Search results

Although we don't know if fMRI is measuring a real effect (correct?)--- if it is then these folks would need to demonstrate that CBT and GET --- undo that problem. So if fMRI is validated then I reckon that would wreck a lot of CBT and GET careers!

Decided to post this on Twitter - basically @JonathanEdwards ideas - unattributed!

@Adam pwme you have some contacts in the Lyme & Log covid communities i.e. via Twitter. Since Nath [NIH] reckons ME/CFS, Lyme & Log covid are basically the same then there may be an opportunity to join forces to lobby for a "good fMRI study" & "serious muscle study like that of Wust". The NIH...

@EndME & @Braganca - you highlighted WASF3 - this Tweet was brought to my attention

Decided I'd ask NIH whether they'd follow through with this paper i.e. in the (NIH) ME/CFS Research Roadmap Priorities? Thanks for the insight & suggestions @JonathanEdwards

I recall that Nath is on record as saying re Lyme, ME/CFS & long covid - if you solve one then you solve them all. So this is the "great unifying theory" -- post infection your brain tells you that you can't do stuff & in some cases that persists i.e. a biological abnormality. So is this...

Wow, that's really interesting & would explain why they have been liberally dosed out by the irresponsible!

Bone thinning?

Interesting ---comorbidities --- cause or consequence or unrelated? If unrelated then presumably those with that [co-occurring] disease have the same incidence of ME/CFS as the rest of the population -- 0.4% or whatever? I think the problem with PEM is that it's based on a questionnaire ---...

I agree. Interesting though (for me) that they struggled to find "true ME/CFS" i.e. many (/most?) didn't meet the criteria. I think Jonathan's comment, re this "grey" area being useful, is interesting.

Don't know e.g. "dysregulated cholinesterase" (see Jonathan's comment) was raised re Gulf War syndrome ---

Thank you very much for the insight. OK my standard post (no need to reply!) would this be expected to have a genetic signature i.e. DecodeME or a rare genetic variant (whole genome sequence) study? EDIT - "dysregulated cholinesterase" - "Gulf War" syndrome comes to mind! Further EDIT(!)...

I wonder if Nath found cases where it looked like ME but was "X" and "X" is treatable?

"For the NIH study it was much bigger than the studied cohort." --- NIH study? EDIT - the Nath (NIH) study? Thank you very much - I'll need to think about your reply (you're way ahead of me - great!). I think I noticed sleep studies - another option?

Has someone posted this from Twitter?

@JonathanEdwards @SimonMcGrath grateful if you could highlight research areas which you consider should be funded i.e. to suggest to NIH. I'm planning on suggesting a rare variant (whole genome study) i.e. looking at families with more than 1 member affected (and at least one severe) plus a...

Oops @TomKindlon - I replied to Tom Kindlon's Facebook post (highlighting need for research) with this post*. *"Hi Tom, re research - NIH are looking for suggestions re what ME/CFS research to fund - think they need to be in by the [EDIT - 8th] March (next month). I intend suggesting a family...

I wasn't suggesting it was - more that I can't really see why people are interested in separating MS from ME - surely it's relatively easy to diagnose MS i.e. measure the level of the (myelin) degradation product in the blood?

I recall that the American Army MS study, i.e. which indicated EBV was usually the cause of MS, used a biomarker - degradation of myelin. So I'm always a bit surprised re discussion of separating MS from ME.

Article on Health Rising - don't know if there's further/new data --- hoping you guys will analyse! EDIT - OK skimmed the article & here's an extract: "UK researchers reported they have already replicated the 2019 results and have done so not just with ME/CFS patients and healthy controls but...