Researchers have identified an abnormal physiological response to exercise, altered immune function, changes in the bacteria in the gut, and impaired energy production at a cellular level.
I have a couple of questions related to this statement:
A. Would you agree that this statement provides a good up-to-date summary of what the current findings of research show?
B. What research papers would you suggest are used to provide evidence to each of the findings? Ones that senior physicians in NZ would respect and find good information (if they bothered to read them).
These papers have been suggested to me:
1. Re "abnormal physiological response to exercise"
[...]
These have been suggested as good general articles for sharing with a NZ audience. Would you agree?
- Sweetman E, et al. (2019). Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnostics (Basel). Jul 10;9(3):73. doi: 10.3390/diagnostics9030073. PMID: 31295930; PMCID: PMC6787691. https://www.mdpi.com/2075-4418/9/3/73
- Marshall-Gradisnik, S., & Eaton-Fitch, N. (2022). Understanding myalgic encephalomyelitis. Science, 377(6611), 1150–1151. https://www.science.org/doi/10.1126/science.abo1261
Technically speaking the sentence is correct. No claim of causality is made and researchers have indeed identified all these things, plus many more. However, this doesn't mean the findings are all solid. Nor does it mean they're of any practical consequence. For example, the gut bacteria findings are pretty non-specific and nobody knows what they mean let alone how or even if they should be treated. On the other hand the sentence doesn't include altered autonomic function which has somewhat better evidence and can to some degree be treated.
Answers to your questions depend a little on what you're trying to achieve. Reading between the lines - and I could be completely up the pole here - you're wanting to convince some 'senior NZ physicians' (whatever that means?) that ME should be treated and managed as a biomedical rather than a psychosomatic illness.
In that context I would primarily focus on the "abnormal physiological response to exertion" aspect and back this up with a combination of papers. The Moore et al paper looks good (on a quick skim) but it's about subjective experience of PEM so it would need to be supported by another paper highlighting the non-fakeable findings from the repeat CPETs. A third addition could be a paper about the cognitive deterioration after exertion. I think taken together they make a good case.
For the other claims I don't think it's worth going into them individually as individually none of the studies are strong. It makes more sense to just include a recent broad review - which would list all those findings anyway - to make the point that there are a lot of abnormal findings even if most of them remain under-researched.
Not sure what the best review for this purpose would be.
Looking back at the thread for Sweetman et al, I seem to have thought that the review itself was reasonably ok - but that was 4 years ago - but that the abstract was ambiguously worded. Which is a problem when so many people just skim the abstract. On the other hand it being an Otago paper may cause some positive nostalgia in NZ physicians leading them to look upon ME with more sympathetic eyes? Ok, maybe not.
Looking back at the thread for the Gradisnik-Fitch paper, it doesn't look like I registered/read the paper when it came out but it didn't fare well with other members. I don't know if that makes it any worse than other reviews, I don't recall any particularly wonderful ones. It's probably a case of picking the least bad one, preferably with an author who enjoys name recognition and respect in senior physician circles.
If the aim is to save pwME from being treated with behavioural and psychological 'therapies' I would additionally highlight the NICE evidence review showing that, irrespective of the ultimate cause of ME, those therapies just don't have good evidence despite numerous trials attempting to prove effectiveness. The exception being the LP where there's little research so we have to fall back on a combination of logic - there's no known mechanism by which it could stop the abnormal response to exertion - together with the precautionary principle - patients reporting harm from overexerting themselves.
In summary, if I had the spoons to search them out - which I don't, this post has taken me all day to construct already - I would look for:
- a recent paper highlighting the non-fakeable findings from the repeat CPETs, either a review or a solid study with a solid literature review section
- a paper about the cognitive deterioration after exertion challenge (dimly recall there's at least one such study)
- a broad review of ME research findings to date, ideally by a well-known and respected author
- the relevant sections of the NICE evidence review & guidelines, or a review paper summarising them (can't recall if there is one)
Maybe somebody else can help out here?
