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I have deleted my tweets in the past. Good to do so if you can when you've made a mistake.

Given how much heart rate variability and heart rate vary over the day for many of us, measurement over a single 7 minute interval while 'resting' in a clinic where no doubt all sorts of other measurements were being done is hardly the best way to determine between group differences. It seems...

I would add Coronaviruses SARS-Cov 1 and 2. There are others that have post acute infection syndromes like polio, Lyme, Ebola etc Also chicken pox. In fact I don't think there is evidence it has to be one of a specific set of infections. Lots of us got sick after acute infections that weren't...

:banghead: How can they be so clueless.

I suspect the members of BACME would regard the professional associations for their profession, ie OT's, physios, CBT therapists etc as their professional organisation. BACME seems to be more of a grouping of people across health professions who treat ME, for them to share ideas produce...

:) Please do! Maybe just a link to your excellent website and book, Long Covid physios and ask David Putrino and Todd Davenport to comment, and sit back and watch the sparks fly.

As I thought, it's more like market research than scientific research. Funded by the company that markets the supplement. 23 people recruited online filled in questionnaires on a website before and after taking the supplement for 2 months. Subjective outcomes, no control group.

That abstract reads more like a marketing advertisement than a scientific abstract.

Thank you @Naomi10. Another thoughtful article. I'm also continuing to shield as much as possible and have avoided Covid so far. It means my daughter and I get less help than before the pandemic, and have very few visitors.

The author, Sorrel Kinton has done and excellent job in quite a short article. Though I think she's too kind to the woman selling the ear seeds. I don't think ex fellow sufferers should get a free pass to get away with selling junk to pwME at a huge mark up to profit from sick people less...

Seems a very thin case for suggesting a treatment is relevant to ME/CFS.

Again, I'm sorry, I have to disagree. PEM is both reduction in activity AND feeling much sicker. For example if I were too fatigued to get out of bed, I would presumably still be able to read, listen to the radio, enjoy a meal, chat to a friend. I can't do any of those things during PEM because...

For a different persective on the Sussman study praised so highly by MERUK, see this thread: https://www.s4me.info/threads/a-personal-letter-to-the-nih-team-researching-me-cfs-about-their-pem-study-2020.17148/

Some posts have been moved to NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)

I find it increasingly bizarre that papers are still being published four years after the pandemic started, so at least 3.5 years after Long Covid was known about, that still recommend 'therapeutic exercise programs' as the solution. No mention in the abstract of PEM.

I recommend a freezer with drawers and/or shelves rather than a chest freezer. We had a chest freezer first and it was a nightmare to find things, stack them sensibly and lean down into to retrieve things. Now with a drawer freezer with each drawer labelled with the type of contents it's...

Interesting to hear that Putrino's clinic have gone down the microclots route and telling patient that's what's causing their symptoms.

And especially not a paypal account in the name of one individual who could simply take it all for themselves. I'm not suggesting this individual would do that, but I agree that asking for money requires proper protections.

I'm against using fatigue as a proxy for PEM severity. If you want to know about PEM severity, by all means include fatigue, but for me at least other symptoms are more disabling when I'm in PEM. When in PEM, I wouldn't say the problem for me is greater fatigue, that's PEF. For me PEM is about...

Can someone on Twitter ask them for more information, eg a website for the conference and who is behind the organisation.