From the website: #MEAction is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis. #MEAction is not structured like a traditional advocacy organization or patients’ association. We are primarily a platform, designed to empower patients, advocates and organizations, wherever they might be, with the technological tools and training to do what they are already doing – better.
Site features: Advocacy efforts, petitions, projects, actions, news, information about ME/CFS, a membership directory, local groups, and many other resources.
From the website: We are a unique alliance of ME/CFS organisations from around the world. Our membership is made up of senior leads/representatives from national ME/CFS organisations, working together to achieve change for people with ME/CFS at a national and international level. We are the only global network of ME organisations. All of our members share a belief that the challenges in ME are worldwide, and the solutions must be too. We can be more effective and efficient by sharing our experiences and speaking with one voice.
Solve ME/CFS Initiative (Solve M.E.)
From the website: The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases. Solve also hosts advocacy efforts.
From the website: ME Advocacy is a project of May12.org, a 501(c)(3) not-for-profit corporation whose mission is to raise global awareness for neuroimmune and autoimmune diseases, including Myalgic Encephalomyelitis (ME). Our mission is to advocate for Recognition, Definition and Research for Myalgic Encephalomyelitis.
Our current goals are to promote and support activities such as:
- Getting Myalgic Encephalomyelitis officially recognized as its own distinct disease in the US. ME has a 60 year history and has been classified as a neurological disease in the World Health Organization’s International Classification of Diseases since 1969.
- Getting a single clear ME expert definition for diagnosis and research, adopted as the official definition for ME. Examples are the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC) or an even better definition with the CCC and/or ICC as starting points. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease.
- Getting government funding to study this devastating disease, in the amount of $250 million annually – an amount on par with similar diseases such as Multiple Sclerosis.
Site features: Fact sheets, reports, press releases, media coverage, event calendar and a blog.
Patient Alliance for Neuro-endocrine-immune Disorders Organization for Research, Inc. (PANDORA) is a 501(c) (3) nonprofit charity registered in Michigan. Their mission is to serve those with neuro-endocrine-immune diseases (NEIDs), complex chronic diseases or chronic multi-system illnesses, including: Fibromyalgia Syndrome, Myalgic Encephalomyelitis /Chronic Fatigue Syndrome, Gulf War Illnesses, Chronic Tick-borne Infections, Environmental Illness.
Site features: Brochures, educational materials, patient groups, useful links, organizations, projects, advocacy efforts and grants.
May 12 has been commemorated as International Awareness Day for Complex Immunological and Neurological Diseases since 1992.
From the website: May12.org is a 501(c)(3) not-for-profit corporation founded in March 2012. Our mission is to raise Global Awareness and Education for Complex Immunol0gical and Neurological Diseases (CIND) including the following:
- Myalgic Encephalomyelitis – ME
- Chronic Fatigue Syndrome – CFS
- Chronic Lyme Disease – CLD
- Gulf War Illness- GWI
- Fibromyalgia – FM
- Mold/Biotoxin illness
- Multiple Chemical Sensitivity – MCS
We believe that raising awareness of neuroimmune diseases will increase funding for research, provide for better treatment, and eventually lead to a CURE for these debilitating, disabling and often “invisible” diseases.
Site features: Awareness events planned for May 12, symptoms, history, links, and information about neuroimmune diseases.
ADVOCACY BLOGS
Occupy CFS – Jennifer Spotila has been active in writing about CFS and advocating for more research funding since the late 1990s. She served on the Board of Directors of The CFIDS Association of America from 2006 to 2011, and served as Chairman in 2008 and 2009. She has testified before the CFS Advisory Committee on multiple occasions, and has given many media interviews about the illness. Occupy CFS is a blog about living with CFS, including the politics, research, medicine, and personal experiences.
#ThereForME is a blog founded by two ME patients, Karen and Emma. Recently, Broc interviewed them for Phoenix Rising.
“Time to step up ME advocacy – an interview with the founders of #ThereForME – Karen and Emma”
EGL: We are both carers to partners with Very Severe ME (resulting from Long Covid in 2022), and Karen has ME herself. It’s a lonely existence and in May we were both hanging out on Twitter (now X) sharing thoughts and ideas about the situation. We got chatting and became friends. We still haven’t met in person but we exchange countless messages every day. Karen is the reason I don’t feel so lonely any more! When the election was announced, about a week later, Karen had the idea to get ready to raise the issue of the lack of NHS care for people with ME and Long Covid with the new Labour government (we were pretty confident they would win).
KH: Like Emma says, #ThereForME was born out of our friendship and shared desire to fight for a better future with our partners. I have a background working in policy and advocacy in the humanitarian sector. For a long time I’ve wanted to put my skills and networks to use but have only recently found the headspace. My husband James’ Very Severe ME symptoms include difficulties swallowing and it’s not an exaggeration to say that my greatest fear is him needing hospital care. We think that every single person with ME in the UK should be able to feel 100% certain that if they need NHS care – whether that’s through their GP, hospital or a specialist service – they will receive care that is safe, appropriate, empathetic, evidence-based and builds on the best that modern science can offer. People with ME deserve so much better.
You can read the full interview HERE.
Slightly Alive – Mary M. Schweitzer, Ph.D. is a former history professor. In addition to her blog, she keeps an informational website, the ME and CFS Information Page, with essays, links, reports, conference summaries and other material. No longer being updated.
Thoughts About ME – Jeannette Burmeister is an attorney disabled with myalgic encephalomyelitis. She blogs about legal issues surrounding ME/CFS. Her blog features links to public testimony from ME/CFS patients, as well as media coverage of the disease.