Contesting the psychiatric framing of ME/CFS, 2017, Spandler and Allen

I've not read this—and likely won't—but, based on the abstract, I don't accept this is why patients are resistant to psychiatrisation of ME/CFS. It's because it doesn't make any sense, it doesn't fit with data or patient experience, and because this mistake has been made several times in the past with other organic illnesses.

 

"but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law."

Have they spoken to patients with ME to see how they have been treated?!

 

Yes, from the abstract this looks like the usual misunderstanding from sympathetic outsiders, who don't seem to have actually spoken to any ME patients.

 

As evidenced by the talk of “post exertional fatigue”.

 

This is missing the point. If you are a patient with depression, anxiety or autism, you will find that psychiatrists tend to listen to you and your experiences. Sometimes what you say might be discredited because that's what doctors do in general, and because if you are mentally ill there are legitimate reasons to doubt what you say. But, in a very broad and general sense, psychiatrists do listen.

Yes, psych patients are treated like crap by society but it's probably the same thing for young neuro patients. I mean, many people don't even know the difference. Young persons with debilitating brain illnesses are just stigmatized in general.

The real problem is that psychiatry inherently denies and discredits, to the absolute full extent, any physical symptom presented by the patient. So when a patient with a physical illness like ME gets referred to a psych, anything you say completely gets denied and discredited over and over. If that doesn't happen, they just refer you to a non psych doctor and say they can't do anything for you. So how are we supposed to "ally" with these people? We get forcefully shoved into their care but they deny us completely.

What exactly stopped psychiatrists from getting 20000 ME patients together and doing a GWAS like they did for schizophrenia? Nothing stops them. THEY reject US, it's not US rejecting THEM. People are once again completely missing the point.

 

It took me years of living with this illness and a lot of time reading and watching events in the ME world to even get close to being able to articulate what's wrong with the psychiatric framing of ME. I hope the authors spoke to a a large number of patients and all the charities in writing this paper because just speaking to a small group of patients is probably not going to give an in depth understanding of the situation.

It's definitely not just 'because it's psychological/because stigma etc.', it's about the specific model the the specific treatments offered. I don't think the question of why ME patients reject the psychiatric framing of the illness can be answered without a detailed analysis of the efficacy of the treatments associated with this model.

 

I like this a lot better than medically unexplained. At least it's honest.

Although they're very wrong about why, this has nothing to do with mental health stigmatization, it's denial. Plain old denial of other people's experience, a tale as old as our species.

 

We tried their treatments - which one of us has not hoped that walking a bit further every day would be the cure? I want to be better precisely because I want to be able to walk as far as I used to do.

But it did NOT WORK and made me WORSE.

I would reject a pill if it had the same effect and happily have psychological treatment if it helped.

The anger about psychology is that they say it is our fault if we do not get better obviously because their treatment is so good it can't fail. The arrogance of such thinking is what we fight against not psychiatry.

 

I think this is potentially covered in this bit, at least:

"Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings."

In other words, we say GET and CBT don't work and they keep pushing us to try them anyway.

All in all, there are some interesting ideas scattered about the place, but they obviously haven't met (m)any people with ME. Most of it is therefore useless and misses the mark.

But there is a valid argument in there about power dynamics and psychologisation. Note that they go on to talk about legally enforced psychiatrisation (i.e., sectioning), and how that is disempowering.

I have a relative who was sectioned multiple times. It's quite clear to me that he's autistic and has ADHD, but they outright refused to test him for either because, "We don't do that here."

When you're a hammer, everything is a nail. They see bipolar, borderline personality disorder, schizophrenia, etc, but they never even consider ADHD or autism.

In our case, they didn't even think to consider these things when they struggled to diagnose him or get him on meds that worked.

When so many people who are sectioned also seem to have learning disabilities or autism, you start to wonder how many of the psychiatric diagnoses people have received are just the result of narcissists projecting their own narratives onto people they don't and can't understand!

 

This is an important impact to note which compounds and makes unrectifuable the error in attribution ie traps people meaning no one saying it’s wrong has a voice.

so is worth underlining - but needs to be done so alongside noting that ‘and/when it’s the medics that are deluded not the patients’ in the attribution/belief it is false beliefs or whatnot being inaccurate and garmful

 

That’s the thing. The psych framing presupposes that the patient hasn’t tried the blindingly obvious solution first which is to exercise your way out of it. They are saying we are that stupid and insane that we just took to bed and never tried to take any action to get out of it.

 

You don’t even have to compare to other conditions for people that have fluctuation and relapsing and remitting ME. Over the thirty years of my ME I have had periods of quite dramatic improvement: indeed after the first four years or so, I believed myself recovered for several years up to a sudden relapse associated with a dose of flue, though subsequent recoveries have been less and subsequent relapses worse often involving new symptoms.

It is only by ignoring the actual symptoms individuals display, that the psychologisers can ignore the poverty of their non explanations.

(If my acquired food intolerances are psychosomatic how is it that my knowledge of what is contained in the food has no impact on my symptoms? For example my gluten intolerance is triggered whether I know there is gluten present or not. It was only after their falafels triggered my gluten response that I discovered a particular Turkish restaurant cheated on the recipe by using wheat flour rather than gram flour, and it was only after reacting badly to couscous that I found out it was not a distinct grain as I had foolishly thought, but rather wheat processed in a specific way.)

 

A similar thing has happened with mental illness with the anti psychiatry movement and the mental illness is a myth including serious mental illness like schizophrenia and bipolar and I’ve never understood this or why there isn’t more on the topic
https://theconversation.com/is-schizophrenia-a-real-illness-31818
CBT for psychosis
CBT for turning water into wine

 

I've read the paper and it was ok. I liked the part about mental health law trumping people's human rights when they get sectioned.

Should be PESE or LTSE - Long Term Symptom Exacerbation.

To be fair there are people who treat psychiatric illness as if it's not real.

 

A belief that has resisted the onslaught of Long Covid where most patients have reported doing exactly that, and more. The main problem with psychiatry and psychosomatic medicine is that they don't listen. At all. Never. They will tell a patient to exercise. The patient will respond that they did, and it made them worse, and they'll simply repeat again to just exercise. This can cycle back and forth, with many other patients, and they simply never budge. The tyrannical application of a failed model is the only worse thing than a failed model. And they do both, to infinity.

At its root it's also extremely disrespectful. If anything, if they at least had some respect for us, as human beings, worthy of being treated as they would expect to be treated themselves, almost none of this would happen. But that requires accountability, and the system instead reinforces the tyrannical misapplication of failed models.

This is simply immoral, in addition to being highly unprofessional. It's hard to fail worse than this, and the only way they could actually pull this off, is what they've done with Long Covid, missing it out all over again and again and again, millions of times over, while their failure is on full display thanks to social media.

Which, IMO, explains their obsession with TikTok and social media as a problem, not because it causes mental illness, but because it exposes the failure of their system. Not that they're aware of what they're doing here, though. This is the problem with beliefs: the are impervious to conflicting evidence. And this is antiscience.

They're still holding on to the belief that it was severe cases that did this. Despite massive overwhelming evidence that in the vast majority of cases it isn't. Because they don't listen, don't pay attention to evidence, and couldn't do real science if their lives depended on it.