Chronic Fatigue Syndrome: The Silent Suffering PDF Print
Written by Barbara - Admin   
Tuesday, 22 November 2011

  • By
    Llewellyn King                November 21, 2011 – 9:13 pm

  • In the world of chronic illness, there is hope and false hope; well-founded hope and dashed hope. New therapies, real or rumored, lift the spirits of the desperately sick before they are brought crashing down, when science comes up empty-handed — such as when a controlled study fails to confirm a cure, or even the path to a cure.
     
    This is what has happened this year to "the silent many" –  people who suffer from Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis. Silent because of all the big diseases, it is probably the least publicized, least talked about, and the most ignored in medical institutions — the institutions charged with protecting the public health. There are an estimated 1 million CFS sufferers in the United States, and another 16 million worldwide.
     
    As AIDS was initially, CFS is haunted by fear, stigma and ignorance. It is misdiagnosed and often its victims are abused, thrown out of their families, and live in squalor and pain with little hope. They despair that they cannot convince doctors, their families or their loved ones that they are, in fact, sick.
     
    There is no cure for CFS,  just a lot of conflicting theory. There is nothing on the pharmacists’ shelves to relieve their suffering. Nothing.
     
    There are also powerful economic and institutional forces that have conspired to keep CFS in the shadow; in that world of anguish, where the victims feel they are to blame because they are a burden to those who love them. The costs of care are crushing.
     
    What is known is that CFS is a disease of the immune system; that it is reported among women by 3-to-1; that it has no cure — no certain day when the monster will leave the sick bed. It ebbs and flows in cycles — good days and bad days, good years and bad years. People who suffer say it confiscates their lives. There are terrible periods when one is so sick that one is bedridden for months or years.
     
    Most doctors are not qualified to offer CFS diagnoses, confusing it with other conditions. The rural poor are almost entirely on their own. Suicide is common, according to Marly Silverman, a sufferer who heads an umbrella group that calls itself Pandora.
     
    This year has been a mixed year for hope in the CFS community: A whole line of research has been dashed, and with it a lot of accumulated hope.
     
    Some researchers — particularly those at the privately funded Whittemore Peterson Institute in Reno, Nev. — had spent great effort in pursuit of a retrovirus, XMRV. The institute, and its scientific allies, had believed that XMRV was the culprit and that if this could be proven beyond doubt, then there would be a basis to develop an antiviral agent to arrest the disease. But separate studies in the United States and Britain have undermined the XMRV hypothesis, leaving the hopeful bereft.
     
    At the same time the use of an experimental drug, Ampligen, is helping a patient elite of about 750: They can get the drug in limited trials and can expect to pay between $25,000 and $40,000 a year for it. Ampligen's manufacturer is a small company, Hemispherx, which has to charge its trial subjects. Unlike large drug companies, Hemispherx cannot administer Ampligen in trials for free, and it needs much more clinical data before it can get full Food and Drug Administration approval.
     
    Ampligen bolsters the immune system: While being treated with the drug, patients report an abatement of symptoms, greatly improving the quality of their lives.
     
    Now comes extraordinary news out of Norway, where a drug developed for Non-Hodgkin’s lymphoma, Retuxin, has produced gratifying results. A Bergen hospital study of CFS patients taking Retuxin found 67 percent reporting good recovery and sometimes full recovery. One patient, a young girl, went from being bedridden to skiing and a full athletic life.
     
    Retuxin suppresses a portion of the B-cells among sufferers, suggesting that it is rearranging the immune system by correcting imbalances in its function.
     
    Promising though Retuxin is, the cost is staggering: Treatment costs $70,000, if you can get it.
     
    These drugs, Ampligen and Retuxin, with their hint of hope in a dark sky, raise a basic societal issue: Is it better for society to pay to make hundreds of thousands of citizens well enough to work, or is the externality of lost work too hard to figure into public health policy and budgeting? – For the Hearst-New York Times Syndicate
Llewellyn King