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I'm not sure what this sentence is saying. 'Complex' can be a code word for 'biopsychosocial' and 'psychosomatic'. Also, we don't really know that ME/CFS is complex, it's just that we don't understand it yet. 'Multifaceted' can be read as 'biopsychosocial' also - as in, 'yes there was a...

I regularly buy a ticket in the NZ Heart Foundation lottery, it's a raffle ticket essentially, with the main prize being a house. It has better odds than the main government lottery, probably still not great, but someone wins the house. I think the Foundation is decent and I like that the...

Announcement of their 2025 conference - follow the arrow in the quote title to the thread

On that Jeffrey et al thread, there were some accounts of improvement while on anti-coagulants: @Andy noted his experience with injected anticoagulants: @Michelle noted her experience of some improvement while on heparin but did not find that with oral anticoagulants (warfarin and rivaroxaban):

This study on long Covid risk factors Deriving and validating a risk prediction model for long COVID, 2023, Jeffrey et al found that parenteral anticoagulants reduced the risk. It is likely that the people given anticoagulants during their Covid-19 illness in this study were different to the...

There have been a number of case studies suggesting anti-coagulants are useful treatments for long Covid, and a number of doctors are prescribing these, singly or as a 'triple therapy' to long Covid patients, including children. The treatment has tended to be promoted along with the hypothesis...

Yes. I don't think it's hard - just respond to the needs and concerns expressed? Recognise that there are things that need to be better and make it clear that your charity intend to fix them. Possibly you could even include a project to fix recognised deficiencies in your organisation in a...

Yes, as Kitty says, there are organisations that help identify grants, things like disability service hubs. Even just internet searches can throw up interesting options. Helping a charity find such grants and apply for them might be a lot more productive in terms of bringing income in than...

Problem A solution might be for charities to consider dropping the membership fee altogether. Even just the admin is a friction for potential members and a significant cost for charities. At 18 pounds, if the MEA has 5000 members, that's 90,000 pounds. That is not nothing, but take off the...

I remember hearing a researcher a few months ago who was associated with the Dunedin prospective study that followed a sample of over 1000 children born in Dunedin, NZ. It's a well respected study, the participants have provided data on so many aspects of their lives. The researcher said that...

As noted in the first post of this thread: 2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts here, notice of his withdrawal here 2024 AGM, company documents, trustees and historic governance issues discussion starts here Many posts have been moved from United...

The moderation team split the discussion of the MEA's governance issues from the news from this organisation. Discussion about MEA governance issues can continue on this linked thread: United Kingdom: ME Association governance issues 2021 Appointment of Professor Leslie Findley to be patron...

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...