ME/CFS and Post-Exertional Malaise among Patients with Long COVID, 2022, Jason et al

Ravn said:
Every time another paper from Jason's team comes out I want to scream with frustration. They're asking such important questions but then they go and use instruments that are inappropriate for the task to try and answer them. They've stirred themselves blind on their DSQ questionnaires.
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Thank you, Ravn, you have spelled out my concerns with DSQ very well. It's so disheartening that they haven't fixed it.
 
imho - omelettes / eggs / chickens.

You cant make an omelette without breaking eggs, so in my view this paper at least tries to home in on a defining symptom (PEM) to prove the nebulosity of the diagnosis, which is a start and moves the wider conversation in a helpful direction.

I agree diagnosis deserves a rigorous empirical basis. But the molecular definition is elusive, probably not helped in the first place by the nebulous diagnosis and eclectic cohorts.

To refine cohorts you have to refine diagnosis, but we seem to be in a situation where we need to refine cohorts before we can refine diagnosis, which is where the chicken and egg thing comes from.

So you gotta catch your chicken before you can make an omelette is all I am saying! :whistle:

I am sure that made sense when I started typing.

I think I am trying to say I value this attempt to approach the difficulty of diagnosis with a rational academic perspective in a psychological headspace instead of the kind of headless chicken mental scampering which we have had from BPS approaches due to truth distorting competing interests and grubby motivations. I see this as a meaningful steer born of integrity and the start of a long journey but by no means its end. The journey of a thousand miles begins with a single step. This is one step and we need to keep going in the right direction.

So I dont want to make perfection the enemy of the good but I agree criticism is essential to create debate, improve methods and take the next steps.

I am grateful to Drs Leonard A. Jason and Joseph A. Dorri for this, I think it is a constructive contribution.
 
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Haveyoutriedyoga said:
This is one of the things that gets me, but at the same time I suppose it guards against PEM because it forces me to pace by limiting my activity while I'm doing it. Also means I can hardly enjoy anything even if I wanted to risk/take PEM.

What also annoys me about questionnaires about how disabled we are is when they use 'whether the person can work' as a measure. I work, from home, full time, very flexible hours, sometimes lying on the sofa with laptop on my stomach and have held myself back a level and changed industry to make it possible. It costs me pretty much everything else and I'm housebound 6/7 days per week but the scales don't line up with that. Also means people assume that because I work I can't possibly be that unwell.
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I think, very good points.

A good way to look at hopefully avoiding PEM: if a pwME feels horrible early on due to orthostatic intolerance, and rests, in other words are forced by symptoms to pace, then maybe PEM can be avoided following exertion. I don't know if I've found that myself. But maybe others have.

About work and other activities, many people just pay attention to the headlines. They use their own perspective of course to interpret the fact a pwME works. They wouldn't see the pwME resting, and perhaps working odd hours to make up for the time when one feels worse etc. They only see the "headline", and feel entitled to pass judgment on that. Been there.
 
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