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.

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.

The US National Institutes of Health (NIH), the world’s biggest funder of biomedical research, had been neglecting ME/CFS for years, but three years ago, it looked like that was all going to change. In 2015, ME/CFS patient, former NIH employee and Washington Post reporter Brian Vastag wrote a powerful open letter to NIH Director Dr Francis Collins that was published in the newspaper.

Collins was clearly moved and started to act. He promised to “ramp up” research funding, and oversaw the establishment of an in-depth, multi-million dollar study of ME/CFS at the NIH’s research hospital.The NIH recently funded three new collaboratives, whose researchers and research programmes are impressive. But the amount of money committed – $7.2 million in the first year and an estimated $36 million over five years of funding – is not. Not from an organisation with a $37 billion annual budget, which recently landed an inflation-busting $3 billion increase. An extra $7 million a year is not enough to address an illness where, as National Institute of Neurological Disorders and Stroke Director Walter Koroshetz acknowledged, “we are 50 years behind” on the research.

Fair funding for ME/CFS

What should the NIH spend on ME/CFS research? One obvious guide is what the organisation spends on illnesses with a similar level of “disease burden” – a technical concept that combines the number of people affected by an illness with how hard it hits them, both in terms of levels of disability and rates of early death.

Mary Dimmock and colleagues estimated the disease burden of ME/CFS, and their estimate is shown in the graph below, which also shows NIH spending by disease burden for a range of illnesses. The straight line indicates “fair funding” – that is, what each illness would receive if research funding was based solely on disease burden.

The graph also shows what “fair funding” for ME/CFS would be: $190 million a year.

Dimmock and colleagues commented that there is a lot of uncertainty around their estimate, so let’s take a conservative view and assume $100 million a year represents fair funding for ME/CFS research. Disease burden isn’t the only factor driving research spending, though given how little is known about ME/CFS and how little has been spent on it in the past, it’s arguable that the figure should be higher.

Today, funding stands at $14 million a year, even after Director Collins has “ramped up” funding into ME/CFS. That’s a massive shortfall on what’s needed.

What next from the NIH?

On internet discussion site Reddit, Director Collins replied to a question about the slow rate of progress on ME/CFS by saying that “research, done correctly, takes time”. This relaxed attitude drew a strong response from several patient-advocates. Jen Brea, Director of Unrest, tweeted:

“I am probably going to feel like shit for the rest of my life (unless something dramatically changes) because ‘research takes time’ when you fund it with the change you found under the NIH Director’s sofa cushions.”

And Jennie Spotila lambasted Collins in her blog, pointing out that he recently showed far more urgency dealing with another health problem: “When the President asked you in March 2017 to direct the resources of NIH towards the opioid abuse epidemic, you didn’t tell him that you empathized with his frustration and that it would take time. No, you formed thirty new partnerships in 10 months to find new addiction treatments and alternatives to opioids.”

ME/CFS patients are sick of waiting, and now that the NIH has finally woken up to the problem of the disease’s funding, we want it to get on and invest the resources that the problem demands.

Protesting to the NIH directly is one way to press for change, but there are other ways too.

Take action Even from your bed Solve ME/CFS Advocacy day 15 May #MillionsMissing protests 12 May Find a protest in a city near you.

Brian Vastag believes that the best way to achieve a big increase in funding is to get Congress to earmark funds specifically for ME/CFS. He believes that “The bureaucracy at NIH is too slow and too hard to steer, and without a directive from Congress, boosting ME/CFS funding will be seen by many inside NIH as taking money away from other diseases”.

That’s the nub of the problem: many at the NIH still don’t seem to see ME/CFS as a priority. Director Collins’s push on ME/CFS involved setting up a trans-NIH working group with the apparent aim of bringing in contributions from Institutes, Centres and Offices across the NIH. Twenty-two of these were represented on the working group, but when the rubber met the road only three, including the Collins’s Office, contributed $1 million or more in the 2017 financial year. Of the rest, only the National Heart, Lung and Blood Institute managed as much as $0.5 million, with several groups contributing nothing. There seems to be little enthusiasm for research into our disease across the NIH.

Vastag pointed out that lobbying recently paid off for Alzheimer’s disease, where Congress mandated an extra $414 million a year for research. As he said, it takes a lot of lobbying and consistent pressure on key purse-string holders in Congress so it won’t be an easy route, and certainly won’t be quick. But it might well be the best way.

Days of action: 12 and 15 May

Targeting Congress is exactly what the Solve ME/CFS Initiative (SMCI) is doing. It has recruited a professional lobbyist in its new Director of Advocacy and Communications, Emily Taylor, and has organised a mass lobby of Congress on 15 May to demand action, including more research funding. There will be more than 100 meetings with members of Congress and their staff.

In addition, #MEAction has organised protests all across the US on 12 May (and in other locations worldwide). It hopes to follow the protests with a meeting with Director Collins to put more pressure on the NIH. Find out how you can take part in these actions and the advocacy – even from your bed.

The UK: it’s even worse

Funding across the last decade stands at a feeble £4 per patient per year in the UK, and most of that has gone on psychosocial research. The Medical Research Council (MRC) granted £1.6 million to biomedical ME/CFS research back in 2011, but that work has produced nothing of note to date, and there’s been precious little funding since.

While there is less money available in the UK, the three big funders – the MRC, the National Institute for Health Research and the Wellcome Trust – have a combined research budget of around £2.5 billion. That’s plenty big enough to dramatically boost research into ME/CFS if the will is there.

Some hope?

The CFS/ME Research Collaborative (CMRC) is currently making a big push for more biomedical research funding. The CMRC has already pitched a plan for more money to the MRC and is also talking to other big funders. The CMRC’s Chair, Professor Stephen Holgate, has indicated there will be news by the time of the Collaborative’s September conference.

If the CMRC can’t secure funding, I think charities and patients need to look seriously at what can be done next. Unlike in the US, there is no mechanism in the UK for politicians to direct funds to a particular disease, making it harder to know how to push for more funding. But there will be a #MillionsMissing demonstration targeting the Health Secretary, Jeremy Hunt, and demanding government investment in biomedical research for ME/CFS.

Don’t wait, donate now and get more research, sooner!

The big money is always going to come from government-funded institutions, the NIH in particular. But money from patients and their supporters will also help. The Open Medicine Foundation is leading the way, building up from raising $3 million two years ago to $5 million last year and an estimated $10 million this year. To put that into perspective, $10 million easily beats what the NIH is spending on its new collaboratives in 2018.The SMCI has funded many small studies and has a good track record of its pilot studies being turned into larger, government-funded studies.

In the UK the sums are smaller. ME Research UK, the ME Association, Action for ME between them invest over £500,000 a year between them in biomedical research. Invest in ME Research raised an impressive £500,000 in donations and pledges for one study, its planned rituximab trial, which suggests the potential to raise even more within the UK.

Looking at comparable medical charities in the UK, the MS Society spends at least £5 million a year on research. Even muscular dystrophy, an illness that is ten times less common than ME/CFS (though with much higher mortality rates), receives nearly £2 million a year in research funding from the relevant charities.

Is it possible to raise more for ME/CFS in the UK, perhaps reaching the £5 million a year raised by the MS Society? And if so, how can we all pull together in the UK to make this happen? Donating now would be a good start.