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I'm not sure what ANZMES have in mind for a patient registry, but they really do need to be collaborating with Paula Lorgelly. I have been talking with her this year about strengthening the coverage of ME/CFS in the Long Covid registry, so that the registry could work for both Long Covid and...

Yes. The Science for ME forum committee agreed to provide a letter of support. This is an example of the sort of thing the forum can potentially do to assist researchers whose aims align with the forum. We didn't post it on the forum at the time, as it was included in an application for...

Thank you @Nightsong, an interesting read.

I can see it's about a book: Being Ill On Sickness, Care and Abandonment Neil Vickers, Derek Bolton It sounds interesting. Here's one review: I expect it helps to explain the stubborn attractiveness of the psychobehavioural hypothesis and 'functional disease' labels to so many people...

Here's a GWAS for MS that found a genome-wide association with an odds ratio of 1.25. The gene that association was in is the target of an MS drug, so presumably there was a real biological association. What exactly does the odds ratio mean in this context? A person with MS in the sampled...

Those odds ratios don't look very flash. e.g. the top GWAS hit had an odds ratio of 1.06. I'm very ready to believe that there is a lot of noise in the grouping of people into 'Long covid' and 'not Long Covid', but, even so, given the likely large number of 'significant loci', is an odds ratio...

Yes, I too wish advocates would stop using the 'complex multi-system disease' phrase. It doesn't mean anything helpful. As we have discussed elsewhere, the word 'complex' often implies a psychobehavioural component. Although we don't know what causes ME/CFS, that doesn't mean that the cause is...

We've added these links to the first post of the thread: Discussion of the coroner's Prevention of Future Deaths report: starts here Direct link to the coroner's Prevention of Future Deaths report

But members don't have to vote on major issues. If you want members to just vote at the AGM for the trustees and maybe if there is a significant change to the constitution, you just put that in the constitution. ANZMES appears to be saying that "member involvement is required for major...

I've mentioned elsewhere how I tried to exercise my way back to health with twice weekly intensive pilates sessions. I just got worse. The studio would send out email newsletters each month, with a story about their client of the month, how they had transformed themselves with, of course, the...

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...