Why is ME/CFS getting so little research funding?

I think it doesnt help that most people know at least one person who has ‘recovered from ME’ by doing the LP/Mickel Therapy etc...
If we aren’t diagnosed correctly, and there is a widespread perception that people mostly get better, then why bother with spending lots of money on research? Particularly if those of us inconvenient enough to remain ill are then perceived as malingering or as needing psychological help.

 

I agree with Jonathan: it's the lack of a clear physical measurement of ME that allows others to deny that it's a real disease. You can't actually be diagnosed with ME because there is no test for it; you can just get a doctor's opinion that you might have ME. Actually, even if there was a clinically verifiable marker for ME, we still might not get attention because there are no indisputable measurements for our symptoms. If a PWME doesn't manage standard results on an exercise bike or a cerebral challenge, some people will just assume that the person 'isn't trying hard enough'. Even if you measure reduced oxygen usage or some other physical measurement, people will assume "they didn't exercise enough before'. I can't think of any way to measure ME's limitations on a person's abilities in a way that other people can accept as valid limitations.

Cancer And Alzheimer's gets more funding because people believe that they can get those diseases. Most people don't know what ME is, and thus don't believe that they can get it. Even if they have heard about ME, and that it can be triggered by viral infections, people will think: "I've had colds before and never developed ME, so I'm safe." Diseases that have photos of children in wheelchairs can get funding; photos of healthy-appearing people in bed during the daytime will not get funding.

I've long thought that ME would be easier to get proper medical attention for if we had blood spurting out of our ears, or some other such visible, indisputable marker.

 

Maybe it’s been said or alluded to in a post, but one reason is that most of us don’t die a slow and horrible death from this disease like e.g. MS or ALS. ME/CFS also doesn’t appear to be as truly neurodegenerative as these illnesses or accumulate visual long-term damage like e.g. RA.

So without this “evidence” that even your next door neighbor would notice, humans can’t seem to care enough. We get to live a horrible “life” (existence a better word this isn’t living) that has a worse QOL than MS or PD and similar on average to untreated RA.

I know people mentioned some psychiatric disorders getting more funding, but remember the prevalence of depression and anxiety disorders are way higher than ME. Like ME, these disorders also don’t have a clear biomarker, are invisible, you don’t die directly from them, and you don’t see obvious cumulative long-term damage. But debilitating psychiatric disorders are so prevalent and pervasive across all demographics so NIH seems to care more.

 

When recruitment for the GWAS begins here in the UK, patients will presumably have the option to register a 'I've been diagnosed with ME but I don't want to provide a sample' response, as well as those who are willing.

The project is the closest thing we're going to get to a prevalence study in the near future, and the number of patients who can be reached – even if ultimately some decide not to submit genetic material – could presumably be used to inform estimates of disease burden and economic cost. This will surely help support the broad case for more research funding? You do tend to get more attention when you start talking about huge sums lost in income tax revenues and paid out in welfare support over decades of patients' lives, rather than about how crap it is having to live with a chronic illness!

 

Below is a lightly edited version of the contents of an email from Karl Morten that he has given me permission to share. The original subject, as is probably obvious, was research funding in France but the principle is universal.


"The big problem is that funding is not allocated for ME/CFS projects from the major funders. This means our research which is not at the strong hypothesis stage is not competitive in an open call.

What you need to do is push for perhaps a 2 million euro per year pot for ME/CFS research in France. This will bring in researchers with small grants 250,000 euros in 8 areas. These can run over 2-3 years.

The researchers can then then come together as a group running their own projects with opportunities to collaborate across the disciplines. This needs to be a 5 year programme to allow momentum to build. The government would have to commit to 10 million euros over 5 years.

We have had three big grants turned down on ME/CFS and Chronic Lyme. This approach might help, at the moment we can’t get this work funded! This is really annoying. With a 10 million pot for ME/CFS research over 5 years you would bring researchers into the field.

These applications are a massive amount of work and I can’t spend the time required putting these projects together and not getting them funding. The MRC proposal has taken years of research with charity funding and planning to get to this point and we are still not considered competitive in an open call.

Crucial we have a pot earmarked for ME/CFS research!! I won’t be putting in one of these big grants in again with the current funding system in the UK. However I would be happy to compete against other ME/CFS projects on a call for ME/CFS research. Open calls are a waste of time. Our knowledge base in ME/CFS is no-where near good enough to be competitive.

Governments and not small ME/CFS charities need to change this."

 

HHS and the Steven & Alexandra Cohen Foundation Announce $25 Million “LymeX” Innovation Accelerator – Largest Lyme Public-Private Partnership in History

https://www.hhs.gov/about/news/2020...-25-million-lymex-innovation-accelerator.html

Some background here https://www.businesswire.com/news/h...Times-Piece-that-Rejects-Chronic-Lyme-Disease

SAC gave some money (3 dead sharks worth*) recently for Lyme. Don't want to derail this thread, but isn't the party line that chronic (not acute) Lyme=MECFS?

* https://www.businessinsider.com/steve-cohens-extravagant-toys-2015-2

Makes sense to continue to pursue big money from and pressurize billionaires like SAC and VK......

Private and public money will come in for post-covid ME/CFS--hopefully they will call it ME/CFS and not name it some new disease.

 

Yes, the key point is we need funding for research centres to build research capacity, rather than expecting equity through the existing funding routes.

 

Here's an example from Sweden. A columnist/writer/nurse comments on a recently published BPS book on ME:

Apropos bias, she recently wrote a book herself, about the replication crisis and bad research,...

https://twitter.com/user/status/1325887166770270213

 

I'd heard this before e.g. I think Maureen Hanson may have outlined the problem and solution ("ring fenced" or "set aside funding"); however, I'm impressed by the clarity/directness of Karl's message - thanks.

@Michiel Tack @Giada Da Ros @EspeMor

 

My impression for many years, from a position of ignorance out here in the antipodes, was that ME/CFS research was ignored because the real cause was already known by Them What Control Things and that it was too useful/expensive for them to let it go. It would explain a lot. And I imagined many ways that that might be, from bad batches of vaccines to toxic-metals poisoning being worse than has been admitted. But, assuming that the ignorance is general, there is still a powerful motivation for employers and the insurance industry to deny any poorly-defined malaise, as has been noted; and the best that I can do, I think, is to provide a particularly-egregious example of that phenomena from my country:

Forensic feuilleton: The spectre of illness terrorism by Robert M Kaplan.

In this article, from this mischievous magazine, this forensic psychiatrist employs the familiar arguments against ME activists but took it to a level that I've not seen; in Australia, at least. I quote (deploying clinical tongs):

<<These groups pour out their frustrations on the internet which provides never-ending reiteration and confirmation of their beliefs in the most subjective and personalised fashion while refuting any scientific evidence to the contrary.

In the face of this torrent of propaganda, believers will ramp up their rage at not having their illness beliefs accepted.

What is worse is the actions they make in response. Take the ME group, which is large, vociferous and belligerent. Any medical scientist who has views contrary to the group belief is subjected to tirades of virulent abuse.

Professor Myra McClure’s research found that ME was primarily a psychiatric condition. Such was the hate mail she received that she stopped her work.

Professor Simon Wessely, President of the Royal College of Psychiatrists, who came to similar conclusions, received a number of death threats and moved out of the field.

More recently, Dr Michael Sharpe found a program of CBT had good results in alleviating the symptoms of ME. He was accused of being a fraud and a charlatan, if not conspiring in a cover-up. He has now given up his work because of what was described as the hatred, insults, violent and unbalanced nature of texts and mail he received.

Showing the degree of irrationality, if not fanaticism, in the group’s reactions, these are experts who unequivocally accept the existence of ME and find treatments that are scientifically confirmed to work on condition.

The objection of the extremists is that programs of exercise and CBT means that ME is a psychiatric illness, which they emphatically refute. The same applies to studies which, despite extensive funding and research, are unable to show that ME is caused by a virus.

There is an adamantine refusal to accept that psychological treatments can be used for a range of medical disorders and classifying things so categorically is unscientific dualism.>>

That sort of bilge is familiar enough but it was used to support a contention that if <<the combined effect of governments acting in unison>> don't bring <<psychotic and paranoid patients>> <<under control>> then his colleagues run the risk of being attacked as were some doctors in their Wickham Terrace chambers here in Brisbane. As it happens, the event he cited, in which two doctors were shot dead, occurred sixty-five years ago, today. Also, as it happens, it was only a few hundred yards away from where I live. The event is largely forgotten except by citizens of a certain age but I was aware of it due to the odd, historical discussion of it on radio programs. And a newspaperman who attended the scene was so haunted by it that he returned to the story in his retirement and wrote a book on it. It was very much an exceptional event in this town and that Kaplan had to go so far back in history to find such an event obviously adds to the weakness of his point.

Indeed, I'd go so far as to tamp down my rage at not having my illness belief accepted and assert mildly that the only terrorist here is Kaplan. He was trying—pretty desperately, and this was only a little over a year ago when he must have been aware that the wind was changing—to terrify his younger and more impressionable colleagues into squashing any sign of an illness belief regarding irrational tiredness in their patients—or else this would happen to their chambers:

Tragedy at Wickham Terrace

And, surprise, surprise, one of the positions that he has held, amongst much medico-legal work, is as an Authorised Assessor of Impairment at the NSW Workers Compensation Commission. I can just imagine him squirming in his seat when faced with a mad, malingering worker who complained of being too exhausted to go to work, assessing their capacity, once they went home and their psychotic episode of imaginary tiredness wore off, for making IEDs... I would like to imagine that he would now, after the NICE news, find in himself the capacity to apologise—but the gratuitous ignorance and disrespect that he displayed in that article says to me that someone would have to put a bomb under him before that happens...

 

Watching your belief system crumble can be uncomfortable. Lashing out seems to be a typical psychiatrist response.

 

Makes you wonder whether he is in any way related to Jon Kaplan.