Why does some ME/CFS become very severe? Discussion thread

[Trish]

The most commonly quoted prevalence figure for severe ME/CFS is 25%. This includes very severe ME/CFS which is estimated to be a much smaller proportion.

We have quite a few members here with very severe ME/CFS, by which I mean bedridden or almost entirely bedridden. We also see in the media a scattering of extremely severe cases and deaths, usually from malnutrition.

What I have not seen is any study of why some ME/CFS becomes very severe, and why others live for decades without ever reaching very severe.

We are all aware that many people with ME/CFS report becoming much sicker after undertaking exercise programs, either prescribed as GET, encouragement from others or self directed.

Here are some ideas of what we might share or discuss:

Are there other triggers of worsening to very severe besides exercise?

Does some ME/CFS arrive as very severe from the start, immediately after the triggering infection?

What is your experience of how and why your own very severe ME/CFS started?

Was there a noticeable change in incidence of very severe ME/CFS in the years when GET was promoted by clinicians and clinics?

Is there any research on what triggers long term change from milder to very severe?

 

[Clio]

I was mild/moderate for years most likely, could be EBV in my teens but that is just speculation, a month after a covid infection in late 2023 I was prevented from sleeping for several days in a row (due to neighbours) and this instantly made me severe and started so many new symptoms that could be described as long covid. Before that I was tired, fatigued, after that permanently full of energy and never tired and fatigued. My next major decline was a visit to a neurologist a year after this - taking a taxi and climbing 1 flight of stairs. This was my last time outside, it has instantly made me very severe and I have been stuck at that point since (1.5 years).

Now all of this is very anecdotal and just pure correlation. I am pretty much always in PEM, sometimes overdoing it by a lot, so why these particular and specific points made me permanently worse and not others? The infection makes sense, a major immunological trigger, but why does the exact same amount of exertion sometimes lead to worsening and sometimes not?

 

[Sasha]

I have ratcheted down several times following new flu/Covid infections. Over years, I tend to then improve, but the link seems crystal clear - get a bad viral infection, severe flu-like malaise continues for many months, don't regain function for years.

Doesn't happen with every infection, though, and I don't know why.

 

[hotblack]

No idea for a lot of these and I don’t think I count as v severe although I’m limited to a bed/sofa, and a bit precarious so do regularly have periods entirely in bed, but the times I’ve got significantly worse have been

- in the early years after pushing myself or being pushed to go to hospitals and specialist cfs clinic (as they were called) appointments (went from moderate or good end of severe to bad severe/v-severe then over many years improved a little)
- after covid vaccinations (knocked me back to the bad end of severe or v severe to a place I’ve improved from but not back to where I was)’

Correlation is not causation though and there may have been a natural decline here, with these as dips along that path. But the really really having my body pushed in many ways at once which these caused seem to have caused decline beyond normal PEM or other worse, but recoverable periods of illness or exertion. I really don’t think I could bounce back from say an emergency or trip or out patients trip to hospital. I do believe what they unnecessarily put severe people through makes us worse. But immune hits also seem key.

Definitely had declines from home physio stuff when they were ‘encouraging’ me to do more, but that isn’t what pushed me into severe. I was already there.

I’m also unclear if I had been more mild for some time before what I see as my triggering infection (kidney infection and time in hospital with that) as I had had a year or 18 months of ‘struggling’ bit had also been v active. So that infection could have been the push from mild towards severe or just the original trigger. It was the biggest change point for me.

But either way I improved somewhat after that, and worked a bit, before everything collapsed and I had to give up work a few months later and became what I describe as moderate above, but is perhaps severe depending on definition/perspective).

Not sure if this helps, but there’s a perspective

 

[StellariaGraminea]

Not "very severe" (am not totally clear on the definition), but a 2nd covid infection pushed me into "severe" for over 6 months. Thankfully after that returned to moderate baseline. Separately a visit to a Dr that I couldn't avoid (taxi there and back, noise / light, taxi-driver talking, walking and having to stand longer than I could) caused a noticeable decline for ~6mths, to mod/severe. Some aspects didn't recover, just a new baseline.