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Nice to see the donation from Iceland. I hadn't realised that Norway has those islands so far north until I saw them highlighted with mainland Norway on the donation map. Svalbard - I'd heard of it. There's the Svalbard Global Seed Vault there. That's exciting @dave30th. Is there something...

Based on prospective studies of post-infection illness, there is a declining curve of people still sick over the two years following onset. Typically, from memory, it's around 10% of people infected with certain trigger diseases who still have symptoms that significant affect daily life at 6...

2023 workshop. I'm sure a great time was had by all. e.g. Item 2: Why do more women suffer from PVS? These topics probably provide some clues on future research papers. e.g. Item 3: It is often said that attitudes to the illness may influence outcomes. Is it possible to measure these in...

New thread for the fact sheet here: World ME Alliance Fact Sheet on ME

I think it's pretty good in most respects. Some common problems: I don't know why they don't use ME/CFS, which seems to be the standard term. And, that damn word "complex", which means whatever you want it to mean. There's no acknowledgement that recovery rates are high initially - there's at...

Yes, this study looks ok to me too, written well, designed well, clear and consistent benefits. Iranian research. A supplier is mentioned as providing the melatonin and placebo tablets, but there are no conflicts of interest declared by the researchers. Even if they did have a connection with...

Oh, I think they got that memo, and the one after about using surveys that don't actually measure what the title says. And the one about gaslighting patients so that they do indeed believe that their personality or childhood is faulty prior to administering the survey. And the one about how...

There's quite a lot to this study, a lot of adjustments and assumptions that need to be understood when interpreting the findings. I mean, I think it's been done well, but it's surprisingly complicated. Re the hospitalised controls: Re the type of ME/CFS patients: They use a washout period...

Figure 2 gives the long list of psychological variables that can be correlated with the illnesses they see as psychogenic, and then pointed to as causal, and targets for intervention. These people have had long enough to prove their theories, at least with respect to ME/CFS, and for most of...

I'm baffled too. Putting aside the insurance companies and CBT app sellers who have a financial reason to minimise the problem, why do these people believe the BPS idea that us just being more positive, and setting goals will make the difference? Is it that it makes them feel safe, because...

It's interesting to note that 49/55 of the PCS-ME/CFS are female, but only 35/51 of the PCS are female. They only assessed hand grip in females and had a lot of drop outs at follow-up, only 37 PCS-ME/CFS and 25 PSC. So, the results are interesting, but also messy. There's quite a bit in...

A relatively low level of POTS and orthostatic hypotension was identified in both PCS-ME/CFS and PSC at 6 months (there is a problem with the maths; 5/42 for POTS in PSC is reported as 7% - actually 12%; 5/44 for POTS in ME/CFS is reported as 11%). At followup, none of the PSC who had POTS or...

106 patients with persistent symptoms following a Covid infection examined, 55 of those met the CCC ME/CFS diagnostic criteria, presumably at 6 months (baseline). They are the PCS-ME/CFS patients. The remaining 51 are PCS. This is an interesting study as they followed up at 9 to 16 months and...

It seems so. Actually it's a bit more, and a bit worse than that, because they then go on to say "and we need to get these people who are participating less to participate more". It's very much like the BPS GET paradigm - "these sick people are doing less exercise; to make them well, we need...

Israeli research. The problems with the logic in that abstract would be laughable, if these people were not doctors that people go to, desperate for some help. Yup.

@Madbeggar, @Yessica - are you aware of the site linked in the first post? Maybe there is something useful there? There seems to be a major gap in support for people with ME/CFS in the US. I'll make an In Memory thread for Lily Silver, it sounds as though she was a lovely person. Thread here.

Sounds as though this was the first of multiple funding rounds, accounting for less than half of the funding. Perhaps there were problems with other projects?

That's a great tweet @Caroline Struthers. For sure, as a pilot of 'stakeholder engagement in high-profile reviews', it's served pretty much as an example of what not to do. There's a lot of hypocrisy in that "Shared commitment to public involvement".

I agree. Why would anyone with ME/CFS-like Long Covid seek out an ME/CFS diagnosis? It would just make an already stigmatised condition worse. And I can't imagine the LC clinics embracing ME/CFS, as delivering NICE ME/CFS compliant care to Long Covid patients constrains their treatment...