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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.

That seems to be misleading. They are talking about the incidence of long Covid in people already suffering Long Covid before being vaccinated, so they are really saying being vaccinated didn't lead to recovery from preexisting long Covid. So they should surely have said ... vaccination or...

Not sure it's fair to blame Charles Shepherd for this. He's not their media person, he's their medical advisor, and his responses to articles like this are usually very good. I agree the MEA need to get their media act together. I am not impressed by their long term chairman's efforts.

That's a brilliant article, @dave30th on top form. Those researchers are making complete fools of themselves over this.

Charles Shepherd's response is fine. It's the Tweet that's the problem. I agree their comms people need to get the message straight. This Tweet is not helpful.

I've got access to a copy of the full paper and started reading it. Just reading the first page it's as full of holes as a sieve. One thing that particularly struck me in their lengthy and unconvincing argument about whether PEM should be included in the diagnostic criteria for the...

Given that it's basically a club for clinicians who work with ME patients, I wouldn't expect you to be able to join. However, perhaps you could offer to be a speaker at one of their meetings.

Thanks, @chillier, your experience sounds very like that of the Norwegians who shared their experiences except, sadly, most of them went on believing and pushing through until they were much sicker. I'm glad you realised it was a scam.

I've just read the PEM guide. It's hard to pin down what I find wrong with it, but it doesn't read right to me. There are some good bits, but it's all based around the idea that PEM is a temporary extension or worsening of fatigue, with a mention of a few other symptoms. It's all too bland and...

In order to be accepted on an LP course you have to pass an interview. I'm sure part of that must be asking if your health is improving, so they can select people on the up anyway. Then of course a mix of brainwashing about what they are allowed to say to others about their health, with the...

It looks like a 'wellness' website with emphasis on a mix of general healthy living stuff like diet, exercise, sleep, avoiding stress etc, along with the usual mix of meditation, yoga etc. The stuff in the tweet about ME/CFS is not helpful, with advice to gradually increase exercise and no...

In the UK there's the option of the Open University where you do all your study at home. I did one and a half degrees that way spread over about 15 years, but you do need to be able to keep up with deadlines with a bit of leeway on getting extensions. In the end I had to stop because even with a...

From their website: https://remissionbiome.org/planned-protocol/ I was prescribed amoxiclav once and had to stop it. I had the most horrendous abdominal pain and the diarrhoea was unbelievably bad. It's amoxicillin, which I'm fine with, combined with clavulanic acid. According to Google the...

Agreed, though I thought their made up theories about why CBT and GET work were quite enlightening in terms of how their minds work when confronted with evidence that patients aren't deconditioned, and that after CBT/GET, fitness levels don't improve. So they dismiss the deconditioning theory...

This is their website with a so called protocol which is just warnings to people not to experiment, and a treatment schedule. They are also asking for donations on GoFundMe. https://remissionbiome.org/planned-protocol/ My reaction is like yours, @InitialConditions. Neither of them is a...

Well at least the article does some good by making it clear the BPS approach is bust. And it includes warnings about people promoting unevidenced treatements. I have no problem with individuals sharing their experiences and gathering information about what people are trying so long as it's...

It's part of a special issue on Post Covid rehabilitation in the journal Physical Medicine and Rehabilitation Clinics of North America The section on treatment seems to be just a copy of a guideline we have a thread on that is basically GET with a bit of telling you to slow down if you get...

And still they get the definion of PEM wrong. It's not just worsening fatigue.

For those without access to Tweets, here's some of the converation with Adam Gaffney: davidtuller @davidtuller1 · 17h Hey @awgaffney, are you aware that the authors did not report their one objective finding--a null result for actigraphy at the end of therapy. So you're ok with the fact that...