Search results

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...

Yes, I think the major problems of selection bias, even with such a large sample, make conclusions about sex differences, and also subsets based on onset type unlikely to hold. There's a typo there, a missing 'are'. I was disappointed to see this. There are many people I would have liked to...

Interesting re recruitment: Again, I think better wording would be "Females with ME/CFS reported more comorbidity diagnoses..." I think it's likely that females with ME/CFS may be more likely than men with ME/CFS to be given diagnoses like depression and fibromyalgia by doctors. Figure 4...

This isn't science, it's mostly advertising. There were subsequent infections. The patient was given all sorts of drugs, which may have helped, but may also have contributed to the symptom load.

The PPI aspects of DecodeME are truly impressive. I'm not entirely sure that all of the information about PPI belongs in this paper, especially given a separate paper largely covers that ground. I'm genuinely not sure, as perhaps the high PPI involvement is such a step forward, it should be...

So many good things about this paper including the inclusion of people with ME/CFS in the writing team (including a number of our members), the open peer review that is underway, and the plain English summary for improved accessibility. Very minor points that maybe are worth mentioning given...

$50 million boost for long COVID research as parliamentary inquiry hands down report ABC article

Crossposted with Sean: The forum thread on the enquiry is here: Australia: 2022 Parliamentary inquiry into Long Covid and repeated covid infections - report issued April 2023

From an email from the Australia Parliament: Report published: Inquiry into long COVID and repeated COVID infections The House of Representatives Standing Committee on Health, Aged Care and Sport has today published the report for its inquiry into long COVID and repeated COVID infections...

Yes, I have to wonder what the Long Covid advocates were thinking when they agreed to the overly broad definitions of Long Covid, e.g. the WHO definition. They might have thought that a broad definition would help make the problem appear bigger and more important, perhaps they didn't want to...

Even if 50% of people with one definition of Long Covid meet ME/CFS diagnostic criteria at 4 or 6 months, it doesn't mean that a lot of those people won't recover. We know from prospective studies of ME/CFS that a lot of people do recover within a year or so of onset.

Here's a taste of the case studies: I find the certainty in the abstract really remarkable. Just maybe acyclovir in the early stages of an infection might reduce ongoing symptoms. But, there's really nothing here to suggest that anything is going on but resolution of symptoms over time...

I hope members will complete the questionnaire. I think that Long Covid is term that should not be defined medically beyond 'covid-19 causes a number of health conditions with impacts after the acute Covid-19 infection has resolved'. I also think that it is more useful to recognise those...