Thanks for sharing. it interesting to me from a different funding and campaigning issue, mainly research funds and how /why they are calling for more. I think there was a ten - fifteen year gap from the PACE petition to the NICE and I don’t remember direct ME community funding lobbying but I have poor memory. The NICE petition Was certainly Worthwhile but I personally would like more patient lobbying on things that could improve. They say :
“Dementia research and treatment lags far behind other major disease areas, like cancer. In 2016-2017, the Government committed £83.1 million of public money to dementia research. In contrast cancer research received £269m in 2015-2016. This inequity in research funding has resulted in slower progress in our ability to treat dementia than we’ve seen in other conditions. With no way to prevent, cure or even slow down the diseases that cause dementia, government must increase research to find new treatments.”
You could say that about ME.
Facts figures relevant to ME (for anyone interested, I was working it out for myself mainly)
If Alzheimer’s are calling for a rise to 1% of cost going to research from 0.3% of costs as fair funds , to apply that to ME would be like us asking for £30m/ year.(from minimum estimate of overall cost to economy of ME at £3.3b from 2 studies, , one other said 6b I think)
To be equally served to Alzheimer’s current 0.3 % spending would be £9m/year for ME research,
To be getting 0.1% of CFS cost to economy as research spending would be £3m /year
The £1.5 m we received as “one off fanfare big spend” in 2012 was 0.05% of the £3bn cost to the economy and we, unlike normal incentivising funding, only got it for one year, that’s a crucial difference to me because MRC usually put in money over a few years in areas they want to stimulate. They refused for ME even when conservative AFME Asked for sustained funding and look at the consequences .
And our actual reality of around £2-300 thousand year central biomedical research funds (based on £2m over ten years biomedical research) is around 0.01% of overall cost so that is 100x less per year per cost to economy than what Alzheimer’s is asking as a fair “ratio of costs to spend” research funds.
Afaic it’s this type of facts and figures and comparisons we should be Campaigning with. Alzheimer’s society are doing a good job
a) by petitioning and lobbying on central funding (we don’t do that)
b) by asking for more even when the government itself feels its taking special measures on dementia and has responded to their petition saying:
“This response was given on 25 October 2018
Dementia remains a key priority for the Government. We are on track to exceed the pledge to invest £300 million between 2015 and 2020 and continue to fund research for dementia treatments and cures.”
https://petition.parliament.uk/petitions/228954
C) by making it clear what they wAnt and making the case for it ie the costs are this much , it makes sense to therefore invest this much just 1% of that to help people and ultimately bring down costs.
Obviously some might be offended at comparing ME to dementia ( and making similar calls) which is more associated routinely with devastating outcomes and it affects more people etc but there’s also factors such as young years being more precious (I believe that but sorry if that offends people) and the 25% severe population of ME being desperate,plus also it’s quite common. The economic costs are obviously huge with dementia but I think that using the same argument as ratio cost / spend is valid and effective, especially when , unlike dementia we are far removed from additional /supplementary public sympathy and financial support.
And they also had the dementia platform initiative set up around 2014 which is another area to contrast. It’s an MRC led and financed collaborative with specific and urgent aims:
“Dementias Platform UK (DPUK) is a public-private partnership funded by the Medical Research Council. We are proud to work across traditional boundaries, bringing researchers from universities and industry together in the fight to develop effective treatments for dementia fast...”
There has been no comparable urgent aim in ME.
We have been IMO long-time a field without aims, targets, agenda , structure, and an odd relationship with an MRC in the CMRC who attend meetings, offer buildings but otherwise are NOT trying to drive the field forward imo ( some may feel the CMRC with the GWAS is almost delivering some of this). I realise dementia has a higher level of understanding and an existing research base to build on but we have a case for committed funding and targets too imo.
Edit. this is controversial but I think that our charities not lobbying on research funding from the 2002 cmo report, 2006 Gibson report and 2012 MRC funding announcement or IOM report & NIH turn around has been a failure.
