP at an 'ME clinic'. They see no reason to do more, I assume because they think it's all in my head.

I think this is a very common experience in the UK.

I have never been tested for POTS, EDS, MCAS, cardiac or circulatory problems, brain scans, Lyme disease, viruses or any of the other more sophisticated tests.

I'm just grateful I was never sent to a psychiatrist or forced to do GET.

Same as.

 

[slysaint]

Extensive testing? I wish.

I was diagnosed by a GP 27 years ago on the basis that I hadn't recovered as she expected after an infection and was still feeling very unwell 6 months later with symptoms that fitted the diagnosis of ME. Apart from the most basic standard blood tests that was it.

27 years on and I still haven't been referred to any consultant by my GP's, only to a completely ignorant GP at an 'ME clinic'. They see no reason to do more, I assume because they think it's all in my head.

I think this is a very common experience in the UK.

I have never been tested for POTS, EDS, MCAS, cardiac or circulatory problems, brain scans, Lyme disease, viruses or any of the other more sophisticated tests.

I'm just grateful I was never sent to a psychiatrist or forced to do GET.

Ditto. My GP who diagnosed me was happy to request tests but, with the exception of a couple of blood tests that he sneaked through by lying on the form, the rest were turned down by the NHS as being inappropriate/unhelpful for ME.

eta: that was about 14 years ago

 

[Manganus]

Extensive testing? I wish.

I was diagnosed by a GP 27 years ago on the basis that I hadn't recovered as she expected after an infection and was still feeling very unwell 6 months later with symptoms that fitted the diagnosis of ME. Apart from the most basic standard blood tests that was it.

Though I did not get any diagnosis in 1996, when there actually were a few lab tests done, my experience is quite similar.
Some of the lab results were "strange". But since they didn't confirm any diagnosis, they were "of no use" and forgotten.
Physicians have had very little to offer, only advises that made me worse.
The few exceptions were due to pure luck and thanks to other diagnoses.

They see no reason to do more, I assume because they think it's all in my head.

I think this is a very common experience in the UK.

I have never been tested for POTS, EDS, MCAS, cardiac or circulatory problems, brain scans, Lyme disease, viruses or any of the other more sophisticated tests.

I guess it's a common experience all through Europe.

However, I belong to them who have had long-lasting clinical depressions. I can not say that the depression diagnoses were wrong. The "only" error was that no-one could think of other causes for depression than psychological (like sorrow and grief) - not even when I reported that (a certain kind of) painkillers were the only medicine that had effects on these depressions, despite me being prescribed quite high doses of anti-depressants.

Hence I see this article as a (small) step in the right direction.