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I think we have seen at least 2 recent anecdotal reports of serious worsening following stellate ganglion block, and clinical trials being small and unimpressive. I'm sorry I don't have the energy to search for them.

Your link doesn't work for me. I googled Charity Commission BACME and got straight to their page. The BACME website gives information about board members, what BACME does etc.

Some of us don't live anywhere near a major university research hospital where research and leading clinics are likely to be centred. I fear we will be left out of any specialist doctor led care services which are being rightly described as needed. The difficulty with travel becomes magnified...

I thought Forward ME was an organisation run by and for some of the UK national ME organisations. I don't think BACME is part of it. I hope someone can clarify. I understand though that BACME have been very involved in the government planning for ME/CFS provision.

I think it's clear from the article that her trial of brain training seemed successful to her at first, but when she relapsed again she looked back and realised the remission simply coincided with her usual pattern of remission followed by relapse. She acknowledges it's woo just like all the...

When I read your news of today's meeting today I felt like giving up. Then I thought, no actually there is work to be done. You have made a good start on that with your letter to BACME. Our fact sheets are helpful too. So what is needed now is some way to persuade the people running the...

That felt like our last hope. It's devastating but also unsurprising. We are up against too many people with power. And I lay a significant amount of blame on the MEA with its active support of BACME clinics and its ridiculous funding of the Tyson clinical tool kit. How can we hope to get...

I'm a bit confused. Is Long Covid Support a problematic charity and Long Covid Advocacy a separate thing?

Online recruitment, sample far too small for epidemiological study. As soon as I saw the article title I guessed it would be Jessica Eccles research group. The conclusion is far too certain for such weak data.

The Tyson project was initially awarded £90,000 by the MEA. They were recently awarded another chunk of money to expand the project. I think it's another £50,000, to expand the Clinical Toolkit. I'm not sure whether that means more questionnaires, or associated materials and supporting...

I suspect when people call for multidisciplinary clinics they are imagining seeing a range of doctors from different specialisms to investigate and treat their symptoms in different parts of the body. They wait months or years, only to find it's an online group short course run by one of a...

I think it's a good article, spelling out the reality of living with severe ME/CFS/LC. And the risks of trying the latest fashions in unproven treatments.

So from the perspective of Sivan's Long Covid Clinic he would presumably claim the rehabilitation is restoring people to health after Sars-Cov-2 infection. Which is nonsense since they have no evidence they are restoring anything.

We asked about that in the early stages of development of another of their questionnaires that tried to ask about function. They insisted their idea was better as it was asking about what people have actually done, ratiher than what we think we can do, or something. The resulting questionnaire...

Yes, I hesitated to fill it in because the invitation seems to imply it's just for people currently using an app, which would tend to be people who think they are useful, or haven't been using them for long, so haven't necessarily realised how limited they are. I decided to do it because I...

Oh, sorry, PEM is asssessed by the separate PASS (post activity symptom scale) questionnaire created as part of this multi PROMs project. I wouldn't expect that to necessarily be mentioned in this paper which seems to be all about the statistical shenanigans that allegedly make this...

They explain that by having a separate questionnaire about PEM. I agree it makes no sense to do it that way.

I assumed it was meant only for people who use apps, so they can report on their experience.