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I'm sure that it will be of great use to researchers specialising in fatigue. The recipe for research seems to go 1. Prove that your topic is really important ('look, fatigue is a very big problem in all these illnesses') 2. Ask for money to study the topic, inferring that whatever little bit...

Yes, thank you for asking, @Jonathan Edwards. And yes, definitely worth letting Sonya know that a lot of people think she is doing a good job. Yes, as others have noted, there have been a series of 'substantially less than ideal' documents put out by AfME (before the care plan template e.g. the...

I don't think that (that Incorporated Societies must have a high level of active engagement) is really right. The first bit you quoted is clause (2) from this section: So, Clause 89(2) only applies if the organisation's constitution says it does. I haven't looked into it, but I can't see how...

Re the Regulation 28 report, some excerpts (copy posted above by SuffolkfRes) So, responses due by 3rd December. I don't know if the responses are made public? Presumably so.

As far as I can see, the abstract is all we have for now. The abstract has a 'provisionally accepted' note on it.

Given this trial was conducted at the Bateman Horne Centre, it is perhaps surprising to not see Lucinda Bateman's name on the study, as I assume she would have been the lead clinician assessing patients, and that usually warrants an authorship. There were a lot of problems with the initial...

There's no science in the abstract, it's just an advertorial.

Now 11,836 signatures. It's been wonderful to see the recent increase in support. Thanks very much to the latest supporting organisation: Suomen ME/CFS-yhdistys ry - The Finnish ME/CFS Association. If any members of Suomen ME/CFS-yhdistys ry are members here, it would be great to hear more...

They seem to be conflating post-exertional malaise with a worsening of symptoms. They don't seem to have understood what we were saying about the difference between fatiguability and PEM/a crash. They seem to still be treating these things as the same things. Even the name (Post-Activity...

Certainly, the answer is not making 'all stakeholders happy'. That was clear with the NICE ME/CFS guideline. But having people with a range of perspectives on the problem (including experience of severe ME/CFS) on a writing team goes some way to ensuring important things aren't missed. And/or...

It doesn't sound as though the modules should be allowed to stand. I don't think we need 'perfect', but something that does not explicitly state that people with PEM should not be told to exercise is not even 'good enough'. I don't understand why David Strain was given the job, on his own...

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I'm not sure that your disability needs to be mysterious, your initial explanation just needs to be short. Something like 'I have a post-viral illness, the flu that caused it has gone, but I'm limited in how much energy I have, how much I can do in a day'. I actually think that a lot of people...

Of course, 'good intentions' and 'meant well' when combined with 'low effort made to actually understand the situation' result in stuff that isn't helpful. Still, there is the 'It is not a psychological problem as it is often thought to be'. Could be worse. To me, it looked like something AI...

No, she wasn't getting worse, although there were fluctuations. If you were getting worse up until the cyclo started working, then that does make your experience more compelling, I agree. But, and sorry to be annoying, but what if it was the various other treatments that you were trying...

It is very good. I'm so glad you have a father who understands the situation @Yann04.

I think the trick might be in the word 'specific'. As in: There is no treatment that is specific to ME/CFS. But, (in case you hadn't heard), CBT is even used to help people with cancer and MS (and we don't hear them whining about it). That said, it's a bit hard to tell if this disease...

Great analysis Karen. @siobhanfirestone, you are right to point out that the selection criteria for the PACE trial was loose, and that it is likely that some people who didn't have ME/CFS were included, and their recovery odds may be different to a person with ME/CFS (including PEM). Against...

Yes, it is hard to understand. Just for clarity: The 2021 NICE ME/CFS Guideline is NG206. The 2007 NICE CFS/ME Guideline was CG53. Even the 2007 Guideline says

I think Sarah is talking mainly about the ME/CFS guidelines having a problem: but my comment about doctors being able to deviate from the guidelines in order to properly care for the patient in front of them applies to any NICE guideline. I don't think the people involved in the development of...