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Chronic Fatigue Syndrome: The Silent Suffering
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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
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30 Comments
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Thank you so much for bringing attention to this disease and how disabling it can be. I am amazed at how many people can suffer so much and yet be so invisible and poorly understood by the medical community and society at large. I was bedridden for a period of time after a sudden onset of ME/CFS and completely disabled. I am now about 75-80% recovered from using supplements and dietary changes to address the severe immune dysfunction that led to my illness.
I agree that pharmacology doesn't offer much hope, but I don't understand why it should. I didn't become sick due to a deficiency of any medication so why would it make sense to look towards medication as the answer? Our bodies are biological entities and how they work, and how it goes wrong, can be understood. Dietary changes and supplements are powerful tools to heal the underlying causes of our symptoms and illness. They have been powerful enough to give me my life back and to nearly recover my son from autism. These drugs are out of the reach of most of us anyway. Since this is the way the system has treated us, why not step outside it and help ourselves?
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Well written and thought-provoking. Thank you.
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So grateful to you for writing this.
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Thank you for this article.
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So grateful to you for writing this. Thank you!
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If Mr. King wishes to bring about change with this issue, he should further qualify his statement regarding "powerful economic and institutional forces that have conspired to keep CFS in the shadow." This is at the heart of this.
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Someday, when the history of this disease is written, you will have my vote as an ME/CFS hero. You really seem to grasp the extent of suffering that patients suffer. Most people never see it, because when patients are sickest, they are housebound (and sometimes bedridden), so that they are hidden from view. Thank you for your efforts to make the invisible visable.
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It is rare to read an article on CFS that gives an accurate description of the patient experience. Even those with the best of intentions often miss key elements of the actual experience. Thank you for your perceptive, investigative reporting on this horrible disease.
It is one thing to have a live altering illness that gains the understanding and compassion of family members and medical personel. It is quite another to experience the destruction of your life with ridicule and misunderstanding being heaped on top of it.
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You hit the nail on the head for me anyway! I feel I overuse the phrases "I'm so sorry" and "thank you so much". My condition keeps me bedridden for several days to a week or more at a time these days and I feel so bad for my husband that he either has to cook dinner after working all day, bring home take-out, or just eat sandwiches every night. He also has to grocery shop, many times do the laundry and ironing, wash the dishes, and do all the errands that need being done. Thank God I was able to be recognized as disabled because now with my income partially "replaced" that we so desperately missed, we are able to have a woman come in every other week to clean; otherwise, my hubby would probably have to do that, too.
I am so tired (pun not intended!) of making plans to do something only to have to cancel it on the day of. I used to just not make plans for anything, but what kind of life is that? So, I continue to make plans and appointments and then hope the other party understands when I have to cancel or reschedule. We have to throw away so much produce and meat because, when I am feeling good, I plan to make a nice dinner or two during the upcoming week (I LOVE to cook and these would be meals that are too involved for hubby to take on), only to find myself bedridden again all week and the food goes bad.
Anyway, thanks for letting me vent… your article helped me to do that! Blessings to all of you sufferers out there.
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Thank You ,Sir.
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Thank you for showing that responsible, non-corporate, humane journalism still exists
This disease has ruined last 10 years of my life, wrecked seven before that.
ha! gave away my fishing gear this year (don't know whether to laugh spit or cry about that), haven't used it in oh 14? years…been fishing since I was seven years old…can't afford to get upset about it anymore
gave up writing ages ago, and don't do much art as it's progressing (last two terrible Winters really exacerbated it)
This disease is literally something you wouldn't wish on your worst enemy.
From personal experience, the cognitive problems are akin to a touch of meningitis but more like very low blood sugar, so, many folk may get an inkling from that as to what the hell it does to your mind/brain/sensations. I once was a genius, now I'm a higher functioning moron!
Part of the Scottish health system is now recommending that ME is seperated from CFS: the advantage of having a smaller, somewhat more responsible government
"ALBA GU BRATH!"
God bless you, sir!
Steve, AKA, Silverblade The Enchanter
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There is a 3rd option, that modulates the immune system, without wiping out the immune system. This option won't make news head lines, because it is an old drug, being used in low dosages. Treatment costs about $30 a month.
Watch the video at http://www.ldnscience.org to see how low dose naltrexone works.
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Sending you a HUGE thanks from the Netherlands, mr. King – hoping there'll be a change in the way people think about the illness ME and its millions of sufferers!
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Thank you so much, Mr. King, for understanding us and writing about it! may the Lord bless you!
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Thank you Mr. King. Most humbly and from the bottom of my heart. You are a true hero. Your work, support and acknowledgment of our terrible plight fills my heart with boundless gratitude.
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Thank you, Mr King, for caring AND for pointing out the economic inequalities rampant as far as real treatments go.
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Thank, you for this article, if it had a like button I'd so press it! I would give anything to be healthy and able to go back to work, I'd do it in a heartbeat…This is a miserable way to live…we need help!
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It's very good that you are so supportive of those of us with CFS. I liked the video which you did with a woman with CFS who measures her days as good or bad, depending on if she can make salad or not. I felt very validated.
Although there are down times, there are also positive developments. Dr. Derek Enlander is setting up a ME/CFS research and treatment center at Mount Sinai in NYC. Rave reviews came from attendees at his Nov. 20 seminar, and they are impressed by the researchers hired.
Also, there are studies going on by many researchers for causes and biomarkers, which are making strides in understanding what this disease can do, which can be measured by objective tests.
There is definitely a big problem with lack of government attention in research or funding. Dr. Enlander's center is privately funded.
The government is not taking this seriously enough. The suffering, as you know, is great. It is dismaying that people with this disease and their supporters have to push so hard to get any recognition at all, more or less funds for research.
Another thing is the cost of the drugs. Ampligen's costs are prohibitive to many unless Medicare or Medicaid covers them. But the drug is not approved by the FDA, so coverage would seem impossible at this time. And with about 9,000 people in five states being taken off coverage for HIV/AIDS medications and put on waiting lists, it seems doubtful that Ampligen would be covered in many places, even if the FDA approves it.
Rituximab is also a financial issue. If Drs. Malle and Fluge's studies hold out and are continuing to succeed and help ME/CFS sufferers, and the drug becomes an accepted treatment for this disease, how likely is it — with a price tag of $70,000 — that Medicare and Medicaid will cover it? A lot of people with this illness have one of the governmental health plans, and are subject to limitations they pose on medication coverage. And they can't pay for it otherwise.
I don't think that society should pay treatment or not based on the finances. We all live in this society. People pay taxes and contribute to society in many ways by their jobs and other work, when they are physically able to do so. It's a moral and human obligation to take care of people who are sick, whether with cancer, heart disease, HIV/AIDS, MS, CFS, etc. It's a no-brainer to me. It should be a priority in the federal budget and state budgets because we're human beings, and our health and well-being matters.
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So grateful to read a good article regarding CFS. Like silverblade said " This disease is literally something you wouldn't wish on your worst enemy" That pretty much says it all. I'm 28 years old and have had cfs for 7 years. I was once on the path to play baseball in College…Now I have days that I can't get up to feed myself. Lucky for me my friends and family know that if something can keep a man like me bedridden….it must be serious. My heart goes out to everyone who not only has this disease, but doesn't have the support I have. I pray everyday that a cure for this comes out soon.
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There will not be a way to understand ME if it is combined with CFS.
ME/CFS is a misnomer. CFS is not ME and ME should not be known as CFS.
It is the combining and misusing terms and meanings which is being promoted
by these "umbrella groups" that has been causing most of the problems.
ME has a clearly defined neurological disease process while CFS by definition
has always been a "fatigue 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. 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.
For example, studies have shown exercise to be helpful for patients with CFS. CDC lists
Graded Exercise Therapy (GET) and CBT as treatments for CFS.
[http://www.cdc.gov/cfs/general/treatment/index.html]
Exercise intolerance is a defining feature of ME and makes ME patients physically sicker.
Graded exercise programs (GET) are probably the single most inappropriate and harmful
‘treatment’ for ME patients. ME patients cannot improve with something
that has been proven to worsen or exacerbate the pathological features. Exercise
can cause disease progression or even permanent damage. Patients who were mild
or moderately affected have become bedridden and severely worsened by exercise
or overexertion. In addition to the risk of relapse, sudden deaths have also
been reported in a small percentage of M.E. patients following exercise. Dr.
Elizabeth Dowsett states: ‘20% [of ME patients] have degeneration of cardiac
muscle which has led to sudden death following exercise.’
The mixed cohorts created by the ME/CFS rubric has caused the controversy and
mystery and lack of meaningful research results. Only with proper diagnosis will
we have any meaningful research which will provide effective treatments.
We have not had effective or credible advocacy but should expect accurate
journalism.
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Thank you all so much for your comments. I agree, this person knows what he's talking about. You just know when you hear it – there's suffering involved. More than that, I don't feel so alone now having read all your comments. I feel alone in this thing because as you've said – we're hidden out of sight when sick. I thought I was the only one that made plans then cancelled – disappointing family and friends constantly. I felt it better to not make any plans after a while. Horrible disease. I am looking for a site to chat with my fellow sufferers – I'm thinking it's akin to alcoholics talking at AA meetings. We still suffer, but we at least feel we're not alone anymore. Any good chat rooms etc, please let me know stammen01@hotmail.com
Feel free to drop me a line if only to share your story with me. I'm writing a book called "Lost & Guilty" – anyone with the disease understands the title.
God bless and thanks for the great article.
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Thank you for this article from one of the estimated 7000 people who have M.E. in Northern Ireland.
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Thank you for faithfully chronicling our ME story, Mr. King, and for the policy challenge you raise on our behalf.
You are right, of course, about the “powerful economic and institutional forces that have conspired to keep CFS in the shadow.” Your readers should also know what another article contributes to the tale that you, with eloquent compassion, tell: http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
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Jill I agree that ME should not be confused with what the CDC calls "CFS", however, there are many of us who have been diagnosed with CFS who really suffer from ME, and NOT some mental illness that has erroneously been included in the CDC's loose case definition, and subsequently much of the research. You are correct that the fatigue syndrome outlined by the CDC is not the neurologically based disease from which most of us suffer, but it can confuse some non-patients to simply say that ME and CFS are two different things. Most of us here in the US who are diagnosed with CFS, including me, actually have a neurologically based autoimmune disease, but our government has chosen to label it by the name of just one of the many syptoms we exhibit.
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Thank you for a clear exposition of the dilemma!
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Thank you for continuing to be our voice. The issue if complex but the government inaction and poor funding is almost criminal.
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Dear Mr. King: Thank you so much for your article. You are so appreciated!
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Thank you so much, Mr. King!
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In my view, if CFS/ME patients truly want billions of dollars of funding to be allocated to studying their illness, they need to first demand of their government officials' that our medical establishment (NIH/NIAID) conduct a Re-Appraisal of AIDS (i.e., admitting that HIV is not the cause of AIDS). I believe CFS and AIDS should be researched collectively by scientists rather than as separate entities. I suggest that the CDC's AIDS Division be moved underneath their CFS umbrella so all the infections that AIDS and CFS have in common are researched together. I am not suggesting that CFS is AIDS, as I know people don't like sound of the 'scarlet letter,' but what I am stating is that AIDS patients simply have CFS, which, as CFS patients', we already know is not caused by HIV. I have already demanded (of this Adminstration and the last) that Obama, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS. I further submit that an annual international joint CFS & AIDS conference be held by the World Health Organization, and that next December 1st be declared the first World AIDS/CFS Day. CFS patients are long overdue the respect, and ultimately I am focused on the billions of dollars to back it's delinquency. I vote for viral parity, and I measure success based on how much money backs my government's stale (it's caused by HIV) rhetoric.
I stopped fighting for myself a long time ago. I fight for humanity.
http://www.cfsstraightttalk.blogspot.com
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Today Dec.31 is my Birthday. I will not get to eat out, have a party tonight. My gift today was finding this report on the the White House Chronicle about ME/CFIDS. Thank You for telling the story, and facts. I am not sure I can hang on another year when, everyday is so hard to get though. Just a few weeks ago a fat A– doctor laughed at me telling me there is no such thing as CFIDS, and my husband just sad there not once backing me. That was more hurt than I can carry for another year. I pray every night, now I lay me down to sleep, and please lord take me before I wake.
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