Pathogens associated with triggering ME/CFS - discussion thread

Thank goodness! You saved yourself even more worsening.

I bought myself a stairmaster during that period and used it 4 times. It made me permanently worse! I had to hire homecare to do groceries/errands and sold her my stairmaster.

 

Has anyone ever looked at 'ordinary' corona viruses in ME?

We know that severe SARS and MERS can cause ME-like syndromes. What about non-severe, has that ever been looked at?

And we know the current SARSCoV2 can cause ME-like symptoms, at least for a few months, even in those not severely affected initially.

So is it possible the older corona viruses, those supposed to only cause a version of the common cold, could actually be responsible for many of the flu-like onsets, or even for the presumed non-infectious onsets if people had such mild cold symptoms they didn't even register them?

 

Yes, I've long suspected this. Plus if there is significant latency between the infection and the illness, people will tend to ignore the infection as the cause due to the lack of a blatant temporal association.

 

This post and following posts have been moved from this thread:
Who is Simon Wessely

At the time when SW looked at flu and found no connection I had never heard that flu caused ME. It was believed to be enteroviral. It felt very much like saying elephants were imaginary by looking for them in the wilds of Yorkshire.

He never consulted with any of the ME doctors or bothered with what they had found by experience or asked patients what symptoms they had. He had complete confidence in describing how patients coped with no risk of contradiction because he never asked, just asserted.

CFS in this country was made up by him.

 

I don't know anyone ('in real life') who claims their illness was caused by the flu either. There was the Norwegian study that found excess CFS cases, but it was rare, with 227 reported cases for 113,979 influenza diagnoses (though only 13054 cases were laboratory-confirmed - side note, it shows how much more seriously lab-testing is considered for COVID-19 compared to seasonal influenza.)
https://pubmed.ncbi.nlm.nih.gov/26475444/

0.23% is a far cry from what we see from EBV/CMV/enterovirus/Q Fever, or SARS-Cov-2 for that matter.

 

I think the problem was that people referred to the recurring symptoms, after the original infection, as being "flu-like". They never intended to indicate that the original infection was flu, although it was sometimes interpreted as such. So much is based on miscommunication.

 

The opportunity to ascertain whether ME could be caused by flu was, of course, wasted by Imboden, Canter and Cluff in their 1961 and 1966 papers on the Asian flu epidemic, which studied either 600 or 480 people , depending on which paper you believe. However the follow up period was far too short to come to worthwhile conclusions, although it apparently determined that it was prior psychological vulnerability which resulted in the continuing symptoms.

No prizes for guessing how, and by whom, this evidence was used.

The US Army Chemical Corps was throwing money away on such research.

 

I got it after an upper respiratory tract infection. Came home from work with sore throat then fever etc Always called it flu but dont know if that is different.

 

Lots of things cause respiratory tract infections and some of them can be awful but the actual flu virus is rarer. Tests for a particular virus are not done routinely. It is only done if you are in hospital or there is some complication that anyone bothers to find out.

"Summer flu" is usually caused by enteroviruses as the flu virus is commoner in winter.

It never matters much which virus you have until it is suddenly very important for some reason but then it is too late

 

There is a huge range of viral upper respirator tract infections. Some of them are dismissed as mere "colds", but some of those "colds" can give you a month long nasty flu-like illness.

Epstein-Barr virus can also cause upper respiratory tract infections too (just FYI).

 

Merged thread
Just wondering...

The Dubbo study looked prospectively at people who caught EBV, Q fever and Ross River virus, and found that roughly 11% in each group went on to fit criteria for CFS at 6 month.

Do we have reason to think that only some bacteria/viruses can cause ME/CFS, while others can't?

If so, would/does that tell us anything about the disease?

 

As far as I am aware pretty much all infections associated with ME/CFS are intracellular. That applies to all viruses but only a small number of bacteria and 'intermediate' organisms like rickettsia (name has probably changed).

The obvious hint is that the relevant immune response is mediated by CD8 T cells supported by CD4 T cells rather than B cells making antibody supported by CD4 T cells. In rheumatology post-infective disorders are similarly almost exclusively associated with viruses and intracellular bacteria.

Another group of cells that might be relevant are gut MAIT T cells. These are a bit like NK cells in not having the same fine antigen specificity of CD8, CD4 and B cells. CureME found changes in MAIT cells in ME but that has not been replicated as far as I know.

 

Thanks, Jo. Does that help us move forward in any way to understanding mechanism, or thinking about treatments? Or prevention, when people have acute viral infections? Including prevention of worsening in PwME?

 

Are they wanting illnesses that have been 'proven' to be triggers through research, or are patient reported triggers acceptable?

 

The list looks a bit like a second hand impression of what someone has heard, as I think you are suggesting. My question would be why is someone writing a list like this if they are not well-informed on the matter? Perpetuating popular memes about certain viruses is not very helpful.

These are not 'common illnesses'. They are viruses. Cytomegalovirus infection may be fairly common but as a recognisable illness it is very small print. I have never come across someone being ill with Herpes 6 or 7. Maybe paediatricians do.

The information I have had is that it is well recognised that persistent fatigue occurs after glandular fever (i.e. late onset clinical EBV, not infantile primary EBV), with a small number of cases warranting a longer term ME diagnosis (I do not equate PVF to ME). Much the same is well recognised after Coronaviruses Sars 1 and 2. It may be documented for major influenza epidemics but that does not necessarily transfer to regular flu waves. It is also documented for a number of illnesses that are uncommon in the UK at least (Q fever, ebola). In practice, beyond glandular fever and Covids all I think we can say relevant to most people is that many people report onset following an apparent viral infection.

 

I was going to mention shingles as a possible trigger. I don't know if mentioning chicken pox and shingles is necessary.