Search results

Agree. They know what they're doing; they are bored of having to engage with some of the more vocal/organised patient advocates, who are largely on X (and here).

AfME will soon cease social media activity on X. https://www.actionforme.org.uk/news/our-use-of-x/ Interestingly, this seems to be partly due to their having to respond to criticism from more vocal patients on X. That is my reading anyway. From the statement: "A large portion of our Marketing &...

There are a couple of papers and they did a study once via the NHS calling it a 'trial' but that didn't seem to go anywhere. https://bmjopen.bmj.com/content/7/11/e017521

It's the same article every few years, but Raymond still looks like he's living in the 1980s.

There's definitely a lot of bad science / poor papers in this field, and that's largely due to the nature of the illness, being somewhat poorly defined, heterogeneous, and misunderstood. Conflation with normal fatigue is obviously a clear problem and results in myriad terrible papers from people...

It's probably on purpose, given they had almost enough healthy females to match the POTS group.

This is a recent preprint — 2021 in the thread title should be 2024.

Interesting study and a nice, short paper showing that cortisol differences are minor, but there is evidence of low then rising morning cortisol in the LC-ME/CFS group. Seems they haven't controlled for wake time, which is a weakness. Also interesting to note the high prevalence of HIV in all...

At the risk of sounding like a stuck record, I believe those with life-changing disability and illness due to long covid are at risk of having their illness watered down with prevalence rates such as these, which are based on the very lax WHO definiton of long covid (any lingering (>2 months)...

I've been very consistently (5 results) between 1 and 1.6 mg/L.

Is that the same device used in the trial?

Perhaps worth moving this thread to avoid any confusion. This doesn't have anything to do with covid 19 per se. It just happens to be from Pretorius and Kell.

Is anyone thinking of submitting a comment, which is essentially a response to the editor letter?

I did wonder whether this journal was actually peer-reviewed, as I wasn't aware NIHR had their own journals — but it is. So it's unlikely these results will be written up elsewhere.

A 166-page report, in an NIHR journal. How strange. It seems they've not bothered to plot up the results for the primary outcome and instead have presented the results in a table.

Why use 'myalgic encephalitis' in the title and keywords, but 'myalgic encephalomyelitis' in the main text? Can only assume this is sloppiness.

This is an internal event; they usually have something every month. I doubt there will be anyone attending except BACME clinicians.

The problem with the BACME events is that they are always members only.

Just a reminder, or for those that had missed it: I wrote about BACME and the dysregulation 'model' here: https://domsalisbury.github.io/mecfs/bacme_dysregulation/

https://bacme.info/event/severe-and-very-severe-me-cfs-workshop/ Upcoming event: Severe and Very Severe ME/CFS workshop Facilitated by Dr Melissa Sargaison (specialist physician and BACME Board member), Ceri Rutter (BACME PPI Lead) Anna Gregorowski (Consultant Nurse and BACME Chair); Sue...