Post-exertional malaise and the myth of cardiac deconditioning: rethinking the pathophysiology of long covid, 2026, Charlton, Wüst et al

V.R.T. said:
Yes I think a lot of media and health service messaging gaslights people into thinking they are unhealthy because they don't do intense exercise 4 times a week.

Looking back I was probably in better shape than your average office worker when mild, but was convinced I was 'unfit' - mostly because I felt dreadful all the time. And media tells us we feel bad because we're not hitting the gym or running 5k - it's always your fault.

It's frustrating to realise how much common wisdom about health and exercise is bullshit.
Click to expand...
This has impacted me a lot over the years. I too used to think I was 'unfit' and I'd try and get going, again and again - walking, swimming, running, cycling and push through what I now know now was PEM - but keep going because is was supposed to be good for me. In hindsight, it did confuse and frighten me a lot. It could be quite variable - where sometimes I could do things with minimal payback - or more confusingly I'd have delayed PEM. Other times I'd feel dreadful and need to stop exercising for months at a time to recover. Feeling lazy, upset and not sure why. Never feeling good after activity - just ill/grim. The end result after years of trying, failing, trying, failing etc was the development of severe ME type symptoms after a chest infection. Suddenly, I went from mild/moderate to severe - it was like falling over a cliff and did not knowing where I would land. Absolutely terrifying experience. I didn't have the language/word for this for a long time.

The gaslighting and social / moral view to exercise vigorously and to keep as healthy as possible sends mixed messages. It's presented as a magnificent cure all / aid to benefit wellbeing overall. And for some - with Type 2 diabetes, mildly raised BP etc, exercise and better diet can help some to turn that around. But not everyone can. Are they to feel? Shame? Failure? Inadequate? Useless? Hopeless?

If frequent, vigorous exercise really was that fabulous - it'd be much more readily and cheaply available. It is; however, much more doable with resources - money, time, access to gyms/clubs/equipment etc - it's perhaps more about class, wealth and status (peacocking?) than objective benefit over and above some general movement and daily activity.
 
Evergreen said:
In my view, the problem with overestimating the prevalence of POTS in ME/CFS and long covid would be that it takes the focus off areas that should be focussed on in order to actually solve ME/CFS. Another issue would be patients potentially being seen as less credible if they test negative for POTS, even though most will test negative, and this may be associated with worse, not better, prognosis.
Click to expand...
Much as the problem with questionnaires for PEM or CPET results to characterise PEM it seems many are automatically convinced of the usefulness of something despite evidence actually suggesting the opposite.

Researchers in the ME/CFS field seem so desperate to measure something “objective” that they have forgotten to ask themselves whether that is even the case in the first place.
 
Evergreen said:
particularly high risk of clots. This seems true - otherwise we'd expect people with very severe ME/CFS to be getting clots all the time, whereas I haven't come across reports of that.
Click to expand...
Being bedbound myself I have wondered about this too. Has this been discussed somewhere before? I did a cursory search but couldn't find much.
@Jonathan Edwards do you have a view on this? In terms of whether we should expect elevated risks and if it's possible to mitigate them?

Hopefully this is not too far off-topic.
 
Jesse said:
@Jonathan Edwards do you have a view on this? In terms of whether we should expect elevated risks and if it's possible to mitigate them?
Click to expand...

Lying in bed when ill for other reasons does appear to be a clot risk but for those with long term disabilities clots seem not to be a major issue - as indicated for severe ME/CFS. I think the evidence is that the risk of clotting just from immobility is low.
 
Jesse said:
Being bedbound myself I have wondered about this too. Has this been discussed somewhere before? I did a cursory search but couldn't find much.
@Jonathan Edwards do you have a view on this? In terms of whether we should expect elevated risks and if it's possible to mitigate them?

Hopefully this is not too far off-topic.
Click to expand...
I don't recall if it has been discussed before.

My understanding is that the risk relates to recent, transient immobility rather than the kind of situation pwME/CFS are in.

This caught my eye:
National guidelines (i.e. Sign Guidelines, Nice Guidelines refer to VTE prevention in relation to short term immobility, however there is no specific guideline to dictate duration of treatment in patients with long term immobility.

In the general population there are many people in the community or residential care settings with restricted mobility, for whom VTE risk does not appear to be increased.

It is neither safe nor practical to continue VTE prophylaxis on a long term basis but there are no defined criteria for discontinuation.
Click to expand...

I have severe ME/CFS, not very severe, so I'm still able to walk to the bathroom and to the next room, but am in bed when not on one of those epic journeys. A haematologist was happy to put me on a drug that increases clotting [edited: previously said clotting risk] with that level of mobility and no other risk factors.

In multiple sclerosis, I found this review which says [formatted for easier reading]:
Our metanalysis estimates MS to be associated with a 1.91 increased risk of VTE. Due to limitations in data available and controlling for common VTE risk factors, it is unclear whether MS as a disease process itself increases VTE risk or if it is the treatment or complications of the condition that do, particularly immobility.

Blood stasis, endothelial damage and hypercoagulability make up Virchow's triad, the pathological mechanism underlying VTE. MS could potentially contribute to any one of these (Fig. 3).

Immobility associated with severe disease is an obvious risk factor but MS has also been linked to elevated markers of endothelial damage and activation of the coagulation pathway (Koudriavtseva, 2014).

The increased risk of VTE in MS patients could therefore be due not only to immobility but systemic autoimmune mechanisms increasing thrombotic risk. Findings from two studies did certainly support an independent contribution regardless of disability (Christensen et al., 2012; Peeters et al., 2014).
Click to expand...

If things are that preliminary in MS, we're a long way off knowing the true situation in ME/CFS.
 
Last edited:
Evergreen said:
but am in bed when not on one of those epic journeys
Click to expand...
This resonates with me lol. No walking for me but I get pushed to the bathroom on a wheelchair about 2-3 times a week. Am spent after the whole ordeal.

Anyways seems like there's no clear reason to worry about it and definitely nothing to gain from worrying.
 
You must log in or register to reply here.
Back
Top Bottom