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

[MinIreland]

I have 2 questions for everyone. It's not scientific, but perhaps we can find patterns.

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

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

I'll go first.

1. I have always had a vulnerability to get overly fatigued. I'm not sure why, but it could be a combination of lots of antibiotics as a child in combination with my personality and anxiety (which I developed since moving house when I was 11). I have also lived with chronic pain (hip) since I was a child. I've always had a pattern of 'go go go' and then crash for about a week. Stressors increased over the years (ambitious jobs, emigration, having children, multiple surgeries). Anxiety increased. In 2020, I got a new, very senior role in a nebulous environment. Stress and anxiety increased, insomnia appeared. Early menopause kicked in. I seriously crashed for the first time in 2021 and a second time in March 2023. I had COVID in July 2023, which has made the fatigue and brain fog worse.

2. Meds for anxiety, psychotherapy (exploring beliefs and patterns), prioritising, planning, and pacing. Giving myself permission to be more flexible and being compassionate (instead of critical) towards myself. Trying new 'non cognitive' things ) gardening, painting). Increasing my knowledge of stress, anxiety, CFS.

I hope you'll be willing to share as well. Perhaps I can then find a way to summarise our findings. Thanks so much!

 

[Utsikt]

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

A covid infection (edit: triggered it)

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

Nothing has helped. A lot has coincided with making me worse. Pacing coincides with not getting worse.

Did the crashes as a child feel like your crashes now (but maybe less severe if you are more severe now)? I have no idea if that’s the case, but we do hear about people like that from time to time.

 

[Trish]

1, Cause: unknown biology.
Possible genetic predisposition, given family history.
Trigger: onset sudden following a stomach bug, cause not investigated.
No psychological association with predisposing, precipating or perpetuating my ME/CFS.

2. Nothing has helped, pacing helps to slow deterioration, but hasn't stopped it.

 

[MinIreland]

A covid infection.

Nothing has helped. A lot has coincided with making me worse. Pacing coincides with not getting worse.

Did the crashes as a child feel like your crashes now (but maybe less severe if you are more severe now)? I have no idea if that’s the case, but we do hear about people like that from time to time.

Thanks so much for your reply and I'm very sorry for the situation that you're in. I think it's interesting that we interpret 'better' differently.
Based on your response (and please, correct me if I'm wrong), you interpret 'better' as 'level of recovery', while I think (when I wrote the post) I was thinking more 'improving quality of life' and 'preventing crashes.

I wonder if that distinction is because your illness started very 'sudden' (COVID) while I have deteriorated over time (and then the new job, menopause and COVID) pushed me over an edge that has changed my baseline (because yes, my crashes feel similar as the ones since my twenties but a) worse (symptoms such as fatigue, anxiety, brain fog, temp issues, emotional instability are stronger) and b) I no longer recover from my crashes (I have always functioned at a high level and now my baseline (as in, I feel relatively ok given illness) is in no way comparable. As a child, my crashes were more physical (throat infections, fever).

 

[MinIreland]

1, Cause: unknown biology.
Possible genetic predisposition, given family history.
Trigger: onset sudden following a stomach bug, cause not investigated.
No psychological association with predisposing, precipating or perpetuating my ME/CFS.

2. Nothing has helped, pacing helps to slow deterioration, but hasn't stopped it.

Thanks so much, Trish, for your response. It's so hard to understand why an illness like ME/CFS would appear after a stomach bug! I have never heard that before. That must be so difficult to accept (I feel my situation is 'easier' cause I can see my own part in pushing my system over the edge, if that makes sense).

 

[AliceLily]

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

A bad cold triggered my ME onset. I did have a rare reaction to a medication for an infection 10 years beforehand that caused a permanent change in homeostasis whether this was a stepping stone along a path to ME I don't know.

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

Nothing has helped except pacing to keep from worsening.

 

[Utsikt]

Thanks so much for your reply and I'm very sorry for the situation that you're in.

Thank you! I feel for your situation as well.

I think it's interesting that we interpret 'better' differently.
Based on your response (and please, correct me if I'm wrong), you interpret 'better' as 'level of recovery', while I think (when I wrote the post) I was thinking more 'improving quality of life' and 'preventing crashes.

Yeah, I took it to mean an improvement in the underlying illness. Lots of things have helped me live better with the degree of ill health that I’ve got at any give time, but I keep that separate.

To me, an improvement has to entail at least on of the two of 1) can do more without PEM and 2) less everyday symptoms with the same activity.

Avoiding anxiety lets me do more of something else, but it doesn’t increase the total amount, so it isn’t an improvement of my illness. Just of my life in general.

I wonder if that distinction is because your illness started very 'sudden' (COVID) while I have deteriorated over time (and then the new job, menopause and COVID) pushed me over an edge that has changed my baseline (because yes, my crashes feel similar as the ones since my twenties but a) worse (symptoms such as fatigue, anxiety, brain fog, temp issues, emotional instability are stronger) and b) I no longer recover from my crashes (I have always functioned at a high level and now my baseline (as in, I feel relatively ok given illness) is in no way comparable. As a child, my crashes were more physical (throat infections, fever).

That sounds reasonable, although it might also just be that I’m a bit pedantic.

Living with that must have been incredibly frustrating.

 

[Kitty]

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

I've no idea. It just slowly materialised.

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

Nothing has ever helped me improve. I'm not sure if that's even feasible. [ETA: posts were added clarifying this while I was writing it!]

What has made me less ill, for more of the time, is giving up work and shifting my perspective on what I really need to do.

Showering every day, cooking individual meals, keeping the house tidy, and ironing absolutely anything all went out of the window long ago—though not soon enough. Ditto keeping up with acquaintances, going to social events because I "ought" to, and making firm commitments further ahead than the next day.

 

[Yann04]

Caused by COVID. Nothing has helped really, pretty much on a downwards spiral since I caught COVID.

Early on in my illness I thought pushing thru helped, now I’m bedridden. So I don’t think it did!

 

[Verity]

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

For a long time, I thought it was a virus, but it occurred to me recently that there’s no way I could’ve differentiated between a virus and PEM at the time, so I can’t be sure. But I did have high inflammatory markers initially like you’d expect shortly after a virus.

I was also extremely stressed, which I doubt helped.

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

• Pacing
• Aggressive rest therapy - basically taking regular full rests (no noise, eyes closed, dark room) at short enough intervals that I rest before I feel like I need to. This helps a LOT.
• Salt
• Ribose - but I no longer take this because there’s apparently some possible dementia risk
• L-carnitine - prevents/lessens PEM if I take enough before an activity
• Corticosteroids - but that seems to be just me. I’ve never found another patient who improves for months after a round of steroids like I do, just patients who improve while taking them.
• Heat - like a heating pad or portable heater. This helps with the wired feeling and insomnia, and it helps my aggressive rest sessions feel more relaxed and I think makes them more effective because of that.
• Eating a good amount of protein

 

[jnmaciuch]

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

No obvious trigger, it was just a slow decline over maybe a year while I was in college. I had undiagnosed ADHD and was really struggling to keep up with a very rigorous courseload, but part of that struggle could also have just been the early effects of the illness.

It's possible I could have had a flu at some point in college that triggered it all, but since I didn't have a sharp decline I didn't take note of it and now it's so long ago that I don't remember. Also had panic attacks up to when I was in college, but have since resolved those and it didn't seem to make much of a difference with my ME/CFS.

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

I seem to be one of the lucky few that can tolerate stimulants well (probably something about the pre-existing ADHD). They moved me from moderate homebound to mild and able to work/take classes remotely.

I also happened to get a huge benefit from malic acid supplements which drastically increase the amount I can do without PEM, but come with some other side effects that I have to balance. Super B complex and coq10 help with cognitive function but only if I'm also taking malic acid, for some reason. This also seems to be another case of good luck since malic acid doesn't seem to do much for many other pwME (though I've gotten word from a few who noticed an improvement from it).

Pacing definitely helps, and making sure that I can limit the days that I have to travel to campus.

Before I found the malic acid, the only thing that helped minimize PEM was eating a huge meal of protein and fat before activity and taking NSAIDs pre-emptively and through the duration of PEM.

 

[bobbler]

I have 2 questions for everyone. It's not scientific, but perhaps we can find patterns.

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

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

I'll go first.

1. I have always had a vulnerability to get overly fatigued. I'm not sure why, but it could be a combination of lots of antibiotics as a child in combination with my personality and anxiety (which I developed since moving house when I was 11). I have also lived with chronic pain (hip) since I was a child. I've always had a pattern of 'go go go' and then crash for about a week. Stressors increased over the years (ambitious jobs, emigration, having children, multiple surgeries). Anxiety increased. In 2020, I got a new, very senior role in a nebulous environment. Stress and anxiety increased, insomnia appeared. Early menopause kicked in. I seriously crashed for the first time in 2021 and a second time in March 2023. I had COVID in July 2023, which has made the fatigue and brain fog worse.

2. Meds for anxiety, psychotherapy (exploring beliefs and patterns), prioritising, planning, and pacing. Giving myself permission to be more flexible and being compassionate (instead of critical) towards myself. Trying new 'non cognitive' things ) gardening, painting). Increasing my knowledge of stress, anxiety, CFS.

I hope you'll be willing to share as well. Perhaps I can then find a way to summarise our findings. Thanks so much!

What do you mean by find a way to summarise our findings?

 

[MinIreland]

What do you mean by find a way to summarise our findings?

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

 

[MinIreland]

No obvious trigger, it was just a slow decline over maybe a year while I was in college. I had undiagnosed ADHD and was really struggling to keep up with a very rigorous courseload, but part of that struggle could also have just been the early effects of the illness.

It's possible I could have had a flu at some point in college that triggered it all, but since I didn't have a sharp decline I didn't take note of it and now it's so long ago that I don't remember. Also had panic attacks up to when I was in college, but have since resolved those and it didn't seem to make much of a difference with my ME/CFS.



I seem to be one of the lucky few that can tolerate stimulants well (probably something about the pre-existing ADHD). They moved me from moderate homebound to mild and able to work/take classes remotely.

I also happened to get a huge benefit from malic acid supplements which drastically increase the amount I can do without PEM, but come with some other side effects that I have to balance. Super B complex and coq10 help with cognitive function but only if I'm also taking malic acid, for some reason. This also seems to be another case of good luck since malic acid doesn't seem to do much for many other pwME (though I've gotten word from a few who noticed an improvement from it).

Pacing definitely helps, and making sure that I can limit the days that I have to travel to campus.

Before I found the malic acid, the only thing that helped minimize PEM was eating a huge meal of protein and fat before activity and taking NSAIDs pre-emptively and through the duration of PEM.

Can I ask what the dudey effects of malic acid are? I have never used it so far and just ordered it (based on another thread in this forum). Thanks!

 

[Jonathan Edwards]

I don't have ME/CFS. I listen to members' stories because I think they may provide clues to mechanisms for the illness but I don't think anybody's illness has "a cause".

The DecodeME project has confirmed that although there are genetic risk factors the contribution of genetics is modest. We all live in much the same environment. We meet the same infections (except maybe Ebola). Stress, pain, children, surgery, jobs and so on are everywhere, in every family. But ME/CFS is quite uncommon.

What that almost certainly means is that ME/CFS largely arises at random, by chance, even if a bit more often in people with some genes and shortly after an infection. Most other modern diseases are the same.

We have a great tendency to look for causes and patterns but I think that may more often cause harm than help. Of all the avoidable causes of harm I see in medicine the most obvious is psychotherapists looking for patterns and destroying families as a result. Supportive dialogue may be very helpful but that is different.

People with ME/CFS are in a mess because of professionals on all sides dreaming up causes without testing to see whether their theories are valid. In general, ME/CFS is a matter of bad luck. Making it better will have nothing to do with that. I never asked about people's lives much as a doctor because I thought it was prying and could not see how it would help me solve medical problems. Towards the end of my career I began to wonder if I had been mistaken. But having talked to hundreds of people with ME/CFS I am pretty sure I was entirely justified.

 

[MinIreland]

I don't have ME/CFS. I listen to members' stories because I think they may provide clues to mechanisms for the illness but I don't think anybody's illness has "a cause".

The DecodeME project has confirmed that although there are genetic risk factors the contribution of genetics is modest. We all live in much the same environment. We meet the same infections (except maybe Ebola). Stress, pain, children, surgery, jobs and so on are everywhere, in every family. But ME/CFS is quite uncommon.

What that almost certainly means is that ME/CFS largely arises at random, by chance, even if a bit more often in people with some genes and shortly after an infection. Most other modern diseases are the same.

We have a great tendency to look for causes and patterns but I think that may more often cause harm than help. Of all the avoidable causes of harm I see in medicine the most obvious is psychotherapists looking for patterns and destroying families as a result. Supportive dialogue may be very helpful but that is different.

People with ME/CFS are in a mess because of professionals on all sides dreaming up causes without testing to see whether their theories are valid. In general, ME/CFS is a matter of bad luck. Making it better will have nothing to do with that. I never asked about people's lives much as a doctor because I thought it was prying and could not see how it would help me solve medical problems. Towards the end of my career I began to wonder if I had been mistaken. But having talked to hundreds of people with ME/CFS I am pretty sure I was entirely justified.

Thank you for this helpful contribution. I think it's important to be precise with language, so perhaps I should have said 'perceived causes'.

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.

 

[Kiristar]

I have 2 questions for everyone. It's not scientific, but perhaps we can find patterns.

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

My Cause
I suspect a faulty immune system

My trigger
Probably EBV infection age 20, but I did have chicken pox earlier.

My Progression
Probably surgery for severe Endometriosis and contracting Viral Meningitis age 42. I was getting worse a couple of years beforehand though and it's hard to say whether that was solely Endo fatigue or also an ME fluctuation or ME progression.

Psychology
I had a deep episode of depression age 30 but this post-dates my trigger and is linked to life events.

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

2. Improvement /Trajectory

Behavioural
Meditation probably helped me stay on a plateau for 6 months while I did a form of GET. Then I further deteriorated.

Pharmaceutical
LDN, D ribose help with energy, but I need to use with caution and still pace.

LDA definitely helps me cognitively, probably reduces PEM impact but again I cannot increase activity

My Trajectory
Ultimately nothing has stopped a very slow gradual decline in functioning, mostly hidden by seasonality and fluctuations. I fear becoming bedbound alot.

 

[Peter T]

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.

 

[AliceLily]

I never asked about people's lives much as a doctor because I thought it was prying and could not see how it would help me solve medical problems. Towards the end of my career I began to wonder if I had been mistaken. But having talked to hundreds of people with ME/CFS I am pretty sure I was entirely justified.

Sorry, I don't understand this last part. You mean you don't think it is necessary to pry into our full history of illness or did you mean prying into something apart from that?

 

[Jonathan Edwards]

Sorry, I don't understand this last part. You mean you don't think it is necessary to pry into our full history of illness or did you mean prying into something apart from that?

I meant prying into life circumstances rather than the biological history of the disease. I stuck to bio rather than psychosocial.