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The Bateman Horne Center have a one page guide to using HRV for monitoring in ME/CFS. https://batemanhornecenter.org/wp-content/uploads/2023/05/Heart-Rate-Variability-HRV.pdf It includes what is HRV, How to track HRV and

This is what they say as an introduction to their online application form for participants: https://docs.google.com/forms/d/e/1FAIpQLSewtEub3_hQe1DhgxzJAaNMQZSTq_dSU9A14p2fySCWYh0JEQ/viewform Quote: RemissionBiome Self-Experiment Application The next phase of RemissionBiome will include 50...

I think there is also the practical problem of getting patients to buy and use consistently wearables that can be expensive and inconvenient for people already struggling to keep their heads above water financially and in all aspects of life. As I understand it the primary purpose of Sarah...

It seems from that small thread on Twitter that the only clinicians involved are the patients' own doctor who they will badger into following the so called protocol, prescribing the drugs and doing any follow up, so no consistency or overall ethics approval. I can't see any NHS doctor being...

I guess White et al. thought they had the British media so much in their pockets they didn't need to ask the SMC to do a roundup of quotes from 'experts' And this article is not 'research' it's an attempt to pick a fight with NICE, probably partly so they can get another round of ME bashing in...

Have you seen it? Might be interesting to see what it said.

Since all the usual suspects are authors on this article, perhaps the SMC couldn't find any 'experts' to write in support of it. They wouldn’t want to only be able to supply to the media criticisms of the article.

Excellent. And very quick off the mark. Obviously written by someone with thorough knowledge of the guideline and evidence reviews. Thank you. Now what's the betting the journal will reject it.

I wish I had your optimism. They may have no more to say in research journals about NICE, but they, and particularly Wessely, have so much power in the NHS, and BACME is still all over the place, they will go on with their 'rehabilitation' and 'individualised treatment' just as before. I had...

That Daily Telegraph headline sounds like a parody article. I doubt even White et al would like it. Anyone have a copy of the article.

Can you add a link to that article, @Sly Saint

Good point, @Kitty, I get restless legs sometimes at night. That would probably register on a leg worn step monitor as me getting up and going for a long walk. Mind you, I'm likely to do a lot less then next day as it's is still exercise beyond my limit.

Excellent as ever. Thank you, @Brian Hughes.

I've been entertaining myself in a bout of insomnia composing alternative headlines for the media on this mess. NICE confirms exercise IS harmful for people with ME. Researchers put careers before ME patient safety, says NICE. Dotty professors' feeble defence of failed ME research...

This is that published article. It's been with the journal being reviewed for 6 months.

I'm really sorry to hear that @rvallee. I hope it's a short term downturn.

Makes one wonder about the motivation of the person who took on being the chair of ForwardME when the Countess of Mar retired. But that's probably for another thread. United Kingdom: News from Forward-ME Group

Perhaps he's as frustrated as we are by their comms incompetence.

I'm not sure that's true. I would agree that it's no use as a diagnostic sign, but we already know that some people with mild ME/CFS would overlap with sedentary healthy people in number of steps. But it could still be a useful part of an objective outcome measure for a clinical trial, since...

I can't advise you what you should do, as I don't know the details, but I think I would at least raise the neurological symptoms so they can be in your notes and you might be lucky that the doctor takes them seriously.