UK House of Lords/ House of Commons - relevant people and questions

[Cinders66]

Pretty obvious that the naming of the "final" plan was meant in a "this is the last thing we will be doing or talking about it, we are done, this is final" way

Good observation, which should trigger next level advocacy, except our UK charities unlike many others, do not run campaigns and do not have plan b for when collaboration and docile negotiations fail, which they have. Even the short lived research hub campaign was half-hearted. What was the point of the 2 years doing the 13 years too late & growing out of date JLA PSP with no funding.

Most patients are now excluded from Forward ME discussions - for those who are saying “nothing about us without us” should apply - ie minutes stopped in 2022. It used to be a rare window into what charity leads were actually thinking, planning and saying. Presumably the undeclared plan, now they’ve decided to roll over on the DHSC delivery plan, as they have every hurdle, is to carry on carrying on and wait for whenever the MRC give them another go, with the timeline suggesting it might be in 4 years, when the PRIME funding on “infrastructure building” finishes. No one in the community who is suffering will find that acceptable - rolling over on sidelining and can-kicking as people loose more years of their lives trapped in one room & state biomedical research investment virtually non existent at a time when there’s so much to explore.

 

[Robert 1973]

I am very disappointed that we have not had more enthusiasm for SequenceME from funders. I met someone in charge from MRC at the Royal College meeting and my heart sank.

This is really disappointing to hear – particularly on a thread about reasons for hope. For decades the MRC’s excuse for lack of funding has been that there has been a lack of high quality applications/proposals/ideas. I’ve not managed to keep up. What is their excuse now?

I wonder if this is something we could usefully ask our MPs to lobby the DHSC and MRC about?

The quotes above are from a different thread. I’m sharing them here as they are relevant to this thread.