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Chronic Fatigue Syndrome: Hidden in Plain Sight

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~Source: Open Salon. March 30, 2013.

By Llewellyn King

I am a reporter and my beat is hell. But it is neither the eternal hell of the Bible, nor Tartarus, the ancient Greek underworld, where the gods of mythology locked up their enemies.

The hell I write about is more prosaic: It is here and now. It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice.

The disease is Chronic Fatigue Syndrome (CFS), a benign name for a malignant condition. Patients prefer that it be called by its old name, and the one used elsewhere in the world, Myalgic Encephalomyelitis (ME). But they are stuck with CFS because that is what the Centers for Disease Control named it when following investigation of a Nevada outbreak that sickened 300 people in the 1980s.

After more than 50 years in the newspaper trade, I chanced upon CFS – which, in my opinion, is the great under-reported medical story of the times — through a friend and colleague who had been felled in her prime and has suffered relentlessly for 23 years. For two of those 23 years, she was so sick that she could only lie in a darkened room on a couch, which she sometimes thought was her coffin.

I wrote one column and was besieged with e-mails of gratitude; notes that began with “thank you” and ended with “bless you.” Journalists are not used to this kind of thing; instinctively, they suspect a trick.

Fatigue that is not alleviated by sleep — official symptom No. 1 — is just the first circle of hell for CFS victims. That does not communicate the terror of helplessness patients report from losing all their abilities, energy and strength – losing the very life force that makes a person both human and alive.

The disease attacks the brain. Patients suffer mental fog and memory and concentration losses, as well as cognitive problems such as aphasia and dysphasia (language problems). This may reflect infection or immune system activity in the brain.

Patients commonly are tormented by pain – by bones that feel as though they will explode, by migraine-type headaches, by extreme sensitivity to light and sound. Stomach upsets abound and can only make worse the problems of generating energy, which so often lead to complete physical collapse. Some patients are bedridden for years. Some of my correspondents tell me they pray for death to end their suffering. There are many recorded suicides.

Inability to function for more than a few hours a day is common among those who are in what might be called remission – periods when not confined to bed and well enough to function in a limited way. Others respond to some antiviral drugs prescribed by adventurous physicians. The body of opinion is that CFS is viral disease, but no virus has been isolated. Men afflicted with it fare better than women.

Although it is believed to have been around for centuries, CFS has been followed more closely since an outbreak at The Royal Free Hospital in London in 1955 and at Incline Village, Nev., in 1984-85 and an outbreak at Lyndonville, N.Y., in 1985. Sociologically, geographically and climatically all three of these sites were as different as can be – except healthy people, many of them children, came down with something like flu initially, then collapsed, usually after exercise, and have remained sick to this day.

Researchers have noted a variety of pathogens that could be seem to be involved; the highest probability — and most talked about in the CFS community — is that there are many things that can leave a window open in the immune system and through which CFS can climb at any time.

No biological markers for the disease are officially recognized by the CDC. So doctors have to use what is called a “waste basket” diagnosis: If it is not anything else, then it may be CFS.

It appears that families are at some risk of infection in the early stages of the disease. Mostly the patients suffer alone for days, weeks, months, years and decades. Families are crushed with debt and the burden of providing, especially when a parent is also afflicted.

Family members, spouses and lovers drift away and the patients’ suffering goes on — worse some years than others. It is a life sentence — condemning more women than men – for 1 million people in the United States, according to government data, and another 17 million worldwide.

Not only is my e-mail filled with expressions of thanks, but it is also filled with tales of horror. One woman wrote that CFS left her homeless and she lived in a park for weeks; another wrote that she lives in a car that she is not well enough to drive. A West Virginia woman wrote to me because she could not find a doctor in the state who would treat her. A teenaged boy said his father thinks he very lazy, not very sick.

Some doctors try the old nostrum of exercise, which invariably brings on collapse in CFS patients. Others, including the British medical establishment, insist on treating a physical disease as a psychiatric disorder. I have heard from patients all over the world, but those in Britain are among the most pitiful. The National Health Service has favored low-cost psychiatry over high-cost internal medicine. The medical hell about which I write is without national borders.

I find the patients, who have e-mailed me and whom I have met, to be angry as well as desperate. They wonder why have they been abandoned? Why do other diseases get more attention when they have fewer sufferers? Why is the media so indifferent to them? Why does the government spend so, so little (about $6 million a year) on researching a cure?

All that is incontrovertibly known about CFS is that it is a disease of the immune system. It kills slowly through heart disease and cancer. It also has a high suicide rate.

There is a sore irony that nowadays HIV/AIDS, which affects 1.1. million people in the United States and 34 million worldwide, is almost without stigma and has many public advocates – and many celebrity advocates like pop superstar Elton John — raising money for research.

CFS patients feel they are stigmatized, and often are, as malingerers. Their only shining star is author Laura Hillenbrand, author of the bestsellers “Seabiscuit: An American Legend” and “Unbroken: A World War II Story of Survival, Resilience and Redemption” who has CFS and manages to work in a specially constructed bedroom with devoted family support. Her 1994 New Yorker article on CFS was a milestone in the literature of an affliction, also a love story.

Although probable CFS outbreaks can be traced back to at least the 19thcentury, it is still hidden in plain sight. One million CFS sufferers in the United States and millions more elsewhere will continue to suffer until society gets behind the moral imperative of researching a cure. The immediate needs are to comfort the sick, educate the doctors and shame the government.

Llewellyn King is executive producer and host of “White House Chronicle” on PBS. He is also the creator of the YouTube channel ME/CFSAlert. His e-mail is lking@kingpublishing.com.

 Reprinted with the kind permission of Llewellyn King.

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11 thoughts on “Chronic Fatigue Syndrome: Hidden in Plain Sight”

  1. Laehcar says:

    If exercise makes you feel better, then you don’t have the same illness as me. Canadian Criteria definition for ME/CFS states that a patient with ME/CFS will experience an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other symptoms to worsen after exercise/exertion (Post Exertional Malaise). The recovery period is usually 24 hours or longer.

    People with ME/CFS do not seem to benefit from exercise, but rather the combination of exercise-induced IL-6, together with enhanced preexisting IL-6 receptors, produces extreme fatigue. People with CFS/ME should be very sensitive to activities or conditions that produce inflammatory cytokines such as exercise.

    1. leyton says:

      The diagnosis I received was based on the initial glandular fever infection leading to most if not all of the classic symptoms, i.e. muscle and joint pain, constant headache, tinnitus, etc, etc and of course so little energy being virtually bed bound for two years. GET saved me, the CFS/ME community are doing themselves a disservice by railing against proper exercise regimes. A disservice to themselves and others.

    2. JeNeSuisPersonne says:

      This highlights a major problem with finding curative solutions for ME/CFS – – –

      Those who get better with exercise & antidepressants may have been diagnosed with ME/CFS and have been VERY sick, even over a long period of time, but the very fact that they improve with exercise & antidepressants means they should have had a different diagnosis than ME/CFS. This does NOT mean they were not VERY sick, or make their sickness and subsequent recovery and recovery methods any less legitimate. – – –

      Those who get WORSE with exercise, even when done in the most careful way with excellent guidance from a master GET clinician DO have ME/CFS. In fact, this symptom HAS to be present for a correct diagnosis of ME/CFS. – – – Physicians receive little-to-no training in many major, relatively well understood diseases and syndromes. It should come as no surprise, then, that many physicians mis-diagnose ME/CFS, a disease that even those physicians who have some training and sympathy for, still know almost nothing about. – – –

      And, sadly, lumping those who improve with exercise in with those who get worse from even the most careful GET together, will help keep us from finding real causes and solutions to ME/CFS.

    3. brettz9 says:

      With your deservingly forceful lead paragraph, I was already literally getting ready to reply with a “God bless you”. The inadequate articles which are around on CFS are often just dry listing of symptoms or at most “Oh, isn’t that a pity”, and since we can’t usually muster the forcefulness to argue our own case with the urgency it deserves and outrage at its lack of attention, it is sooo rewarding to run into a compelling champion who can empathize with the condition. So, here it is again: “God bless you! God bless you!”

    4. shotly says:

      This article is a ray of hope that there are people who can see this illness for what it is. Thank you so much for your work. I contracted this illness in 1997, and have battled with it ever since. Sometimes the frustration and anger can be oeverwhelming. I find myself asking God “why put people on Earth who are too ill to contribute?” Why waste so many would be productive lives? The CFS communit has so much to offer, yet are too ill to much more than survive.

    5. leyton says:

      Having had ‘very severe’ CFS twenty years ago and having got back to full time work I would disagree entirely with the negative remarks about exercise. A properly guided GET along with anti-depressants got me better. Two years ago I had a relapse and retired prematurely, once again with professional help a GET has provided my route to recovery.

      GET can work if delivered by a clinician who knows what they are doing. CFS patients should not be frightened off trying GET.


    6. leyton says:

      The argument that if you got better through GET then you did not have CFS is as illogical as saying the illness is psychiatric. The fact is that I hit every definition of CFS that I have seen, with absolute ease. My worry is that the negative comments made about GET put off CFS patients from giving GET a proper chance, it took me years to get back to work bearing in mind that I was bed bound and starting off from rock bottom. Derek

    7. Failidh says:

      I’ve been dealing with ME/GFS and fibromyalgia since 1987 after an episode with a serious flu-like virus. I was very ill and debilitated for about 2 years, unable to work and then, though with condinual relapses the condition improved to the point of my being able to resume my old job- with modifications and much time off. I did well managing the condition for about 10 years, when it began gradually to worsen again, with the periods of remission becoming weaker, fewer, and further apart. Now, I am often as ill as I was at the beginning but possible because I am twenty-six years older, with far more cognitive difficulties. I try not to think of the job that I loved but can no longer do, the passionate interests that I can no longer pursue, the husband that I have lost- though who used to call ME my ‘get out of jail free card’- the home and lifestyle that I no longer have. I read your aticle through tears. I am so grateful to you for trying to bring understanding, compassion and legitimacy to this sadly overlooked, misunderstood and misjudged condition. Thank you.

    8. london57 says:

      I think the above article is brilliant in explaining the difficulties that individuals with a diagnosis of CFS/ME face, as are many of the stories posted which document how those with the diagnosis can be ignored by a portion of the medical world. With that said, I had a couple of further thoughts in response to the question of “exercise”.

      It was my impression that the purpose of “treatments” such as GET were not curative, but instead, like programs for a number of chronic health conditions, are focused on managing symptoms and flare ups. I had thought that the focus of GET would be on establishing a baseline of activity and then gradually building, partly to stop yourself over-doing it and with a view to possibly increasing activity levels in the long term. Unfortunately, what such an approach does not guarantee is that functioning will return to normal, that an individual can just “exercise through it” and/or that the individual will not experience flare ups over time. The label “graded exercise” may also intuitively imply quite extreme physical exertion (e.g. a gym session) when in fact individuals may find themselves working on just getting out of bed. The approach therefore seems to me to be rather more subtle and complicated than I imagine some individuals give credit to, perhaps leading to a number of individuals having quite negative experiences at the hands of over-enthusiastic health professionals.

      My point in discussing the above is that I find it surprising that a story of someone describing benefits of GET was met with a response that an individual couldn’t possibly have ME. Chronic health conditions can vary from individual to individual, can fluctuate over time and can be influenced by a number of different management strategies. The idea that an individual cannot have a diagnosis simply because GET led to improvements seems a particularly narrow view, which, considering the experiences of many sufferers with the medical profession, I would have imagined we would want to get away from. An open mind to the experiences and thoughts of others seems to me the most helpful in providing people with a range of things to consider in order to help them manage.

    9. Madelyn says:

      I agree…if you recovered because of exercise, you did not have CFIDS, CFS, or ME. It was something awful, but it was something else. I hope you get a more specific diagnosis, and that you don’t go through it again. Stay well!

    10. bodymindandspirit says:

      I second the “God Bless You” comments! Having ME/CFS IS hell, and this brief article explains it to better than any I have seen to date. You have captured the experience of what it is like to have others tell you “that’s impossible” when you try to explain to them that you can’t ride a bike slowly for 5 minutes on level ground without collapsing, why you can’t always make firm work or social commitments, because you never know how you are going to feel. Some days I lay in bed and wonder, what CAN I contribute? Because I began researching integrative health long before I became sick, I recently earned a grad certificate in wellness coaching in order to help others. I pray that I am well enough to meet with the few clients I have… I live for those times when I can feel useful and valuable… Many talented healers have helped me, yet a “cure” is not within sight. Thank you for amplifying our voice and helping our cause!

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