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I'm assuming that DecodeME [GWAS - common variants] would have clues -- highlighting that the mechanism is immune related? E.g. in Alzheimer's [GWAS] the (3) genes that eventually turned up are immune related - took several DecodeME (GWAS) sized studies to find those genes in Alzheimer's...

@Lena Kjempengren re the harms that the psychological approach can bring this quote (from a nurse) comes to mind- "The bastards don't want to get better"...* Could you imagine the outcry if cancer patients were sent to CBT --- penalty is to stop their social security benefits --- and the take...

@Lena Kjempengren you could highlight the rituximab trial methodology (all clinical trials are registered). Specifically highlight that the trial used actimetry (Fitbit type devices) to measure activity levels pre&post intervention (rituximab). That trial is roughly 10 years old - so if...

Isn't there a Greek drink which would provide this --- retsina!

@Lena Kjempengren it occurs to me that this* could be a useful way to rebut CBT i.e. if the outcome is this poor then how could it be justified to fund it using public money/tax? Also, check out the thread on this site re this** "ME Association is funding a study led by Prof Sarah Tyson of...

So this is (Norwegian) guidance on fatigue i.e. rather than ME/CFS? @Medfeb @Lena Kjempengren might be a good idea to check the outcomes from the Aberdeen University study on fatigue - (again?) this relates to fatigue generally? https://www.abdn.ac.uk/news/16714/#:~:text=Innovative research...

Oh you need to highlight that subjective outcome indicators are unreliable - Google something like "measuring activity levels Actimetry versus self reported outcomes" - also check out the PACE results- "According to these results − 354 m after CBT – patients would still be ill enough to be put...

Really don't feel I understand this topic but I think the issue is controlling for deconditioning i.e. you'd need controls with very similar lives/activity.

DecodeME might just provide clues e.g. infectious trigger (leading to POTs) may be reflected in genetics assessed via DecodeME.

The system now in the Northern Ireland (devolved/regional Assembly) is that the relevant scrutiny Assembly committee [scrutinises the Department] posts the Department's proposals --- to implement X, --- and asks for comment. So basically it's similar to the system Jonathan outlined i.e. the...

"directions to relevant resources" - obviously the NICE review is a place to start* I've been surprised that it includes a review of "pharmacological-interventions"** and there's e.g. 1 reference to carnitine. The nonpharmacological management*** includes the Lightning Process. The information...

Jonathan explains these things much better than I do (see above) but perhaps look at PACE - subjective outcomes indicated that people improved post intervention [CBT & GET]. However, an analysis of the other outcomes (objective) indicators showed that there was no change i.e. re hours worked or...

possibly unrelated --- at best tangential --- the interest in cerebrospinal fluid & ME/CFS revolves around intracranial pressure - which is difficult to measure but high (correct?) intercranial pressure would result in headaches (correct?) and other symptoms (like what?). Low intercranial...

Yea heard something about this ---[medical Doctors] are retiring earlier. Incentives like this can be considerable --- continue in the job and you're out of pocket --- an incentive to retire!

When I looked at these graphs I thought --- basically there's no difference between the two groups -- just the sort of "noise" you'd expect (measurement error). Then I looked again &, as per your comment, they're the wrong way around i.e. contradicts the claim! We can't demand that he goes but...

I gather, from what a neighbour has told me, that there's quite a bit of work involved in maintaining your registration - demonstrating you've done (clinical) work --- even some actual tests?

If a public service [NHS England] is launched then it's reasonable to ask that appropriate monitoring is included --- in fact that's Government policy (even if it rarely happens) i.e. to ensure the policy is an effective use of public money. I don't see this as low level --- this is the service...

Sounds like a good idea. I attend these meetings - https://worldmealliance.org/2023/08/standing-strong-global-me-community-unified-in-support-of-nice-2021-me-cfs-guideline/ Simon Chandler also attends (representing Forward ME who in turn represent Action for M.E.*) I can try to discuss after one...

Action plan?

I was wondering if post election we ask a parliamentary question re how these interventions are being evaluated; in particular are real world outcomes, such as ability to participate in education and work monitored, e.g. up to 5 years post treatment? I recall @Jonathan Edwards saying that having...