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

Trish

Trish

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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, (edit: plus a range of other severe problems). 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 exertion, including 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 exertion?

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?
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Edit: It has been pointed out that it would be useful to start the thread with a clear description of very severe ME/CFS and the difference between this and severe ME/CFS. The UK 2021 NICE ME/CFS guideline says:

Severe ME/CFS
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Very severe ME/CFS
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
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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?
 
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.
 
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
 
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.
 
Trish said:
This includes very severe ME/CFS which is estimated to be a much smaller proportion.
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I think the usual figure quoted is 5%.
Trish said:
very severe ME/CFS, by which I mean bedridden or almost entirely bedridden
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That is not the complete definition of very severe
Very severe ME/CFS

People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
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MEA /NICE

Interesting that there is no mention of cognitive problems whereas for severe it says:
  • Severe — a person is unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). The person has severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or experience a severe and prolonged impact if they do. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
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see dialogues
A more detailed look at very severe ME/CFS.

Very severe ME/CFS can be a very frightening disease, not only for the family and carers of the severely ill patient, but also for doctors who are unlikely to have any previous experience of these most severe presentations. Patients can die from very severe ME/CFS and it’s complications, and this is more likely to happen when their condition is badly managed by ill-informed doctors. It is important that doctors listen to the patient, or if the patient wishes, to their carers. Specialist help should be available for these very severe cases
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www.dialogues-mecfs.co.uk

Severe & Very Severe ME / CFS - Dialogues

www.dialogues-mecfs.co.uk www.dialogues-mecfs.co.uk

(Examples of very severe whitney dafoe, lynn gilderdale)
 
My first thought is that severity is due to some control subsystem. Maybe it's a change in the number of receptors on certain cells, or the number or position of microcapillaries supporting certain cells, or the number of neurons carrying a certain signal. That subsystem, or part of it, might lie outside the brain (vagus nerve, gut). It also could involve multiple subsystems or signals none of which deviate beyond human normal, but add up to severe symptoms. Any of those possibilities might be very difficult to find when you don't know what you're searching for.

There's no harm in questioning what factors cause worsening, but if it's a hidden subsystem, knowing that exercise, stress or lack of sleep preceded the worsening seems unlikely to help in identifying the actual alteration. There are too many physiological changes caused by such factors.
 
Creekside said:
There's no harm in questioning what factors cause worsening, but if it's a hidden subsystem, knowing that exercise, stress or lack of sleep preceded the worsening seems unlikely to help in identifying the actual alteration. There are too many physiological changes caused by such factors.
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The aim of this thread is to learn more about what if anything people have experienced possibly triggering their very severe ME/CFS. I agree it tells us little about the underlying biology, but that's not the focus of this discussion.
 
Interesting question. I was already housebound, but I could still manage around 4,000 steps per day. I had to lie down or sit a lot, but I wasn’t bedbound yet.
I only became very severe after I decided (stupid me) to take small walks every day, not far, but around 500 steps. This worked for about a week, and then suddenly I woke up one morning and could no longer leave the bed. That was one and a half years ago.
Since then, I haven’t been able to get out of bed and I need help with almost everything.
I’ve often asked myself why my condition hasn’t improved and how it came to this in the first place. We can only speculate. I once read a study showing that in ME/CFS, cytokines can increase strongly with a delayed response after physical exertion, maybe a hint?
 
I was in rolling PEM for a few years, there were diminishing returns each time but I was convinced I had to keep working. No idea if I did catch covid or just massively crashed from that, losing my job etc but lockdown was very convenient.
I struggled to brush my teeth or shower, I didn't go out and I was under 1k steps most days. I’ve improved a lot from severe to moderate/severe to moderate.
I never thought I’d get that sick because I’d never been that sick before and I didn't really know you could overdo it enough that you could make yourself so much worse. I wasn’t very up on ME, after some bad support group experiences I didn’t take any interest in the community since 2010ish. It sounds crazy really. We didn’t have so much social media when I got sick, it hadn’t occurred to me to look for pwME.
 
It's also relevant to consider the opposite, what situation precedes an improvement in capacity.

I am mostly severe, either bedbound or recliner bound all the time at home although I can walk from one room to the next. I use a power chair outside home but, apart from hospital appointments, am only managing to leave the house every 2 or 3 weeks when at my best and have to be driven and accompanied. Last week, when visiting a garden and having coffee ( brought to me) in the food hall, I needed to use the facilities, and got up and walked there alone which I haven't done for several years. I stood comfortably washing and drying hands, and walked back. I would have been able to continue walking but the chair had to come with us so it was easier to sit in it. I was really perplexed. This just happened, unplanned: I just knew I could do it and could have walked further in that moment. My OI is severe. I can't make a cup of tea. Usually I hate being upright because it makes me feel ill. Why could I suddenly walk further, and without my rollator or a stick? Last time I tried, I had to rest sitting on the rollator's seat after a very short distance. It's perplexing.

My pattern of deterioration has been slow and steady without periods of significant improvement apart from an occasional ability to walk further which didn't persist. I have lost capacity steadily so why these sudden short periods of being able to walk more. It was a wonderful feeling . I felt normal. No struggling to get through a non disabled friendly door, no disabled loo, able to stand to wash hands then stand at the hand dryer. I am using no treatments like abilify or LDN. It just happened. Nothing distinguishable preceded it.

Almost everything triggers PEM now, and the fear is always of worsening.
Sean said:
I would use the word exertion. Overdoing cognitive or social activity seems to be as powerful a trigger for major decline/relapse as physical effort.
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I agree. I cannot sit at a table to eat with my family. I have to eat in my recliner in another room. Eating at a table is too social an activity. A meal at a table with one friend, about once a year, causes at least 3 days' PEM. Am worried that one day , I won't come back. I feel I shouldn't risk it but I need to feel human.
 
Trish said:
I agree. I posted on the understanding that anyone taking part on this thread already knows what we mean by very severe ME/CFS, and didn't want to fill up the opening post with a range of definitions and start a side discussion on which definition is accurate. Maybe I got that wrong.
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Trish said:
very severe ME/CFS, by which I mean bedridden or almost entirely bedridden
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I don't think a 'range' of definitions was necessary but one that only says that person is 'almost entirely bedbound' is not the same as someone who is dependant on care, often needing help with personal hygiene and eating.

Even that I think is down playing 'very severe' ME as we understand it. I would have thought that it would be more like 'is bedridden and totally dependent on carers for all aspects of personal care and eating'. (plus the bit about maybe needing tube feeding).

This is a public thread so I thought it important to accurately inform those 'visitors' who maybe don't know just how bad ME can get.
I imagine a lot of people are unaware that a 'very severe' category even exists.

(not meant as a personal criticism).
 
This is a bit long. But its the context all my deteriorations and improvements.

I got COVID. I was mostly fine ish. Though I had bad stomach symptoms. I also for the first time in my life noticed that “pushing through” (I was doing pre-Op physiotherapy at the time) stopped working. I tried doing my leg exercises a week and a half after onset and I just started to overheat and feel terrible and had to stop.

Then 2 weeks post onset. I was still feeling a little sick. But the surgeon said it was fine so we went ahead and did my surgery.

Instantly after the surgery I got terrible stomach symptoms and became bedbound. Over a couple weeks/months I improved. To the point I could have a “normal” life again but would feel a bit chronically sickly and exerting a lot would make me feel all awful.

This continued for about a year and a half, including lots of physiotherapy for my knee where I felt awful after the sessions (reflux, nausea, severe fatigue, flu like) but kept pushing. So I had a year and a half where I was living a normalish life. Feeling shit but able to function somewhat. Even though I got sick all the time (probably PEM in hindsight).

The summer holidays 1.5 years later came along. I finally finished physiotherapy. I had a stressful couple weeks with less sleep than usual. I then went with friends to a summer house for a week. That was fun. But there was clearly something wrong. I would sleep 12 hours a day, I could barely walk 500 meters without feeling awful. At the end of the week I powered through a day long flixbus journey to get home. When I got home. I laid in bed.

I essentially haven’t left it since. All I could do was spend my days listening to audiobooks on 0.5 speed with an eyemask on. Though I was very very very slowly improving. But by then my parents had gotten scared by my physical state. And also my partner had come. So I had a lot of extra exertion. The Long COVID clinic diagnosed me with ME/CFS and sent me to a dozen referrals I pushed myself to go to. One of the last ones I made it to was FND person who pushed me way over my limits.

At that point. I stopped improving and started declining continuously. I only stabilised once I could only do liquid nutrition and could not communicate at all. This lasted a week or two and i slowly improved to the point I could talk a bit and listen to audiobooks.

Then came the holiday season. I got a flu. Then a gastro. Within two weeks. My body started shutting down again. I went back into the no communication extremely severe. I lost ability to tolerate sound at all. I was totally alone for perhaps a month until I regained some phone use capacity.

That was two years ago. Nothing has changed since then. I still cannot tolerate sound or speak. I can use my phone a decent amount although I feel I overdo it. I’d say I’m on the lower end of very severe.

This is very long sorry. I just wanted to lay out things as they were. Without simplifying into this caused that. Just how I experienced it.
 
For an extended family member (who lived abroad) it was becoming intolerant to gluten, then a series of chest infections. Everyone is going to be different i guess and with other medical conditions.

She became bedbound more frequently with asthma, bronchitis and pneumonia. Every time she was hosputalised she got weaker.
 
Binkie4 said:
It's also relevant to consider the opposite, what situation precedes an improvement in capacity.
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Also the opposite in terms of why do some PWME encounter the same triggers and not get more severe. You'll have plenty of reports that people became more severe after physical exertion, yet there are others who do even more exertion, and do it fairly frequently, yet don't get more severe. Likewise for infections, vaccinations, sleep deprivation, etc.
 
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