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Discussed in this substack article by one of the authors : From Nefarious Networks to Legitimate Funding

How a Questionable Research Network Manipulated Scholarly Publishing Leslie D. McIntosh, Hélène Draux, Elizabeth Smee, Cynthia Hudson Vitale OBJECTIVE To understand the broad impact of one questionable network on publishing, including the publishers, countries, and institutions involved and...

Sure, I get your approach and argument for the line that you’re pursuing. You make it very convincingly and I’m not taking issue with that. What I’m less convinced about is that it’s therefore pointless to look at other ideas, at there being no benefit in also looking at other potential...

Isn’t one factor here that we see these mechanisms for activity in healthy people but don’t see them or know why people are more fatigued when ill? Not necessarily with ME/CFS but generally. Additionally almost everyone describes their ME/CFS fatigue as very different from this normal fatigue...

If they can explain how this will improve the care people with ME/CFS receive, particularly those who are moderate or severe, I’d be very surprised. I’ve yet to see a problem I or others here have experienced that could be helped by us filling out an activity questionnaire like this or goal...

Congratulations and well deserved @Tom Kindlon And I’ve only just read the rest of this thread, which is also extremely heartwarming, great work to all involved, especially @Robert 1973

And given that acetylcholine which has come up various times, so I can see it being possible there’s a mechanistic theory. But I can’t help but feel it’s a bit more of a punt…

That looks like this may have been from an earlier application as the date is 2024 and the Research Ethics Committee gave an ‘Unfavourable Opinion’ and possibly asked for further information. I can’t find another or updated application though so not sure what to make of it, but presumably they...

Interesting to compare this to previous use of Raman spectroscopy to differentiate between healthy controls and ME/CFS patients (including by severity) which didn’t include an exercise test...

That was my initial thought too but looking into it, they seem to be used more widely as proof of identity.

This may be useful as an alternative photo ID, it looks as of they can verify with a referee such as a GP surgery or social worker. I may look into this a bit more although they seem to only last 3 years https://www.postoffice.co.uk/identity/pass-card

That would possibly be a good broad question, what are the aims of the trial?

Absolutely agree @Sasha and I may have phrased things poorly. I was trying to make a point that it’s often not the name of something which informs people, it’s the information about the effects of the medication (in conjunction with trust in the person prescribing or running the trial). So at...

Others have covered most things. It may not be necessary to know the name of the drug (I’d want to, but many people are prescribed things without knowing much from the name) but understanding what it should do (mechanism) and potential side effects as well as what support is in place for those...

I was unable to renew either my passport or drivers license so no longer have photo ID which is starting to be problematic. Officially you have to surrender your license if you have a condition which means you are unable to drive, which more severe ME/CFS is. So there may be issues there...

“AI stethoscope causes heart failure” - some tabloid, probably.

I’m not sure if the discussion of symptoms is linked to attempts at differentiation from depression but from experience someone who is depressed may spend prolonged periods inactive, lying down or say they have pain, they may have OI like problems, chest pain or increased HR on activity (linked...

Exactly. It makes me think many who make the comparison don’t understand depression as well as not understanding ME/CFS. I understand to an uninformed observer they can look similar but there are very clear differences. Ask 100 people who have clinical depression what they would do tomorrow if...

Congratulations Chris, Andy, Sonya and the rest of the team, well deserved and great to see some money going to supporting the ongoing work.

The ME Association awards Decode ME the Howes Goudsmit Award 2025 https://meassociation.org.uk/2025/08/the-me-association-awards-decode-me-the-howes-goudsmit-award-2025/