I wrote this on their Facebook:
Regarding research, are you just counting long Covid research as being a worthy and full substitute for m.e research? “Save our science“ sounds likes a conservation effort & that M.E has a lot to lose, rather than pre-Covid M.E being in a state of scandalous neglect, openly sidelined. Yes m.e has a reducing number of centres of excellence from 3-1 but one of these cuts , pre trump, is the NIH reducing M.E research to simmer level as it is replacing M.E with long Covid. Yes one loss is due to Trump’s cuts but that is potentially reversed if Columbia universities amend disliked behaviour.
The M.E story is that there is so little to cut at <$15m / year research , because of neglect and open abandonment of the longer term, non-covid trigger population.
it’s long Covid research, that excludes people without a Covid trigger and ill pre-2020 , that has had all the resources ie 450 clinical trials and it’s possibly facing some cuts which people keen to preserve, although not the trials as I understand. So this advocacy, on research, seems to be for long Covid, based on the trickle down theory of knock on benefits for wider M.E? Or can you provide details of how research at threat of cuts was specifically on M.E or related to pre-Covid m.e? We are centring this, yet the only mention of ME I saw on long Covid awareness day, in their charity literature & media was a brief mention of “m.e and other infection associate conditions” in about paragraph 15 of a patient-led article
This activism, & I note last years millions missing was replaced by an educational event, does not seem to be highlighting the unjust disparity between long Covid and m.e funding or the inappropriate NIH focus / concern only on early stage illness and abandonment of the longer time/ more complex ill with m.e , NIH stating m.e had a damage that will be harder to treat yet doing nothing to further this. I don’t see a highlight of the need of the pre-Covid m.e community for a well funded, comprehensive research strategy. Why can’t the campaign be specifically on the need for the ME road map to be funded & pre covid M.E to have fair funding, rather than pwME left on the shelf and back of the queue ?
The #MEAction campaign was then launched with this explanation
Why We’re Sending out an SOS
Research Funding: Our community was on a precipice of new research opportunities with the possibility of funding the ME/CFS Research Roadmap after decades of waiting, and that is now being threatened with major cuts to research funding and infrastructure across the board.
Research at Columbia’s ME/CFS Collaborative Research Center has stopped after losing federal funding. The federal government has shut down the HHS Office of Long COVID Research and Practice and Long COVID Advisory Committee.
To which I asked:
Where in the public domain is evidence that the m.e community was on the brink of having its roadmap funded please.?? Surely the blockade to m.e was that the NIH were openly turning its back on it & telling us , as reported by Cort Johnson , not to look to the NIH for funds - & 2 senior officials said this - rather than what’s occurred in the last 2 months with Trump? The NIH wanting to wind down M.e research, replace it with LC and refusing to give m.e money is a separate issue to what the well -funded long-Covid community Is potentially facing with the Trump administration
& I quoted the
October 2024 #MEAction article:
“
Here’s the problem:
The NIH has dedicated ZERO dollars to fund this critical roadmap. The proposed budget for ME/CFS research in the upcoming fiscal year is only $13 million – not even enough to fund half a clinical trial.
) and a message about #MillionsMissing with your own networks.