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Patients with ME-CFS Need Your Help!
1. No one knows about this disease - even worse, the name "Chronic Fatigue Syndrome" (CFS) is a joke, mocked everywhere from the Tonight Show to the Vice President's wife, Lynn Cheney (while campaigning). Those who have heard of the disease have no idea how serious it is, and patients are usually misled as to what they should expect when first diagnosed. This is the first thing we need fixed. Both CDC and a published demographic study from DePaul found that 800,000 Americans have this disease, but as many as 90 percent of patients have no diagnosis. If nothing else, the current CDC estimates should be public knowledge. We need your help, because no one is listening to us.
2. After 2 decades, The U.S. has yet to approve a usable diagnostic criteria for the public. The definition used by the CDC was created for research purposes and is both inappropriate, and very difficult, to use for diagnosis. There is an option available. A group of medical experts from the United States and Canada have put together a set of consensus documents spelling out how to diagnose and treat this illness, which for purposes of compromise they called "ME-CFS". Canada has formally approved these documents, and we ask that the United States do so as well. They are available from the Journal of Chronic Fatigue Syndrome, or online from The Canadian National ME-FM Action Network.
3. As happened with AIDS, the government has totally ignored the children. We still have no prevalence study for children and adolescents. Preliminary studies indicate that it does affect children, and that it is as prevalent in adolescence (particularly among young girls) as in adulthood, yet the public is so ignorant that parents are regularly scolded by outsiders for "coddling" young people with ME-CFS. School authorities threaten prosecution when parents follow their doctors' orders and keep ME-CFS children at home. (One Annandale teenager with ME-CFS was required to take gym, despite her doctor's protests, and ended up in a wheelchair as a direct result.) Evidence shows that symptoms are slightly different for children; furthermore, young people who don't have a good handle on "normal" can't always communicate how sick they really are. We also have no studies on the permanent effects of childhood/adolescent ME-CFS, or the effects of commonly used ME-CFS medications on a child or youth's body.
4. Illness means impoverishment. This is particularly true for young people. Many young people did not work enough quarters before becoming ill, so they cannot qualify for Social Security Disability or Medicare. The public disdain for this disease is so great that others are wrongfully denied private long-term disability insurance or public Social Security Disability, simply because the examining physician does not "believe in" the disease and refuses to read the patient's own doctor's reports. There are lawyers, doctors, and professors among those who have been impoverished by this disease - along with their families. Anybody reading this is just one disease away from total impoverishment: "Chronic Fatigue Syndrome."
5. Caregivers need support. Spouses and parents are overwhelmed. Many leave under the pressure, or the disappointment. Those who remain get little support from a doubting public. Services such as eldercare are not available for those who care for invalids under the age of 65.
6. The scandal of private long-term disability needs to be directly addressed. Because of ERISA, disability companies can deny patients who are desperately ill, and the worse they face if they lose in court is having to pay what they owed in the first place. Damages cannot be awarded unless the patient's lawyers can prove a deliberate pattern of deceit on the part of the insurance company - to a federal judge. State insurance cases used to be tried before a jury, using the common sense standard of preponderance of evidence. ERISA has created a perverse economic environment that rewards the company that deliberately denies insurance. Each state used to have oversight agencies - while ERISA voided these state powers,it did not create equal powers for the federal government. This needs to be fixed.
7. Problems with Social Security remain. To its credit, the Social Security Administration is working with the CFIDS Association of America to make changes. But many more need to be made: there are dramatic variations by region, and too many patients receive no income at all for 1-4 years despite being eventually approved. The Social Security Administration cannot even provide an accounting of how many ME-CFS patients have been awarded Disability - when questioned in 2003, one administrator said that there were only 500 patients in the entire nation on Social Security Disability because of "CFS". Later they stated this was inaccurate, but they have not provided the correct number. Before a formal procedure for granting Disability to "CFS" patients was adopted by SSA, many ME-CFS patients were granted disability for a "mental illness". Now these patients are being dropped from SSA, without the opportunity of re-designating their illness. Many of these worked for decades, putting income into Social Security - but now that their time has come, the nation turns its back.
8. Treatments- since no one knows how serious this disease is, nobody is working on drugs. Patients are currently campaigning to have Ampligen, the only drug currently in the FDA pipeline that directly addresses ME-CFS etiology, placed into "fast track" status. The government regulates the money supply with more care.
9. Relief for pain. We are so fearful that someone might be abusing pain medication that suicide has become the only method for relief for all too many - including two highly publicized visits to Dr. Kevorkian by patients who cited their unrelieved pain as the cause.
10. Use the categories in WHO's ICD-10M. The World Health Organization establishes a numerical cateogorization for diseases that is supposed to be used by all participating nations - and we are one of those nations. In the United States, we use the numerical categorizations for classifying diseases for insurance reimbursement. The United States has refused to adopt ICD-10 for diagnostic puposes, although it was completed nearly a decade ago. In ICD-9, "CFS" is categorized under "diseases of unknown etiology." In ICD-10, "CFS" is categorized along with "M.E." under neurology.
11. Change the name, return to the name in use (M.E.) when the name "CFS" was invented, or use the compromise name, "ME-CFS." "Chronic Fatigue Syndrome" is misleading and insulting, particularly because at the time it was chosen, both CDC and NIH openly stated the disease was caused by "stress", and particularly affected "upper middle class women trying to have it all." Now that we know it is an equal-opportunity illness, and that it is not "caused" by stress but is rather a physical illness impacting the neurological, immune, and endocrine systems, it is time to drop the misleading namd that accompanied a misleading patient portrait.
Mary Schweitzer - The CFIDS/ME Information Page - http://www.cfids-me.org/