Oh great! it's not like there's anything more pressing to fund like, say, SequenceME?

And I bet these assessments are going to be done by BACME loyalists and say that the services are running great, but they could be even better if the govt give BACME even more funding!

Well deserved strategic funding - €50 million *per year* for a decade - on ME/CFS and Long Covid research. Spent wisely this could be a game changer. Germany now leads & other countries need to follow. Goal to “decipher the causes and mechanisms and develop new treatments”. #MEcfs #longcovid

*understandable

It is hard enough for chronically ill people to get to medical appointments without being forced to fight this additional battle with other people's collective denial of the ongoing pandemic before we can even access care.

The situation as it stands is unacceptable.

Vunerable people should not bear the brunt of the understable collective trauma doctors carry from the early years of the pandemic. But we are villainised, abused and pathologised when we employ or ask for basic accomodations to protect us from covid or other viruses.

Did you see they announced PRIME recently, under Ponting's watch, which is very very exciting: megenetics.org.uk/our-projects...

It's delusional if he thinks the market employment model is willing to support disabled people in any way. They discriminate and then lie, to skirt any anti-discrimination laws because it's all performative, they don't care about disabled people, only saving money regardless of harm.

A life without most of the things that make it liveable, a life of fear and suffering and pain and medical neglect, is almost intolerable.

I am lucky enough to have supportive loved ones and it is still far too much to bear.

We keep going, somehow. Haunted by the people we should have been.