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Really excellent thank-you letter from the Partnership this morning - big congrats to whoever wrote it. They did a really good job of acknowledging patient input and they're clearly listening to patients on all sorts of fronts.

A few years back, Nancy Klimas's lab invited PwME to send in their 23&me data for comparison with non-PwME. I think they determined that PwME were more likely to have an MTHFR gene mutation that might stuff up the conversion of folate to its active form, with important consequences. They were...

Has ME Research UK been contacted? They have over 8,000 followers on FaceBook and 1,000 on Twitter.

I'm stating the obvious perhaps but we've been waiting decades without treatment and we're very sick. Speed is of the essence. For patients, there's a huge difference in blasting this thing out in under a year and having it stretch on to three years. The whole community really needs to give it...

I'm a big fan of the idea of patients reaching out via their social networks but I think this is an optimistic calculation. Outside of this forum, I don't know a single other ME patient and am not aware that I have any friends or relatives who know one. Even if I blast out an email to everyone I...

Thinking a bit more about the celebrities. If we can get one onside, I wonder if they can communicate how unique and desperately needed this project is, and convince them to use their celebrity network to spread the word, just as we intend to via our own social networks. We have some people in...

Can instructions be added to the site in the meantime?

@Andy - thanks very much for all the hard work that you've been putting into this. If we want patients (and others?) to register on the site, would it be a good idea to have a separate thread with a title that makes that clear? Otherwise, that call to action seems a bit buried. It would be...

Lots of great ideas from everyone! :thumbup: Should we be so quick to dismiss celebrities? Some celebrities have said some things about ME that we wouldn't agree with, but that happens all the time. I don't think there's much damage left to be done. And yet celebrities have huge numbers of...

I wonder if the PR were thinking in terms of who would have impact on the public, as opposed to who would have impact on potential recruits to the study. As a potential participant, I'd be much more interested in seeing the scientist running the study, ideally with an endorsement from a patient...

I don't think a lot of people know what a genome is. Also, if you pronounce GenoME as 'genome' it loses the ME connection, and if you pronounce it as'jeeno-mee' it loses the genome connection. I don't think it works (with apologies to the person who suggested it!).

Hi Kitty - I think you're right that we definitely do want engaged patients to reach out to others that they know. But my suggestion goes wider: 1. We contact everyone in our social circles, not just patients; 2. We ask everyone to contact everyone else they know, not just patients; 3. We...

For the GWAS, which will need 20,000 patients, I think we will have to ask each patient, carer and supporter to ask everyone in their social circle - family, friends, colleagues, etc. - to tell any patients that they know about the study, and ask that patient to ask everyone in their social...

Well done, @JohnTheJack. Appalling that you should have had to go through such a battle.

From the other thread: So how about: Decode ME/CFS The WIGWAM Study: Worldwide Investigation of Genome-Wide Association in ME/CFS

I've set up a thread for suggesting names: https://www.s4me.info/threads/suggest-a-name-for-chris-pontings-me-gwas-project.10352/

What it says on the tin! Please suggest your names here about this project. :)

I like it! Should we start a thread for name suggestions for the project (so that this thread can focus on the science)?

I think this is a hugely exciting project. If we'd had this done twenty years ago, who knows where we'd be now? This basic science is exactly what we need, given the lack of a strong lead in any particular direction. I understand people's frustration at the time-scale but the faster patients...

I was wishing I'd asked where they get their FM for the FMT in the clinical trials! From healthy relatives? From other people, who've been screened? Is there a future in the 'poop pills' that are being developed? Even if there's a trial, and it's successful, these issues might affect how...