ME/CFS News

May 12 is ME/CFS Awareness Day. Speak with other people about ME/CFS today. Reject invisibility and stigma, build awarenesss and support.

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

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

Just because China is willing to abuse relatively free flow of information doesn't mean they have the right values.

A review that focuses on the pathophysiology of skeletal muscle in ME/CFS. The authors believe that skeletal muscle tissue offers opportunities for diagnosis and treatment.

onlinelibrary.wiley.com/doi/10.1111/...

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

by George Monbiot

www.theguardian.com/commentisfre...

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.

The DecodeME study has been delayed.

It was due to be completed by August of this year. The sample collection has taken longer than anticipated.

The results will be released as soon as possible, before August 2025.

www.decodeme.org.uk/study-extens... ME/CFS

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...

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...

A recent opinion piece questioned the validity of the NICE guidelines for ME/CFS. NICE has now published a rebuttal titled:

NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence

(not open access at the time of writing)

jnnp.bmj.com/content/earl...

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 ...

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...

The National Institute for Neurological Disorders and Stroke is collecting feedback from the public on the research priorities for ME/CFS. You can view and submit feedback here: ninds.ideascalegov.com/c/campaigns/...

Alternatively you can submit feedback here: MECFSResearchRoadmap@ninds.nih.gov

News from NIH: Webinar on March 4 about the ME/CFS Research Roadmap NINDS will be hosting a webinar on March 4, 2024, from 11-12pm ET to provide updates on the ME/CFS Research Roadmap. Speakers will include Vicky Whittemore, Ph.D., NINDS program director; and Research Roadmap co-chairs Maureen Hansen, Ph.D., and Lucinda (Cindy) Bateman, M.D. Please register for the webinar in advance. During the webinar, attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. For those on the phone, please dial *9 to raise/lower your hand and *6 to mute/unmute. Additional instructions for joining by phone are on the Zoom support website. We regret that we may not be able to respond to all questions that we receive, but we will try to answer as many as possible in the time allotted. Regards, The Trans-NIH ME/CFS Working Group

NINDS will be hosting a webinar on March 4, 2024, 11-12pm ET to provide updates on the ME/CFS Research Roadmap. Speakers: Vicky Whittemore, Maureen Hansen, and Lucinda (Cindy) Bateman.

Links in image:
www.ninds.nih.gov/about-ninds/...
nih.zoomgov.com/webinar/regi...
support.zoom.com/hc/en/articl...

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...

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

A prospective study found no relationship between joint hypermobility and ME/CFS triggered by infectious mononucleosis www.clinicaltherapeutics.com/article/S014...

You can take the FUNCAP55 questionnaire online. It is a questionnaire designed to assess functional capacity in ME/CFS.

raffbenato.github.io/funcap55/

Dysregulation of extracellular vesicle protein cargo in female myalgic encephalomyelitis/chronic fatigue syndrome cases and sedentary controls in response to maximal exercise

isevjournals.onlinelibrary.wiley.com/doi/10.1002/...

Muscle abnormalities worsen after post-exertional malaise in long COVID

www.nature.com/articles/s41...

Heterogenous circulating miRNA changes in ME/CFS converge on a unified cluster of target genes: A computational analysis

journals.plos.org/plosone/arti...

Identification of CD8 T-cell dysfunction associated with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series

www.sciencedirect.com/science/arti...

Disease severity and cerebral blood flow reduction during tilt testing are highly associated in ME/CFS: a more severe disease is related to a larger cerebral blood flow reduction.

www.mdpi.com/1648-9144/59...

Microvascular Capillary and Precapillary Cardiovascular Disturbances Strongly Interact to Severely Affect Tissue Perfusion and Mitochondrial Function in ME/CFS Evolving from the Post COVID-19 Syndrome

www.preprints.org/manuscript/2...

PrecisionLife, Action for ME, and the MRC Human Genetics Unit have been awarded an Advancing Precision Medicine grant by Innovate UK to improve diagnosis & treatment of ME/CFS and Long Covid. precisionlife.com/news-and-eve...

‘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 ...

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??

Screenshot of abstract

New from China:

A cross-sectional study exploring the relationship between symptoms of anxiety/depression and P50 sensory gating in adult patients diagnosed with #chronicfatiguesyndrome / #myalgicencephalomyelitis

Abstract:
www.frontiersin.org/articles/10....

#MEcfs #CFS #PwME

Abstract This article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME). While illness experience is a central concern of the sociology of health and illness, experiences of loneliness alongside contested and chronic illness have received less attention. The analysis illustrates how loneliness can be an integral part of living with ME and offers two novel conceptual contributions - necessitated social isolation and compelled loneliness. Necessitated social isolation concerns how ME symptoms can make social lives increasingly restricted. Compelled loneliness highlights how the combined experiences of both stigma and contested illness can lead to social withdrawal and rejection, which create a sense of loneliness. The article argues that loneliness and social isolation can be conceptually distinct yet recursive and overlapping. With the worsening of ME, the participants experienced a cycle of loneliness, in which social isolation and

New UK #MEcfs research:
"Compelled loneliness and necessitated social isolation: 'It’s like being on the other side of a mirror, just looking in'”

Free
onlinelibrary.wiley.com/doi/10.1111/...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Preprint: Mechanisms underlying exercise intolerance in Long COVID: an accumulation of multi-system dysfunction

www.medrxiv.org/content/10.1...

Post-COVID exercise intolerance is associated with capillary alterations and immune dysregulations in skeletal muscles

actaneurocomms.biomedcentral.com/articles/10....

Naltrexone 6 mg once daily versus placebo in women with fibromyalgia did not improve pain but might improve memory.

www.thelancet.com/journals/lan...

Preprint: Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The study identified two subgroups, one with immunodeficiency (reduced complement protein C4a levels), and one with mucosal barrier leakage.

www.preprints.org/manuscript/2...

Full article.

Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome

www.frontiersin.org/articles/10....