By Llewellyn King
It's an indecent disease, shrouded in mystery, endless in suffering, in stigma and in despair. It's a life sentence and many of those who are afflicted take their own lives, according to patient advocates.
Witness this e-mail I received from a woman on New Year’s Eve: “Today, December 31, is my birthday. I will not get to eat out, have a party tonight. ... I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat 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.' ”
This scourge, this foul and stealthy confiscation of life, is so little understood that there's even confusion about its name.
In the United States, the disease is known as Chronic Fatigue Syndrome (CFS): a bland and trivializing nom de plume bestowed on the disease by the Centers for Disease Control in Atlanta. Elsewhere in the world, it's known as myalgic encephalomyelitis (ME). American patients tend to use both names and the acronym ME/CFS.
I've been writing about ME/CFS for three years. But in more than 50 years of journalism, I've never had so much reader response. So many cries from the heart. So much gratitude for doing so little.
The disease is socially ecumenical and afflicts an estimated 1 million people in the United States and 17 million worldwide. I hear from a great cross section of the ME/CFS community who have access to a computer and are well enough to use it. There are many sufferers who aren't well enough to e-mail; they're severely debilitated and bedridden for months and years.
Deborah Waroff, a colleague of mine from the 1970s, who's been sick for more than two decades, describes a period of total disability she suffered in 2003 and 2004, when she lay on her apartment couch too sick even to watch television, as “lying in your own coffin.”
There is no known route to infection, no diagnoses and no cure. Research has been scattered and funded grudgingly at such low levels that Dr. Fred Volinsky of Boston has calculated annual federal funding for ME/CFS at only $1.25 per patient compared to $400 for multiple sclerosis.
Last year was especially sad because many patients and some researchers had pinned their hopes on a retrovirus called XMRV. Most of the work on this line was done at the Whittemore Peterson Institute in Reno, Nev., a private research facility founded by the Whittemore family. It now appears that promising conclusions were the result of laboratory contamination, and a paper in Science magazine had to be withdrawn. Worse, there's an ugly dispute between the institute and its former chief research scientist Judy Mikovits. Because there's low-level contagion in families and cluster outbreaks of ME/CFS, the idea that there's a virus at work can't be discredited entirely.
There are parallels as well as dissimilarities to the early days of the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth.
As doctors have no diagnostic procedure for ME/CFS, they dismiss it as imaginary, psychosomatic or sloth. Families believe the disease is sloth: Sons have written to me because their fathers disowned them, believing that they are just layabouts.
Some sufferers are homeless, according to Dr. Leonard Jason of DePaul University, abandoned to life on the streets. He tells of one unfortunate living in a car.
Hospital emergency rooms have no tools, no knowledge. In the frenzy of the just-in-time nature of emergency room medicine, there's no care there for ME/CFS victims. There's precious little in the way of charity funding or home visits, unless the patient has family support they are on their own, alone.
A cure this year is unlikely, but better understanding can start today. Now.
Wanted: A high-energy, high-profile celebrity to do for ME/CFS what Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular dystrophy, and what Michael J. Fox is doing for Parkinson’s: raising concern, raising money and banishing stigma. Fox has raised $264 million for Parkinson’s. By contrast, the Chronic Fatigue Immune Deficiency Syndrome Association targeted raising just $2 million for research last year.
Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly.
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Kerry Lauerman
Joan Walsh
Salon.com
Comments
ME/CFS is a false creation that is not specifically case defined in the US and there are no ICD codes and officially does not exist. It is another made up term and false, deceptive construct. A misdiagnosis of ME as CFS is what has caused the confusion and controversy from the beginning and the trivialization that has undermined any real understanding or awareness. This site should be helping to clarify, not feed into the mythical erroneous misinformation put out by so-called patient groups.
Thank you for continuing to write on this subject. I spent several years being humiliated by the medical profession while trying to find an answer to my illness. I know this is a common theme with most patients diagnosed with this terrible disease. I feel that every time you write on this topic a bit of the stigma is removed. I hope the coming year will bring more funding and answers. A celebrity would be nice as well.
Jill J.
Thank you for continuing to write on this subject. I spent several years being humiliated by the medical profession while trying to find an answer to my illness. I know this is a common theme with most patients diagnosed with this terrible disease. I feel that every time you write on this topic a bit of the stigma is removed. I hope the coming year will bring more funding and answers. A celebrity would be nice as well.
Jill J.
I know many people would like to make a comment in response to this article. I wanted to make sure you are aware that access to registration on this site is closed so most are unable to comment. Thanks again for continuing to write on ME/CFS.
Jill J.
How can the AIDS establishment continue on with a stale "it's caused by HIV" mantra when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money.
How can it make any sense to anyone?
It's so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it's well-documented that HIV is not the cause of CFS/ME.
How else do you explain that there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there...any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) is better on ARV's, or 3) is severely immunosuppresed (AIDS)...
...is yet another CFS patient.
It's already so easy for me to see that the medical establishment simply has the HIV and CFS paradigms inverted, but simply rename CFS, ME, and AIDS all "low natural killer cell disease" and everyone would very clearly see that:
AIDS + CFS + ME = low NK cell disease = one catastrophic epidemic (not caused by HIV)
Now that the 'mystery' has been solved, could we please stop wasting time and re-allocate all the HIV funding into CFS/AIDS research?
I want a revolution!
www.cfsstraighttalk.blogspot.com
1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like AmfAR) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
5. Demand that the White House, 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.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”
www.cfsstraighttalk.blogspot.com
Chronic Fatigue Immune Deficiency Syndrome (CFIDS/CFS) is not a disease. CFS is a syndrome, as its name suggests.
Acquired Immune Deficiency Syndrome (AIDS) is not a disease. AIDS is a syndrome, as its name suggests.
Neither CFS nor AIDS are diseases. A syndrome is a syndrome.
Myalgic encephalomyelitis (ME) is a disease, just like MS or malaria.
CFS and ME are not the same (one a syndrome, the other a disease). "CFS/ME" terminology is not interchangeable, and is not accurate.
CFS (syndrome) patients like to align themselves with ME (disease) patients because it helps give our syndrome the dignity and respect that it currently lacks (i.e., due to the silly, belittling name our government labeled it). I coined this phenomenon 'disease envy.'
I don't entirely disagree that CFS patients should do this. CFS patients have to understand however that we are stealing the name of a legitimate disease, ME. This is the reason why ME patients typically don't like to be lumped in with the CFS patients, because CFS patients' dilute the meaning of ME's very well-defined disease. I don't blame them; If I were a ME patient, I wouldn't want a CFS patient lumped in with me either.
There is currently a massive initiative to get CFS (syndrome) patients properly diagnosed as ME (disease) patients. Simply look-up: ME/ICC vs CFS/Fukuda. You will have to acknowledge however that not all CFS patients will quality for a ME diagnosis. I repeat CFS/ME terminology is not interchangeable, and is not accurate.
I see the big picture as to why CFS and ME should not be entirely severed (at least until the initiative is complete), as there is a high correlation and probable same causal pathogen shared between the two maladies. Government (political) simply named us two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response.
I always hear CFS patients saying "oh, they're so stupid," "Oh, they're so ignorant. They don't understand my illness." The answer is "no, they're not." The people (political) who set it up this way are very, very smart. They mindfully constructed it this way. It utterly horrifies me that we pay these peoples' salaries (political) to mask the very problem that they created. Government works for us (not vice versa), right? Government sold-out global public health for profit.
AIDS and CFS (syndromes) are political paradigms.
An ailing, immunosuppressed CFS patient could die of complications associated with their severe immune deficiency and not have been funded a dime in research or services. This happens every day in USA, UK, and Australia. {plenty of logical reasons for this geography} As a CFS/ICL/Non-HIV AIDS patient, I prepare myself to be one of the next to go...and I will not go quietly.
Alternatively, anyone in Africa who presents to a doctor with symptoms (of basically anything) gets diagnosed an AIDS patient; HIV+ is not even a prerequisite. So an African could die of TB or a mosquito bite and their death would be ICD-coded as AIDS. AIDS (political paradigm) will get funded another billion dollars of taxpayer money. This happens every day in Africa, even though it is not HIV that caused their death. It's pure lunacy. HIV is not the cause of AIDS, because AIDS is not a disease.
In the Western world, how else do you explain why there is no CFS or ME epidemic in the HIV+ population? CFS and/or ME do not discriminate. The answer is that there is...any otherwise perfectly healthy HIV+ person that also happens to be: 1) symptomatic, 2) is better on ARV's, or 3) is severely immunosuppresed ("AIDS") is...
simply another CFS patient.
AIDS patients are just more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it's already well-documented that HIV is not the cause of CFS/ME.
It's already very easy for me to see that the medical establishment simply has CFS and HIV (political paradigms) inverted, but simply rename CFS, ME, and AIDS all to be "low natural killer cell disease" and only diagnosis patients with low NK cells with it; Everyone would clearly see that:
CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic (not caused by HIV)
SCENARIO:
1) If you had the authority to allocate billions of dollars in taxpayer money to scientific research, where global public health was your #1 priority, would you fund perfectly healthy HIV+ people (most of whom have never been sick a day in their life) or would you fund research for sick, ailing, immunodeficient CFS patients?
The answer remains crystal clear to me.
Neither CFS nor AIDS are diseases. They are politically-defined syndromes. CFS and AIDS patients are not dealing with science. They are dealing with politics.
Basically it is an experience that those that recover want to move on from and those who do not do not have the strength or energy to do what Liz Taylor or even Michael J. Fox did.
I want to thank you for continuing to write about this disease . I, too, hope, that a celebrity might rise up as an advocate in order to raise awareness, more money for research, definition of the illness and treatment/care. Many with the disease are too ill to advocate for themselves, as you point out, and the despair and bewilderment experienced with having a disabling disease and then mocked, dismissed and/or treated as if it is psychosomatic is devastating. It is also frustrating to meet health care professionals who do want to help and are so compassionate and willing, but have no clear diagnostic tools, research to which to refer, and can experiment at best.
I so appreciate your articles and the time you take to write them.
Wishing you a wonderful and healthy New Year!
All I want to say is that as we enter a new year, it would be nice if I had more community care for my situation. Tomorrow I go to a clinic that I can go to every four months or so since it meets only twice a week with two physicians for the afternoon hours. It is in a big clinic and thus is kind of hidden from the community. I stay with the clinic even though they state they are not my medical home to me since maybe a therapy or medicine will come out and I will have a pipeline to it. I have no regular physician since that has been a real bust. I have medical insurance so cost thankfully is not a problem as I am sure it is for many.
I know times are tough but I live in a big US city and the quacks abound since I have gone to them and thankfully lived to tell about it. So I wish more for this year or even this decade. Post me as four years plus and a survivor. Yes, we live on the Internet and blogs such as those like
http://www.psychologytoday.com/blog/turning-straw-gold/201111/head-holiday-stress-educating-loved-ones-about-your-health-limitation with Toni. Come by and feel at home at last!