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Thank you hotblack, that is what I am looking for. I'm sorry that you have those persisting joint/muscle/tendon problems. Please tell us more that you think might help people to know if you feel inclined. I found this resource...

Does the 'malaise' relate to pain here? Because I thought malaise was a more general term, covering a feeling of being unwell. If malaise relates to the combination of nausea, OI and pain, I'm not sure that that is right either. Nausea isn't a big feature of my illness, even when in PEM. That...

Thanks for explaining that, chillier.

Posts arising from the discussion about the Learn About ME webinar have been moved to United Kingdom: Learn about ME - webinar for GPs

I'm interested to know what people with severe (and very severe) ME/CFS and their carers have found useful with respect to preventing negative physical consequences of prolonged immobility. Some of the negative physical consequences I am thinking of, other than deconditioning/muscle wasting...

Thanks AliceLily. I agree that we don't want a troupe of people lining up to provide their professional expertise regardless of whether it is wanted or needed. A core team could be just a consultant and a specialist nurse. It's just that I want a person with ME/CFS who is having a really hard...

I'd add something like 'of the two components contributing to the acronym' to the end of the first sentence. It's just, for readers who don't think about ME/CFS and ME and CFS every day, it might not be immediately clear what the 'neither' refers to. Noting that there are two components helps...

Sorry if I am too late with this, but it seemed to me when I read it that inclusion of 'treatment' in that first sentence is needed to make the second sentence true. Rvallee expanded on the reasons. So: "Worryingly, not only has the psychological medicine approach failed but its proponents have...

Thanks @forestglip

33. Gold JE, Okyay RA, Licht WE, Hurley DJ. Investigation of long COVID prevalence and its relationship to epstein-barr virus reactivation. Pathogens. (2021) 10:763. doi: 10.3390/PATHOGENS10060763 PubMed Abstract | Crossref Full Text | Google Scholar Forum thread: Investigation of Long COVID...

That's a helpful article, I think. BBC health reporters: Philippa Roxby and Smitha Mundasad Some useful comments from Baroness Finlay; DecodeME was mentioned, with a comment from Chris Ponting. Thanks to the people with ME/CFS who fronted up.

It was paywalled, so I couldn't see how they recruited. But, I thought the assumption that the bias towards recruitment for hypermobility would have crept in was pretty safe. Having read the excerpts, I still think that. These people devised the study thinking that hypermobility was important...

Posts on the UK Delivery Plan have been moved to UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

That material is laughably incorrect in so many ways. And yet I'm sure that they have people beating a path to their door willing to pay plenty in the hope of being cured.

:D exactly.

1. Find 27 patients with a diagnosis of FND, a diagnosis of anxiety and who seem to have hypermobility. 2. Find 27 healthy patients without any of these issues 3. Give both groups questionnaires covering somaticisation, anxiety and hypermobility 4. Find that the patient group ticks more boxes...

The elevation of GFAP seems fairly subtle when the mild and moderate/severe participants are combined and compared with unexposed participants and with people with other sorts of injuries. The elevation is much more pronounced in the moderate/severe group. Oddly, the levels in the...

Ah yes, I got confused with the 'Request Permission' heading. Here's information about how they worked out if TBI was present or not: They reviewed medical history data in order to define who had a TBI, so it does seem likely that there was some circularity. A momentary loss of...

:D Did the bonsai enjoy the outing?

We've seen some hints that GFAP may be raised in Long Covid, but it is difficult to disentangle the impact of the acute disease and hospitalisation. The Peluso paper with a good sized cohort seemed to find that GFAP was only elevated early on in PASC: But, did the PASC people actually have long...