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Grant recipients Mona Jeffreys and Kahu Dey speak on food insecurity and access for people with ME/CFS & on feasibility of establishing a registry (registry part starts 28:23)

Scholarship recipient (Masters) Jessica Philbrick speaks on therapeutic landscapes for ME/CFS

In case anyone with influence on how the money is going to be allocated is reading along, here’s another unsolicited suggestion to consider Germany can now do something few if any others have the resources or systems to do: systematically include a strategic replication component into the...

Don’t know anything about any of these but I do like the fact that some of these institutions cover a wide range of research areas – might just attract some new people with different backgrounds and fresh eyes to the field

I have no doubt the politicians who pushed this through genuinely want to find cures or at least effective treatments for us and it can’t have been easy to get that much money committed for something still so stigmatised. Well done :thumbup: However, it’s highly unlikely those politicians fully...

How I wish I could welcome this news with unmitigated joy. Alas, we’ve seen in the US how quickly an enormous amount of money can be wasted if you don’t get the settings right from the start. We really don’t want to see that history repeating itself Any chance the German patient organisations...

Congrats to the recipients! First project: Not sure I understand what they’re looking for here. I very much doubt there is any sort of useful administrative data on MCAS. Did they mean mast cell activation related conditions like allergy or asthma, i.e. MCA rather than MCAS? [ETA: And what is...

2025 grant & scholarship winners announced, 1 each More at link

Just for a Kiwi audience: TVNZ+ has an overall excellent 16min documentary on young adults with Long Covid, one of the participants also has ME. A short clip of this was also shown on the 6pm news today You have to be logged in to watch. Under 'News' look for “Offered rest home care at 24...

Putting aside the quality or otherwise of the content (which I haven’t read properly yet) isn’t there a danger that this would be received akin to mansplaining by doctors? To be sure I’ve met some doctors where I wondered how they’d ever got their degree given how foreign scientific principles...

The paper doesn’t report on how travel to and from the centre affected the patients. Were they all drawn from a relatively local area and didn’t have to travel far? Were they assessed at home before they left and again after they returned home? Could some have arrived at the centre crashed and...

Don’t want to put the person’s name out there but the Internet informs me they’re with OMF US I suspect OMF are monitoring our chatter here about them anyway even if they've chosen to not engage as an organisation, they can't possibly not know about us what with Chris being a regular visitor

Does this suggest we’re potentially interested in non-classical rather than classical MHC? Another non-classical MHC Class 1 gene also hanging out on Chr6 is HFE (another tier 1 candidate gene). While not doing classical MHC stuff, it does seem to be involved in antigen presentation in some way...

Misplaced indeed. Out of curiosity I checked my bank records: 2017, US$100. That’s it. Several zeros short of making me a substantial donor prospect I would have thought You and me both. Especially since I haven’t had any emails from them since that 2017 donation (I always unsubscribe from...

Anyone know what this is all about, just hustling for donations or something else? Got this gushy email requesting a personal phone/zoom chat (not even sure how I ended up on their mailing list though it’s possible I may have donated a very small amount a very long time ago) Email subject is...

I haven’t read the paper, just speculating on metformin in general. It’s a very common drug. There must be thousands and thousands of pwME on it. If it did something for ME shouldn’t we be seeing more anecdotal reports of metformin use correlating with improvements in ME symptoms? There don’t...

This recent paper out of Columbia mentions Metformin as a possible treatment strategy for some patients

Authors: David Fineberg, Alain Moreau, Elena K Schneider-Futschik, Christopher W. Armstrong Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID (LC) are increasingly recognized as debilitating postinfectious conditions that impact both individuals and society...

Indeed Still worth filling in the questionnaire if you have the capacity. Otherwise there’s a risk they get all positive answers and then they say, see patients all agree these things are useful I skipped quite a few questions and just concentrated on the ones I thought were most important and...

Welcome @geminiqry I don’t know how many people we have on the forum with Mandarin Chinese skills (I have zero) but I hope you find some people you can discuss any tricky bits with. It looks like you’ve hit that translator’s curse, the untranslatable term, where a word or concept used in the...