Search results

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.

I think there are a few things we can do relatively easily. 1. A more appealing, accessible entry to the forum, with a website making the resources available 2. good use of search engine magic, to promote our content 3. ongoing liaison with patient charities. Some, a minority to be sure...

Thanks for the link to the San code for research @bicentennial Requiring researchers to front up and share their research with the participants and community prior to publication is one good way to make research better. I agree @Ravn, we need to find ways to do the things you list. I'd love...

For sure @hibiscuswahine, we don't yet know what Dr Rabindranath's views about ME/CFS are, and I am still hopeful. Having a well-informed specialist doctor regularly seeing many people with ME/CFS would be a big deal for New Zealand, and I guess, given how often we have found doctors harbouring...

Inspired by Emerge's announcement of their award for Excellence in Journalism, I wondered what one article you would choose as doing the most to improve the understanding of ME/CFS? I guess there might be a brilliant article that had limited reach, or a pretty good one that was read by a lot of...

That's a great initiative. I wonder what piece of journalism we would pick as the best in 2024 for increasing the understanding and awareness of ME/CFS? Edit: thread here What was the best piece of 2024 journalism for increasing understanding of ME/CFS?

Thanks to Dolphin for noting this on the Australia news thread: https://www.emerge.org.au/the-emerge-australia-awards-for-excellence-in-journalism/ "We are delighted to recognise and honour the exceptional journalists who are dedicated to enhancing media coverage of myalgic...

Not ideal. Dr Vallings has of course been the source of a lot of unevidenced if not outright weird ideas about ME/CFS treatment. That's a good sign though. I've sent an email to Dr Rabindranath, thanking him for his interest in ME/CFS and alerting him to the existence of the forum.

Thanks Peter. I think that's a very good reminder of the range of practical information we have here. Something to keep in mind as we plan a website down the track - we need to highlight that that information is there. I think it is very important that the topic is introduced in a Members...