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I'm sorry that your proposal didn't land on more receptive ground @ME/CFS. I hope other funding can be found for it. Edit: SNAP! @Trish, but I'll leave it for tweet #13

Yes, jumping the gun, but just noting here that the CDC content, along with the NICE guideline, are the two sources I find most useful when having input on clinical guidelines/convincing clinicians. The CDC is very widely accepted as credible, so it was a major win to have great content there...

Two different isoforms. I just found this in passing, I haven't looked into it. Role of C-Reactive Protein at Sites of Inflammation and Infection

That's interesting. It would be good to know if she has been public about still having Long covid. So she wrote opinion pieces with Vogt?

I think this is a good point. I believe that 'pacing' is a term used in rehabilitation, and 'pacing up' is part of the concept in that context. And of course the PACE trial really muddied the waters. We have discussed before what the right term is, and I think a lot of people concluded that...

As I've said elsewhere, a terrific article by @Trish. On Creekside's point about pacing not needing professional guidance, maybe just a pamphlet. I've said much the same myself. But actually a member here said something along the lines of 'hang on a minute, there actually is a role for...

Thank you @bicentennial Your question made me think. It was a useful question.

Again, I think they could have used the input of people with ME/CFS. PEM does not necessarily persist 'for weeks and even longer'. It depends on the person and the exertion event (and probably accumulated consequences from previous exertion events). It's perfectly possible to have the crash...

So, on the left hand side of the figure above, mTOR is inactivated, which allows for autophagy (the clean up of damaged or redundant molecules in the cell, essentially intracellular recycling), which makes for healthy muscle function. They fed a compound - MHY-1485 - to mice in order to...

Graphical abstract

I think this is going to be a really interesting paper and I'm look forward to reading it. The first paragraph is not quite right though: We don't know that ME/CFS is an inflammatory disease. I would not characterise PEM as "persistent muscle fatigue and pain after treadmill exercise". For...

I've thought about your options @bicentennial. I started thinking about BPS trials. So, when a child is in a trial like Magenta, with BPS treatments, should they be informed that the treatment is based on an unproven hypothesis that the illness can be fixed by thinking differently and that...

possibly even intersecting

https://anzmes.org.nz/anzmes-executive-committee/ The Executive Committee is currently Fiona Charlton - President Ange Robinson - Vice President Amy Ma - Treasurer Dr Ros Vallings - Medical Advisor (I had not been sure if she still was the medical advisor after retiring, but she is) Dr Sarah...

A total of 18 votes including online votes, and only 14 of them in favour of the new structure. I'm pretty sure that some of them would have been double votes, because regional organisations had a vote as well as individual members. So, someone controlling a regional organisation could...

ANZMES thread here: New Zealand: ANZMES - (starting there includes some useful background leading up to the transition in governance structures). Discussion of the new governance structure starts here at post #57.

Yes. And I don't think it's a case of the people on the committee being terrible people, or not wanting what is best for people with ME/CFS. I think it's just that they valued harmony and ease of operating over openness to accommodating differing views; the comfort of group think.

I've been meaning to note what happened with New Zealand's national charity, ANZMES, as a cautionary tale. ANZMES, that is the governing committee and most members, were very much tied to their Medical Advisor, essentially the only GP active in treating CFS in the country. They did not allow...

It certainly would be great if someone with ME/CFS who is aware of the issues we regularly talk about here was appointed to the role. Having ME/CFS, or caring for someone with ME/CFS should be seen as an important qualification for the role, not a problem.

@dave30th, I emailed you quite a bit of material some years ago, when ANZMES was having a 'UK MEA moment'. There is some detail on this thread New Zealand: Dr Vallings which links to some of the other ideas she has promoted.