The Canary: The truth about NHS research funding that should shame the government

Andy

Andy

Retired committee member
Steve Topple certainly has the bit between his teeth. :)
A parliamentary question from an SNP MP has forced the government to reveal some disturbing facts about its funding for research into a chronic disease. But when put together with other figures it reveals a crisis in an area of UK healthcare.

A chronic disease
Glasgow North West MP Carol Monaghan asked a written question of Health Secretary Jeremy Hunt, in relation to research funding for myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or ME. It is a chronic systemic neuroimmune disease, affecting an estimated 17 million people worldwide and around 250,000 people in the UK.

ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or ultimately told it’s ‘all in their heads’. But in recent years campaigning by people living with ME and their supporters has stepped up, with Monaghan being a part of that movement.
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https://www.thecanary.co/discovery/...rch-funding-that-should-shame-the-government/
 
Great work by all involved.

Worth pointing out a couple of things in the government response: First, it doesn't specify 'biomedical', so presumably it includes all research including eg Crawley's work on 'Chronic Fatigue'. Second, the total includes spending by charities etc, so government spending is even lower than the figure given.
 
Top bloke Mr Topple

They have got some neck including the charity funding in the PQ replies when the question clearly stated from the public purse Going well beyond being economical with the actualite. The civil servants who wrote and approved that need a kick up the backside for misleading.
 
Research funding is my biggest bug bear. I'm glad it's got some attention

I'm going to comment separately on figures but just have something to say regarding charities which from this you'd think have been lobbying relentlessly for funds, they haven't.

The worldwide funding comparison printed was actually afaik commissioned by the CMRC , the work done by Sonya chowdhury of AFME & she presented the "shocking findings " at the CMRC conference a couple of years back, it was decided to give it just ten minutes of time - just enough to outline it, no time for comments or discussion. There was however a discussion led by MRC on why researchers were not interested or getting funding , it was all the fault of poor quality applications and Hugh parry blamed patient hostility/harassment , nothing was said critical of MRC lack of positive action, nothing was said constructive at all by our charities,, there certainly wasn't demand for more funding given

The MRC position was to ring fence once in 2012 and refused to do more. The charities said we need more, MRC said no, charities said ok then and worked the MRC way of CMRC, regularly defending that ring fenced funding wasn't something MRC usually did. Contrast that with the current nih behaviour and #MEAction response. There has been no campaigning, petitions on funding led by the charities and I would say that the #MM demonstrations more focused on this issue have been weakly supported.

So when Charles shepherd critises the funding levels and says all we are asking etc , I'm quite surprised as what different would he have liked to see the past ten years and in what ways were they lobbying for it? When he says he cant understand the disparity in funds MS vs ME, MS is recognised, established, cared about with scientists all over wanting to do research, with a fifty year history of it etc, did the charities think in a uk with the CFS climate the way it is, that the CMRC and one years RFA funding alone was going to turn things around sufficiently because that's all I've seen offered and asked for the ten years I've been waiting? . I know MEA are saying that they think NOW that the MRC should be putting up money for centres like NIH, something seemingly Being negotiated back stage, I wanted more assertive action Years back.
 
Skycloud said:
I also don't know why there isn't more noise about the lack of funding in the UK. We just seem to be dancing to the tune of others all the time instead of setting the agenda.
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The fact that the research they do fund is so often harmful BS that attracts loads of criticism is a bit of a problem. Seems that the people they turn to as 'experts' on CFS are often quacks.
 
Skycloud said:
I also don't know why there isn't more noise about the lack of funding in the UK. We just seem to be dancing to the tune of others all the time instead of setting the agenda.
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I think it's because there is actually quite a close relationship with the CMRC and the MRC NIHR, their representatives attend at least some meetings and the conference eg here

http://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-06.06.17.pdf

So they're all sitting on numerous occasions deciding their own plans, whilst we as patients are expected to just accept their pace (I know it's been alluded to that something big is now underway but we have wasted a lot of years).. I understand uk historically might be very resistant but personally if they're not hitting acceptable levels of action and investment, from way back I would have preferred lobbying with patient action rather than instead the CMRC existence and achievements being repeatedly promoted as our great force for change and funding under investment not called out.
 
Esther12 said:
I just had a little flash of how much I take for granted the improved coverage we've been getting.

Every couple of days there's a new article out that five years ago would have had me weeping with joy!
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Yes professional lobby sitting down in meetings with people only gets you so far it needs to be part of a picture including activism which generates press coverage and public and political awareness. We have a movement covering these angles now.
 
Esther12 said:
I just had a little flash of how much I take for granted the improved coverage we've been getting.

Every couple of days there's a new article out that five years ago would have had me weeping with joy!
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Just worth repeating.

Take it from a grizzled old timer in this game, we have come a long long way since the dark days of the 80s and early 90s, especially over the last 2-3 years.

Still a long way to go, and never say never, but I think we are past the point of no return.
 
Sean said:
Just worth repeating.

Take it from a grizzled old timer in this game, we have come a long long way since the dark days of the 80s and early 90s, especially over the last 2-3 years.

Still a long way to go, and never say never, but I think we are past the point of no return.
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the numbers who signed the MEA NICE petition in September, the numbers of people who will have seen Unrest, and the numbers of Millions missing events this year have all blown away the narrative around a small number of patient activist keyboard warriors

-utmost respect for people across the country who have put themselves forward for local and national press coverage telling their stories
-utmost respect for people who organised Millions Missing events and Unrest showings
-respect as well for those involved in advocacy with NICE but I think it takes extra courage to go out to the press and public
 
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(Just copying a message I wrote last year on Phoenix Rising)
I'm aware of a lot of efforts to create pressure of various sorts in the UK over the last 15 years or so.


- Action for ME ran a 1% campaign, calling for £35 million per year to be spent on ME research, 1% of the total cost per year of the illness. I remember they had a launch on one of the London bridges with a big banner and 200 people. This was the second attempt to launch it: they didn't get enough people they felt at the first event. I can't remember the details of the campaign but I think it involved writing to your MP's and possibly also writing to the media.


- There were annual protests in and around May 12 from around 2003 to 2007-8. Then there was the all fall down protest in 2013 (?) when I think 96 people attended and the MillionsMissing protests.


- There was the "Inquiry into the status of CFS / M.E. and research into causes and treatment", sometimes called the Gibson Inquiry, run by a group of parliamentarians. People could make written submissions (I spent days on mine) and then there were also oral presentations.


- There have been lots of petitions


- Paul Humm (?) ran a campaign called Research in ME (RiME) where he was looking for biomedical research. He sent out dozens of newsletters with updates on what he was doing and encouraging people to do their own lobbying


-I can't remember the details but I'm pretty sure the issue has been brought up on a number of occasions in All-Party Parliamentary Group which existed continuously until the last few months. It may also have been discussed by the Forward ME Group headed by the Counters of Mar.


-There were various Parliamentary questions over the years.


- Then various charities have also complained in their own ways about the lack of biomedical research.

The system is also not the same as the US. The US budget is so big that they have annual breakdowns for the different illnesses. That doesn't happen in the UK or most other countries as far as I know. Politicians in the UK and most other countries also are not supposed to really get involved as much as in the US.
 
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