Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Exhaustion without reward is torture - Kerlynne Ferrer
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image by: Tom Kindlon's ME CFS & related page: News, Research and more
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Key Features of Possibly the Most Underserved and Underdiagnosed Disease: Do You Have It?
A February Institute of Medicine report said up to 91 percent of people with chronic fatigue syndrome have not been diagnosed. These people are not receiving appropriate treatments or healthcare advice. If you feel tired often, how would you know if you have this disease?
ME/CFS, myalgic encephalomyelitis, also known as "chronic fatigue syndrome" or ME/CFS or a proposed new label, "systemic exertion intolerance disease," includes debilitating fatigue that is constant or recurring. This is not tired because you've had a long day. It's fatigue like you have the flu or like you are on chemotherapy. Some patients describe this as feeling like they have lead in their body or that they…
Resources
#ME Action
A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
U.S. ME/CFS Clinician Coalition
The Coalition is committed to improving clinical care for patients with ME/CFS by advancing best clinical practices, providing education for the medical community, expanding the pool of medical providers with strong expertise in ME/CFS, and providing clinical insights for researchers.
25% M.E. Group
The 25% M.E. Group exists to support all who have the severe form of M.E. and those who care for them. This includes people who are housebound, bedbound and wheelchair users.
Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases
Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.
Solve M.E.
The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) since being founded in 1987. SMCI envisions a world free of ME/CFS and works steadfastly to make this disease understood, diagnosable and treatable. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding towards a cure.
Chronic fatigue syndrome: Gradually figuring out what’s wrong
First of all, the textbooks of medicine didn’t describe an illness like this. In addition, all the usual laboratory tests to screen for various diseases came back normal. At this point, a doctor has two choices: decide to believe the patient and keep searching to find what is wrong, or to tell the patient, “There is nothing wrong.” Indeed, some doctors seeing people like my patient did just that, adding insult to injury.
Unrest
A personal film about the hidden world of M.E. (commonly known as Chronic Fatigue Syndrome). Premieres Sundance 2017.
A Filmmaker’s Personal Look at Chronic Fatigue Syndrome
Jennifer Brea recounts her struggles with the debilitating illness in the new documentary ‘Unrest’
Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It
The mysterious and complicated illness that has been called chronic fatigue syndrome has a new definition and a new name: systemic exertion intolerance disease, or SEID for short. The name change is big news because many patients and experts in the field hate the name chronic fatigue syndrome; they feel that it trivializes the condition.
The Hard Reality of Living with Chronic Fatigue Syndrome
Sufferers aren't just "being tired all the time"—their brains can't connect properly to the spinal nerve tracts and so fail to control vital bodily functions. It's time we started taking it seriously.
The Tragic Neglect of Chronic Fatigue Syndrome
It leaves people bed-bound and drives some to suicide, but there's little research money devoted to the disease. Now, change is coming, thanks to the patients themselves.
Key Features of Possibly the Most Underserved and Underdiagnosed Disease: Do You Have It?
A February Institute of Medicine report said up to 91 percent of people with chronic fatigue syndrome have not been diagnosed. These people are not receiving appropriate treatments or healthcare advice. If you feel tired often, how would you know if you have this disease?
CFS Knowledge Center
Our mission is to provide those afflicted with Severe Fatigue, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and related illnesses with a variety of resources from around the world with which to deal with these complex, and all too often, misdiagnosed conditions.
CFS Recovery Project
On this website you’ll find inspiration, strategies and support, so you can begin your healing journey and get your life back. The growing number of resources on this website and my coaching services are designed to support you in the process of regaining your health and happiness. I hope they will serve you as a stepping stone toward a full recovery.
Chronic Fatigue and Sleep Apnea Survivor
My experience recovering from Chronic Fatigue Syndrome (CFS/ME).
Invest in ME Research
Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E.
Learning to Live With ME/CFS
I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.
ME Association
The ME Association (The MEA), founded in 1976, funds and supports research and provides information and support, education and training. In this role, we benefit people with ME (myalgic encephalopathy)/CFS (chronic fatigue syndrome), professionals and all others interested in the illness.
ME Research UK
The principal aim of ME Research UK is to energise ME research by commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS).
ME/CFS Australia
ME/CFS Australia is an affiliation of autonomous state ME/CFS organisations. It operates at the national level, approaching ME/CFS issues from an Australia-wide perspective. The organisation operates as a public, non-profit company limited by guarantee.
My Journey Thru M.E.
My blog tells the story of my journey through the illness M.E. / C.F.S.
National CFIDS Foundation
The Foundation's objective is to fund research to find a cause, expedite treatments and eventually a cure, as well as providing information, education, and support to people who have CFIDS (chronic fatigue and immune dysfunction syndrome also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names).
National ME/FM Action Network
The NATIONAL ME/FM ACTION NETWORK became a Canadian charitable organization on June 18, 1993 dedicated to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research.
No Poster Girl
Life With Severe ME/CFS: A bed-lyin', pill-poppin', muscle-wastin' good time.
Pajama Daze
In my blog, Goin' Bananas in Pajamas*, I disclose some of my experiences with chronic fatigue and illness, but more importantly, I share information, helpful hints, tips, events, and all sorts of facts and trivia that you may find relevant and/or fun in your life.
Phoenix Rising
Phoenix Rising provides people with chronic fatigue syndrome (ME/CFS) information to support their health and wellness and online programs to enhance their health and well-being. Phoenix Rising publishes articles, a blog and a newsletter, maintains the largest ME/CFS Forum (forums.phoenixrising.me) and contains the largest database of articles and posts on ME/CFS on the web.
Association of New Zealand Myalgic Encephalopathy Societies
ANZMES stands for the “Association of New Zealand Myalgic Encephalopathy Societies Inc.” and is the national support organization for ME sufferers and their carers in New Zealand. It was founded in 1980 and was the first ME organization of its type in the world.
Blue Ribbon for the Awareness of ME
The primary aim of BRAME, both in the UK and worldwide, is to create an increased awareness and understanding that ME/CFS is a very real and debilitating illness, and the consequences of living with ME/CFS, for the sufferer, carer and the whole family unit.
CFS Patient Advocate
The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.
European ME Alliance
The European ME Alliance is a collaboration of ME support charities and organisations in Europe who intend to provide a common view and the scientific facts regarding the neurological illness myalgic encephalomyelitis (ME/CFS).
FM-CFS Canada
A dynamic Canadian charity and guiding light for those suffering from the ravages of Fibromyalgia and Chronic Fatigue Syndrome.
International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
IACFS/ME is the largest international group of clinicians, researchers, and other professionals dedicated to the care and research of patients with ME/CFS.
Irish ME Trust
The Irish ME Trust was established in 1989 to provide information and a counselling service to those affected with ME as well as targeting individual problems on behalf of sufferers. We aim to create awareness in the general public and the medical profession as to the plight of ME sufferers in Ireland and contribute to quality biomedical research studies.
Welsh Association of ME & CFS Support
The Welsh Association of ME & CFS Support (WAMES) works in Wales to improve the lives of people with ME, CFS & PVFS, their families and carers.
CDC
Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure, no prescription drugs have been developed specifically for CFS, and symptoms can vary a lot over time.
MedicineNet
The symptoms and signs of chronic fatigue syndrome (CFS or SEID) are relatively specific: chronic severe fatigue for at least five to six months not caused by a diagnosable disease and at least four other specific symptoms such as cognitive impairment, muscle and/or joint pains, new types of headaches, tender lymph nodes, sore throat, unrefreshing sleep, and malaise after exercise that occur at the same time or after the development of severe fatigue.
MedlinePlus
CFS is hard to diagnose. There are no tests for it, and other illnesses can cause similar symptoms. Your doctor has to rule out other diseases before making a diagnosis of CFS.
UpToDate
Chronic fatigue syndrome (CFS), also called systemic exertion intolerance disease (SEID), is a disorder that causes unexplained, persistent, and sometimes debilitating fatigue. Living with CFS/SEID can be frustrating because most people, including healthcare providers, have a limited understanding of why or how CFS/SEID develops. In addition, there are limited treatment options. Although CFS/SEID is not likely to shorten your life, it can have a profound effect on your quality of life.
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