McGregor's Hypothesis of ME/CFS

[Learner1]

Well, they aren't omniscient. They may have mistaken 'inability to produce sufficient energy' with 'feels like insufficient energy'. I don't think the experts actually measured energy availability, especially for 'mental fatigue'.

https://www.ncbi.nlm.nih.gov/m/pubmed/19436827/

https://www.ncbi.nlm.nih.gov/pubmed/22189081

https://www.mdpi.com/2077-0383/6/2/18/htm

 

[Wishful]

Those papers focus on muscle metabolism, which may not apply to mental fatigue. For ME, they might be measuring a common secondary effect. There are those of us who don't feel an inability to produce sufficient energy. We can do physical activities at pre-ME levels. Some of us just find it harder to work up the motivation to make the effort.

 

[Inara]

So, McGregor seems to find that pwME use more nutrients than

I hear what you're saying, but I'm not so sure about that statement - the mechanisns here sound mighty familiar.

Thanks for the papers!
I don't agree that "chronic fatigue syndrome (CFS)" is characterised by fatigue - unless there is a difference between ME and CFS? And CFS means fatigue and ME sth else...?

 

[Learner1]

Each set of criteria say fatigue is a part of it. The difference between ME and CFS is that the British prefer the term ME, while CFS was more from the US. The US IOM committed called it ME/CFS.

 

[Inara]

Each set of criteria say fatigue is a part of it.

That doesn't mean ME is characterized by fatigue. MS and cancer patients can have fatigue as a symptom, but the diseases aren't characterized by fatigue. And there remains the issue with what fatigue really means.

I wonder, could have cancer/MS/etc been understood by studying fatigue? Studying symptoms may increase the understanding of a disease, but will researching a symptom that is not central reveal the mechanism? Furthermore, fatigue is a symptom of many diseases, and not very specific.

In my personal view (there are other opinions here which is fine) I think that muscle issues are one central part of ME, and I think McGregor's et al paper/hypothesis might lead to understanding a central mechanism - who knows? Would researching unspecific fatigue do the same?

 

[Learner1]

The US IOM, now National Academy of Sciences, looked at 9,000 papers and calls it ME/CFS, with the last part being "chronic fatigue syndrome."

I am seeing one of the top specialists in the world, and had fatigue as my top symptom, and he diagnosed me with ME/CFS. I see 2 neurologists, so there are definitely CNS features in my illness, too.

In the US, it's ME/CFS. I keep hearing Europeans dicker about it being ME vs. CFS, which seems counterproductive. It seems there are research papers coming out regularly from all over the world, Europe, Asia, Australia, and the US, using the label ME/CFS. And, PEM, post-exeerional malaise is a cardinal feature of ME/CFS, which involves fatigue.

Having had family members with Parkinson's, cancer, autism, and menral illness, what I've learned is that none of these diagnoses are pure and cast in stone. There are variations, different etiologies and different treatmrnts that work.

What we've learned about ME/CFS is that there's an infection variant, an autoimmune variant, a structural (CCI, etc.) variant, with metabolomic abnormalities, and vsriations and combinations of all of these. And, while we'd a like a magic pill that fixes us, personally, I don't believe that one pill is going to fix all of us with all these individual variations. Recently we learned that surgery can be a fix for some.

Everyone's disease is individual, with differences in individual genes, immune factors, environmental factors, etc. And it's likely there will need to be a robust toolbox of tools to apply to individuals to help them to a cure. It's vexing, but likely true...

As for cancer fatigue, I've attached a couple of papers discussing it. I question whether it's really so different - there are definite similarities. I haven't looked into MS fatigue, but I'd wager there are similarities there, too.

 

[Wishful]

What we've learned about ME/CFS is that there's an infection variant, an autoimmune variant, a structural (CCI, etc.) variant, with metabolomic abnormalities, and vsriations and combinations of all of these.

I'm not sure about all the variations, but they all seem to involve some immune system activation ( I assume the structural problems trigger some cell damage and thus immune activation), so that does seem to be one common element. There isn't an obvious common malfunction of the immune system, so I wouldn't put too much research resources into that. I accept that metabolic abnormalities are common, but I'm not convinced that they exist in all PWME. If it's some cellular function that is responding inappropriately to signals from the immune system, with a positive feedback loop, it would make sense to apply or stimulate immune system activation factors individually, and see if any of them trigger an increase in symptoms. Hopefully it's not multiple factors, which would require silencing the factors individually.

If it is one common factor, with individual responses, then one treatment should work for most of us. I keep in mind that my temporary remissions were an abrupt switch in states, which implies something very simple: one or two factors, rather than a large collection of factors with various response times. Now that I think about it, it pretty much rules out microbiome causes (too slow reacting) and nutrient imbalances (also too slow). If you're considering something as a potential core cause of ME, ask yourself whether it can switch state over the space of a few minutes. If the answer is 'no', you're on the wrong track.

Something like CCI or gut problems can certainly contribute to the severity of ME by causing chronic inflammation, and the patients might get relief from resolving those issues, and maybe even switch out of the ME state, but that wouldn't be targeting the core cause of ME, and those 'cured' patients might be vulnerable to retriggering ME from other immune activation events.