What to you think caused your ME/CFS, and what do you think has helped?

[Kitty]

In the context of my illness, I find it way more difficult to find that kind of approach.

It's normal to want to get better, and think "There must be something." It's hard to imagine there's anyone who hasn't gone through that.

The tough realisation is that this is what charlatans trade on. The even tougher realisation is that some of these charlatans are physicians, researchers, and other highly qualified, highly paid people, and some of them occupy senior positions giving them significant influence on policy and care.

The next, slightly depressing, realisation is that there's a larger group of highly qualified people who aren't really charlatans, they're just not very good. But it's balanced by knowing the same applies in every field, and that every field contains some people who are very good.

I've been ill since the 70s, long before internet resources came along, so it took me decades to travel that learning curve. It's not surprising if it takes recently ill people some time, even if they have access to more information. There's an awful lot of adjustment to do.

 

[Jonathan Edwards]

It's funny because in my field (science of learning) I have always been a big advocate for evidence-based/evidence-informed practice. In the context of my illness, I find it way more difficult to find that kind of approach. I guess it's my lack of knowledge.

Except that none of the rest of us know more than you do - because gathering of evidence for this illness has been so hopeless over the decades! It took me a long time to take on board just how badly ME/CFS has been handled and how little has been learnt, in comparison to diseases I used to manage.

People tend to use the term trigger as something that explains a time of onset. Human system vulnerabilities most people would put under predisposing factors maybe. What is very hard to tell is whether we can identify one person as more vulnerable than another or whether behaviours make us vulnerable. I doubt it at present.

 

[Utsikt]

When I first joined here, I realised that I just had to assume that we know nothing. And then I tried to slowly piece together the few things we might know based on following the discussions.

The hard part wasn’t to learn new stuff, it was to unlearn everything that was wrong or unfounded and applying the minimum standards to everything.

 

[Mij]

Sudden vertigo viral infection. I was fortunate to see an ME specialist in my city. He told me that some people recover while others don't. He advised not to exercise and to do 'nothing', even when I start feeling better, and that there are no treatments except treating sleep issues and pain. This was in 1992, and I'm not sure we've advanced much on treatments to this date.

 

[Evergreen]

But with 2/3-3/4 of patients reporting infectious onset, I think it's also possible that a specific vulnerability in the immune system is what triggers ME/CFS, and that people with all kinds of backstories, with and without infectious onset and with and without mental health issues, can have that vulnerability.

To explain what I mean, something a bit like Jason et al. described here in their prospective study of students who got glandular fever and did or did not develop ME/CFS:

We did not find any significant differences between those who developed ME/CFS versus those who recovered, on pre-illness baseline differences in stress, coping, anxiety, or depression. We did find baseline pre-illness complaints of fatigue and deficiencies in IL-5 and IL-13 in the group that went on to develop severe ME/CFS versus those who recovered.

 

[Peter T]

Just to add to what was said by others about the BPS approach to ME/CFS.

The bio psychosocial model in theory states the truism that every condition has potentially biological psychological and social components that need to be considered for fully effective treatment/management. However its proponents, particularly a number of high profile researchers and clinicians in the UK, misuse it to assert that the disease is caused and/or maintained by psychological factors (basically a modern interpretation of ‘hysteria’) that should be treated by psychotherapy and behavioural modification, that is sort out your thinking and exercise.

The proponents of this misnamed BPS approach, generally disregard any evidence of biomedical anomalies, and repeat the same experimental design over and over again, using unblinded trials with subjective questionnaires measuring outcomes. Effectively what they do is to change how people fill in questionnaires producing an apparent short term improvement in the scores on questionnaires resulting from the bias inherent in this approach and which disappears over the following few months as participants are confronted with everyday life. Further they usually fail to record harms, where individuals are made worse by the exertion of increased exercise triggering Post Exertional Malaise (PEM). They usually ignore all symptoms except fatigue, and it is they that invented the term chronic fatigue syndrome in the 1990s.

There is so much mis information out there, not helped by the fact that it is impossible to pin down the BPS advocates on any exact details of their models. Unfortunately even a lot of the researchers looking at biomedical approaches that also go beyond the evidence we have. If anyone currently says they have a demonstrated method of treating ME/CFS they are either lying or delusional.

 

[Utsikt]

Just to add to what was said by others about the BPS approach to ME/CFS.

The bio psychosocial model in theory states the truism that every condition has potentially biological psychological and social components that need to be considered for fully effective treatment/management. However its proponents, particularly a number of high profile researchers and clinicians in the UK, misuse it to assert that the disease is caused and/or maintained by psychological factors (basically a modern interpretation of ‘hysteria’) that should be treated by psychotherapy and behavioural modification, that is sort out your thinking and exercise.

The proponents of this misnamed BPS approach, generally disregard any evidence of biomedical anomalies, and repeat the same experimental design over and over again, using unblinded trials with subjective questionnaires measuring outcomes. Effectively what they do is to change how people fill in questionnaires producing an apparent short term improvement in the scores on questionnaires resulting from the bias inherent in this approach and which disappears over the following few months as participants are confronted with everyday life. Further they usually fail to record harms, where individuals are made worse by the exertion of increased exercise triggering Post Exertional Malaise (PEM). They usually ignore all symptoms except fatigue, and it is they that invented the term chronic fatigue syndrome in the 1990s.

There is so much mis information out there, not helped by the fact that it is impossible to pin down the BPS advocates on any exact details of their models. Unfortunately even a lot of the researchers looking at biomedical approaches that also go beyond the evidence we have. If anyone currently says they have a demonstrated method of treating ME/CFS they are either lying or delusional.

It also ignores that fact that most of the psychosocial components disappear if you treat the bio cause.

BPS also refuses to acknowledge that there are bio disease states that can’t be caused by psychosocial factors.

And it usually operates under the assumption that if the HCP don’t understand why you’re ill, it has to be caused by psychosocial factors. It is unable to conceive that maybe we just don’t understand the bio factors yet.

It’s all a big muddle of logical fallacies.

 

[Kitty]

it is impossible to pin down the BPS advocates on any exact details of their models

There's also a claim that outcomes depend on the therapist's ability to deliver the therapy in a special way.

In traditional music you hear people saying that someone "has the nyah". It's the secret sauce, the magic touch a good player has with the swing and lift of the music.

BPS practitioners seem to think the nyah applies to therapy. But they never have to perform it in a pub full of people who know, so we're expected to take their word for it.

 

[StellariaGraminea]

1. What do you believe caused your ME/CFS?

2. What has helped you improve so far (if anything)?

1. Covid. Although I had my first UTI about 4 or 5 months before I got covid & never felt quite right after it. But when I caught Covid literally all hell broke loose in my body to the extent I am surprised I am still alive. I figured out I meet ME criteria about 9 months after covid onset & found community advice really helpful. I also had a lot of other what I considered covid-related symptoms going on at the same time.

Had a previous history of shrugging off infections easily so really couldn't understand or make sense of not recovering from covid. Kept expecting "any day now" to get better.

I don't agree with what you're saying about psychotherapy, but that's purely from my personal perspective. I had strong beliefs about myself and about the world. I used to be very critical towards myself and my achievements and I believed that my value as a human being was expressed through my achievements (eg in my career and as a parent) and - my perceived - usefulness. This is just one example but my psychotherapist has really helped me to unravel my beliefs and default behaviour patterns and has helped me to reconsider them. I needed that in order to accept my situation and stop pushing myself further downhill and blaming myself. It also helps me to continue to work on healing (if possible) in a 'softer' way. This is more than 'supportive dialogue' in my opinion.

Edit: (Pressed post before I was finished).
I do find it frustrating to read e.g. articles like the one in an Irish newspaper this week implying the illness is perpetuated by psychological factors, particularly with the whole history behind that that others have explained well on here. Re how you found psychotherapy useful etc, just to point out that many people who never develop ME also believe their "value as a human being (is) expressed through... achievements". It's really common in the world we live in. I do wonder if developing a serious chronic illness like ME forces people to confront aspects of their personal psychology that they mightn't otherwise have. I don't see it as causative. Though of course if someone's personal psychology causes them to mismanage their illness, e.g. by pushing through when they need to rest etc, that of course it's important to address.

 

[MinIreland]

1. Covid. Although I had my first UTI about 4 or 5 months before I got covid & never felt quite right after it. But when I caught Covid literally all hell broke loose in my body to the extent I am surprised I am still alive. I figured out I meet ME criteria about 9 months after covid onset & found community advice really helpful. I also had a lot of other what I considered covid-related symptoms going on at the same time.

Had a previous history of shrugging off infections easily so really couldn't understand or make sense of not recovering from covid. Kept expecting "any day now" to get better.



Edit: (Pressed post before I was finished).
I do find it frustrating to read e.g. articles like the one in an Irish newspaper this week implying the illness is perpetuated by psychological factors, particularly with the whole history behind that that others have explained well on here. Re how you found psychotherapy useful etc, just to point out that many people who never develop ME also believe their "value as a human being (is) expressed through... achievements". It's really common in the world we live in. I do wonder if developing a serious chronic illness like ME forces people to confront aspects of their personal psychology that they mightn't otherwise have. I don't see it as causative. Though of course if someone's personal psychology causes them to mismanage their illness, e.g. by pushing through when they need to rest etc, that of course it's important to address.

Yes! These are really good points. I realise that I write my 'causes' story from a) a perspective of how I have experienced my health deteriorating and also b) a tendency to fill in the blanks and create a coherent narrative for myself.

This is something that psychologists make you do. It's not necessarily helpful in the way that that narrative might be totally made up, but it is helpful for me in a way that I can now see that certain beliefs, habits, and behaviours I had, are not helpful now that I'm ill.

Gosh, I love this group. Really helps to bring a lot of nuance. Thanks so much!

 

[Eleanor]

1. Covid infection was the trigger. Not connected to anything in my previous physical or mental health that I can think of - but I do have a closeish relative who had ME for many years (and then recovered) so perhaps there is a genetic predisposition.

2. Like everyone else says really: Pacing helps to avoid crashes and losing function, and there are some things that seem to help with particular symptoms eg magnesium for muscle stiffness. My relative doesn't attribute their recovery to anything but rest and time.

 

[StellariaGraminea]

Yes! These are really good points. I realise that I write my 'causes' story from a) a perspective of how I have experienced my health deteriorating and also b) a tendency to fill in the blanks and create a coherent narrative for myself.

This is something that psychologists make you do. It's not necessarily helpful in the way that that narrative might be totally made up, but it is helpful for me in a way that I can now see that certain beliefs, habits, and behaviours I had, are not helpful now that I'm ill.

Gosh, I love this group. Really helps to bring a lot of nuance. Thanks so much!

I think we all naturally try to create a narrative to explain things to ourselves. I know I've scrutinized how I might "have caused" myself to get sick... and still unconsciously tend to do that. Have to work on not blaming myself. Especially notice the tendency to feel a sense of blame & think some of it is fueled by how health care professionals approach us.

Just realised I never answered your 2nd question. The 3 things that have helped me most:
1. REST!
2. Covid vaccines 1 & 2 (baseline increase)
3. Ivabradine (further notable baseline increase).