The Basics: A Guide to Learning, Sharing and Making a Difference in Chronic Fatigue Syndrome (ME/CFS)

Cort gives readers an introduction to some very basic issues in chronic fatigue syndrome (ME/CFS)
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[Editor’s comment: One organization has been omitted from Cort’s list of resources – The American ME and CFS Society (AMMES), a recently formed national nonprofit. The AMMES website includes a physician database to help patients find ME/CFS physicians, a treatment database, and a support group database, as well as valuable information on what causes the disease, symptoms, overlapping conditions, pediatric ME/CFS and a library containing over 3,600 research abstracts and articles. Unlike most other organizations, AMMES provides material assistance to severely ill patients in need through its financial crisis fund. AMMES also distributes a free monthly newsletter. The website’s resources are available to anyone.]


Reprinted with the kind permission of Cort Johnson and Health Rising.

By Cort Johnson

This page is designed to give you basic information on chronic fatigue syndrome (ME/CFS) and provide opportunities for you to learn about it, share your experiences, and participate in bringing about the end of this disease. It is focused on the U.S.

The Situation

In 2018 chronic fatigue syndrome (ME/CFS) finds itself in an unsettling place: it’s a common, serious disease that can cause profound levels of disability and distress but which gets little respect or funding.

Treatment options are poor.  No validated drug treatments are available, drugs trials are exceedingly rare, knowledgeable doctors are hard to find, and the vast majority of people with this disease remain undiagnosed.  Major pharmaceutical companies show no interest in developing drugs for ME/CFS.

Funding is far, far below what’s needed and researcher interest is appallingly low. Dramatic increases in funding, medical education, clinical trials and respect are needed. In short, a lot of work remains to be done! You can help by educating yourself, by finding ways to get better (and sharing them) and by supporting efforts to bring about the end of this disease.

The Basic Basics

An introduction to some very basic issues in chronic fatigue syndrome (ME/CFS):

The Name(s)

Dating back to the Civil War, the disease has been called many different names (epidemic neurasthenia, Royal Free disease, myalgic encephalomyelitis, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome (CFIDS), low natural killer cell syndrome, systemic exertion intolerance disease (SEID), etc.).

The term myalgic encephalomyelitis came to prominence in the 1950’s. After a CDC-sponsored group in the 1980’s recommended the disease be called chronic fatigue syndrome, that name quickly gained sway in the scientific literature and with doctors in the U.S. From the beginning, the name’s belittling connotations have sparked outrage from patients.

An effort to merge the two most prominent names, myalgic encephalomyelitis and chronic fatigue syndrome, as a bridge to a new, at that time unknown name, led the NIH to adapt the term ME/CFS. That term or a variation of it (CFS/ME) is now used frequently in the scientific literature and by patients. The term myalgic encephalomyelitis (ME) has enjoyed a renaissance as well and is now used by many patients and disease groups.

Prevalence

According to the 2015 Institute of Medicine Report, studies suggest that from 836,000 to 2.5 million Americans have ME/CFS. Because most people (80-90%) with the disease are not diagnosed, however, some doctors believe the incidence is far higher.

ME/CFS occurs in both sexes and all ages but is more common in women than in men and most commonly strikes people in two age groups – adolescence/early adulthood and middle age. The average age of onset is 33.  The disease is often triggered by an infectious event but can occur gradually or without a discernible trigger.

  • Tips for Newbies – new to this disease? Check out our Tips For Newbie collated from people who would very much like to help you from making the mistakes they did.

Symptoms

The core symptom in ME/CFS is called post-exertional malaise (PEM). The term was coined to describe the severe symptom exacerbations often provoked by even mild physical or mental activity or exertion. Other key symptoms include:

  • Profound fatigue causing reduction, impairment or inability to carry out normal daily activities..
  • Unrefreshing sleep
  • Cognitive impairment
  • Pain
  • Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

Many other symptoms can be found. Find out more about symptoms HERE.

Impairment

Studies indicate that ME/CFS is among the most functionally disabling diseases known. People with ME/CFS are as – or more –functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. Twenty-five percent are home or bedbound. One study found that only an astonishingly low 13% were employed full-time.

Prognosis

Doctors report that most people with ME/CFS feel worse at first, improve and then plateau and remain at limited functionality.  A significant subset of patients, however, regress or remain severely ill.  Recovery can occur but is rare.

Finding a doctor

Few doctors specialize in ME/CFS and finding a doctor open to learning about and treating this disease can be difficult. Find resources that will help you find a doctor and maximize your doctor appointment here. 

Disability and Financial Resources

Sharing

Sharing yours or others’ stories is a powerful way to spread the word that these diseases are real and serious. You never know whose lives you might touch.

Share with family and friends

The ME/CFS experience has been richly documented on video and film.

Videos

Films

  • Unrest (2017) – Sundance Award Winning Documentary –  powerful and evocative film centered on severely ill ME/CFS patients which received Oscar consideration; doctors can get CME credit for watching this film.
  • M.E. (2018) – Award Winning animated documentary by Alexandra Hohner.
  • What About ME  (2017) – Documentary presents a comprehensive view of the forces which kept ME/CFS from receiving the support it should get.
  • Forgotten Plague  (2015) – Documentary by a reporter with ME/CFS which, while showcasing ME/CFS patient’s stories, examines the causes behind the neglect given this disease.
  • Voices From the Shadows (2011) – award winning film focused on five people with severe ME/CFS in the U.K. with commentary from Dr. Nigel Speight, Lenny Jason PhD and Dr. Malcolm Hooperl
  • I Remember ME (2001) – the first of the major documentaries on ME/CFS. Excellent historical overview of the disease plus poignant interviews with ME/CFS sufferer. Made by a person with ME/CFS. After seeing it Roger Ebert  and said he now believes in ME/CFS.

Articles

Share with Your Doctor

Your doctor may need help. It’s entirely possible they may not want help but if they’re willing to learn a bevy of resources exist that can help them.

Advocacy Efforts

Advocacy is critical to getting more research funding, finding treatments and increasing awareness of this disease.

  • ME Action Network – join THE patient portal for ME/CFS advocacy. Conceived by Jen Brea, the creator of the film Unrest, this worldwide advocacy organization spawned the dynamic Millions Missing campaigns and is engaged in many advocacy actions across North America and Europe.
  • The Solve ME/CFS Initiative – Focusing on the United States, the SMCI employs Emily Taylor – the first full-time ME/CFS advocate.
  • Occupy ME – Jennie Spotila’s hard-hitting blogs primarily focus on advocacy issues involving the US federal government and the NIH.
  • David Tuller – an investigative journalist joins the fray. David Tuller couldn’t stand the bad science, so he wrote and wrote and wrote about it – and became one of ME/CFS’s most effective advocates. Check out his Trial by Error articles on the infamous PACE trial and other biopsychosocial debacles.
  • Health Rising – Cort Johnson frequently writes on advocacy.
  • NIH Funding Diseases and Conditions List – Keep your eye on this page. This is where the NIH reports on how much (or how little in the case of ME/CFS) it’s funding diseases.
  • Trans-NIH Working Group – the big group that couldn’t or wouldn’t. The “Working Group” is an NIH-wide group of Institutes tasked with producing funding for ME/CFS. It has failed miserably at the job.

Supporting the Science in the U.S.

Private research organizations play a vital role in moving ME/CFS forward. The small pilot studies they fund give ME/CFS researchers a chance to gather the data needed to apply for much larger NIH grants. Many important findings in ME/CFS were made possible by private research organizations. Here are some in the U.S.:  

  • Open Medicine Foundation – Three Nobel Prize winners and six Academy of Science members say it all about the Open Medicine Foundation’s high-powered research effort lead by Stanford geneticist and inventor Ron Davis. Multifaceted research program exploring genetics, immunology, metabolomics and energy production.  A recently opened ME/CFS research center at Harvard.
  • The Solve ME/CFS Initiative – led by a former patient, the SMCI funds cutting edge research, developed the first Patient Registry and Biobank, and employs the only full-time ME/CFS advocate. Funds pilot studies which have produced breakthroughs in our understanding of ME/CFS.  When the SMCI’s Patient Registry opens, join it and help advance the science.
  • Institute for Neuro Immune Medicine | Nova Southeastern University – Longtime ME/CFS researcher, doctor and advocate, Nancy Klimas leads this revolutionary research program which uses supercomputers to model what’s going on in ME/CFS.  Currently testing a timed, duo-drug combination in Gulf War Illness (GWI) and ME/CFS. Recently awarded a mammoth grant to research GWI.
  • Simmaron Research Foundation (SRF) – Conceived by longtime ME/CFS physician Dr. Dan Peterson, the SRF is focused on immune research, spinal fluid research and Ampligen. Uncovered an ME/CFS atypical subset. Currently focused on documenting immune changes produced by Ampligen.
  • Bateman Horne Center – multidimensional treatment, research and educational center. Its grand mission – to educate as many doctors as possible in the U.S. about ME/CFS diagnosis and treatment.  Led by one of our best and most dynamic speakers – Dr. Lucina Bateman.

Staying Engaged and Getting Informed

Videos

Books

Forums and Facebook Sites

Websites and Blogs

All-Purpose

  • The Health Rising website presents the most comprehensive and in-depth discussion of ME/CFS research and treatment finding on the web. Includes many treatment resources and recovery stories.  Be sure to subscribe to the blog.
  • MEPedia – find thousands of articles in the MEAction-produced, volunteer-driven online encyclopedia on ME/CFS.
  • ProHealth – A nutritional company founded by a person with ME/CFS provides regular blogs on ME/CFS treatment and research issues.
  • The Solve ME/CFS Initiative – funds research, provides blogs, regular research updates, webinars with ME/CFS experts, and is active in advocacy.
  • The Open Medicine Foundation – provides News and Experts blogs and a Resource Center.
  • ME Essential – members of the ME Association receive a quarterly magazine containing interviews and up-to-date information on medical and scientific developments and help with coping.
  • MERUK’s (ME Research UK) – Free Breakthrough Magazine provides a quarterly look at MERUK and other research findings, treatments and advocacy.
  • A CFS Patient Advocate – longtime blog from Christopher Cairns, the father of a daughter with ME/CFS, who explores the research and treatment options in detail.
  • Life As We Know It – has been covering the world of ME/CFS research and advocacy for over 15 years…

Primarily Treatment and Coping

  • Treatment Resources – check out over 250 ME/CFS and FM treatment resources on Health Rising.
  • My Patient Match – provides reviews on hundreds of treatment options
  • CFIDS & Fibromyalgia Self-Help: Provides online self-help courses and blogs that help people manage ME/CFS and FM, reduce stress, and improve their health.
  • How to Get On – (How to Have a Great Disabled Life) –  A self-advocacy guide for anyone who is homebound or bedbound in the U.S. Special focus on folks with Myalgic Encephalomyelitis. If you need assistance with housing, medical expenses, financial support, disability – this is the place to go.
  • Fed up with Fatigue – Donna, a former journalist, gives her personal take on treatments to help with ME/CFS, FM and Lyme disease.
  • Toni Bernhard’s Turning Straw into Gold blog is an antidote to depression and fear. Written by a longtime ME/CFS patient, it provides a Buddhist’s perspective on dealing with chronic illness. Check out her “How to Be Sick” book as well.
  • Living with ME/CFS – Sue Jackson has been writing about her and her family’s struggle with ME/CFS and life in general for over 10 years. Check out her refreshing and personal take on “Living with ME/CFS”.
  • Jamison Writes – Trenchant, sometimes funny, and thoughtful blogs from a former weightlifter/body-builder who, er…doesn’t look like a weightlifter anymore.  (Check out “Weight, Weight…Don’t Tell Me I’m Fat!“)
  • My World – A blog of a Canadian women’s thoughts, ideas, and ponderings (skewed as she puts it “towards the perspective of an over-educated, nature/dog/northern loving, chronically ill, Canadian woman”) plus some great pictures of the Canadian Wilderness.
  • Quixotic: My M.E. Blog – Southern California man writes about his attempts to get well including overcoming a very nasty case of SIBO.
  • Stonebird – The lived experience of severe M.E.
  • The Pained Ink Slayer – Celeste Cooper, chronic pain patient and author, has been writing about just about everything to do with pain – from the science to advocacy and most importantly, coping – for years.

About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

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