Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

Can we get this printed out in big bold letters & made into a sticker for every non BPS committee member to stick on the top of their notes!

LOL am only half joking!

 

I assume one of those references to "medical" should be "mental"?

 

Yes

 

To me there is a key point that gets forever overlooked and conflated. Most pwME do not primarily object to the mental health diagnosis because of the stigma, but for a much more valid reason - it is a misdiagnosis pure and simple, with all the risks and concerns that accompany any misdiagnosis, whatever the medical condition. Moreover that misdiagnosis is systemic, spawned as it is from deeply flawed evidence. To me it is not about mental versus physical, but about persistent misdiagnosis. pwME would be just as hacked off, and rightly so, if ME were forever misdiagnosed as an ingrowing toenail. It's just that the misdiagnosis in this case is one of having a mental health issue.

 

The proof of that are the ME sufferers who also have mental health issues and have no problem accepting that, talking about it openly with no sense of stigma at all, and no objection to their therapy or medication.

 

Exactly.

 

[my bold]

If all that that implied were supported by good scientific evidence, then that would be fine. But of course it's not, yet still they smile/smirk.

 

Discrediting opposition by painting it as irrational is a classic political strategy. It is only used by people who know they cannot win on the strength of their arguments, but rather choose to shift the debate over trivialities.

That it is used at all is a travesty. It just shows that the "controversy" is entirely over politics and ideology, not science. It is also a very big tell that it is framed from their personal perspective, that it is an "attack" on their profession, when we actually don't care or think about them beyond what they are forcing on us.

Had it been podiatrists, chiropractors or ob/gyns who had made such extraordinary claims the response would have been the same: wrong on substance. This framing of being about the stigma of mental health is made entirely from their personal point-of-view and has no bearing on the actual substance.

There are plenty of other quacks making all sorts of different claims about how to treat this disease and many others. There is no shortage of people claiming they have an easy cure for all cancers and infectious diseases. We do not pay attention to those because they have not captured the policy-making process. Institutions are supposed to filter out quacks making extraordinary claims without any evidence, not let them run the show as they have here.

That the psychs make it all about them and tiny little world, their career and pet theory, says it all. They cannot seem to factor reality outside of their wants, especially not the actual needs of patients. This is a common feature of ideologues of all stripes. It's also the biggest red flag in the damn world that they're full of crap.

 

I agree, but to me this isn't solely about credibility in the eyes of others. I think its possible that other forms of psychotherapy might actually help some ME patients, for example in dealing with a chronic debilitating illness that makes you lose friends, hobbies and everything else, or coming to grips with the opportunities missed, the fact that you're no longer the person you used to be or hoped to become etc. Would be great if ME patients had access to a psychotherapist who validates their illness and the psychological difficulties that come with it. A biomedical treatment is probably years away, so this kind of psychological support might be one of the few things the medical profession can do to help (a subgroup of) ME patients. So I don't want a fight against psychiatry or mental care, I want them to help us.

 

Most pubs have at least one barkeep that could do pretty much the same. Or clergy person.

Patients would have to make it to the saloon or church, though - then again, the same holds true with traveling to a talk therapist.

 

I will seriously put up a good fight to name this disease Catch-22 disease. It will probably fail, but damn is it the most appropriate one.

I'm all up for good psychiatrists, that's likely most of them. But definitely not for those that make extraordinary claims without any ordinary evidence and recklessly promote an ideology with complete disregard for the suffering it inflicts.

It's disappointing that good psychiatrists don't see it as enough of a problem to do something. It will enormously hurt the field's reputation, and rightfully so. Maybe that's the kick in the shin that it needs to finally learn lessons from repeating the same mistakes over and over again.

 

It strikes me that the last dozen or so posts since and including Jonathon's sum up a lot of sensible, coherent rebuttal to the BPS position. Perhaps someone should distill the major points into a S4ME position paper that is put somewhere prominent so the ideas don't get lost. It would be mostly a matter of copy and paste I think, provided the original authors agree.

 

Im quite happy to say CBT and SSRIs have helped me immensely to cope with my OCD. I’m also happy to say it’s done bugger all for my ME/CFS.