Why is ME/CFS getting so little research funding?

I have heard of junior doctors who were interested in a patient or two on wards with a curious malady (ME)who were warned off when they wanted to investigate further. They were told it would be dead ending their career.

Those junior doctors factors probably grew up to be clinicians who may well have otherwise developed specialist knowledge of ME and perhaps developed worthwhile research hypothesis.

 

GET is rarely ever mentioned but exercise is. Every time I see this topic come up and physicians object to any changes in the right direction, there's a sort of rabid insistence that exercise is the treatment and that's final, all those damn activists are ruining science. It's a very dogmatic position that clearly arouses strong emotions.

Hardly anyone in medicine knows about GET. It's all about exercise. Any kind of exercise, doesn't matter just do more. And they either believe it strongly or feel like they are defending the very soul of civilization in keeping it this way. But it is a firm position, something not up to discussion. Hence why nobody ever checks the evidence base, they just take the ideologues at their word.

Which is kind of funny given the pointless insistence of the CBT-GET brigade that it's a special exercise treatment that "works", not regular exercise. I'm pretty sure they know nobody actually takes that seriously, it's just a thought-terminating cliché, good old No true ScotsmanGET.

The perception is clearly of a trivial bout of low energy, most commonly described as the "physical symptoms of depression". Nothing else. That's not medical, hence the indifference towards any medical involvement. Even though depression is considered medical. Self-consistency is obviously superfluous here.

Unfortunately it condemns the whole thing by enforcing a loop where it can't be medicalized properly because it's been deemed non-medical. But the perception is clearly of something so trivial and harmless that it's not even worth thinking about, at least in medical terms. The few glimpses of physicians who think it's serious don't think it's medical so the outcome is the same: stagnation at best, regression as the norm.

 

I know the thread question is about the NIH.
A couple of brief comments from a Canadian perspective.

A few years back (maybe 5?) A Canadian research funding request was turned down. The reason was apparently that none of the people on the review believed ME was a real disease.

Perhaps someone else might remember the details here.

Also with regard to:

I think it's correct to say that there is such a study that is ongoing (over a decade now) in Ontario. Here health is a provincial responsibility. However it is not specific to ME. It is a general health survey that tries to capture all health conditions in the population.

Here is a link to the study:

https://www.ontariohealthstudy.ca/

As to why the NIH have been so negligent in their responsibilities, I think it may be at least part simple human bias. I think there has been a perception that people with ME really just aren't that ill. Given limited funds to distribute they apply the rules of triage and ME losses.

 

For all the social reasons, I think the biological one set out by Jonathan Edwards is the biggest reason that researchers stay away. It's a really tough problem to crack (though by no means impossible).

I think that NIH Director Francis Collins was right when he said that solving ME/CFS will mean discovering some new system or process in the body: what has gone wrong is probably something we have yet to discover in its healthy, normal form.

On the other hand, if you want to tackle an illness like this, where there are no good leads (nothing specific obviously wrong with people) there are a number of ways in.

1. A GWAS (thanks @FMMM1 )
Genetic studies (good ones) can find clues as to what has gone wrong biology based on no hypotheses, no clues whatsoever - other than what is written in the DNA of people with the illness.

2. Good epidemiology. Who gets ill, when and where is a good way to find clues as to why. Again, no biological hypotheses needed.

3. Prospective studies - tracking people through from onset (or, better, from before). That way you can see what predisposes people to get sick, which must be a causal factor (not a chance association, or an effect). In a way, a GWAS is a retrospective prospective study (retrospective in that you wait for people to get ill first, prospective in that the clues were writing in their DNA before they got sick).

4. Challenge studies. Poke people with a stick, and see how they react: are patients different from healthy folk or those with different illnesses? Maximal exercise studies are a good example, though I worry that the test is absurdly extreme (nobody with ME in the real world ever gets PEM because they exercised to exhaustion) and necessarily excludes most of the patient population who are too ill to take it. Even so, it is a powerful method because any differences from controls are likely to be linked to the nature of the illness, not to simply being ill.

2&3 already flagged up by @Michiel Tack :

HIV/Aids is often used as a paradigm, 'here's what we could achieve in ME/CFS if only we had the will and the resources'. I was doing my biochemistry degree in the mid-1980s when things were really kicking off and don't think the analogy holds up. That's because HIV/Aids was clearly a solvable problem. Quickly people knew it was caused by a retrovirus that attacked the immune system. We know very little about retroviruses but molecular biology was at the perfect stage to take on the challenge.

The smartest and most ambitious researchers were desperate to work on HIV/Aids - it was the cutting edge of science, there was plenty of money for it, many researchers knew those that were affected, and there was a whiff of Nobel prize in the air.

Of course, all the political factors have made life harder. As for the claim that BPS researchers have been put off research because of harassment - where is the evidence? They seemed to be doing rather a lot of it, at least until those pesky patients started pointing out how flaky their work was.

 

My cancer surgeon, who was very sympathetic to ME, said simply, “no one knows where to start”. I think this is true. It’s hard for researchers to find a way in with the absence of any sort of reliable biomarker.

 

I think part of this is explained by @Jonathan Edwards "The problem is just that as a scientific question ME is very hard to see a way in to."

If you take a clinical post in ME (if there is such a thing in the UK) then it's currently very difficult to treat people plus it's very difficult to progress research. There's a school of thought, referenced by @Simon M , that ME will require a breakthrough i.e. something new - like Simon, I reckon there are tools which haven't been utilised - maybe we need to push for the funding e.g. re GWAS.

Also, look e.g. at Cara Tomas's recent study; OK it's small but it did come up with interesting results - why not run larger studies or new studies to look further?

Maybe part of the answer is the patient community/families/friends pushing for the necessary funding for research and support for people with ME.

The longCovid's may have decontaminated ME (reduced negative stereotypes) --- perhaps a good time to look for funding.

 

It would be useful to create a list of research priorities. Things that haven't been looked at yet, things that need replication.

 

This pandemic would seem to offer a golden, if horrible opportunity to do this. What kind of pre-onset info would be helpful? Can we do anything to get such a study to happen?

 

Yes I agree, although even though ME is a multi-system disease or disorder (based on total symptoms), if we categorize it based on core symptoms and current state of evidence suggesting potential pathophysiology then I believe it should be temporarily under neurology and rheumatology.

 

A thread for the PSP?

 

Prof. Warren Tate said in a just released lecture that an official of the ministry of health who had a funding program for long term diseases told him that they would never fund ME/CFS unless he could show the research was relevant to a disease like diabetes.

This implies the people making the decisions in this funding body view it not as long term disease (not a disease, or not long term) or simply unimportant.

 

Thanks, Trish - do you have details?

 

Which is the idea behind the Priority Setting Partnership.

Probably best to use the existing one? UK: Priority Setting Partnership for ME/CFS

 

Thanks - that doesn't seem to be about pre-onset, though. I'm not clear about the advantages of looking pre-onset, however!

 

Another reason is that MECFS never had a breakout viral campaign like ALS did.

This raised over 100 million USD.

https://www.cnn.com/2020/11/22/us/pat-quinn-als-ice-bucket-challenge-dead-trnd/index.html

 

There are lots of big international cohorts tracking large groups of healthy people for onset of new conditions (effectively the UK non-me biobank does this too). These can be repurposed. One in Germany was adapted specifically to follow covid and so I guess could easily be turned to long covid. I am pretty sure there are other plans to use existing such cohorts to study long covid.

Advantages?
Because some of these cohorts have been going for years, they have a wealth of data on lifestyle factors, occupation, other health conditions that can be mined to look for predictors for eg susceptibility to long covid.

 

Certainly this has happened and still does. There's no question the stereotype could have been a real disincentive to go into the field for some. But those currently doing biomedical research do not raise this "harassment" thing as a real-world issue.