There’s a yawning gap in ME/CFS research funding. Take action. (Simon McGrath blog, May 8)

One for ME Awareness week

There’s a yawning gap in ME/CFS research funding. Take action.

When I got ME more than 20 years ago, I thought that science would soon provide the answers to my illness. Instead, I saw little good research going on, and there’s been a spectacular lack of progress since then. We have no treatments and still don’t even know what causes the disease. Why not?

The fundamental reason for the lack of good science is that there is not enough funding: money is the sun that powers the research world. And inadequate funding is mostly down to neglect by government research-funders. That has to change, and patients can help make it happen.


Photos: ME Association & (c) Can Stock Photo / bugphai

An outsider might think that an illness that strikes in the prime of life, affecting so many people so severely, would be a priority for governments. Surely the multi-billion pound cost to the economy would focus minds? Not if your illness is ME/CFS, which many people in power don't take seriously. In the US, research receives a feeble $8 a patient a year. In the UK, it’s £4 a year, which is mostly spent on psychosocial research.

Not enough action from the National Institutes of Health

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Read the full blog

 

Small thing but thread title says May 18, should it be May 8?

ETA: Clarify I meant the title of this thread.

 

One other thing I've spotted. "That’s a massive million shortfall on what’s needed.". Is this missing a figure? I.e. "a massive $80 million shortfall"?

 

id meant that as May 2018, but see it’s unclear. Now May 8

Thanks. I’d originally had “Massive Siri had Knesset!) $86 million shop full”. Then I took out the figure because it’s too precise. The hundred million dollars is just an estimate. Basically, current funding is an order of magnitude less than we need. So I’ve gone with just “massive shortfall”. Unfortunately, I’d left the “millions” behind; proofreading is not my strong point

 

Great article, very useful too thanks

I personally would have gone big on research funding in the media this awareness week but I suspect MEA & AFME are tied in with the CMRC on this and are waiting to see if the "respectable channels " route comes to anything now CMRC have moved, rather than promoting patient lobbying, which is why they never mention it in a direct challenge to the establishment way. I don't agree with aligning our cause with the CMRC on this when the CMRC have not been particularly proactive on the funding front, nor were the ME expert group before. We as a patient group have been told by all involved with CMRC that the slow, small start , no ring fenced funds was the way we had to go. I fundamentally disagreed and we have spent ten years with little funded research in uk which is why there's little actual science discussed on here.
I would have rallied around the #MM Funding call if I were a uk charity

 

Yes. Ron Davis has put out a call this week for regular monthly donations to OMF to increase reliable regular funding.
In the past we have donated substantially to AfME only to become better informed and regret it.

Don't want to be bitten twice. It's difficult in UK unless it's ring fenced for a specific project like the biobank.

 

I personally donate mainly to smci this year, OMF have a lot of money at the moment and smci are funding great research.