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Association Francaise du Syndrome de Fatigue Chronique, Appelation Internationale: EM/SFC We now have an organisation news thread for this CFS organisation. They have published a guide to pacing.

I think getting more local and national organisations added to the list of supporting organisations in the Open Letter thread is very important. We are working on a list of ME/CFS and Long Covid related organisations and whether they have been contacted or not, with a view to doing more...

There's a great comment by @Peter Trewhitt on David's blog - it summarises the issues well.

US based authors The title is difficult to understand and probably misleading. As far as I can see, there is not in fact proof provided of the mother having been anything other than a concerned parent trying to get help for a child with a wide range of health issues. The test is also...

It's tempting to make fun of this paper, but these people appear to be claiming to be experts in Long covid and are treating significant numbers of people. Which is, I don't know, sad? They appear to have no doubts about the that constitute their control treatment. I guess they missed the...

In case you were wondering... ('among other things' is not specified)

A chart of the increase in signatures over time. It doesn't include signatures from today, NZ time. You can see things have plateaued. Please do keep sharing the petition link https://chng.it/xwQ9bGgcdL if you can. Here's the list of countries represented, and number of signatures. 57...

Thanks so much to the European ME Coalition (EMEC) for supporting the letter. :emoji_bouquet:

I've made a thread to discuss what I think is that important finding of the reduced oxygen extraction in the people with Long covid: Muscle oxygenation [as assessed by NIRS - Near Infra-Red Spectroscopy]

This study found reduced oxygen extraction in the thigh muscles of people with ongoing symptoms after Covid-19 infections as compared to healthy controls: Structural and functional impairments of skeletal muscle in patients with [PASC], 2023, Colosio et al. The measure is "Δ[HHbMb]peak (%...

If only 1 in 6000 people have the HPP condition, then there probably won't be many people diagnosed with ME/CFS who actually have HPP. So, of course, they may not have much impact on the average ALP levels in people in the UK Biobank with an ME/CFS diagnosis. But, finding those people could...

70% of PASC reported fatigue. I'm plodding my way through these findings incredibly slowly today. That's the Physical Activity Questionnaire results. Not much difference between the controls and PASC, even after PASC onset. I wouldn't necessarily be so trusting of what people report about...

University of Pavia and University of Milan. We've been seeing a few Long Covid studies from Italy. As SNT says, only 11 people with Long covid, non-hospitalised, which is probably too small to find many issues, given that they didn't even stratify on the presence or absence of PEM. 54 years...

Thanks very much for writing about the petition @dave30th. The petition has had 73,000 views. (A substantial number of those have been by me, but, even so.) Here's the link: https://chng.it/xwQ9bGgcdL

I haven't been following this, but I thought, just from what I had heard in the media, that paxlovid administered in the first week had a material impact on the chance of a severe infection and so was a good thing to do. EndME, why do you say that it probably doesn't help anymore? Is it that...

There are 281 comments so far. I don't think the number is displayed anywhere, but I can download them to a spreadsheet.

I'm finding it hard to make much sense out of findings around levels of SARS-CoV 2 antibodies. I think we've seen papers claiming, higher, lower and no different in people with Long Covid. Within this paper we have higher levels But, at the same time, there were enough people with Long Covid...

I found this to be a great patient account, useful for new patients and for health care professionals to read. It conveys the awfulness of the illness, while not eliminating hope. I'm sorry that you have been through so much @Wilhelmina Jenkins; I hope you, and all of us, get some answers...

I'm assuming this means they found nothing much? Not feeling enthusiastic to spend time on this paper.

https://medlineplus.gov/lab-tests/alkaline-phosphatase/