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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...

I wonder whether many doctors are using that post viral code for Long Covid.

This thread might be useful: Mast Cell Activation Syndrome (MCAS) - discussion thread

I have some sympathy for Whitney, in that as a very sick person probably only able to read a little on social media, the last thing he would want is to be confronted with is people attacking each other. However, as a reader of his post, I had what I think is a natural reaction of feeling told...

How can they double blind beetroot juice versus water? And what is the hypothesis this would be testing?

I agree, it should be useful in all sorts of clinical contexts, not just physiotherapy. Many thanks to Physios for ME. And I agree with JemPD about changing noise to sound. NICE followed the advice from patient groups including S4ME to make that important change.

42 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, CTRS. DISEASE CONTROL & PREVENTION, https://www.cdc.gov/me-cfs/treatment/index.html (last reviewed Jan. 28, 2021).

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

I think the most annoying thing about this article is the authors' rewriting of each of 4 womens' words in order to 'explain' them and fit them into their model. The four short excerpts from 4 of the women participants about their experience of living with very severe, bed ridden, tube fed...

And another one: Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence, 2022, Krabbe et al

Another article from 2 years ago by the same team about the same group of 13 young women's experiences. The fragile process of Homecoming - Young women in recovery from severe ME/CFS 2022 Krabbe et al Edit: I haven't read the article this thread is about yet, but have just looked back at the...

Two things of particular note 1. Federovski hasn't understood PEM 2. He hasn't read the NICE guidelines properly. He says: That is not what NICE says. It allows for supervised exercise programs for those who want them, but not graded. NICE specifies that any exercise program must still keep...

I watched it for a few years a long time ago. They are people pitching their businesses to investors. They don't have to be innovative products, just potentially lucrative businesses.