Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

Exactly.

And my reading of this Study from a lay persons point of view is that some of the language used by the writers to discuss their findings obfuscates the issue by not clearly drawing out that their findings as reported completely validates Hoopoes and countless other ME patients description of their ‘effort intolerance’ and ‘behavioural response’ to the disconnect between what they often feel they can do, but find their body physiologically disagrees with them and they suffer physical symptoms as a result.

The reported findings in this study, to me, validate entirely the ‘Pacing’ response employed by patients and those medics who for years have understood the disconnect between what patients want to/try to do and what their bodies actually allow them to do.

The Researchers own stated outcome of this study is that it provides yet more proof of the biological basis of ME by identifying a range of biological anomalies not present in healthy controls and that it is unequivocally wrong to say or think that ME patients can think or change their behaviour in any way to cure themselves. In this they validate the 2021 NICE recommendation that the BPS approach and treatments of GET and CBT based on the idea that Patients can do more than they think they can, is an inappropriate response to this illness. This biological research in fact demonstrates the biology of why the reported outcomes of BPS behavioural trials in ME actually show their treatments are universally ineffective and potentially harmful to ME patients. The lack of ‘effort’ is ‘not motivational’ but ‘physiological’ as stated in this Studies biological findings.

These Researchers acknowledge they themselves are no nearer to explaining the why or what of ME other than to say it is Biological Science and much more of it that is required to find the answers.

I am pleased after being at this same place since my first involvement with ME over 40 years ago, that at last the Press is largely, finally reporting that a Study unequivocally shows ME to be biological and not a result of false illness belief on the patients part. I will be kind in my judgement of the obfuscation apparent in some of the researchers analysis and press comments, by putting it down to them getting used to a new paradigm.

I bow to and am grateful for the scientific knowledge shared by the members of this forum and thank you for your past efforts to advance the biological research on ME. I am sure that you will continue to comment on and push for good quality ME research as we move forward.

 

Yes, and some of those decisions are autonomic, bypassing conscious or even subconscious thought. We might want to pick up a 40 kg item, but that autonomic processing loop is not sending the signals needed to contract the muscles enough for that. The control system for a front-end loader, for example, limits how much hydraulic pressure can be applied to the cylinders, to prevent damage if you try to lift something too heavy. A flake or rust in the sensor might mean that the relief valve opens when trying to lift 100 kg rather than the expected 1000 kg capacity. I'd love to see a psychologist trying to convince a loader to lift more. "Just try harder and you'll succeed..."

 

No, my cognitively-induced PEM had a delay of < 1 hr, and was gone by the next day. The symptoms were indistinguishable from my 24-hr delayed physically-induced PEM. Other people reports shorter or longer delays for physically-induced PEM, so "next day" is too limiting.

 

Depression is a physical illness, some can't leave their beds or eat for 3-4 days.

Feeling depressed and depression are not the same.

 

The difference is that, fundamentally, people with depression do not want to leave the bed. They have no POTS, PEM, and If they are forced to go out and exercise they will feel better almost immediately, and in the following days as well.

Doctors prefer to prescribe SSRIs because motivating someone 24/7 to do things is just not feasible (CBT is already a huge spend and you only do it 1h every week) but the fundamental thing is that people with depression can do things, even if they won't. There is no scenario where a depressed patient ends up being worse off because they were forced (or convinced, hence the CBT) to do things.

The doesn't mean depression is not organic, of course it is, but it's simply a very different kind of illness compared to ME.

If the researchers don't understand this crucial difference and think ME is like depression how will they ever find the cause of the illness?

The only reason they didn't recommend CBT in this paper is the political pressure. If you think unwillingness to put in effort is a core feature of the illness, CBT/psych drugs is the obvious treatment. I don't really see how it would be different from depression. Depression mouse models are quite literally this, mice that don't want to move or swim as much.

 

Oddly, I see a lot of people talking about being able to push through, knowing there will be pushback, but in my experience, and I've seen it plenty of times, there is another limit beyond which physical movement becomes impossible, the leaded body feeling that is completely unique to this. To me it's not comparable to being weak with the flu, it's that poisoned feeling that feels like everything is rusty, as if the nerves are incapable of producing anymore activity.

At this point there is no amount of forgetting, or not knowing, about the wall. There is only the wall. It's the point that causes extended deterioration, past which there is often a permanent lowering of functioning. It feels like all energy being drained out of the body, it just ceases being able to exert anymore.

So really there are two thresholds: one we can push through with consequences, and one where no amount of threat, coercion or willpower can overcome. It's a near paralytic state at first. I'm quite sure it's the CNS driving most of it, but it could be as a feedback response from exhausted muscles, although that wouldn't account for instances where it happens without physical exertion, such as sensory or cognitive overload.

 

I cannot decide whether this study is a Fool or a Tool.

 

Of course. It was obvious from the start. Many of us were pointing out the huge red flags, like the 1-day CPET, the gruelling protocol which would prevent moderate and severe participants from taking part, the background of key investigators like Walitt (FM is psychosomatic) and Hallett (major FND guy). All of this was debated at length 7-8 years ago on the previous forum when the details first began to emerge. But all concerns were dismissed as paranoia. Trust the NIH, we were told. The NIH has changed. Etc.

 

People suffering from depression are stigmatized in the same way as pwME. I am not comparing symptoms of depression to M.E.

Some with MDE are physically unable to leave their bed and have to be hospitalized.

I had a close friend who was bedbound for days, not because she didn't want to leave her bed, but because she was physically unable to leave her bed. She needed a caretaker.

 

I mean when I had depression and not ME (as far as I know, it's all a bit up in the air looking back) I felt miserable when I was out in the world.

When I tried to do things that used to cause me joy or excitement I often felt nothing.

So I see your point but I don't think you understand depression.

 

Agreed. The description of the disease by the paper does not ring true to me. As someone who has POTS, I can only do so much. After a certain point, I can’t physically push through the shortness of breath, weak muscles and tachycardia. It’s sit/lie down or literally collapse on the floor.

 

It's not just fatigue or weakness. ME/CFS includes other feelings of sickness. Balance, poisoned sensation, pain, dizziness - this study seems to gloss over these. Others like cognitive decline, it seems to dismiss or discount. PEM appears MIA. Overall this study seems a gross mischaracterization of ME/CFS.

How do they get it this wrong?

 

yes, the exertion intolerance isn't the wish to stop. It's the fact that people have a physical, somatic reaction afterwards. You're not having PEM during the exertion itself, so you can't really have the exertion intolerance during the exertion, at least as I've been understanding the term.

 

Also, just because someone can push themselves to finish a task doesn't mean their bodies can actually handle that without subsequent damage. The logic seems off.

 

Those symptoms are psychosomatic and thus not relevant. The only symptom that they considered "real" was this apparent unwillingness to do things, whether it is immune mediated or some brain process gone wrong. They are studying ME like a psych illness.

 

This question seems problematic. If folks are pacing effectively, maybe they're not experiencing PEM. Or maybe only a little. Is the question asking about what happens IF they have too much exertion or WHEN they have too much exertion? Those are different questions.

 

Didn't they have ME/CFS researchers advising them? There should be a response from that group. There also should be a coordinated response from every ME advocacy organization condemning this Russian Doll "effort" drivel embedded within what was advertised to be a serious and dedicated ME/CFS study.

 

They state clearly, if I remember, that CBT and exercise are "downstream" treatments not likely to have any impact on the immune-related causal factors--so that's a positive message at least. I think the choice of the phrase and model of "effort preference" was spectacularly misguided and ripe for misinterpretation and over-interpretation, like the choice of "chronic fatigue syndrome"--and they've done very little if anything to make sure that it is not misinterpreted. But having said that, I'm trying to absorb or interpret the term in the more narrow scientific sense in which I think they seem to be using it and not in the way it obviously sounds to the average reader--as a purely psychological or conscious decision.