Why is ME/CFS getting so little research funding?

[ME/CFS Skeptic]

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.

Thanks. I merely wanted to argue that the view that ME/CFS can be cured with GET/CBT (and so no further research is needed) probably isn't widespread.

Regarding the narrative of GET and CBT: the data in our article about underfunding of ME/CFS research is from the US where the biopsychosocial view of ME/CFS has been less influential than in the UK. Also: I think one could argue that there is a similar narrative about depression where exercise and CBT are believed to be effective, yet it seems to get much more funding per disease burden than ME/CFS.

That ME/CFS is just another word for a common complaint that everybody is affected by i.e. we are just tired all the time, looks like a different issue and explanation. It could be that this plays a big role in letting researchers and funders underestimate the illness. Do you mean the name (CFS versus ME) or just the general perception that ME and CFS are about being tired all the time?

 

[Peter T]

I don’t know if this is relevant, but it is interesting to see that funding for ME research is about the same as for alcoholism.

Alcoholism is a condition which is considered self inflicted where the sufferers are blamed. It is also a condition where financial benefits are often denied to sufferers. It would be interesting if we had some way of measuring how deserving the public and the science community see different conditions and how that corresponds to levels of research funding. Though also alcoholism is also a condition that sits between different medical specialisms and different services which could be an alternative explanation for its research levels.

In relation to the suggestion that at least in the UK, the BPS crew have served to limit funding into biomedical research, there are the various anecdotes of potential researchers being driven from the field, that just as Prof Crawley sought to inhibit David Tuller’s evaluation of her work by political machinations at a senior level in his university, senior BPS figures have more effectively lobbied in British universities against junior researchers. There are rumours of prospective PhD students that do not belong to the BPS crew being firmly steered in other directions.

 

[Jonathan Edwards]

Thanks. I merely wanted to argue that the view that ME/CFS can be cured with GET/CBT (and so no further research is needed) probably isn't widespread.

Agree. Research into illnesses is nearly always initiated by a team led by or including a clinician. Although PWME may be surprised the reality is that most clinicians who encounter ME (like rheumatologists or GPs) have never heard of Wessely for Sharpe or the PACE trial. I had to explain about PACE to my department in 2015. BPS activities follow from pre-existing prejudices that all doctors have been aware of for at leas the last fifty years. I don't honestly see the BPS crowd as having a negative effect on ME research. If anything they have brought it to attention through the PACE debacle. Maybe without the PACE crowd even fewer doctors would put a name to ME. I think their importance is inflated - not surprisingly, maybe.

What all doctors are aware of, from the media and from patients are the quack claims about mast cell activation syndrome or vitamin deficiencies or allergy to smells or whatever that are put about by physicians claiming to be on the 'biomedical' side. I think those have a seriously negative effect on the attractiveness of the illness as a topic of study. They give the false impression of hypochondriasis.

 

[ME/CFS Skeptic]

Thanks @strategist

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.

Could you give some examples of this from influential or respected sources?

I think the general BPS narrative has been a bit different: that ME/CFS is a difficult and frustrating condition, that patients deserve respect even though there doesn't seem to be a demonstrable pathology, and that it can be managed effectively with GET or CBT.

That ME/CFS is not legitimate and that it is important to deny medical care and access to benefits and other support measures to patients is quite something else. BPS proponents have only hinted at this in some publications but usually in a more modest and nuanced manner.

They usually don't argue that ME/CFS is not legitime or they would be pleading against their own expertise. I think above all, BPS proponents want to present themselves as the experts on ME/CFS patients (even though they sometimes use different diagnostic labels): they like to argue that they know what their condition is about and how to manage it.

 

[Trish]

I wonder whether it is partly a problem of ME not obviously belonging to any one clinical specialism. Symptoms range across muscles, neurology, heart/circulation, gastro, and more.

If someone with ME is referred to one specialism, does that person see them as their responsibility to oversee their care and treatment for all their symptoms? Or do they see them just for their POTS, or their gut pain, or their muscle pain, without considering the whole picture. So do they take 'ownership' of their health, and try to learn more about ME, or do they just pass them back to the GP or CFS clinic run by therapists and consider their job done?

If no medical specialism takes responsibility for ME, they will not include it in their areas to keep up to date on, or run sessions at their conferences on it, or feel any responsibility to research it, and so on.

In the NIH, I understand it was for a long time put in the Womens disease section, and that section had more obviously female only conditions to fund and gave it no priority. Now, I think it's back to being an orphan without a home. Is that right?

 

[SedulousSloth]

Great work Michiel.

Personally in the UK I think it’s the direct influence of the psychosocial lobby. In the way they have infiltrated themselves in the decision making processes, such as on the NICE panel, on the SMC board and the CMRC. This document shows how influential they are in the CMRC and MRC. Is it just a coincidence that the people influential in the CMRC got all the research funding? How is it that the psychosocial lobby hold such high position and influence in all the decision processes when it comes to ME? Who decides who is on these decision making panels? Why did the main charities just go along with it such as the change to CFS/ME. Why were the 2 main charities “happy” to go with the majority rather than do what’s best for patients?

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf

 

[Hoopoe]

Could you give some examples of this from influential or respected sources?

Yes, I recall plenty of example in low profile presentations and some papers where it's only hinted at (like the Sharpe "illness without disease" paper), but like racism and eugenics, this kind of opinion is not one that is openly shown. The existence of these views is inferred from behaviour, not words.

An example would be stating that the "illness is very real" and then recommending CBT which aims to convince the patient that they don't have a chronic illness.

 

[Midnattsol]

I wonder whether it is partly a problem of ME not obviously belonging to any one clinical specialism. Symptoms range across muscles, neurology, heart/circulation, gastro, and more.

If someone with ME is referred to one specialism, does that person see them as their responsibility to oversee their care and treatment for all their symptoms? Or do they see them just for their POTS, or their gut pain, or their muscle pain, without considering the whole picture. So do they take 'ownership' of their health, and try to learn more about ME, or do they just pass them back to the GP or CFS clinic run by therapists and consider their job done?

If no medical specialism takes responsibility for ME, they will not include it in their areas to keep up to date on, or run sessions at their conferences on it, or feel any responsibility to research it, and so on.

In the NIH, I understand it was for a long time put in the Womens disease section, and that section had more obviously female only conditions to fund and gave it no priority. Now, I think it's back to being an orphan without a home. Is that right?

I think this contributes to us learning nothing about it at university.

For my clinical subjects diseases have been neatly put into different specialities, and ME (and many others) are just not mentioned. My clinical subjects are not as in depth as I hope they are for doctors though (clinical nutrition, we just learn the basics). And while cancer, cardiovascular disease MS, arthritis, depression and more have appeared in different subjects, also including researchers talking about "things that would be interesting to look at in the future/this we still don't know about but maybe in the future" etc., there is little to help students develop an interest for ME as it's just not mentioned. I didn't learn about it so it couldn't possibly be that much of a deal? As there are fewer researchers you're also less likely to stumble into a research project for your (under)graduate thesis, so less recruitment from the student mass as well?

 

[Nightsong]

One often overlooked reason is medical education: rare is the medical student who has never been taught "not to reinforce psychosomatic presentations", or something similar. If you have been taught to believe that sympathy with or even genuine acknowledgement of a patient's suffering may result in the persistence of their symptoms. . . inculcated early on, these views may result in ongoing stigmatisation of patients with presently inexplicable symptoms throughout the course of a medical career.

This attitude is reinforced by much of the psychiatric literature regarding ME, and this far predates the PACE trial. To give but one of many, many examples - in the 1991 PVFS British Medical Bulletin, Woods and Goldberg make their view explicit that official sanction perpetuates illness behaviour:

The recognition of PVFS by the Department of Health can be viewed as an attempt to legitimise the sick role, and thus regard the chronic illness behaviour manifested by the patients within the ambit of 'normal' illness behaviour. Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the 'M.E. Society', which advocates total rest. . .

Once sanctioned by a doctor, the symptoms are more likely to persist; the persistence of the symptoms is mistaken for confirmation of the diagnosis.

These attitudes are not confined to a small number of psychosomaticians; they are common. There are also the doctors that simply refuse to believe in the existence of ME/CFS; the infamous BMJ poll of 'non-diseases' resulted in ME being marked as a 'non-disease' by 72 out of 570 respondents.

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 newspaper articles were the tip of the iceberg. What matters more are the perceptions of our patient group propagated by doctors in more private settings, where abuse of patients is still unfortunately very common, and not the occasional irruptions into the mainstream press.

 

[ME/CFS Skeptic]

This document shows how influential they are in the CMRC and MRC.

Thanks but our blog focuses on numbers from the US where the biomedical view has been more influential. Large agencies such as the NIH, CDC, FDA and most prominent newspaper article in the US describe ME/CFS as a serious debilitating "biological" illness.

So this suggests that there is more to it than the influence of the psychosocial lobby.

 

[Arnie Pye]

There are also the doctors that simply refuse to believe in the existence of ME/CFS; the infamous BMJ poll of 'non-diseases' resulted in ME being marked as a 'non-disease' by 72 out of 570 respondents.

I've never seen that poll before and I found many of the things that had been voted for as "non-diseases" quite shocking. It made me wonder what the doctors responding to the poll thought a disease actually is. After all, doctors treat high blood pressure and high cholesterol, and yet some doctors in the poll thought they weren't diseases. So it begs the question, "Why treat them?"

 

[Hoopoe]

If we were to rank the mainstream acceptance and respectability of ME/CFS, it would be higher than extreme fringe like electrosensitivity but lower than psychiatric disorders (which in turn are less accepted and respected than ordinary medical illnesses like say hypothyroidism).

Also the only thing holding back research funding is society's attitude to the illness. There are simply no other answers. The money is there, it's just distributed according to a set of prioritites that don't much care for ME/CFS (of course nobody would admit this when pressed). The researchers can be attracted into the field if there is the desire to do so. Worthwhile lines of research exist as well.

 

[FMMM1]

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.

I think I recall that you @Jonathan Edwards suggested that this was a reason a GWAS study was a good idea i.e. GWAS may give clues to the cause of ME. Bit about GWAS here* https://en.wikipedia.org/wiki/Genome-wide_association_study

Also @Simon M (from memory) has highlighted that a number of studies have found "something in the blood" e.g. Fluge & Mella's 2016 study [https://pubmed.ncbi.nlm.nih.gov/28018972/]. Cara Tomas's recent paper seemed to me to be related - but suggested a genetic basis.

Bupesh Prusty's work on mitochondrial fragmentation has been controversial but to me interesting.

One of the difficulties seems to be chasing up leads e.g. Fluge & Mella's 2016 study hasn't been followed up quickly - OK Cara Tomas's study is out (last few months) but we haven't seen a lot of related research in the last 4 years.

I guess GWAS studies have been running for decades - 2002 according to this*. So why has it taken so long to get to the point where an ME GWAS study is funded? ME Action have highlighted that diseases where those suffering from the disease aren't blamed for their disease get funded (self inflicted) - so alcohol related liver damage doesn't get funded ---. In the case of ME, blaming people for their illness (GET - get out of bed) means that it's not a political priority.

EDIT - forgot to say that I agree with this statement - "The problem is just that as a scientific question ME is very hard to see a way in to."

@EspeMor @JaimeS

 

[dave30th]

This doesn't seem to have hampered researchers from stepping into the field.

One reason was that it was impossible to deny that AIDS was killing us (by us, I mean gay men like me in the 1980s). So at some point the funding agencies couldn't pretend it wasn't something.

Also, it's important to point out that the ONLY people who seem turned off from entering the field by patients' supposed hostility are colleagues of the BPS folks, who all parrot that. I have never heard that from anyone interested in pursuing legitimate biomedical research into something other than CBT/GET/Lightning Process

 

[SedulousSloth]

Thanks but our blog focuses on numbers from the US where the biomedical view has been more influential. Large agencies such as the NIH, CDC, FDA and most prominent newspaper article in the US describe ME/CFS as a serious debilitating "biological" illness.

So this suggests that there is more to it than the influence of the psychosocial lobby.

It’s relevant as the UK psychosocial lobby have strong links with the US private insurance industry. Unum for example were influential in UK government welfare advice. Private insurance in the US have long been looking to de-medicalise and downplay ME, & renamed it CFS with the help of the Oxford definition. https://politicsandinsights.org/201...ments-work-health-and-disability-green-paper/

The links with US private insurance companies are well documented at http://www.margaretwilliams.me/

How it fits in specifically with ME history is detailed here: https://www.hfme.org/whatisme.htm

The psychosocial lobby in the UK were able to flood medical journals with psychosocial studies, effectively drowning out biomedical research papers. The SMC made sure the UK media focussed on psychosocial papers ensuring they had maximum coverage and downplayed advances in biomedical research, which often went under reported. This has a massive influence on how the illness was seen in all English speaking countries. Why do you think this hasn’t had much influence on research policy? We know the illness is biological, so why does the psychosocial model persist in the minds of so many medical practitioners despite large agencies publicly supporting its a debilitating biological illness. Could it be the influence of US private insurance companies which dominate the medical field in the US?

 

[Robert 1973]

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.

As far as I understand, HIV activists were campaigning against the lack of investment in research etc. They were not accused of threatening or harassing people who were doing bad 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.

It was probably untrue when they made the accusation. But I think that the accusations themselves, which were part of an orchestrated smear campaign against patients and BPS critics, may have had an effect in deterring scientists from getting involved thereafter.

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.

I take your point but very difficult problems don’t usually deter the brightest minds – they attract them, as well as all the cranks.

I don’t think the best minds would have been deterred if:

1) The disease burden had more widely recognised
2) Funding bodies had made it clear that adequate funding was available for non-psychological research
3) The unevidenced view that there is no pathology preventing recovery had not been so widely promoted and accepted
4) Patients has not been smeared as anti-science militants who threaten and harass researchers.

(Some of these points were discussed in this thread)

I know of one mainstream UK researcher who told me they wouldn’t apply to the MRC for ME research funding again because in their assessment the people at the MRC assessing grant applications for ME research were prejudiced against biomedical ME research. I don’t know how they knew but they told me that their proposed immunology study was rejected by two psychiatrists who didn’t have the knowledge to understand the proposal. I also think it is significant that the ME Biobank received funding from the NIH rather than the MRC or the NIHR.

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.

These a very good questions. In the UK I think the CMRC (and MRC group that proceeded it) gives us a clue. It spent years achieving less than nothing because the wrong people were involved in setting it up, and the wrong people were running it [Edit: I didn’t mean to criticise everyone involved with running it. But those with unhelpful views seemed to have most influence]. Only since Chris Ponting joined does it seem to have started doing anything useful, and it is notable that ME is way behind other illnesses in getting a GWAS, including schizophrenia, bipolar disorder and anorexia nervosa.

 

[Andy]

This document shows how influential they are in the CMRC

You'll find that the CMRC have changed a lot over the last 6 years.

 

[FMMM1]

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.

Couple of researchers who might provide insight into lack of funding - Warren Tate and Carl Morten

 

[Invisible Woman]

If memory serves (& if usually doesn't) there were interesting research leads pre and early 80s. Many of patients who diagnosed (UK) before that era (I was diagnosed late 90s) seem to feel that there was a sudden shift in attitudes and research from the 80s onwards.

This coincides with the rise of BPS.

 

[eva luna]

our blog focuses on numbers from the US where the biomedical view has been more influential.

I am not so convinced of that. I remember when the IOM report stated in 2015 that it was a serious medical, not psychological disease, that it was presented as a historic step for the disease. Implicitly, this indicates that mainstream opinion previously was different, even in the US.