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This thread is for a list of sub-national US ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. Massachusetts ME/CFS & FM Association - forum thread Minnesota ME/CFS Alliance New Jersey ME/CFS...

This thread is for a list of sub-national UK ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. Chester MESH self help group Leeds ME Network ME North East Norfolk and Suffolk ME Patient/Carer...

The Science for ME committee has written a letter of support for an ME/CFS research initiative. If a researcher wanted a letter of support from the forum, I expect the committee would consider a request. If it became a regular thing, we could perhaps develop some formal criteria. As Kitty...

I've put the data into an excel spreadsheet . There is no relationship between the data in Table 2 and Table 3 for PSC1. The abstract correctly reports a positive difference between intervention and controls at 12 months for the people classed as moderate of 0.91. (I make it 0.92: change...

One and a half cups of cooked oatmeal or three packets of instant oatmeal are reported to provide 3 g of beta-glucans. Intakes of around that much are regarded as good for heart health. This trial had participants receiving 250 mg of beta-glucan daily. So, I make that the equivalent of 4...

Ah, ok, thanks SNT

We've seen dodgy papers from Castro-Marrero's lab (click on the tab top left) - it seems to be a bit of a factory for producing papers on supplements for diseases that have no useful treatments. Maybe there is something real here but I wouldn't bet on it.

It looks like a nice study, well-explained, with the major problem being the one that @EndME mentioned. The authors too recognise it. Interestingly, they seem to have plotted flow-mediated dilation and BMI and didn't find a result, so possibly there is something going on here beyond...

I'm not sure I understand that. A loss of FXN results in glycolysis which promotes an inflammatory phenotype in microglial cells. Whereas itaconate has anti-inflammatory properties, but it's reducing FXN, which is the same direction as a loss of FXN which supposedly prompted the...

For sure there is progress. But it is slow. The BACME survey shows that - many of the clinics have just changed a bit of their terminology to be 'NICE Guideline Compliant' and carried on with business as usual. And that's the services that replied to the survey. That survey shows that the risk...

For international and national level organisations, pretty much 50% of the ones we know of have signed. There are some assumptions in that - e.g. I've treated OMF as one organisation as the decision not to sign for now was made centrally, even though there are Australian and Canadian branches...

Fantastic, thank you @rvallee.

I think in terms of national level organisations we are doing really well, outside of the US. I'll calculate a rough percentage a bit later. In terms of sub-national organisations, I think there are still a lot of UK local organisations that we could pick up just by contacting them. We aren't...

CBT? page 59 BACME asked if the CBT offered was compliant with the NICE idea of being supportive and not fixing false illness beliefs. Only 28 of the services replied, and even some of them were indicating that they weren't fully on board. BACME conclude that things are fine, but I think they...

Compliance with the NICE Guidelines Page 53

To me it is madness that many specialist services aren't actually diagnosing, but most are offering mindfulness sessions that can be otherwise accessed at most community centres if people actually want that. Eye Movement Desensitisation and Reprocessing - what is this? Sounds like nonsense.

Vague on what's being offered. I find it amazing that specialist services are so inadequate when it comes to diagnosing, whereas so focussed on providing 'therapy'. Finally, the bit we have all been waiting for - BPS or something useful? From page 48 Yeah, vagueness that provides plenty of...

This sounds pretty dire: (I started out with the intention of just reading the summary, but somehow missed when it finished. This is going on longer than I intended. ) 30% of the services don't offer diagnostic services! Page 40

There's a bit I can't copy, but it notes that there has been an increase in children only services, from 3 in 2018 to 8 in 2023. 70% of adult services are medium or large services. The majority of children represented sin the survey were seen in two large services. BACME note that large...

Great video. Both Elinor and Anna are fantastic.