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I don't think I've ever seen an example side-by-side of two separate ministers using copy and paste to deliver pretty much identical answers. I thank each minister deeply for the 15 seconds they took to answer these questions. I also thank Ashley Dalton for the extra 45 seconds she took to copy...

Rationale behind the $50m funding call for the roadmap that is part of #MEActions campaign "$50 million would allow for clinical trials, which we have none currently. It’s a number that is achievable in a time of extreme budget cuts. Yes, we want a billion dollars but the reality is we are...

Rationale behind the $50m funding call for the roadmap that is part of #MEActions campaign "$50 million would allow for clinical trials, which we have none currently. It’s a number that is achievable in a time of extreme budget cuts. Yes, we want a billion dollars but the reality is we are...

Good questions. I'd love to see a direct question challenging why such different research paths & resources for long covid and ME/CFS. Edit apart from the medical advice they may have received

A worthwhile X thread on myth busting, that dominated UK “action”.

I mainly have 3 concerns. 1)We are loosing this decade to talks as we did the previous ones 2) lack of specifics on funding - aspiration meeting need 3) that cognitive dysfunction, neurological & sensory symptoms don't have clear inclusion in the proposal I know you’ve said this proposal...

The main threads which cover it are below, with the comments specifically by @InitialConditions (great work!) who has done the digging. It's not a groundbreaking uplift but if the average was 2 applications per year and the year of RFF they got 15 - in a climate of the organised SMC "ME...

I think long-term severe ME cses That developed through years of exertion from no diagnosis, until they now can’t move and don’t see improvemen , with a swine flu trigger from 2007 might require different research & treatments to people ill less than 4 years, safe guarded by #MEActions stop...

If people with long covid are Really disappointed regarding the viral persistence avenue, why can US ME orgs , who in my opinion have supported the long covid first Approach , not get how unserved those with long term ME have felt by being told by the nih to just accept a funding freeze...

Thanks for your reply, the delivery plan has to deliver something on reSearch more than vague waffle about guiding research on how to do better applications. my response is partly to you & then part just a broader statement, so don't take my frustration tone personally. I'm pretty sure someone...

However, we simply don’t have time for another slow burner and this plan was called the delivery plan so, expectations from a patient group stagmatised , harmed and left on the shelf decades, then waiting on three years of talks isn't for.....yet more talks.. This is presented as something that...

Jenny jones from the House of Lords

Deputy leader and possibly soon to be leader of the UK Green Party

of potential wider relevance

Looks like the main two UK charities are encouraging MPs to post on Twitter about busting myths rather than funding the plan , which is quite disappointing, or maybe the MPs are just choosing this line because they happen to be The Labour Party and they are not prepared to speak against the...

The Liberal Democrat’s

The green MPs/ lady joined in for a photo, which is encouraging, with libdems all signing a letter & requesting a Meeting with the health secretary regarding the DHSC delivery plan too.

UK has had an SOS campaign for pwME to send a letter from #MEAction and a small London protest by canary and #notrecovered which connected with social media. They set up a visually arresting display and had the hashtag asking why were things #stillthesame

i think ME/CFS is one of the few potentially devasting common diseases that has made virtually no progress towards treatments over the past thirty years, nor has had much state investment despite being in this predicament. Dementia is having loads of extra investment to drive progress, it had...

I think it also indicates that they feel that they can walk over this community because we’re passive in our organisations and ineffective in campaigning and making any noise about the injustice side of it. They know that they could do this and our orgs will be back at the table, smiling at...