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ME/CFS News

@mecfsnews.bsky.social

News, interesting information and commentary on ME/CFS.

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Tom Kindlon@tomkindlon.bsky.social · 2y ago

This is not what many people would like to hear I suspect but is important to take on board: "The majority of research funding [in general] comes from charities, with only a small percentage coming from the government for other diseases" From: www.youtube.com/watch?v=W3Ji... #MEcfs #CFS #PwME

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

youtube.com

ME/CFS News@mecfsnews.bsky.social · 2y ago

Talking with normal people about my ME/CFS can be frustrating. Some people are like "I've listened to you for two minutes, and now I'm going to give you advice that will cure your illness after 20+ years." It makes me feel misunderstood and like my time has been wasted.

ME/CFS News@mecfsnews.bsky.social · 2y ago

Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics www.mdpi.com/2077-0383/13...

Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics

Background: One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and c...

mdpi.com

ME/CFS News@mecfsnews.bsky.social · 2y ago

Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. This is the publication of the NIH's intramural study on ME/CFS. www.nature.com/articles/s41...

Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome - Nature Communications

Post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS) is a disabling disorder, yet the clinical phenotype is poorly defined and the pathophysiology unknown. Here, the authors ...

nature.com

Tom Kindlon@tomkindlon.bsky.social · 3y ago

An EU-funded, multi-million Euro project investigating the impact of infectious diseases on the development of immunological diseases (including #MECFS, #MS, #RA, #IBD & #LongCovid) is being launched. Across many countries Info in English: www.s4me.info/threads/news... #CFS #PwME #PostCovid

News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

Two abstracts from the 32nd International Congress of Clinical Neurophysiology (ICCN) of the IFCN, September 4-8, 2022, Geneva, Switzerland. The...

s4me.info

Andromeda Yelton@thatandromeda.bsky.social · 3y ago

They...cured lupus??? www.nature.com/articles/d41... I mean. It's a hella intense, sci-fi treatment, and we're talking only a dozen or two patients, but they have actually knocked down four different autoimmune diseases here and it...works??

‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

Engineered immune cells, most commonly used to treat cancers, show their power against lupus and other immune disorders. Engineered immune cells, most commonly used to treat cancers, show their power ...

nature.com