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

Thanks for the warm welcome @Roy S. The Humpty Dumpty is hysterical. It's a disaster because they purposefully developed language that's "etiologically ambiguous" - so they've done all they can to make it hard to talk about the real issues.

Oh yes! Big progress! The IOM report is monumental, whether you agree with its basis or not, even though we have work to do in getting US doctors to see things that way. The IOM could not be more authoritative in medicine. When they publish a report their conclusions directly influence care across the globe. So the IOM says unequivocally that psychogenic diagnosis for ME has been a mistake. That changes everything. The NIH and the CDC now align with this view, so the BPS camp is out of the picture for ME in the US. (Well, ideally. There's a lot of work to do, but it's underway.)

I'm often confused as to why advocates don't make a bigger deal about this change. There's a lot of interesting discussion about the "SEID" name and the right criteria - all of it really valuable - but I think people often do overlook the main event. In our lifetimes, as a direct result of ME advocacy, arguably the most powerful medical authority in the world now says the patients have been right all along. This is a win. This is THE win. Now we just have to sort out what it implies for other countries. That's what my article does.

Incidentally, the very big win for ME in the US has powerful implications for long term Lyme, fibromyalgia, EDS, mito disorders, "central sensitivity syndromes" - and for all the patients with diagnosis of "medically unexplained symptoms". It is a professional admission of error at the highest level, and if they could be wrong about the classic case of "all in your head", they can be wrong about the rest.

 

So is Psych care not medical care when its is truly evidence based and it works?

Pseudoscience occurs across all fields of medicine doesnt it? Granted psychiatry is particularly susceptible to it. When pseudoscience happens outside of psychiatry does it get a pass on the basis that its "medical care outside of psychiatry"?

Just for the record in the UK ME has been officially recognised as a neurological illness for decades with agencies such as the WHO ICD, The Department of Work and Pensions the Department of Health etc.

This has been clarified numerous times in writing upon request from such agencies yet we still have the nonsense position of GET and CBT being the recommended treatments using flawed and bogus studies wherby even such data contradicts the recommendation for the treatments.

 

Technically "medicine" and "psychiatry" are different divisions of the hospital that do different kinds of things. They're different chapters in the medical textbooks. They have different research circuits. When people are correctly put onto the psych care track, evidence-based research in psych will lead to good psych care. When people are put onto the psych care track in error, that same research will not be helpful.

Yeah, pseudoscience happens everywhere. In my mind the best example of it is the slight of hand that has "supported" mental health management of ME for so long.

Yes, there are medical classifications for ME all over the place. Those have not altered medical textbooks, practice guidelines or the research track in psych. The only way to make that change is to do what the US is doing - put ME alongside diabetes, cancer, kidney disease in med textbooks. Put all of the research into the medical stream and take it out of the psychiatry stream. Base guidelines on medical research not psychiatric research.

 

You're right that in these sentences I'm painting things with a very broad brush, @Hutan. So pleased to hear you did initially receive a medical diagnosis - though wow, you and your children now. Really sorry to hear that your family faces this challenge.

And you're right that there have always been doctors who see ME as medical. Patients have been able to find these, so that statement was definitely a generalization. There have been substantial dissenters to the psych approach. That quote from the ABN is actually new to me, and it's powerful. Thanks for that.

Jonathan is right to say there's always been debate, as Wessely is. The thing is that psych management has been the general professional consensus for a long while, and the general public consensus, so those who did not agree were dissenters from the status quo. In 2015 the dissent suddenly came from one of the most powerful health authorities in the world, the IOM. Wessely et al like to pretend that this is just more of the same old debate but it's not. The IOM is far more influential, and has a far more powerful base of professional trust than anyone in psychosomatic medicine. With the IOM, NIH and CDC on board you can't call it dissent anymore. Now it's a professional dispute at the highest levels, and it's one that Wessely and company cannot win in the end of the day.

So yes, there are so many important complications left out of my "before and after" statement. I do my best to write simply sometimes so that those who need me to keep it simple can get the big picture of what I'm saying. Broadly speaking, though, I do think it's accurate.

 

@Diane O'Leary I'm pleased that you're highlighting the importance of the IOM report. I believe it wasn't well received because patients have come to expect the worst from authorities, and some did not like the illness definition it also proposed as they preferred the ICC. It does seem to have changed the game in the US and elsewhere. I think it gave the head of the NIH the political backing to finally do something. I think we patients should push for regular updates to the IOM report (as the authors themselves had proposed).

 

If we wait for identification of the pathology in ME/CFS before taking it seriously then we might have to wait another 30 years. We need funding and a real effort to make progress and figure out what is happening. Cart before the horse and so on.

 

There's an excellent doctor in my village who does a sideline in swinging pendulums and whatever that thing is called which measures electrical conductivity which the doctor says is diagnosing allergies. German doctors often dabble in a bit of quackery on the side, offer it to their patients and charge them privately for it. So at least here it's not true to say that the purveyors of quackery are working outside medicine, they are often doctors in the health system (Kassenarzt) using / abusing the position of trust and authority their medical education gives them to make a fast buck on the side. My dentist has an acupuncture chart on his wall. I went to a physiotherapist for back issues and she insisted on performing her "own version" of reflexology on my toes, whilst telling me about her weekend and her love life. They're all bloody well at it over here, it seems that being a doctor with a white coat isn't enough, they feel the need to project some extra level of wisdom, and the more eastern or ancient the better. The patients lap it up by the way. I've come to the conclusion that doctors are just people with a medical education, and are just as susceptible to quackery and nonsense as anyone else, but with the added danger that they're in a position to market it, make some money, and enjoy the secondary benefits of being considered / considering themselves an open-minded wise healer.

 

And by the way, the only difference between the above scenario and the UK is that in the UK quackery is being carried out on an industrial scale with government approval and the purveyors are given knighthoods. All "inside medicine". Whether they belong there or not is another matter, but it's where they're operating now.

 

Admittedly, I said that with tunnel thinking. Not thinking past how my own experience in the health system in Ontario/BC works.

 

welcome to the forum, @Diane O'Leary, and thanks for
professionally engaging rationally with the topic of m.e.
we need more and more professionals in many disciplines to
do that.

this growth in sufficiently thoughtful and
assiduous professionals needs to go visibly exponential.
early adopters like you [and many others who are on this
forum] are needed to get the early majority on board [in the /crossing
the chasm/ sense].

===

i agree with much that you say. and greatly appreciate that you are saying it to professionals in a newish field.

it is going to require vigilance to make sure they get facts
and context right.

the following shows that context has to be right:

some excellent members of this forum and our community
started out with similar intent. you are in good
company.

but it does not create progress,

you are not talking to truth seekers.

it was a hard won lesson.

===

one goal of reaching the early majority is modal recognition
that there is a world-sized problem.

most world-size problems, like genocide or war,
are recognized.

but what populations of sick people are facing is not
recognized. this includes the m.e. crisis, but is fully
generalizable to misopathy and your research interests.

===

but what steps are needed?

for one, the complexity of the topic needs to be distilled
into thoughts that can remain in people's heads. consider
early hiv/aids: most people know it was persecutory. they
don't need the details.

if everybody has to have virtual doctorates in m.e.-ology
(and misopathy) like most people on this forum have, progress
will not occur. thus, distillation.

BUT distillation takes effort. there is active opposition
that is obscuring, misdirecting, and so on.

===

it's natural to step back and make
clear ontological categories and then reason about them.

after all, you are swimming in a philosophical sewer filled
with maelstroms. at least you can plan a route. right?

===

i say "wrong".

a new maelstrom will be formed at any time, in any place, to keep you swimming.

WE ARE NOT DEALING WITH A SCIENTIFIC OR
PHILOSOPHICAL QUEST THAT RESPECTS AGE OF ENLIGHTENMENT
VALUES.

the big picture is not everybody seeking truth, human
rights, progress, or health. the big picture is not a few
people being mistaken.

the applicable metaphor is that sewer. it is uncle remus's
tar baby -- you are as we speak punching it. it is lem's
story about the bureaucratic spaceship. it is kafka's /the
trial/. it is whack-a-mole. it is lucy and the football.

the big picture is: putting new maelstroms in that sewer so
that you keep swimming.

the belief that progress can be made by attempting to
convince perpetrators using logic is what is mistaken.

===

this is a world-sized problem. no pwme is safe in a
hospital. no pwme is safe anywhere.

pwme have faced:

1) inhumane acts
2) that are part of a widespread or systematic attack (all
levels of misopathy including but not limited to
promotion of harmful medical policy, explicit calls for
science not to be done, and harm to individuals)
3) directed against a civilian population (viz. pwme and
related diseases + people like justina pelletier)
4) with knowledge of the attack (they could not have been
unaware of it)
5) that have inflicted great suffering or serious injury
6) to the body or to the mental or physical health.

[the wording is not mine. it is from a un law.]

there is danger in making nicer distinctions
than are being used in practice in the attack. it's needed
-- i'm not arguing against diane's goals of sharing
knowledge with her peers -- but there is danger.

context can make debates moot.

lack of context can mislead.

===

the disease can attack practically every system in the body.
people die. people are bedridden for many years.

that's context that mootifies debates. but it does not get
mentioned, so the perception is couch potato.

did casey fero die from being a couch potato?

your interlocutors present the attack like a legitimate
debate, solved in their direction, concerning tv watchers. are you sure they will play ball with you? or cricket, whatever.

===

diane, please read the piece handed to a reporter by the uk
smc. notice, for example, the quote of an unknown advocate
AND THE ASSERTION THAT THE PERSON WAS ON A SEX OFFENDER
LIST. (from memory.) now look at 1930s propaganda.

that piece was planned by the players that you seek to have
a reasoned dialogue with.

again, it's a common mistake. your colleagues (except for
the postmodernists and postwhateverists) probably seem like
truth seekers. ethicists probably seem like they care about
justice. and that other tradition that has been forgotten
about called human rights.

===

what i am saying to you is that that is not the world that you have entered.

you are not in kansas anymore.

i look forward to more work from you correcting misopathic
policy. i hope you stay on the forum. you seem like a good
egg.

 

This

 

I agree with you @Samuel. I think that calling something unethical "unethical" is the right step in the right direction. But we need much more as you're pointing out.

 

Beat me to it!

 

In my experience psychosocial quackery is more dangerous than biomedical quackery. Ideally we would have neither. Psychosocial quackery has made me 100% bedbound.

 

So... in the UK we have Eminence based science claiming CBY and GET are safe and effective while those opposing that view were dismissed as just by patients (obviously clueless, probably terrorists) some doctors (too afraid of patients to disagree) and now some professional "activists" from piddling little universities.

But since 2015 when the IOM, with all its stature and the CD with their authority stated that ME should be treated as a medical disease, we have eminence to match the BPSers. They are still ignoring that and doing their usual lying about who opposes them but if that is the playing field they want to use we have our own team to back us up.

I can barely imagine a world where I would be treated the same way for having ME as someone with diabetes or MS. I suspect the fact we claim we are not treated properly is put down to people with ME just being whingers.

 

I really appreciate the kind words, Samuel. More than that I appreciate the very moving writing. I've felt the frustration you're expressing here, and the hopelessness, but I've never been able to express it.

I don't blame you or anyone else for feeling like there's no hope of convincing these people. You'd be crazy to expect them to reason carefully and cautiously after what they've put you through. I lived in "Kansas" with a serious, untreated brain disease for fifteen years, so I'm with you. Why do I have some hope about making change now that I'm able to work?

Well I realized that nobody knows this is happening. People in bioethics have no idea that there's a massive group of very seriously ill patients who cannot get medical care. They don't know you're ridiculed and dismissed and denied basic rights. If they did know, they'd step in and things would change. Bioethics has immense power in medicine.

I also realized that nobody is minding the store. The field of psychosomatic medicine directs management of 52% of outpatients in the UK - because 52% are diagnosed with "medically unexplained symptoms". The public doesn't know this, and no one outside of clinical medicine knows it (including bioethics). The peer review process for this stuff is just the same small camp of professionals approving each others' work. No one has ever looked in from the outside to see if psychosomatic medicine is actually based on good science. It's not. It's atrocious.

So I think this is happening not because all of medicine is rotten, but because psychosomatic medicine is incredibly isolated and secretive. I'm actually writing a book right now for regular non-academic readers that's intended to break the silence.

 

Oh yeah. Saying you're not being treated properly is actually a marker for psychosomatic symptoms. It's not a diagnostic criterion, but its an informal marker. Nobody stops to notice that patients who are seriously ill also say these kinds of things.

I know it's hard to imagine a world where ME is managed like every other disease, but that's actually what the new guidelines in the US demand. It's happening. The BPS camp cannot ignore the IOM. They're trying, but the IOM is just more powerful, so the dominos are starting to fall all around the world.

Can I just say that the Rotman Institute is not a "piddling university", and neither is Georgetown, where I was for the last two years? In any case, it's not the institution that matters, it's the level of the journals that publish the writing - and nobody could say that the journal Bioethics or the American Journal of Bioethics are piddling.

This is not about me. I genuinely do not care about getting the credit, I care about fixing this problem. It does mean something that these good university institutes have supported the kind of work I do. It does mean something that good ethics journals are publishing articles saying we've got a serious problem here. This has not happened before. It's not happening because of me - it's happening because there is a change in the air. I just happen to be working on it while the change is occurring.

 

If you think the situation with adults is tragic - the fate of children is scandalous. There is even less protection, equally poor research - and now we have the rise of ACEs.