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

Here’s a thought.

Although mental illnesses are diagnosed by descriptors and the assertions of psychiatric assessments, many medical issues have clear biomakers.

Now I’m thinking that IF there was no confusion between “mental” and “medical” patients, then testing a sample of patients under mental health care for various medical biomarkers should not show an elevated incidence of newly found medical problems?

Yet I suspect if this sampling were done, a good proportion of patients in mental health care would show up with some medical condition for which they are not being treated.

Granted, doing the same for the population at large, would also bring up some newly diagnosed medical issues, but I wonder if the area of mental health care would have a higher incidence?

I imagine there may be some who would prefer not to address this as a possible issue!

 

There's quite a bit of research to show that does happen and its called diagnostic overshadowing (although the term originally was coined for the same thing happening to people with learning disabilities).

 

Very interesting @fivetowns thank you.

 

Thanks for that, Sean. There's a strange code of silence around this area of medicine even publicly, even in bioethics. Trying to break that taboo but it's tough!

 

Because I have trouble following the thread of things I just want to confirm that by this area of medicine you mean medically unexplained symptoms?

And the taboo you mentioned, do you have some thoughts on why this exists?

 

We should ask why so many patients don't become better and even got bedriegen after doing that pace trial therapy...
Did they not have ME? Oh wait they had SEID perhaps?
SEID is one symptom you can classificate under ME, cfs, cancer, also heavy diabetes patients, ALS, even a person witch had many surgery and so became chronical ill ... ME has so many biological findings but still they deel to je ignored a lot.
What about patient blaming? U just didnt try hard enough ? What?
This is a complete Mess and it has to stop. Children are falling out of school and I myself got ME age 16. It is not normal that I was put in a mentall hospital foe 4 times and I still are not better. Trust me, I tried it all!! My immumesystem is still bad. My auto response system idem dito ... Aarggghh
Thx to all who speaks out.

 

Agreed, and patients with unexplained symptoms are treated worse than second class citizens.

The law is worded really stupidly, if a GP does what most other GPs would do in that situation and follows the guidelines then they get away it. So if prescribing leeches was the norm in medicine they would get away with it.

 

IMHO the suppression of intellect regarding ME is partly due to the legacy of the insurance treatments of mental illness in the USA where it cost insurers a lot less to contend ME was a mental illness. As always its a case of "follow the money" a phrase made famous in the film "All the Presidents Men" about the Washington Post investigation into Watergate.

Fortunately the Mental Health Parity Act (MHPA) 1996 and the The Mental Health Parity and Addiction Equity Act (MHPAEA) 2008 changed the financial incentives operating on insurers and I believe this generated a sea change in attitudes which has lead to todays situation where serious research is being done at last (which was not the case in the preceding decades).
https://en.wikipedia.org/wiki/Mental_Health_Parity_Act
https://www.cms.gov/cciio/programs-and-initiatives/other-insurance-protections/mhpaea_factsheet.html

"Follow the money" is the vernacular for an analysis of benefit as favoured by Noam Chomsky in his dissection of the way 20th century media houses served powerful vested interests and were biased in their coverage.

If you consider the beneficiaries of the obfuscation of ME it is obvious that the insurers had natural allies in certain psychologists who lack scruples, whose predecessors have been passive aggressively gaming the academic system for centuries, since the days of Mesmer and long before, using the influence of "eminence" to discourage others who would expose their bluff.

e.g. McEvedy I regret to say was a post grad at Oxford Uni. I am bound to say that one bad apple dont spoil the whole bunch, I studied zoology in the zoology half of the zoology & psychology building at Oxford and I have a rough idea how he got away with the kind of deception he did.

Though invoking the spirit of the allied victors at the end of WWII who had overcome tribalism of feudal and racial arrogance to defeat the evils of Nazism ... but for the grace of whatever you call good, there go we all. Meaning the seeds of it are in us all and it is how we are educated which determines whether good seeds or bad flourish in our minds, to a great extent.

What I am saying is, if I had been tutored by his tutors it could have been me. Thankfully I was tutored to a more rigorous standard of empirical science and warned to beware of human cognitive bias especially with anthropomorphising animals and was trained to be critical of handwaving bunkum. It was a philosophical revelation at the time. More than this, in the middle of my studies the moving finger of fate put me in a position where I need to know the truth about ME and plausible handwavey theories just wont do.

Unfortunately much psychology is handwaving bunkum and no more scientific than mystical theories of the cosmos created by shamanic invention which you might read in anthropological literature on the many different cultural myths of origin. So it is easy to see how the BPS school believes things completely shaped and biased by what they are trying to achieve for themselves to the point that they are completely out of touch with reality and to my mind are essentially the brainwashed victims of a cult of antiscience comparable with scientology, or the "Hermetic Order of the Golden Dawn".

http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf

If you consult Dr Hyde's little red book, try searching for "bottle" and read that paragraph on p16 and what follows. That is what we are dealing with.

Our task is to find out what is going on in ME and we are obstructed by a bunch of badly educated if not deliberately groomed BPS cultist trolls who need help deprogramming. Frankly I dont want to even try to get into their heads, pity and compassion are always appropriate for ignorance but IMHO we do best to ignore them completely and focus on the science because that will give us our answers and destroy their power because their power only prospers by feeding on ignorance and uncertainty.

2c

 

Thank you for this expression. "Diagnostic Overshadowing" Very useful.

It's precisely what the NHS seeks to do with their catergory of, "Medically Unexplained Physical Symptoms".

 

Sorry for the long delay @Snowdrop. Busy week! Yes, I mean "medically unexplained symptoms". Roughly speaking, 50% of outpatients' symptoms fall into that category (or at least this the figure you generally find in practice guidelines). The health system in the UK actually says 52%, so the majority of the time when people go to a doctor outside the hospital, the doctor concludes that the problem is MUS.

MUS care is not managed medical side of the health service, but by the mental health side - so nobody is asking "when should patients with unexplained symptoms continue to have medical management and when should they get mental health support instead?" The NHS sees all 52% as mental health patients. In the UK, every patient with unexplained symptoms is automatically a mental health patient.

It's very strange that the public does not know this! People think that "all in your head" is an unusual thing - nobody imagines that it's as common as all medical diagnoses combined.

So what's happened to ME patients is happening to many other groups as well - they're just not as organized. Fibromyalgia, Ehlers-Danlos syndrome, mitochondrial disorders, autonomic disorders, chronic pain, long term Lyme.... It also happens to people with common diseases. 51% of people with autoimmune disease say they've been wrongly denied medical care in the past based on some kind of psychosomatic diagnosis (like MUS). Studies show it's a serious problem for rare disease patients too.

This problem is very widespread, and very, very quiet!

 

You are so right about the money @boolybooly. Patients with "MUS" are the most expensive group for insurers and for every national health system, and mental health management has been proven to dramatically cut costs. This worries me when it comes to the new NICE guideline. Is NICE working with the budgetary changes that will be necessary for medical management of ME? NICE is usually transparent about its financial calculations, but we don't hear a peep about the money when it comes to the ME guideline.

 

MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

https://forums.phoenixrising.me/thr...ary-care-whats-happening-across-the-uk.48710/

Jan 11, 2017

(39 pages)

 

@Diane O'Leary

Thank you for your responding comments. With such a high percentage of patient complaints falling into the MUS category it really is a huge invisible issue that needs addressing. Having your input means there is now another dimension to how to go forward in addressing this. I hope others follow your lead.

 

Uh, just scrolling by and I found a slide from Trudie Chalder talking about the "boom and bust" cycle in persistent physical symptoms. So it's really all the same to them and the concept was made up for generic MUS rather than ME. Interesting. Idiotic, still interesting.

And on that same slide it points to "seeking an external 'cure'" as a perpetuating factor. Because of course never has any genuinely sick person ever, ever, EVER in the history of ever, been hoping to find an "external 'cure'". Never, ever, ever.

Here's a thought: turn this area of research on its head and try to explain why so many medical professionals believe such bizarre things that have been falsified over and over again. Now those are genuine unhelpful beliefs about illness.


Holy crap the whole thread. It's even more bonkers than I thought and I already thought it was insane. The only silver lining to this is that people are going so all in on this, ham-wild, the whole nine yards, let's-burn-the-boat-so-there's-no-turning-back that once it's all over and failure is recognized, the entire mind-over-disease thing will be so thoroughly discredited once and for all. It's all magical thinking, literally all of it.

It will take years to get to that point, but the commitment to the mistake is so complete and devotional that it will be impossible to argue that there is anything left to try, that every possible mistake will have been committed to the maximum possible level and with every possible variation.

Meanwhile it creates immense suffering and death but, hey, I guess that's a sacrifice people are willing to make. Complete coincidence that those unfortunate enough to go from the safe side to the sacrificial side all seem to recognize the gravity of the mistake, I'm sure.

 

This is really funny, @rvallee! I mean, of course it's absolutely not funny that so many of us have endured what we have based on this thinking. It's an atrocity - and I mean that literally. But I work with these ideas all day, so I don't often step back to say "holy crap!" It's the right reaction.

There are ways of seeing it that are not as bonkers as it seems. I think they do it because they're really confused about the whole mind-body thing. I mean, everyday doctors genuinely believe that if they try really hard to get clear about whether symptoms are psychiatric or medical then they're being "mind-body dualists". So they think they're being really smart when they stop trying to figure out what's wrong with you. Twisted, but I think that's why it's happening.

 

Hi @Diane O'Leary , while not directly linked to your paper, I thought you might be interested in reading the details in this thread, https://www.s4me.info/threads/bmj-peer-review-of-wilshire-et-al-re-analysis-of-pace-paper.4737/, where one of the authors of PACE trial reanalysis paper reveals the details of how the BMJ handled the peer review of, and decision not to print, their paper. Not sure if it falls under the definition of ethics that you work with but it certainly seems to my layman's view that they were acting unethically in how they dealt with it.

 

You don't know how useful that is, Andy! The paper of mine that just came out in Bioethics spent a whole year under review at "Journal of Medical Ethics" - which is the ethics arm of the BMJ. All 3 reviewers praised it to the skies. One said it was so important that it needed to be public access (though he did also suggest the journal should hire an attorney just in case, because the paper would upset the powers that be).

Right at that time the journal got a new editor who suddenly rejected the paper, insisting that I failed to address reviewers' concerns. I requested my standard access to reviewers' comments, so I could verify for myself that they'd actually said that after they recommended the paper. He refused. I received a very short note, rudely addressed to my first name, informing me that "the paper won't be published in this journal".

I sent the paper to the journal Bioethics, along with reviewers' comments from BMJ. They published the paper directly, without another review process, because they were satisfied that BMJ had done a thorough review that led to unanimous recommendation to publish.

There is something very seriously wrong with the editorial process at BMJ.

 

Tagging @Jonathan Edwards to make sure you see the above.