“Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group (2019)

Michiel Tack said:
The fact that there are hardly any objective improvements in ME/CFS isn't normal.
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This point isn't made enough. It's literally expected that the vast majority of people would make objective gains, no matter small, from exercise, every bit as much as we expect people to gain weight from a high-calorie diet. That this does not happen is actually a big F deal. It's a massive deviation from what is universally expected and that tells us something.

But this anomaly is simply waved off with speculation and conjecture. This is not acceptable and completely unserious.
 
Jonathan Edwards said:
It would be important to know how robust the methodology was in these.
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From scanning the reviews, some of them had conclusions that didn't seem very robust. For example, based on a small number of studies with small samples.
Unfortunately, I don't have the energy to look into this further. It would probably take many months and it's already difficult to keep up with all ME/CFS research.

Even if most of these findings turn out to be shaky, it's still remarkable that exercise trials reported objective improvements in all these conditions but not in ME/CFS. It's not like the researchers conducting the ME/CFS trials didn't want it to be true or weren't looking for it...

If it were the case that exercise improves fitness and cardiopulmonary measures in just about any chronic illness but not ME/CFS, that might be a clue to what ME/CFS is.
 
This made me think of this study

In a previous study we demonstrated that while people with CFS had lower daily activity levels than control subjects, they were able to increase daily activity via a daily walking program. We reanalyzed our data to determine the time course of activity changes during the walking program. Daily activity assessed via an accelometer worn at the hip was divided into sleep, active, and walking periods. Over the first 4–10 days of walking the subjects with CFS were able to reach the prescribed activity goals each day. After this time, walking and total activity counts decreased. Sedentary controls subjects were able to maintain their daily walking and total activity goals throughout the 4 weeks. Unlike our previous interpretation of the data, we feel this new analysis suggests that CFS patients may develop exercise intolerance as demonstrated by reduced total activity after 4–10 days. The inability to sustain target activity levels, associated with pronounced worsening of symptomology, suggests the subjects with CFS had reached their activity limit.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928/

I think this also implies that accelerometer studies need to be carefully designed or they could only show the initial improvement but not the subsequent struggle.
 
strategist said:
It has to be possible to figure out where the bottleneck is in the system that prevents sustained activity levels or an increase.
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Honestly at this point I think it may be necessary to have to go to the level of having live-in patients in a specialist facility where everything they do is monitored, with the ability to test on location. Kinda like the NIH is doing, just longer, more extensive and without gaps. Expensive and complex but otherwise it's like watching something with unsynchronized stroboscopes going off and trying to make sense of what is actually happening between the flashes.

Not that we could ever get the funding for this while we're still stuck at the problem-not-worth-solving. Bleh.
 
What could be done is having patients do a GET program while wearing an accelerometer. As soon as they begin to struggle, have them stop and do in depth testing of metabolism, neurological function, etc. Home visits might be viable to avoid putting further burden on patients.

That could finally show that GEt is problematic while also providing clues to what the activity limiting factor is.
 
Hutan said:
In any case, a complaint could be made to the RACGP. Maybe it's something Emerge could put together? @Simone

@Michiel Tack, that's an impressive start to a response. Re item 6 about the frequency of mental health disorders:
The recent study of 164 Australian adolescents discussed here:
https://www.s4me.info/threads/epide...australia-2019-knight-et-al.8343/#post-147042
found

So only about 40% of these patients had reported mental health disorders.

Might also be worth talking about the current status of the Cochrane GET meta review.
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Also, many "comorbid" psychiatric diagnoses are probably spurious. The level of distress patients report, together with symptoms often associated with psychiatric diagnoses (loss of concentration, poor sleep, fatigue), can often lead to overdiagnosis of psychiatric disorders.

Edit: Oh, I see Dokagirl already made this point, sorry!
 
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Woolie said:
Also, many "comorbid" psychiatric diagnoses are probably spurious. The level of distress patients report, together with symptoms often associated with psychiatric diagnoses (loss of concentration, poor sleep, fatigue), can often lead to overdiagnosis of psychiatric disorders.
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And as I've previously said somewhere, the stress of being discounted by the medical profession and society in general, will also take its toll. Cause and correlation confusion again.
 
Barry said:
And as I've previously said somewhere, the stress of being discounted by the medical profession and society in general, will also take its toll. Cause and correlation confusion again.
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Adding to that the stress of income insecurity. I've had many periods in which I had no income for months. It had no effect on my overall health, but it is very unhealthy and essentially a hardship deliberately inflicted in addition to the health problems themselves. But that was mostly because I had good credit and could rely on the occasional high income during remissions, which would inevitably make me worse off as it was more work than I should have been doing.

For those who do react badly to anxiety this can get very serious and instead of being recognized as a consequence of harmful guidelines of policies, it's argued as a cause, somehow inverting the arrow of causality but let's not worry about that small detail.
 
Woolie said:
Also, many "comorbid" psychiatric diagnoses are probably spurious. The level of distress patients report, together with symptoms often associated with psychiatric diagnoses (loss of concentration, poor sleep, fatigue), can often lead to overdiagnosis of psychiatric disorders.

Edit: Oh, I see Dokagirl already made this point, sorry!
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As I see it, all you have to do is put some random perfectly healthy person into this situation of living to find out how utterly difficult it makes it for people to function after a time.
 
Snowdrop said:
As I see it, all you have to do is put some random perfectly healthy person into this situation of living to find out how utterly difficult it makes it for people to function after a time.
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Surprising research shows that people wrongfully imprisoned for decades and held in solitary confinement display high levels of depression. Did the depression cause them to be wrongfully imprisoned? Research says... maybe. Researchers say... more research is needed (aka give us money).

Lies. Damned lies. And statistics. Sometimes all three. The Aristocratspsychosocial ideologues.
 
Snowdrop said:
As I see it, all you have to do is put some random perfectly healthy person into this situation of living to find out how utterly difficult it makes it for people to function after a time.
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At school they use " beer glasses" to mimic drunkenness, in first year as part of personal social education, and pupils literally bounce off the walls .
If only there was a modulatable ME suit that could be part of medical education
 
Years ago, when I worked with people with learning disabilities, we did training workshops where staff participants took turns to be 'patients' and 'carers'.
'Patients' were given details of their disability and role played it while experiencing being fed, moved from bed to chair, etc..

Some 'carers' were primed to behave poorly, not explaining what was happening, talking over the 'patient', or being impatient and rushing the patient.

I will never forget one 'patient', who I think was being fed, ending up hiding under the table to get away from her so-called 'carers'.
 
Amw66 said:
If only there was a modulatable ME suit that could be part of medical education
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There kinda is: the flu. Not entirely it but the closest experience to it. Maybe add food poisoning for good measure.

Just get medical students to commit that the next time they have the flu (or hell, give it to them straight I'm sure that can be done) they come in to some facility for all sorts of testing and activities and having them yell STOP at their symptoms or whatever and see how well it works. Grill them on why they're having such a frowny face when they are in no danger whatsoever (fully healthy people, of course) and have them fill all sorts of garbage questionnaires that will diagnose them with depression and anxiety because the questions are ambiguous on purpose. Insist no matter what that they are not actually sick and expected to fully comply or face severe financial penalties.

Hell, have them do tests during that time that will count towards their grade (no medication allowed, of course) and make big irreversible financial decisions, then remind them that any stress of harmful consequences is nothing but a unhelpful illness belief. Have super-pushover people treat them like they treat us, talk loudly over them, ignore any demand for help and bring them back to their feet if they fall. No water allowed if they can't get to it and it's deliberate placed far away and restricted.

Make it a big party, loud noises, annoying flashing lights. No rest allowed. Have them eat all sorts of greasy food and tell them they're not allowed to barf or they will have to clean it all up. With carnival rides, of course and they can't complain about being nauseous because that's negative and will only make them sicker.

Anyway that would be completely unethical and possibly meet the definition of torture, but then so is forcing millions of people to continue living in conditions worse than that for decades.
 
A friend's daughter when in remission from ME gained employment with a medical equipment company. Part of the training was to wear a weighted suit to simulate what it feels like to be sick and/or old. She said it had similarities with the energy deficit in ME.
 
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