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

[Jonathan Edwards]

This is more than 'supportive dialogue' in my opinion.

That sounds largely what I would call supportive dialogue. The key thing for me is to remember that psychotherapists have no way of knowing whether their theories are useful or valid. They were just made up by previous psychotherapists. They never test their theories properly so they will never know. We don't understand how minds work.

 

[Trish]

I don't agree with what you're saying about psychotherapy...

Some people find therapy or counselling helps them cope and pace better, which may enable them to reduce the harm caused by over exertion, but that doesn't mean ME/CFS is caused or perpetuated by psychological factors.

I'm glad psychological therapy helped you. But not all psychological therapy is helpful or risk free.

My experience with CBT when I was finding it hard to cope with ME/CFS scuppering my career was dreadful. It took me a couple of years to work through the harm caused and sort out for myself how to cope with major changes to my life.

 

[T&O]

Its unclear how I became ill with ME.,
(and do take onboard Jonathons views)
my Drs and family believe its post viral
(struggled with a second severe bout of chickenpox in my late teens , bed bound ,first time ever ,for 4 months , and took a while to get back into my university course),
combined with genetic predisposition (not proven of course), migraines from an early age, had a few concussions too as a very active climbing farm kid.

Might it be interesting perhaps to note environmental factors ?
re ME, or further autoimmune issues ?

When I was bouncing around as a ca 5 year old
there was also alot of noteable chemical weed spraying (council would fume their way along roadsides rurally back in the 70s, where our farm was north of auckland NZ, with chemicals now no longer acceptable), and as an outdoor kid Im sure Id have been caught a few times unknowingly.
Interestingly 2 others of similar age in our valley (Id long since lost contact with) a past neighbour noted that theyve since also been diagnosed with ME…
(foggy do apologise for not getting this down clearly),
…they were also outside alot, later generations in our families havent been diagnosed with ME.
My older Sister doesnt have ME but she has also been diagnosed with Sjögrens (currently in good shape, so remission if you will).

Would agree whole heartedly with Kitty and Verity re managing symptoms , adjusting my own expectations. For me its quality of life rather than improvement.

Nothing has ever helped me improve. I'm not sure if that's even feasible

1, Cause: unknown biology.
Possible genetic predisposition, given family history

No psychological association with predisposing, precipating or perpetuating my ME/

Please note this is the case for me too.

 

[T&O]

I'm glad psychological therapy helped you. But not all psychological therapy is helpful or risk free.

My experience with CBT when I was finding it hard to cope with ME/CFS scuppering my career was dreadful. It took me a couple of years to work through the harm caused and sort out for myself how to cope with major changes to my life.

This really is too common.
Youre not alone Trish. (virtual hug ?), so sorry to hear you went through this too.

I still grit my teeth when ,perhaps well meaning , ill informed people draw in mental health factors for all who are ill with ME.
“MS used to be call Hysteria” I usually reply…
(Nothing worse than perpetuating bs due to lack of knowledge or experience).

 

[rapidboson]

Covid caused it

Biggest improvements in quality of life came from pyridostigmine (pots/oi), LDA (cognitive dysfunction) and agomelatine (insomnia).

 

[Trish]

I just meant creating an overview of the wide variety of causes and 'things that might help some'.

I would advise against trying to create any kind of overview based on this discussion. Lives and illnesses are complicated . It's fine for us to share glimpses into how we interpret what may have triggered and what may be helping, but any summary cannot be more than a collecting together of personal anecdotes.

If we are to learn more about what genuinely causes, triggers, perpetuates, worsens or improves the health of pwME that can be used to guide our own care, we need proper scientific studies.

While we wait for science to provide answers, some of us experiment with all sorts of 'treatments', and some people become so convinced that they have the answer based on their own experience that they are all over social media selling their 'cures'. So far none of these has been demonstrated in properly run clinical trials to be effective and some people have been badly harmed by experimenting.

This is why we set up this forum, as a safe space where we could look at the evidence in an unbiased scientific way, and provide support for each other in an environment where we keep members safe from bad medical advice and people pushing unevidenced 'cures'.

Sorry, that turned into a bit of a rant. All I really intended to say is, it's great to share our experiences, but let's not try to make conclusions from them.

 

[MinIreland]

My initial onset was concurrent with glandular fever (an acute Epstein Barr infection with the virus confirmed). I believed I had recovered after some four years, but then my first significant relapse was concurrent with an acute seasonal flue infection (virus not confirmed).

In my mind I see these as triggers and often use the word ‘triggered’ rather than the more correct phrase ‘concurrent with’, even though this involves assumptions, but not as many assumptions as saying my ME/CFS was ‘caused by’ the viruses that I try to avoid.

I have relapsing and remitting ME/CFS, though over its thirty years each relapse has been worse and each remission slower and to a lower level, resulting in an overall deterioration over time. My initial remission was associated with dramatically reduced activity levels and an extreme raw food organic diet with lots of food supplements. However, later when in relapse I subsequently identified food intolerances and vitamin B12 deficiency, so now think that diet and supplementation do not directly impact my ME/CFS, just enable the elimination of the negative effects of the food intolerances and any vitamin deficiency.

I now suspect that reducing activity to an extent that avoids any ongoing PEM effects and managing diet, creates the best circumstances for spontaneous recovery to happen, rather than directly treating the ME/CFS itself. However, over time any tendency towards spontaneous recovery becomes slower and weaker.

I really appreciate everyone teaching me the correct language. I understand now that 'causes' was not the right word to use. It makes sense that there is not one particular 'cause'.

What are the assumptions involved with the term 'concurrent with'?

Also, what do you mean with this phrase? "However, over time any tendency towards spontaneous recovery becomes slower and weaker".

Thanks so much.

 

[MinIreland]

I would advise against trying to create any kind of overview based on this discussion. Lives and illnesses are complicated . It's fine for us to share glimpses into how we interpret what may have triggered and what may be helping, but any summary cannot be more than a collecting together of personal anecdotes.

If we are to learn more about what genuinely causes, triggers, perpetuates, worsens or improves the health of pwME that can be used to guide our own care, we need proper scientific studies.

While we wait for science to provide answers, some of us experiment with all sorts of 'treatments', and some people become so convinced that they have the answer based on their own experience that they are all over social media selling their 'cures'. So far none of these has been demonstrated in properly run clinical trials to be effective and some people have been badly harmed by experimenting.

This is why we set up this forum, as a safe space where we could look at the evidence in an unbiased scientific way, and provide support for each other in an environment where we keep members safe from bad medical advice and people pushing unevidenced 'cures'.

Sorry, that turned into a bit of a rant. All I really intended to say I'd, it's great to share our experiences, but let's not try to make conclusions from them.

Understood, Trish. That makes sense. My intent was to illustrate that there is such a wide variety of 'triggers' and also that what helps one person wouldn't necessarily help another.

However, I get your point and I will refrain from summarising.

I really appreciate everyone sharing their stories.

 

[MinIreland]

Some people find therapy or counselling helps them cope and pace better, which may enable them to reduce the harm caused by over exertion, but that doesn't mean ME/CFS is caused or perpetuated by psychological factors.

I'm glad psychological therapy helped you. But not all psychological therapy is helpful or risk free.

My experience with CBT when I was finding it hard to cope with ME/CFS scuppering my career was dreadful. It took me a couple of years to work through the harm caused and sort out for myself how to cope with major changes to my life.

Yes, definitely not all therapy is helpful or risk free (that's why I emphasised I was only making a point based on my personal experience). For example, I have done CBT and it did me harm, because it triggered me to have even more internal debates, trying to rationalise how I felt.

 

[Kitty]

What are the assumptions involved with the term 'concurrent with'?

I think the idea it is that it doesn't carry strong assumptions. It's a way of noting a coincidence in case the information's meaningful (now or later), but acknowledges it could simply be a coincidence.

 

[Peter T]

What are the assumptions involved with the term 'concurrent with'?

[Cross posted with @Kitty ]

Sorry I worded it badly. I meant there are assumptions in saying it was ‘triggered by’ though for me given there was no clear distinction between the end of my glandular fever (mono) and the start of my ME/CFS (though obviously not diagnosed until later) means I personally am happy using ‘triggered’.

I had intended to communicate that the only theoretically neutral way of putting it would to use either ‘the onset was concurrent’ or ‘associated with’.

 

[Peter T]

Also, what do you mean with this phrase? "However, over time any tendency towards spontaneous recovery becomes slower and weaker".

I believe, without any objective evidence, that, if I can sufficiently reduce my activity, avoid PEM that triggers long term worsening, and avoid anything else that will worsen my health, such as infections, my ME tends to spontaneously improve, but that over the last thirty years any such spontaneous improvement has become slower and much less marked.

 

[Peter T]

What I was hinting at above is the possibility that, though we have no treatments, we can create the best opportunity for spontaneous recovery, though there is no guarantee that any such recovery will occur, nor that if does occur it will be any where near full recovery, nor that instead we see deterioration.

 

[Utsikt]

Understood, Trish. That makes sense. My intent was to illustrate that there is such a wide variety of 'triggers' and also that what helps one person wouldn't necessarily help another.

As Jonathan explained, we don’t know if there even exists ‘triggers’, and we have no way of knowing what they were.

We also have no idea about what helps anyone because anecdotes lack control groups and correlation doesn’t imply causation. It’s easy for people to convince themselves that X helped, even when C has been shown to not help in clinical trials. @EndME summed that up very well here recently:

E

Post in thread 'Long-lived plasma cell (LLPC) theory - Similarities between CFS and Lupus?'

Wednesday at 12:31 PM

Why can’t we state that it might work for a subgroup?

Isn’t it the same for e.g. Rheuma. A. or M.S. ?
- certain drugs work for some groups, others work drugs work for another group and some patients don’t respond at all ?

Because you have to establish efficacy on a population level basis first. For the most part, all the drugs that work have been shown to work in phase 3 studies, even when they don't work for everybody (or there is a reasoning why they should work a sensible dose-response curve or something else). That applies to all the drugs that you mention above even if they...

• EndME

• 

 

[Evergreen]

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

I'm answering this as if it now reads "What triggered your ME/CFS?" as clarified in later posts.

A humdinger of an infection, for which I was hospitalised.
At the time, I was particularly happy and low-normal stress because life was just working out well in all areas. Particularly good work-life balance.

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

I think (when I wrote the post) I was thinking more 'improving quality of life' and 'preventing crashes.

I improved initially, and then relapsed and deteriorated for a long time. I had the same approach and attitude during improvement and deterioration, and what would be labelled by some as a "better" approach and attitude for much of the deterioration.

Nothing has helped the ME/CFS itself improve, though a particular set of diet changes might have helped halt deterioration and improve cognition. Could also have been coincidence.

Helpful for managing living with ME/CFS:

• Pacing has been essential in managing ME/CFS
• Getting in a routine with multiple rests during day
• I like meditation for getting better quality rest and for pain
• Stretching for pain
• Addressing treatable non-ME/CFS health issues that crop up
• Stepping far away from a biopsychosocial model of ME/CFS and from alternative health
• Following the science
• Having contact with other people with ME/CFS
• Things like eyemasks, earplugs, noise-cancelling headphones
• Bigger changes to environment if situation and money allow e.g. anything from a really good bedside locker to making a bathroom accessible or remote control blackout curtains

 

[MinIreland]

I'm answering this as if it now reads "What triggered your ME/CFS?" as clarified in later posts.

A humdinger of an infection, for which I was hospitalised.
At the time, I was particularly happy and low-normal stress because life was just working out well in all areas. Particularly good work-life balance.





I improved initially, and then relapsed and deteriorated for a long time. I had the same approach and attitude during improvement and deterioration, and what would be labelled by some as a "better" approach and attitude for much of the deterioration.

Nothing has helped the ME/CFS itself improve, though a particular set of diet changes might have helped halt deterioration and improve cognition. Could also have been coincidence.

Helpful for managing living with ME/CFS:

• Pacing has been essential in managing ME/CFS
• Getting in a routine with multiple rests during day
• I like meditation for getting better quality rest and for pain
• Stretching for pain
• Addressing treatable non-ME/CFS health issues that crop up
• Stepping far away from a biopsychosocial model of ME/CFS and from alternative health
• Following the science
• Having contact with other people with ME/CFS
• Things like eyemasks, earplugs, noise-cancelling headphones
• Bigger changes to environment if situation and money allow e.g. anything from a really good bedside locker to making a bathroom accessible or remote control blackout curtains

Thanks so much for this. Could you explain why you reject the biopsychosocial model? I must admit it still need to gain a lot of knowledge around the science (hence my gratefulness for this forum), but so far, I would interpret the biopsychosocial model as 'a wide variety of vulnerabilities in a human system can 'trigger' ME/CFS'.

 

[MinIreland]

As Jonathan explained, we don’t know if there even exists ‘triggers’, and we have no way of knowing what they were.

We also have no idea about what helps anyone because anecdotes lack control groups and correlation doesn’t imply causation. It’s easy for people to convince themselves that X helped, even when C has been shown to not help in clinical trials. @EndME summed that up very well here recently:

E

Post in thread 'Long-lived plasma cell (LLPC) theory - Similarities between CFS and Lupus?'

Wednesday at 12:31 PM

Why can’t we state that it might work for a subgroup?

Isn’t it the same for e.g. Rheuma. A. or M.S. ?
- certain drugs work for some groups, others work drugs work for another group and some patients don’t respond at all ?

Because you have to establish efficacy on a population level basis first. For the most part, all the drugs that work have been shown to work in phase 3 studies, even when they don't work for everybody (or there is a reasoning why they should work a sensible dose-response curve or something else). That applies to all the drugs that you mention above even if they...

• EndME

• 

Ok, now I start to understand where (some) people in this thread are coming from. If I understand it correctly, the assumption that human system vulnerabilities trigger ME/CFS, in itself has no evidence behind it. Is that correct? If yes, that's an eye opener for me and now I also understand why someone else on the thread (forgive me, I don't remember who) said they have stepped away from the biopsychosocial model.

 

[Kitty]

If I understand it correctly, the assumption that human system vulnerabilities trigger ME/CFS, in itself has no evidence behind it. Is that correct?

Human system vulnerabilities could mean more or less anything, though.

(But it IS quite typical of the sort of approach the BPS cabal uses. Find a meaningless phrase, use it as if it does mean something, and then claim you have evidence based on it.)

 

[Evergreen]

Thanks so much for this. Could you explain why you reject the biopsychosocial model? I must admit it still need to gain a lot of knowledge around the science (hence my gratefulness for this forum), but so far, I would interpret the biopsychosocial model as 'a wide variety of vulnerabilities in a human system can 'trigger' ME/CFS'.

I found stepping away from the biopsychosocial model helpful because treatments based on it either did not help me or did me harm. The hypotheses of what causes and perpetuates ME/CFS in the BPS model made no sense in my case.

In terms of the science, treatments based on the BPS model of ME/CFS are generally ineffective beyond a short-term boost in how optimistically people fill out questionnaires, and there's worryingly consistent patient feedback of harm. That's not good enough. We deserve better.

I think it's entirely possible that a wide variety of vulnerabilities in a human system can trigger ME/CFS. 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.

I also object to the idea that psychiatric or psychological issues are not biological, but that's a whole other conversation.

 

[Kitty]

Apologies if my post sounded a bit unfriendly, @MinIreland (I'm really foggy today). I meant that BPS theorists deliberately use slippery language to make it harder to deny their claims, I didn't mean it to sound as if I was accusing you of doing that.

The biopsychosocial model is a theory that has never been evidenced. Theories and models are a key part of thinking and debate, but people can't claim they have a scientific basis without producing evidence. The PACE trial showed that treatment approaches based on the model don't work for ME/CFS.

If you're a bit puzzled by negative attitudes to it, imagine someone had been testing their model for more than four decades but still hadn't produced any evidence to demonstrate that it worked (or even any sound reasoning to argue why it might). It wouldn't be surprising if everyone got a bit cynical about it.

If they experimented on sick people with it despite the lack of evidence, then refused to accept any responsibility for making them more ill while still claiming it would have worked if only they'd tried hard enough, the response would be more than cynical.