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Hi all, thanks for sharing and talking about this - I am grateful. Firstly, apologies for the length - it was unrehearsed. I hope to get this down to a shorter version in the future. As has been noted, the key point are: Who should pay for ME research? • The major source of funding for a lot...

Well that's an interesting case example. Do you think such research is acceptable or not acceptable? A few people have said "well there isn't any current need" - yes, I get that. I am talking about the future. For example: if a genetics study were to discover that people with ME lacked a...

A discussion has arisen on the use of animals in biological research into ME. I suspect there is insufficient data to create animal models of ME at the moment, but that may change in the future, for example using mice to test hypotheseis on potential causes of ME. Medical research into...

No, the minutes are usually posted on the Forward-ME.co.uk website, but the person who does it just hasn't posted them yet. This is the word doc sent out to members.

That discussion did feed into this, but I did not expect results to come so quickly. Credit should go to Sonya and the AfME team, with support from the other charities, who have been working on this for some time.

I don't think anything we discussed with them was confidential. Broadly speaking they were trying to listen and learn about ME. Before starting a formal consultation process to understand what they need to do, they will do some scoping to understand the dynamics of the subject. This will help...

Thank you all. I have sent the Department of Health & Social Care team the 'Housebound vs non-Housebound" study, which supports the statistic (even if a small study). The DoHSC rep seemed happy with it. I believe it is part of their policy development. We talked a lot about the need to include...

That you Jonathan. Yes, this is a useful point, however I was given a specific request from Dept of Health, so I was keen to respond to that. We try hard to communicate the situation of people who are severely affected, noting that they can be invisible, and often can't participate in advocacy...

Brilliant! Thank you! Here's a link to the open source PDF: https://europepmc.org/backend/ptpmcrender.fcgi?accid=PMC5464362&blobtype=pdf

Hi All, I have just had a request from the Department of Health & Social Care policy team for a citation supporting the often cited statistic that 25% of people with ME are severely or very severely affected. Does anyone have a supported source for this? My first round of searches (ME-paedia...

I think this is very good news, and glad to see it advertised. We need these kind of people: ME research needs to grow significantly, and that requires leadership. Regarding cost, my view is that this is not a place to scrimp and save: we want to pay what it takes to get the best people as we...

We have already met our day 1 target. Thank you all. Please keep sharing. There are some fantastically useful thoughts coming in. We will be writing up the report and logging the results in due course.

Hi All, Thank-you to those who completed a trial survey regarding images portraying ME in the media. Following yesterday's feedback, we have made significant improvements. The 'final version' of the survey is here: https://www.surveymonkey.com/r/APictureOf_ME I would be very grateful if people...

Hello all, Many will not know me, I am part of a few groups campaigning for better recognition of ME and more biomedical research into the condition. I am now part of the very small team at Forward-ME, who co-ordinate shared activities between the main ME charities. I am working on a mixture of...