Following is the text of an open letter to the news media, signed by a group of more than 400 concerned M.E. activists in 2011.
Journalists covering the disease are respectfully asked to keep these requests in mind.
Letter to Members of the Media
We, the undersigned, are individuals from around the world who suffer from the disease observed in an outbreak in the Lake Tahoe area in 1985. This illness was given the name Chronic Fatigue Syndrome in the U.S. in 1988, and is known by a variety of other names — including Myalgic Encephalomyelitis — in other countries.
We ask the journalistic community to do the following:
• Don’t refer to our illness as “Chronic Fatigue.”
Our disease has a variety of characteristics in addition to the state of neurological and mitochondrial dysfunction that the Centers for Disease Control has mischaracterized as “fatigue.” We hope that soon, our disease will be better defined and renamed, possibly as Myalgic Encephalomyelitis (ME). In the meantime, please refer to our disease by its official U.S. name (Chronic Fatigue Syndrome or CFS) or by official names used in other countries.
• Convey the fact that this is a multi-system illness with effects that are immeasurably worse than any level of fatigue.
The core components of our illness are insufficient energy production, chronic immune inflammation, nervous system dysfunction, and post-exertional relapse (worsening of symptoms after even trivial amounts of mental or physical activity). However, sufferers experience a wide range of other symptoms, including severe cognitive dysfunction, inability to sit or stand up, excruciating headaches, extreme noise and light sensitivities, muscle stiffness and pain, heart dysfunction, immune system abnormalities, dystonia, partial paralysis, a variety of rare cancers, and many other debilitating or deadly health problems.
• Focus attention on the fact that the governments of the U.S. and most other nations have seriously underfunded our illness.
Research funding of our disease is minuscule considering its severity and prevalence. The NIH research budget for 2012 allots $114 million to lupus, $135 million to multiple sclerosis, $428 million to depression, $3 million to hay fever — and only $6 million to CFS. http://report.nih.gov/rcdc/categories/
• Make it clear that regardless of its cause, our disease is worthy of increased funding, acceptance and attention.
The possible connection between CFS and specific retroviruses is an extremely important research topic since it has the potential of leading to a cure for our disease. However, regardless of whether a retrovirus is causal, our disease is equally devastating and warrants better media coverage.
• Present information about the disease in fresh ways.
This tired headline has been used for more than 20 years: “CFS is finally a real disease.” CFS was shown to be not only a real but a very serious disease more than two decades ago, as more than 4,000 published studies confirm. Those suffering from our disease face a lack of medical care, poverty, isolation, social stigma and inadequate research funding. It’s time to come up with new story lines.
• Focus attention on the most severely ill sufferers of our disease.
Many people with our disease spend decades of their lives curled up in darkened silent rooms. They are unable to sit or stand, to tolerate any light or sound, to summon the strength to speak, to focus on or articulate a thought. Covering their stories will reveal to the public the truth about just how horrible this illness really is.
• Use a critical eye when evaluating scientific studies.
There are a variety of case definitions in use for CFS research. Each selects a different patient cohort for study — with some excluding severe sufferers of our illness and including people with ordinary fatigue or uncomplicated major depression. If research does not focus on people with our disease, its results are not applicable to us.
• Be wary of suggestions that any sort of easy fix may be helpful for our disease.
Medical research shows conclusively that CFS is a serious physiological disease and that sufferers often have negative physiological responses to even small amounts of exercise. Nonetheless, a small group of psychiatrists funded by large U.K. and U.S. governmental grants continue to get media coverage for their flawed studies suggesting that CFS can be effectively treated with psychotherapy or exercise therapy. Many of us have experienced physical, financial, occupational, societal and psychological harm as a result of this false information.
• Look to new sources for information and comments about our illness.
Government sites such as the CDC’s do not necessarily communicate the true nature of what we have. The CFIDS Association of America has failed to convey accurate information about the seriousness of our disease, and now states that it has decided to focus on research rather than patient support or advocacy. We deserve better.
• Bring all of your journalistic skills to bear when reporting on our disease.
People with our disease get sick young, usually in our twenties and thirties. Most remain sick permanently, with the ability to build families or pursue careers lost or severely compromised. Many die young, frequently of cancer, heart disease or suicide. Governments trivialize our disease. Few physicians are willing to treat us. Just getting a correct diagnosis can take years. Almost no one knows anything about the suffering, abandonment and indifference we endure.
CFS has a trivial name, but it is a deadly serious disease. Many people have died from it and many more are consigned to a living death. One million individuals in the U.S. and 20 million people worldwide suffer from it. Help us make the world aware of it.
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