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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.

Symptoms by definition are what is subjectively reported by the patient. Signs are things that can be seen and/or measured by others. Fatigue is, I agree, a slippery one to gauge, but it is not the only symptom. I agree severity is hard to compare from one day to another, but if you add to the...

I'd like there to be more longitudinal studies that follow patients over a year or more, with continuous monitoring of everything that can be monitored using wearables. That includes motion/steps, heart rate, HRV, and any biochemical wearables like glucose and sweat. Also daily record keeping...

I also have significantly reduced veg peeling and chopping by using frozen veg and some supermarket ready peeled and chopped fresh veg. I try to use some fresh green veg that is easy to prepare like broccoli which is much nicer fresh. I would probably go all frozen veg if it were just for...

Can you clarify what you mean by measuring PEM?

I have read through the paper. They did not find any useful effect from their carefully planned, well supported by experts and individualised exercise program. It's good that they acknowledge that It's interesting, I think, that they used wearable step counters throughout the 3 months and found...

Hi @yannlk, I'm really sorry to hear that. I think this shows up the importance of trials like the one on this thread being done properly with protocols, ethics approvals, expert oversight and watching for side effects etc. SSRI's might be commonly handed out by GP's but they can cause harm...

My solution to the kitchen sit stand dilemma is to sit on a high stool.

That's a pretty good article by Charlotte Blease about the Dragons' Den part of the story. I'm concerned that by repeating all the bad ways pwME have been disbelieved and going quite gently on the CBT/GET criticism without explaining about PEM, I think she misses key points, and leaves readers...