Why is ME/CFS getting so little research funding?

Looking at figures such as those from the NIH, ME/CFS is receiving far less funding than it should, based on disease burden. I would like to start a discussion on why ME/CFS is receiving so little research funding. Finding what the obstacles are, might help to improve the situation.

Evelien and I co-wrote a blog post about this: Why is ME/CFS getting so little research funding? – ME/CFS skeptic (wordpress.com)

Our main conclusion is that a lot of common explanations for the underfunding of ME/CFS research do not have strong support in the little data we have available. There aren’t any obvious explanations that stand out. We write that "The most likely explanation is that there are multiple factors at play and that for each one of these, the odds are stacked against us." But it would be interesting to hear other's opinion on this.

To give one example: it is often said that ME/CFS gets so little funding because it has been mischaracterized as a psychiatric condition. But if we look at NIH data and disease burden, it seems that depression, anxiety, anorexia, schizophrenia etc. all receive more funding per disease burden than ME/CFS.

https://twitter.com/user/status/1330869889842737158

 

Interesting analysis, @Michiel Tack, and well worth doing. I wonder if one issue, at least in the UK, is the BPS proponents' portrayal of PwME as people who issue death threats against researchers. That has been repeatedly in the national press in the UK.

I'd like to hear the views of current, active researchers, though for 'political' reasons, they may not feel able to speak freely.

@Jonathan Edwards does, though! What do you think, Jo?

 

Just guessing -- I think the main reason of the poor state of ME/CFS research is that most clinicians and researchers still don't see it as an illness entity.

Despite the IOM report and all other official acknowledgments by different authorities, it seems to me that most clinicians and biomedical researcher still think it's either just a symptom (chronic fatigue) of an underlying, otherwise diagnosable disorder or disease (depression, cancer, MS) or it's hypochondria or an unspecific somatoform disorder or psychosomatic disorder or how the different proponents like to call it at different times.

 

Thanks for bringing this up, someone else suggested this to me as well.

I think this might have played a harmful role, but in the end, these were just a couple of UK newspaper articles, not sure if this changed people's career perspective. The data in our article is also mostly about the US where these issues weren't featured prominently and where ME/CFS received much more sympathetic coverage in the media, despite being at the bottom of the list when it comes to funding per disease burden. So in my view, this isn't likely to be an important explanation of why ME/CFS receives so little funding.

AIDS activists were quite aggressive. They disrupted conferences, protested before the FDA headquarters and chained themselves in the office of pharmaceutical companies. They were young men who had received a death sentence and were furious. This doesn't seem to have hampered researchers from stepping into the field.

 

Yes, that's possible but the same has been said about depression, ADHD, autism and these receive much more funding (per disease burden) than ME/CFS.

 

I would say it's more because it's been mischaracterized as a relatively trivial psychiatric condition.

it isn't a psychiatric condition but even if we were to consider it as such it might be seen as more trivial in the sense that -

- relatively few sufferers compared to anxiety and depression.

- there are some medication that can help sufferers of mental health disorders. Only the much milder forms would be treated with talking therapy alone, I believe.

- Rather than a chemical imbalance or what have you, it's seen a primarily behavioural disorder. So without any underlying pathology it isn't viewed as seriously.

I think the comments of the past - that ME sufferers are the undeserving sick, merely suffer from the belief we have an illness called ME have stuck and cause discrimination against us, being seen as attention seeking, wanting benefits and support we do not deserve etc. imply the sort of character traits abhorred by the British public.

This same bias may be unconsciously or otherwise held by people who should know better.

 

I don't think it can be reduced to a single reason.

ME/CFS is stigmatised in a unique way compared to other psychosomatic conditions in that many potential avenues of research are not funded due to a combination of preconcieved ideas about ME/CFS which is reinforced by a lack of progress, but compounded by a lack of funding for novel pilot studies. Studies which @Tom Kindlon and others keep pointing out, are usually funded by charities, and community organisations. I'd also argue that part of the lack of progress is because the same types of studies seem to be funded over and over again - truly novel research that has a pathway to lead to major breakthroughs and isn't already ruled out based on prior research is rare. You can't expect to look in the same place over and over again and find something novel.

Apart from raising more money for pilot studies (and funding post-grad students), the NIH grants for centres of excellence are part of the way forward to increase research capacity and fund pilot studies (and was a specific recommendation I made to CFSAC years ago), but we need ten+ times as many grants as have been awarded to make a serious improvement in research capacity.

I have also suggested that we should survey researchers, both those who do ME/CFS research and those that don't and ask them what they believe to be the key factors that are limiting research.

 

I think the suggestion by the BPS crowd that researchers are put off by nasty patients is ludicrous and pathetic. I don't think anyone has been put off by that except Simon Wessely who couldn't handle reality.

As a clinical researcher I wood say the reason for underfunding and lack of research in general is quite simple. It is extraordinarily difficult to think of what one would measure. More or less everything that is obvious to measure has come back normal so far. The problem is just that as a scientific question ME is very hard to see a way in to.

 

Institutionally embedded disease discrimination.

Impedes: research funding, attracting researchers, producing research, treatment development, medical education, physician specialization, access to medical care, and access to disability support.

Promotes: harm, neglect, trauma, distrust.

And these institutions maintain the status quo so their embedded bias is difficult to change.

Our health care systems need to be disrupted with a new model (with patients at the top of the hierarchy, not the bottom).

 

Thanks @Invisible Woman

I do think that we should make a distinction different views on ME/CFS

1) There are those who have argued that ME/CFS is a not an illness, just a new form of hysteria, a label for people unable to keep up with modern society or for women who can't keep up with their dual role of being a mother and working full time etc. These views have likely been harmful but I think they have always been a minority view. Except for perhaps Edward Shorter there are practically no respectable people who would be willing to defend it in recent years.

2) The view of Wessely, Sharpe, Wyller and others is notably different. They usually characterize ME/CFS as a common condition that can be quite serious. But they say that luckily there's an excellent solution for it, namely sending patients to their clinics for CBT.

I think the quotes about ME/CFS being undeserving sick or suffering merely from the belief to have an illness called ME have been misinterpreted. In the first one, Sharpe was criticizing the health system where patients, in whom pathology cannot be demonstrated, are taking less seriously. In the second one, Wessely talked about lack of diagnostic criteria for ME and how patients with the label ME often do not meet diagnostic criteria for CFS.

 

It's quite possible they have. This is something that happens a lot with Sharpe and Wessely - or so they claim. They only seem to correct themselves when directly tackled, never publicly correcting what they said.

Even if it is a misinterpretation, it is one that is very common and, whether correct or not, has informed both the public opinion and the opinion of those who make decisions within the British establishment.

 

Thanks for sharing your view.

This may be one of the most important reasons but I do wonder: why has so little non-biomedical research taken place on ME/CFS, for example on diagnosis, prognosis, risk factors, comorbidities, symptom reports, activity levels etc. It sometimes feels that the team of Leonard Jason at DePaul University, Chicago, is the only one doing this type of research.

Why for example hasn't there been a prevalence study on the European mainland? Given the high disease burden, this would certainly be justified. It could provide answers on many of the things listed above which all don't require a biomedical lead or something to measure.

Another option is to do a prospective study: measure all sorts of things with questionnaires before people get sick and then test if the people who developed ME/CFS had some risk factors that stand out. That would be valuable and doable, even if people don't have good ideas. Judith Rosmalen recently said that she couldn't get funding to get people properly tested for ME/CFS in the Dutch lifelines cohort.

So in short, I think all sorts of valuable ME/CFS research could take place even without hints about the underlying pathology.

 

Vested interests of insurance companies and benefits systems?

One of Professor Sir Simon Wessely's areas of expertise is epidemiology. So, I guess people would look to him to see if it's an area worthy of investment. A very small group of people with a stranglehold in the field.

 

That's also an explanation that comes up a lot.

I realize that many ME/CFS do not receive social benefits even if they should be entitled to given how horrible and debilitating this illness is. But in several Western European countries (UK, Belgium, the Netherlands, Italy etc.), quite a few patients do receive some sort of social security payments. So up to a certain degree, insurance companies and benefits systems should be interested in measuring the socioeconomic impact of ME/CFS and they should be interested in stimulating research on more effective treatments.

In many European countries (like Belgium), the diagnosis or nature of your illness shouldn't play a role in determining whether you receive benefits or not. Doctors are supposed to only look at the functional impairments patients have, regardless of their diagnosis.

As I understand there is however a big problem with private insurance schemes that promise indemnity for all sorts of illnesses but then require 'objective proof' when it actually happens. So people suffering from ME/CFS, fibromyalgia etc. are then screwed. They've paid high insurance as a protection for when they fall ill, but when they do they don't receive benefits because their pathology cannot be 'demonstrated' as the small letters in insurance contracts often specify. At least that's what I heard from within the patient community and what I suspect is the main reason for people suspecting that insurance companies are - someway - hampering biomedical research.

 

As a variation of what some have suggested, and in addition to other ideas, why would a researcher, who didn't have some sort of personal connection, research something that is 'known' to be cured by GET and CBT? If it is 'known' that there are effective treatments and it's not known that despite those 'treatments' there is a great cost to society from ME, why would a researcher see a need to investigate ME?

 

Thanks but I don't think it has ever been generally accepted that GET and CBT cure ME/CFS, despite the controversial PACE trial paper on recovery. If you read guidelines that promote GET/CBT, such as the previous NICE guideline, the general message is that GET/CBT are effective, can help etc. not that it will cure ME/CFS.

I think this explanation overestimates the influence of the PACE trial authors. The controversial recovery paper was not published in a high-impact journal such as The Lancet but in Psychological Medicine. And remember that even the PACE trial authors had to report that there was no difference in long-term outcome between GET, CBT or specialist medical care.

I wouldn't be surprised if many proponents of GET/CBT feel frustrated and think that the PACE trial authors took it one step too far with their claims about recovery - stirring controversy and criticism.

 

Yes, it's easy to see this part of the problem.

And it's entirely possible that answers may depend on getting at least partially to grips with mind-bogglingly intricate signalling and immune functions in real time...

 

Well, I think you are underestimating the effect that the narrative in society of GET and CBT being effective treatments for ME, and that ME is just another word for a common complaint that everybody is effected by i.e. we are just tired all the time. It's got very little to do with the influence of the PACE trial authors, it got more to do with their message about ME tying in with the general narrative about chronic illness and anybody suffering from it has somehow brought it on themselves. I think you need to look at the wider view.

 

I think the analysis makes an error in treating ME as being equal to other psychosomatic illnesses. In the case of ME there is narrative that says the illness is not legitimate and it's especially important to deny medical care and access to benefits and other support measures to patients. You don't see this narrative with most other illnesses. This narrative clearly exists as seen by various countries having currently or in the past conduct a policy of not recognizing ME as legitimate illness.

Then there's also the lack of competition and criticism (outside of the patient community) to the psychosomatic narrative.