By Llewellyn King
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?
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Kerry Lauerman
Joan Walsh
Salon.com
Comments
This article compresses my 25 plus years of living with this Silent Invisible Enemy into a one page brilliant description. Thank you for not just listening to those you interviewed, but for researching the history of this illness. Patients around the World appreciate your understanding and true compassion along with your reporting to educate the public and our federal representatives.
Thank you,
Robert Miller
This article compresses my 25 plus years of living with this Silent Invisible Enemy into a one page brilliant description. Thank you for not just listening to those you interviewed, but for researching the history of this illness. Patients around the World appreciate your understanding and true compassion along with your reporting to educate the public and our federal representatives.
Thank you,
Robert Miller
Thank you for reporting on this overlooked disease. There are many questions tht need to be answered, many studies yet to be done and much to be discovered before this "nut" called ME/CFS is cracked. This is perhaps the most complex, intricate and mysterious political and scientific issue I have ever known about. It is more than ME/CFS. We now have family of ME/CFS/GWI/MS/Autism/Epilepsy and Chronic Lyme Disease being tied together with evidenced based scientific proof that these are in the same family and/or strongly linked. We need help and we need it NOW. Science and journalism will not be enough; we need the third element: we are gearing up for Political Action. Thank You so much for your reportings sir. Godspeed. Julia Hugo Rachel.
Thank you for reporting on this overlooked disease. There are many questions tht need to be answered, many studies yet to be done and much to be discovered before this "nut" called ME/CFS is cracked. This is perhaps the most complex, intricate and mysterious political and scientific issue I have ever known about. It is more than ME/CFS. We now have family of ME/CFS/GWI/MS/Autism/Epilepsy and Chronic Lyme Disease being tied together with evidenced based scientific proof that these are in the same family and/or strongly linked. We need help and we need it NOW. Science and journalism will not be enough; we need the third element: we are gearing up for Political Action. Thank You so much for your reportings sir. Godspeed. Julia Hugo Rachel.
Thank you!
Thank you for this and all your other work on behalf of those who suffer this illness. On many days I feel as though I am lying in my own coffin, but your pieces and videos are a point of light.
ME has a clearly defined disease process while CFS by definition has always been a syndrome. A syndrome (for example CFS) is defined by symptoms. A disease (such as ME) is defined by symptoms plus objective and measurable findings. Evidence based medicine requires an appropriate treatment plan which must correspond to the patients diagnosis. The mixed cohorts created by the ME/CFS rubric has caused the controversy and mystery and lack of meaningful research results. Those with a testable neurological illness will never be properly identified or treated appropriately if they are diagnosed with an unexplained symptom syndrome based on fatigue.
Only with proper diagnosis will we have any meaningful research which will provide effective treatments. We have not had effective advocacy but should expect accurate journalism.
"The Chronic Fatigue Syndrome" was based on what three ME literate physicians present during the 1987 Holmes committee deliberations had identifed as "a typical outbreak of ME":
The Lake Tahoe "Raggedy Ann Illness" whose story is described in Hillary Johnson's excellent book "Osler's Web".
The CFS appellation was originally intended to be a provisional term to be used until the relationship of this illness to the Royal Free Disease / ME could be scientifically established... which seems to be taking a great deal more time than we thought.
Thank you for correcting the misinformation swirling around CFS.