Who Funds Research? | Why The Charity Sector is Vital For Long Covid & ME/CFS

[@carpediemcotidiem]

If we learn from people who've succeeded before we can build a great strategy to get treatments for Long-COVID and ME/CFS Thanks Harry!

[@artdine]

Excellent video. Is there any way you could share the slideshow so patients can use it to advocate for more research? Also how can I find out more about Peter White’s work? Does he have twitter?

[@harryboby7563]

Thanks! You can find Peter on twitter here, he's shared some of the slides on his profile :) twitter.com/mediumwhite

[@DennoWiggle]

Another thought while watching the excellent presentation. PolyBio has been extremely successful in a short space of time. Their key is they focus on the infection aspect of the diseases which brings in more relevant expertise and clear focus for where money should be spent. Advocacy focus's on infection. I think there is an opportunity to raise more money for ME research and accelerate research progress in the UK using the charity sector if each charity adjusted research and fundraising focus to one area - say PEM/PESE for example.

[@carpediemcotidiem]

00:02 Personal journey with ME/CFS and Long Covid 02:26 Charity sector vital for funding long covid and ME/CFS research. 07:20 Majority of medical research funded by charity sector 09:39 Charities play a vital role in funding medical research for neurological diseases. 14:16 The charity sector plays a vital role in funding research for various diseases. 16:38 Charity sector drives funding and awareness for research on neurological diseases 20:58 Charity sector plays a significant role in funding long Covid and ME/CFS research 23:03 Charity sector plays a significant role in ME research funding 27:15 Charity sector can steer medical research direction 29:11 Charity sector and community involvement are vital for funding medical research on Long Covid & ME/CFS 33:14 The charity sector plays a vital role in funding research for Long Covid and ME/CFS. 35:18 Legacy donations drive change and are a vital source of funding for charities. 39:15 Funding and prevalence of long Covid and ME/CFS 41:13 Non-profit sector is crucial for disease funding 45:26 Collaborating resources can drive significant change in ME/CFS and long covid research. 47:22 Fundraising is essential for driving change in cancer research 51:11 Importance of maximizing ROI in charity sector 53:12 Comparison between the ME sector and the motor neuron disease sector 57:17 Charity sectors challenge misconceptions and stigmas in diseases like Parkinson's 59:13 Charities play a vital role in overcoming stigmatization and supporting further research for ME/CFS. 1:03:21 Legacy giving can significantly boost charity income. 1:05:30 Fundraising for medical research is a specialized profession 1:09:15 Encouraging community groups to fundraise for ME/CFS charities 1:11:17 Engaging companies in sponsoring ME charities for fundraising and awareness. 1:15:15 Encouraging engagement with charity sector for understanding and support 1:17:20 Charity sector leverages community for fundraising and support 1:21:02 Charity organizations use professional marketing tools for fundraising and awareness. 1:23:07 Understanding the customer journey and user's experience 1:26:53 Visibility for chronic fatigue syndrome diagnosis is a challenge 1:28:56 Personal connections drive engagement and donations 1:32:43 Community involvement in supporting and engaging with charities 1:34:24 Importance of having professional skills for oversight and governance in the charity sector Crafted by Merlin AI.

[@DennoWiggle]

I'd just like to point out that for ME/CFS funding in the UK the US NIH should be added to the chart as they have funded work at LSHTM for many years. Currently active is a 5 year grant R01 [5R01AI170839-02] that paid $506,138 in 2023. Previous grants in your time-frame for analysis include a 7 year grant 5R01AI103629-07 (2013-2020) and 2 year grant R21AI121759-02 (2017-2019). You can get the numbers for each year from NIH Reporter tool.

[@alias701]

Nothing against charity funding but we need fundings worth billions. In my opinion there is no hope for real working treatments if there is no political will to change something. People and economics are suffering from MECFS/ Long Covid!

[@harryboby7563]

Definitely agree we need to seek to bolster governmental funding, but don't underestimate the impact of charities when done right. Cancer research foundation spend nearly 500 million per year on research, and The Cystic Fibrosis Foundation invests $225 million yearly. Cystic Fibrosis foundation is even more remarkable because it affects such a tiny % of the population.

[@kerrynewnham8946]

Cancer vs ME , commonly known as the laughable CFS or chronic fatigue , are in totally different places when it comes to public perception/sympathy and disabling impacts on the would be fundraisers. With ME 75% can’t work, 25% are house or bedbound, many with zero medical support,treatment and validation , this is a situation over decades where many families / friends co workers have been sold the messaging regarding mind/ body, self improving GET etc & are openly skeptical and hostile.