Opinion What are the top replicated ME/CFS findings?

[Kitty]

Might it also be useful to mention the issue Jonathan has talked about, where it's possible some negative studies did look at the right thing, just not in the right place?

If the error is very localised the odds are stacked heavily against finding it, especially when those doing the looking tend to be small teams relying on blood samples for their experiments.

 

[Chestnut tree]

I found this review on NK cell disfunction in ME.

https://pubmed.ncbi.nlm.nih.gov/31727160/

Is this robust enough to speak of NK cell disfunction in ME?

Honest question, do not have a science background.

Edit; and if not, what would it need to become more of a robust finding?

 

[Jonathan Edwards]

Is this robust enough to speak of NK cell disfunction in ME?

Not really. Even if their findings are representative they might be showing NK cells showing reduced function in response to something like TGF beta. The NK cells may be fine.

NK assays are notoriously difficult to interpret. It is hard to see what relevance sleepy NK cells would be to ME/CFS symptoms even if they are sleepy.

 

[Chestnut tree]

Not really. Even if their findings are representative they might be showing NK cells showing reduced function in response to something like TGF beta. The NK cells may be fine.

NK assays are notoriously difficult to interpret. It is hard to see what relevance sleepy NK cells would be to ME/CFS symptoms even if they are sleepy.

Thank you Mr Edwards, for the explanation.

 

[Simon M]

Might it also be useful to mention the issue Jonathan has talked about, where it's possible some negative studies did look at the right thing, just not in the right place?

That’s a good point, but Outside the scope of my introduction: Background to ME, pointing out there’s very little we know for sure.

 

[Daisymay]

As well as EBV as common trigger infection, also enteroviruses, certainly in the past they often came up.

 

[Nightsong]

Unfortunately remarkably little that could be considered robust. A few thoughts:

In addition to Dubbo & the Katz study in adolescents there is also the prospective study by Jason on mononucleosis / glandular fever.

While I personally think that there's insufficient evidence for the NK results the authors of IOM disagreed:

Sufficient evidence supports the finding of immune dysfunction in ME/CFS (SEID). Specifically, the committee’s literature search yielded data demonstrating poor NK cell cytotoxicity (NK cell function, not number) that correlates with illness severity in ME/CFS (SEID) patients and could serve as a biomarker for the severity of the disease, although it is not specific to ME/CFS (SEID).

There was a meta-analysis for the CPET results in 2020 (link) although I haven't looked at it. Evidence for cognitive deficits seems to be very mixed and not really robust enough to include (there was a large meta-analysis of cognitive impairment results in 2022 (link)). The CBF results similarly do not yet seem sufficiently robust to include.

Other things that may or may not be worth a mention (depending on whether you want solely biomedical findings or not) would include the demographics - I wouldn't consider the twin age peak finding robust (being derived only from 2 Norwegian studies) although the significant female predominance is. Economic burden might be worth a mention (could cite IOM or Jason for US; there was also a more recent UK estimate, and an Australian one (link)).

 

[Robert 1973]

Perhaps the most important replicated results we have is that CBT and GET do not have a clinically significant therapeutic effect.

 

[Sean]

Perhaps the most important replicated results we have is that CBT and GET do not have a clinically significant therapeutic effect.

And that is the the most generous possible interpretation.

 

[DMissa]

Perhaps the most important replicated results we have is that CBT and GET do not have a clinically significant therapeutic effect.

I don't want to appear lazy but I will possibly need all of this evidence on hand very soon for something important. If anyone can provide all of the pieces of evidence for this please do because I don't want to miss anything. It is in everyone's interests if I can put forward all of the best evidence.

 

[Sean]

@DMissa

Might be worth starting a dedicated thread for that.

 

[DMissa]

@DMissa

Might be worth starting a dedicated thread for that.

Crossed my mind but I thought that I remembered one recently. Couldn't find it, so I will take this as an endorsement to proceed

 

[Chestnut tree]

Not really. Even if their findings are representative they might be showing NK cells showing reduced function in response to something like TGF beta. The NK cells may be fine.

NK assays are notoriously difficult to interpret. It is hard to see what relevance sleepy NK cells would be to ME/CFS symptoms even if they are sleepy.

Maybe nog the right thread, so feel free to move this to another thread, mods.

But are there any online sources to learn more about cells/immunity if you do not have a science background? Just 2 years of biology in secondary school.

 

[Robert 1973]

I don't want to appear lazy but I will possibly need all of this evidence on hand very soon for something important. If anyone can provide all of the pieces of evidence for this please do because I don't want to miss anything. It is in everyone's interests if I can put forward all of the best evidence.

@dave30th might be the best person to help with this.

PACE, FINE, FITNET-NHS and GETSET, all provide evidence that CBT and GET are not effective treatments for ME/CFS. I would suggest that refs should include Wishere et al’s reanalysis (and subsequent correspondence), and NICE Guideline, including the evidence review and Jonathan’s expert testimony.

Wilshere et al: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

NICE GL: https://www.nice.org.uk/guidance/ng206

NICE evidence: https://www.nice.org.uk/guidance/ng206/evidence

NICE Expert testimonies:
https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760

 

[Sean]

@Robert 1973

New dedicated thread for this info here.

 

[hotblack]

But are there any online sources to learn more about cells/immunity if you do not have a science background? Just 2 years of biology in secondary school.

Loads! I’m in a similar position. A few links here, probably best if we discuss in that thread
https://www.s4me.info/threads/learning-about-the-immune-system.43381/

 

[Jacob Richter]

If we are thinking of expanding the forum library, I think this would be one of the most useful pages to have

Agree!

 

[Chestnut tree]

Loads! I’m in a similar position. A few links here, probably best if we discuss in that thread
https://www.s4me.info/threads/learning-about-the-immune-system.43381/

Great resource, thank you