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Thanks @TiredSam :thumbup: - organisations added

A big thank you to the World ME Alliance for signing the open letter, and also for promoting the petition to its international network of member patient organisations. Particular thanks to Sian Leary, Head of Advocacy and Communications, for her support. :emoji_blossom:

Fantastic to have the support of 25% ME Group, United Kingdom.

They are on our list to contact - so, yes, please do contact them for us :)

Latest MassME newsletter is out 17 September - webinar by a Long covid clinician 28 October - webinar by Ed Yong There are dates for their Young Adult Support Group - Massachusetts residents only News of a new medical education course Also promotion of a fibromyalgia study that looks...

From the latest Massachusetts ME/CFS and FM Association: DO YOU SUFFER FROM FIBROMYALGIA? This research study investigates whether a method of non-invasive brain stimulation (tDCS) combined with physical exercise can help pain processing in adults with fibromyalgia. This research study requires...

Cochrane has much bigger problems than us, including, as far as I can see, how it can continue to exist. That's (somewhat perversely), not good for us, because key decisionmakers probably don't have the bandwidth to deal with the problem they have created for people with ME/CFS. Also they...

An update has been posted on the petition site:

I think we could. It's probably better to have a more inclusive list than a less inclusive one.

Finnish Medical ME/CFS Association added, thanks @mango

Thank you very much to the following organisations for adding their support to the Open Letter, and for promoting the petition to their members: Millions Missing Stavanger (Norway) Norwegian ME-association ME/CFS Israel 5630 signatures on the petition We'd like to send emails to ME/CFS...

:)

Those factors (bullying and so on) may increase the risk of FND. And they may not. It doesn't sound as though this paper sheds light on that. Well, yes, "If". But we still don't know if FND is more prevalent in these young people. Four cherry picked cases won't tell us much about...

I did have the same thought. I suspect that chronic Ciguatera and Gulf War Illness are ME/CFS-like responses to toxins, no trigger infection needed. But if an answer was found for post-infection ME/CFS, then there would be good clues to explore for the rest. It's a name that works for the...

Added, thanks

Great news. Seems our disease is the trendy new thing.

Thanks Solstice, ME/CVS Vereniging added.

Thanks very much to Post Viral Research Aotearoa for supporting the open letter. https://www.pvra.nz/ This is a New Zealand-based research foundation.

I thought it would be useful to have a list of all the active international and national level ME/CFS charities and research foundations not specific to one research institution around the world. We can add to it as we find them. Please post below with organisations and a website and contact...

A German team: Hölkeskampring From the introduction: So, they are hypothesising that the lack of good evidence for autoantibodies in Long covid so far might be because the auto antibodies are being bound in tissue, rather than floating around in the blood. They suggest that inflammatory state...