Background - barely visible outlines of people standing, in wheelchairs, in bed. With the text in Orange "Shine a Light on Millions Missing" with a Blue ME/CFS awareness ribbon in the bottom left hand corner.
ME/CFS Awareness Month & May 12: list of legislative resolutions, statutory recognition, executive proclamations. Advocacy Templates: www.mecfssandiego.com/mecfs-advoca...
@emergeaustralia.bsky.social TRI-ME Trial: Deakin University (Geelong/Melbourne, AU) is running an exploratory ME/CFS treatment study for adults (18+), ~8 weeks, 1 in-person session + 5 follow-ups (in-person or video). tri-me@deakin.edu.au 0482 869 59 impact-trials.deakin.edu.au/trial/tri-me...
@meresearchuk.bsky.social UK: summarized a DecodeME subanalysis finding no meaningful evidence that DHCR7 gene variants, linked to cholesterol and vitamin D metabolism, increase ME/CFS risk. This was tested due to proposed biological links, but was not supported. tinyurl.com/5a2xn7z8
AARP Report: estimates family caregivers provide ~49.5 billion hours of unpaid care annually, worth about $1.01 trillion. This largely invisible work supports millions of older adults and people with disabilities while placing heavy strain on caregivers. www.aarp.org/caregiving/f...
@solveme.bsky.social Video: Dr. Avik Roy (Simmaron Research) reports ME/CFS immune cells show impaired energy production, with both oxidative phosphorylation and glycolysis diminished. He and Dr. Gottschalk discuss targeted clinical trial research. youtu.be/OMmjcTKxivU
@solveme.bsky.social Advocacy: Please contact Senators to ask them to sign the “Dear Colleague” letter supporting $210M in Long COVID research funding that hopefully includes ME/CFS. www.senate.gov/senators/sen... Please emphasize the importance of adequately funding the ME/CFS Research Roadmap.
@openmedf.bsky.social: launched “CTN Lite,” a streamlined clinical trial model designed to run ME/CFS studies faster & more cheaply with scientific rigor; It emphasizes decentralized participation (including housebound patients), precision medicine, & patient input ow.ly/I8I550YKvKv
@meactnet.bsky.social NIH Director meeting: May/13 MEAction will be meeting with the National Institutes of Health Director Dr. Jay Bhattacharya to push for funding and implementation of the ME/CFS Research Roadmap, driven by sustained advocacy and community support.
Blue Sunday Tea Party May/17/2026: the-slow-lane.com/2026/04/07/h... Some ideas: you can wear blue, enjoy tea&cake your way, &/or connect with others online or in person while sharing your setup with hashtags #BlueSunday2026, #TeaPartyForME2026. Optional donations: the-slow-lane.com/donation-pag....
@batemanhornecenter.bsky.social: For ME/CFS Awareness Month is asking patients & caregivers to share personal stories “This is ME,” through short videos, audio, or written submissions to highlight the diverse, often unseen experiences of ME/CFS. Anonymous OK, entries due April 30 bit.ly/3Q4Vy5T
OECD in report LC/post-COVID condition (symptoms ≥3 months);
Prevalence: peaked ~5.3%. Long-term: 0.6–1.0%.;
~1 in 5 LC affected workers heavily disrupted, contributing to ~1% labour force loss & projected costs of ~$135 billion per year through 2035 www.oecd.org/en/publicati...
ME/CFS Recovery Program Legitimacy Checklist (with a clipart image of a pencil and a partially filled checklist)
People with ME/CFS are often targeted by programs promising recovery.
Not all are safe.
Use this checklist to spot red flags:
www.mecfssandiego.com/mecfs-resour...
You’re arguing against a version of my post that I didn’t write. I’m talking about labeling in patients who meet modern clinical criteria, not about research definitions or disease separation.
I put those in to explain I have a science background too (& have done research). ftp.omf.ngo/history-mecfs/ shows you how criteria has evolved. The two newest criteria are IOM and NICE (and IOM is over 10 years old at this point). IOM and NICE as current criteria is the clinical standard.
I said for the patient community IF patients meet current criteria - they are the same disease. I was working on my PhD in EE when I became disabled and had worked with military standards and criteria. Why you are trying to say from a lived experience perspective (NOT RESEARCH) that they are not?
It depends on what I am using it for but as I said for our FB community we use IOM (2015) or NICE to check. There are questions about if either criteria fully includes ME/CFS patients but until diagnostic test(s) are available or a better criteria comes along - it is what we have.
Have you read my actual post. BSky limits chars so the whole post is on other social media and the ME/CFS San Diego website. My post is about members of the patient community that meet current (not 1994) criteria who come in identifying with different labels. It is not about ICDs, or research.
In 1994, Fukuda was the best effort at describing ME/CFS. It is not a current criteria. When it is used by most researchers,they include other criteria (typically PEM). I admin patient communities on FB/Reddit. We post IOM/NICE on FB as an entry question but many come in with pre-existing labels.
I didn't say it did - my post and everything has said IF patients meet current criteria it doesn't matter what they are labeled.
:( We have connected with a lot of healthcare workers with ME/CFS. Many spent effort learning everything medical only to find out there were these known gaps that were hidden from them. Most didn't find out until they became sick. Doctors with ME is a UK non-profit created by a Dr in that position.
Titled ME/CFS: Lost in the Gaps between Specialties Drawing of rows of silos - the front row of silos are labeled: Neurology 1935, Internal Medicine 1936, Cardiology 1941 , Gastroenterology 1941, Immunology/Allergy 1971, Endocrinology 1972, Infectious Disease 1972, Rheumatology 1972 Dates reflect first U.S. board certification (ABMS era).
The U.S. healthcare system isn’t built for multi-system diseases like ME/CFS. Patients fall through specialist silos, even though clinical guidance exists: www.mecfssandiego.com/mecfs-resour...
The U.S. healthcare system isn’t built for multi-system diseases like ME/CFS. Patients fall through specialist silos, even though clinical guidance exists: www.mecfssandiego.com/mecfs-resour...
I was diagnosed under Fukuda (1994 not current; researchers add PEM) because it was the only criteria at the time. I was later diagnosed under CCC, ICC, then IOM.That doesn’t mean I’ve had different diseases.
My point stands: within current criteria, ME, CFS, & ME/CFS refer to the same illness.
Colleen, as I said everyone who meets CURRENT criteria who is labeled with CFS, ME, or ME/CFS has the same disease. How can they meet current criteria and not have PEM?
LC Article on Fragmented Care: sciencepolitics.org/2026/04/06/w... reflects the ME/CFS experience, where patients are passed between providers with little coordination and often must manage their own care. It also shows how diagnostic uncertainty delays access to coherent treatment.
ME/CFS on Reddit: Some larger subs promote biopsychosocial frameworks or link to disputed ME/CFS treatments, making evidence-based info harder to find. We recommend r/cfs, r/CFSScience, and r/mecfsSD, plus smaller moderated communities (r/mecfsGlobal, r/UnitedStatesMECFS, r/mecfsSanDiego).
Research is a different issue, stratifying there matters. My point is ME, CFS,& ME/CFS are different labels for the same disease in people who meet current criteria. Clinically, ME/CFS should be the most commonly used term, but they all refer to the same illness; patients should be treated equally.
@solveme.bsky.social Initiative Easy Action Tool: solvecfs.quorum.us/campaign/157... Tell your Senators to sign the Dear Colleague letter in support of ME/CFS research funding. Contact them by April 15t
This study is preclinical (mice + monkey tissue + human cells). There have been very small early human trials of mitochondrial transfer using other methods, but this specific approach hasn’t been tested in humans yet.
