'BPS' vs biomedical funding

Has anyone done a breakdown of funding between the two camps?
Ideally I'd like something for UK, and global:
BPS research $ per year, biomedical $ per year.

Clearly there would be some room for argument - for example a biomarker paper that mentions CBT as useful.

I feel a useful argument to many doctors would be 'X million dollars were spent by Y organisations in Z countries on biomedical research. It's not just 'internet activists', but qualified doctors and funders making these decisions.'

 

There is some information on MEpedia, https://www.me-pedia.org/wiki/Funding, some of our members may be able to give more detail.

 

In this post I used a special PubMed search string to try to identify all the biomedical studies and all the non-biomedical studies (eg psychological studies and softer sciences) ever performed in each major nation, and was thereby able to calculate the percentage of biomedical ME/CFS studies that each country produced.

In the UK, I calculated only 41% of ME/CFS studies are biomedical. Bottom of the league was the Netherlands, with only 32% of its ME/CFS studies being biomedical.

Top of the league in terms of percentage biomedical were Italy, Japan, Israel and the US:

And here's the bottom of the league:

Though the UK has still produced a high amount of biomedical studies in terms of total number.

If you look at the large table in the post, you see that the US has produced a total of 417 biomedical studies, and the UK 242 biomedical studies (figures accurate in Jan 2016). The other countries do not come anywhere near that, with Japan being the next down on the list at 98 biomedical studies.

 

There have been many attempts but it's like wringing blood from a stone. Answers are always fragmented and confusing, totals don't add up and someone else might have the answer but no one knows who. Or so they claim. It's a simple question that should have a simple answer but it's obfuscated.

Similar globally. In most countries it's pretty simple: $0. For some countries it's mostly BPS with scraps for real research. The US is the only country doing significant public funding for research and for those we have the numbers but no one has done an analysis yet. It's mostly biomedical, fortunately.

It would be interesting to know about private funding too, which at least mostly goes to real research, except for one weird foundation in Australia that only funds BS studies.

What would be interesting is who normally does that. Say if we asked the same for Parkinson's, who has that answer? And how can we have that kind of expertise in the first place. Everything is still yet to be built.

 

I did produce three videos on funding: one comparing overall spending by NIH on different conditions (Depression, Lupus, MS, Diabetes, HIV/Aids and ME/CFS in 2011, and then an updated one to show the increase in spending on ME in 2017 (screenshots attached - note the dramatic changes!).








I also produced one that focused on spending in the UK: here's a screenshot from that for 2014 covering the total UK spend over the last 30 years at the same scale.

https://www.youtube.com/watch?v=j2biXfyV1bY

These were based on spreadsheets that the MRC and NIHR made available online for a while, and which I downloaded, but which mysteriously disappeared when I asked them whether I had got my facts right about how little had been spent on ME. I still have the sheets, and they cover broadly the period from the 90s to 2012 or so. The databases are massive, and take ages to trawl through, checking for CFS, ME and all the variations, but excluding those that are just fatigue, but you end up with very few studies indeed. It would be wrong to think that the psychologists got a lot of funding: they just got the bigger crumbs.

As far as I can make out, Wellcome, which is a massive charity funding research, hadn't funded any biomedical stuff on ME until possibly very recently, and possibly only one or two smaller psych studies: again it takes an enormous amount of trawling.

In America the equivalent charity is the Gates foundation.

Apart from that, charity funding is pretty small scale compared with other conditions, but given the crumbs that are offered to biomedical research into ME, it is significant.

I don't have anything on spending elsewhere.

 

I forgot to add that my overall estimation is that only around a quarter of spending on ME research is what we would call biomedical, and that the total amount spent over the last 40 years into such research is of the order of the amount of money spent currently in one week into research into HIV/AIDS.

This is, of course, a broad estimate, based on various bits of information but not the whole picture. I have erred on the safe side, so although it could be as much as two weeks' worth of investment, it is more likely to be less than one week's worth.

This does not reflect investment over the last two or three years. But even now, although the percentage improvement in investment is impressive, a reasonable percentage of next to nothing is still pathetic.

 

It would have been different in the past though, as before the Wessely School came on the scene in the late 1980s, I imagine most of the UK's ME/CFS research would have been biomedical.

 

If you trawl through the "secret files" held at Kew, which covers late 80s and 90s, there are a few bits of complaints that the MRC had not funded any biomedical research, and they didn't manage to quote any examples to counter that. Normally they dig back in time to prove that they are fair. So my guess is that there really wasn't much (if any) that was funded like that. I would guess that most of it came down to a specialist in hospital carrying out a few tests on a few patients under the NHS budget. I do have a few examples of that happening.

It is quite hard to track back before the 90s with too much confidence, because the internet didn't really exist, and everything from then is on paper.

 

@rvallee which is the foundation that does this?
If you’d like to ask them questions and write about it for ME Australia, I’m sure there would be a lot of interest! Maybe even change things...

 

Here’s Australia’s government spending @rogerblack:

• A prospective study of the psychiatric & medical characteristics of post-infective fatigue & chronic fatigue syndrome’, (simplified title “Do some chronic fatigue states result directly from infectious illnesses?”), led by psychiatrist Prof Ian Hickie at University of New South Wales ($500,000) in 2001-2005. Presumably this was for the ‘Dubbo’ study, published in 2006, which followed a group of people diagnosed Epstein-Barr Virus, Ross-River virus or Coxiella burneti/Q Fever to see who developed a prolonged illness (chronic fatigue syndrome).

• ‘Respiratory and neurological health, symptoms and chronic fatigue syndrome in Australian Gulf War veterans’, led by Dr Helen Kelsall at Monash University ($58,000) in 2003-2004

• Two fellowships at the University of NSW for Prof Andrew Lloyd ($1,065,000) from 2008-2017

Oddly if you aren’t unfamiliar with Australia’s history, the study led by psychiatrist Hickey is not BPS but the fellowship money for immunologist Lloyd is going to BPS work.

 

Can't remember, sorry. I think they recently gave funding to one of the universities that do mostly psychosocial stuff. With either the XBox or the aqua therapy trials? It's inane stuff so very forgettable

 

@rvallee The Mason Foundation has funded some shockers of studies, perhaps you are thinking of them?
(Including some I’ve started petitions asking them to stop funding.)

You are right about the Xbox study (https://www.meaction.net/2017/03/26...activity-trial-claims-it-has-patient-support/)

Also Lloyd’s rollout of training materials to medical professionals, teaching them how to inflict GET/CBT (https://meaustralia.net/2017/01/18/...tition-to-stop-graded-exercise-therapy-trial/)

But they have funded non BPS work, including brain scan work at Griffith University:
https://meaustralia.net/2018/05/23/brain-differences-shown-in-chronic-fatigue-syndrome-fukuda-study/
Glycolysis studies at Griffith:
https://meaustralia.net/2018/07/25/...energy-demands-in-me-patients-immune-systems/
Murdoch Children’s Research Institute
https://meaustralia.net/2019/03/13/...me-often-wait-more-than-a-year-for-diagnosis/
and I think they’ve also funded work at the MECFS Discovery Network, so not all bad.
A lot of room for improvement though!

(Forgive all the links, my memory is not so good these days so I have to go looking for things that I should be able to remember.)