The Concept of ME/CFS, 2024, Edwards

I discovered 20 + years ago that by lying completely flat/ head level with heart for 10 minutes that this would enable me to be vertical , sat down for next 4-6 hrs. However I was always cautious about being flat for too long……I didn’t want to cause more damage than benefit by under use . I simply found it a very useful as an energy top up means. Then having used remedial yoga a lot/ basically horizontal yoga, then I discovered Restorative Yoga by Judith Lassiter. This introduced me to the benefits of getting my head below my heart for short periods of time.
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Peter Rowe in his new book about orthostatic intolerance says, 'Another time-honored recommendation is to elevate the head of the bed slightly by 10-15 degrees so that the head is higher than the feet [ref: MacLean and Alen, 'Orthostatic hypotension and orthostatic tachycardia'; Ten Harkel, vnlieshout, and Wieling, 'Treatment of orthostatic hypotension.']...This position helps the body retain blood volume at night. Some patients with severe ME/CFS can experience worse blood flow in this position, so it may not be tolerated by all.'

So flat or a bit tilted up or down!

 

Sky's the limit, though!

Mutters something about playing fields...

 

Really? That sounds like BS to me. The only effect I have encountered is that you slide down the bed and end up in an uncomfortable scrunch against the bottom bed-end.

 

Just noting this seems to be still the case.

 

This is fair and deserves its time in the spotlight, but it's important to take into account that for all their terrible, dishonorable, behavior and lies, pretty much any random group of MDs would have likely concluded the same. This isn't a failure of small group of people. It's a whole profession failure distributed across thousands of systems and institutions, all of which failed just as hard.

This is what we are seeing with Long Covid. Maybe it's a consequence of their work, but I doubt it. Most researchers and clinicians approaching this do not have in mind any of this history, most have never heard of ME/CFS. They are looking at the phenomenon, apply their medical training, and basically conclude the same things all on their own. After all, those conclusions literally require no skills, no training, no evidence of any kind. It's a simple popular logical fallacy, the most common error in medicine: if I don't know of it, it can't exist, all tests are normal.

So for sure they have done disastrous harm, but it was mostly through their very effective campaigns of vilification than their mediocre research. I don't think it would have mattered much either way in the end. Medicine has long been primed to swallow this nonsense and there isn't much that could have pulled things to any other outcome.

Not that it absolves them of any blame, but it's ultimately mostly irrelevant. The vast majority of clinicians and therapists who first saw LC patients, have been working with those, some for years now, having seen hundreds or even thousands, all failed the same way, for the same reasons. They can't see that what they're doing is useless, that there is no credible evidence for what they are doing, and if it hadn't been exercise rehabilitation with CBT, it probably have been some other set of useless rituals.

The greatest tragedy here is perhaps that they have been cruel jerks for no reason at all. They could have achieved the exact same outcomes without it. They did this because we pushed back. Perhaps the other lesson to take from this. How medicine is essentially incapable of self-correcting. We sure are seeing it happen in broad daylight and on a bigger stage than ever.

 

I agree. I don't even think it is a failure of the medical profession. It is a reflection of human beings' inability to understand how little they know of other people's experiences and how ready they are to jump to conclusions about cause and effect. The BPS view is popular prejudice given fancy names.

But also, there is an important sense in which Nigel has missed the historical point I was making.
My colleague asked me what justified a separate concept of ME. His question was asked on the basis of having learnt, like myself, that 'ME', as originally defined, had turned out not to be a real disease but a misplaced speculation. There never was an encephalitis, or even an encephalopathy, nor yet a 'complex multi system disease'. And those words in the NICE guideline show that part of that confusion is still very much there, particularly amongst charities and advocacy groups. We still have people researching 'neuroinflammation' when there was never a reason to think any was there.

Nigel mentions the harm done by the BPS approach but my article is deliberately not about one group of doctors sniping at another. More than anything we want that to stop. And who knows what harm may have come from perpetuating the myth of 'ME' as a mysterious encephalitic disease. The reality is that everyone has failed to solve the problem or even get near to understanding it, physicians, psychiatrists and public alike. Blaming each other doesn't seem to me the way forward.

 

The language issue really needs tackling by charities and advocates.

Descriptive phrases like 'complex multi-system disease' are important because we need to talk how ME/CFS affects people—sometimes in shorthand—but they do need challenging for accuracy and effectiveness. This phrase is about multi-system symptoms, not disease, and the word complex isn't needed as it's already implied. Multi-system itself isn't especially effective, because it doesn't communicate much about ME/CFS; most long term illnesses seem to affect more than one system.

 

There is another comment on Jonathan's Qeios article, by a professor of sleep medicine.

https://www.qeios.com/read/WMQGBY

(It's hidden as a comment on Nigel Speight's comment)

Now changed to Rheumatology.

 

Oh dear:

 

Ugh, 'Oh dear' is right. I do wish people who don't know anything about a subject would restrain themselves from making authoritative-sounding statements about it.

 

"Oh dear" is understating things. Just looking at the overall slapdash formulation: no attention to precision or formatting. This appears intended to be a review of Jo's paper, but has been posted as a comment on Nigel Speight's review. This is supposedly a professor. Well, as has been said before, there are professors and there are professors.

It's literally in the title: "ME/CFS".

"SLE stands for systemic lupus erythematosus. However, in most patients there has been no evidence for wolves."

Even the NIH found "In cerebrospinal fluid, the PI-ME/CFS group had statistically significant decreased levels of DOPA, DOPAC, and DHPG"

How might the word "me" act as a nocebo? Or do you mean "myalgic encephalomyelities [sic]"?

Chronic means long-term, of long duration. It does not mean forever.

That would be news to those who have cured TB, HIV, Hep C, RA, cystic fibrosis etc. And I guess my oncology colleagues can just give up completely curing children with stage 4 cancers.

The evidence disagrees with you.

 

I think that commenter is actually trying to agree with the paper and expand on itin a roundabout way and with English as an additional language.

 

Thanks for the heads up. I am currently in an Ecolodge in Peru with WIFI driven by a watermill. I hope to make some responses in the not too distant future but not tonight!

 

Markku Partinen was an author of this ME/CFS paper:
https://www.s4me.info/threads/a-qua...cfs-2023-keurulainen-et-al.34562/#post-487155

 

I will respond to both Nigel and Partinen when I get home. I am not sure the Partinen is worth the effort but I might as well point out that he has missed the point of my article (or several of the points).

 

A new Qeios peer review has appeared. (Kenneth Friedman also co-authored
Access to Medical Care for Individuals with [ME/CFS]...; Turning a Corner in ME/CFS Research and Our Evolving Understanding of ME/CFS - and has an ME-pedia page)

Link | PDF

 

And two further Qeios peer reviews, both short and generally positive:

1/ Link | PDF
2/ Link | PDF