ME/CFS News (@mecfsnews.bsky.social)

Who Funds Research? | Why The Charity Sector is Vital For Long Covid & ME/CFS In this conversation, we discuss the importance of funding for research in the charity sector, specifically for ME, CFS, and long COVID. The majority of research funding comes from charities, with only a small percentage coming from the government for other diseases, hence the need to emphasise the power of an established and reputable organisation in the charity sector. The example of the Cystic Fibrosis Trust is an inspiring case of how focused efforts and resources can lead to significant improvements in a niche illness. We compare the fundraising efforts for ME/CFS with other diseases like MND and Parkinson's, noting the disparity in funding despite the lower number of people affected by ME/CFS. Hopefully this provides an overview of why the charity sector is so important, and inspiring that even diseases with low numbers of people were able to drive such huge change! Apologies that my camera dies right at the end of the call, but Peter wraps up the discussion for us. Hope you enjoy! TIMESTAMPS 00:00 Intro 03:15 Importance of Funding for Research 04:13 Sources of Funding for Medical Research 09:02 Funding for Parkinson's Disease Research 11:10 Funding for Cystic Fibrosis Research 15:22 Funding for Motor Neuron Disease Research 23:31 Funding for ME/CFS Research 26:07 Need for Fundraising and Driving Cash into ME Research 30:14 Harnessing the Engaged Patient Community 32:15 Comparison of Fundraising in ME Charities 34:23 Sources of Funding 35:11 Legacy Giving and Challenges 36:35 Spending on Fundraising, Support, Research, and Advocacy 37:57 Comparison with Other Diseases 40:46 Fundraising Strategies and Professionalism 44:12 Importance of Fundraising Spend 46:05 Lessons from Successful Charities 48:16 Overcoming Stigma and Misconceptions 51:48 Long-Term Trends in Income 56:09 Challenges and Overlapping Issues 58:47 Learning from Other Disease Charities 01:02:21 The Impact of Legacy Giving 01:06:58 Targeting People Close to Those with the Disease 01:08:24 Engaging Community and Faith Groups 01:09:38 Involving Community Groups in Fundraising 01:11:12 Engaging Companies and Offices 01:14:40 Learning from Other Charities: Parkinson's UK 01:15:28 Customer Journey: First Awareness of the Disease 01:16:13 Customer Journey: Joining the Charity 01:17:18 Customer Journey: Getting Involved 01:18:23 Search Engine Optimization and Visibility 01:23:42 The Customer Journey 01:32:19 Key Takeaways OTHER LINKS: 💌 Newsletter - https://harryboby.substack.com/ 🐦 Twitter - /harryboby4 🎤 TikTok - /harryboby2 https://www.youtube.com/watch?v=W3Ji0JTHVhs