In 2010, I made more friends than in all of my life. They are scattered across the United States and around the world. But for their sake, I wish they had never heard of me.
Sadly, my new friends know me only because I have taken up their cause. I have written and broadcast about their plight, and they have responded by pouring out their hearts to me.
For very minor service, I have received more gratitude, more praise and more life stories than from anything I have written or broadcast in five decades in journalism.
My sad, suffering new friends are victims of a grossly misnamed disease: chronic fatigue syndrome (CFS). It was once known more robustly as myalgic encephalomyelitis (ME), which at least suggests seriousness even if it isn't quite accurate. Myalgic describes pain in the joints and encephalomyelitis, inflammation in the brain and spinal cord. CFS has no known cure, and varies in intensity during the sufferer's lifetime.
In 1988, the Centers for Disease Control named the disease chronic fatigue syndrome after an outbreak in 1985 at the Incline Village resort on Lake Tahoe, Nev.
As far back as the 18th century there were recorded outbreaks of the disease, which was given various given names. In 1955, there was a major outbreak at the Royal Free Hospital in London.
The 300-case cluster in Nevada is generally recognized to be the largest in the United States. The second-largest cluster occurred in Lyndonville, NY, a northwestern hamlet where 216 cases were confirmed in a population of fewer than 1,000, also in l985.
A Lyndonville physician, David Bell, is regarded as one of the true experts on CFS, as well as one of the most dispassionate in the controversies that swirl around the disease. Bell has resisted pressure from both the medical establishment and patients' groups while retaining their respect.
As I see it, there are four controversies that plague discussion, research and therapies:
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Is it a psychological disease with severe physical manifestations (a diagnosis favored by the British medical establishment)?
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Is it caused by the new retrovirus XMRV (first spotted in prostate cancers) as some researchers believe, and nearly all the 1 million patients in the United States pray will lead to a cure?
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Some charge there is a conspiracy in the medical establishment to downplay CFS out of guilt over past indifference, or pressure from the psychiatric practitioners who are reluctant to surrender jurisdiction.
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Others fear a threat to the general population — clusters confirm CFS is contagious. But the pathway of the pathogen (air, blood, sexual intercourse, surfaces, food) or how great the risk is unknown.
Thanks to the Harvey Whittemore family — daughter Andrea Whittemore Goad has been a CFS sufferer since childhood — some serious, privately-funded research is being done at the Whittemore Peterson Institute (WPI) in Reno, Nev.
It is from this institute that the most compelling evidence of a retroviral role in CFS has originated. But recently, it has been refuted by British scientists who claim there was contamination in the tests, skewing the results.
Dr. Judith Mikovits of WPI rejects the British conclusions of contamination. She is very confident that she has found XMRV present in a majority of CFS patients, contending that she has used four methods of analysis against one in Britain.
Bell, the hands-on doctor from New York, told me he believes the virus is present. Yet only when XMRV is irrefutably proven to be to blame can the search for a cure take shape.
These are among issues that will be discussed on April 6-7 at a “state of the science” meeting at the National Institutes of Health in Bethesda, Md. But there is no expectation that anything very new will be revealed as the debate rages daily on the Internet.
Deborah Waroff, a gifted New York City author, former securities analyst and CFS sufferer for 22 years, tells the story of her first attack this way: “I have no idea how I got it. I had the symptoms of flu. After a week, thinking I was pretty well, I went back to my normal activities like biking and tennis. Then after a week, I was sick again. This repeated several times that summer [1989], until I got to a point where I was never well again. After a little activity, I would collapse, fold up.” Often, Waroff is bedridden, and nothing has improved permanently.
Her symptoms were classic; fever, dizziness, stomach upset, swollen lymph glands and frequent headaches. She developed cognitive problems such as putting the wrong words in sentences, known as dysphasia.
Waroff introduced me to my new friends and their terrible witness to suffering, abandonment and medical indifference. Their families break up, their spouses and lovers drift off. Infected parents worry for their children. One correspondent told me that they are the “unburied dead.” Others said they were “living in coffins.”
They have no celebrity spokesperson. They have no Washington lobby fighting for research dollars. They have no hope that a cure is just around the corner; and little confidence that government research organizations are trying hard enough, if at all, to find one. To know them is to peer into hell. — For the Hearst-New York Times Syndicate
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I am so impressed by this article. You have captured the essence of the state of the science, the politics involved, and what it is like to live with this disease.
Thank you for speaking about and for so many of us who are part of this almost invisible, to date, epidemic.
One small correction, The State of the Knowledge Workshop ME/CFS Research is on Aprlil 7 and 8. The agenda is now posted here https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm
Hopefully this SOK is a strong indicator that the governement will start ensuring proper diagnosis, treatment and care & physician education.
Thank you from the bottom of my heart.
Jody
Thank you so much for covering our story. We are the MS patients of this century only we are locked in the asylums of our own bedrooms. Just as MS was referred to as hysteria until the cause was found. We are prisoners of the psych community as well when something is not understood. Hopefully XMRV turns out to be our diagnostic discovery. Then the doors to our suffering can be unlocked and a hope for treatment will set us free from this nightmare.
Thank you Mr. King. I sense things are starting to change…I just wish it would happen more quickly.
Dr Mikovits also found that children with autism have a high likelyhood of being infected with XMRV. In a small unpublished study by collegue Max Pfost, 82% of children with autism were found to have XMRV.
MMR vaccine, often explained as the source of instant regression into autism, over-stimulates inflammatory cytokines that regulate the immune system. That immune system stress is a known trigger for activating a retrovirus, or re-activating a latent retrovirus. No wonder the CDC and others are trying to bury research on XMRV by providing "made to fail" studies. All of the research points to vaccines as the source of Xenotrophic Murine Retrovirus contamination, and the instigator of the epidemic of CFS, and autism. What' makes that fact even more eerie is the surge in vaccine mandates across the US.
Thank you for being a good friend to all of us with ME/CFS. Even though you don't know me I feel that you are truly concerned for my well-being as well as that of all my fellow ME/CFS sufferers.
Claire from Canada
Hi Mr. King:
You have just made another friend. Thank you for writing such a wonderful article about this misunderstood, life robbing disease.
I was 42 when I was suddenly stricken. One day a happy mother of a rambling 2 year old. The next day a debilitated bedbound person who could barely eat, bathe or make it to the bathroom.
The years I thought I would spend teaching my son to ski, play baseball, ride a bike, skateboard, etc have been spent lying in bed waiting for him to come home and tell me about his day.
Even worse is the treatment a patient with this illness receives in the medical world. Told you are depressed, a malingerer, faking, looking for attention. It is actually shocking, especially to a person who has spent her entire life on the go, living and enjoying life to its fullest.
Here I lie 8 years later, my son is now 9. My family has spent 100,000 of $'s seeing Drs; trying every treatment out there and still nothing.
I am not a religious person but I do thank "GOD" everyday for Dr. Judy Mikovits, The Whittemore Family , Dr. Alter, Dr. Lo, the Drs Ruscettis and others who are finally bringing the seriousness of this disease out into the bright light.
I now thank you too. Please keep reporting and writing about this disease especially to the people in DC who can make a difference about whether or not funding is spent on researching the the BIOPHYSIOLOGICAL causes and treatments of this disease. We don't need another study on depression.
Yes, we are secondarily depressed. Our lives were robbed from us and at this point there is no hope of treatment. If we weren't depressed we would be unfeeling machines.
As a white woman who grew up in the US, I experienced my first true feelings of prejudice when I got sick…I would walk into the Dr's office, they would see a 40 something thin white woman and before one word was exchanged, they would come to their conclusion about me….depression. Well our disease is not caused by depression …there is something going haywire with our immune systems and it needs to be fixed.
Let's hope that the answers come soon….personally I hope to run and play outside with my son while he is still a child. Time is passing, get busy researchers and Dr's find a treatment for us.
Warmest Regards, Lisa
On January 9 1985, AP science writer Paul Raeburn wrote one of the first articles in the United States about CFS.
His lede began thusly: "People who for years thought the ongoing fatigue, fever, and swollen glands were “all in their heads” because doctors couldn’t find a cause may have a herpes-like virus…"
The EBV studies cited were by Dr. James F. Jones and Dr. Stephen Straus, both of who subsequently lobbied heavily for CFS as a psychosomatic disorder when their virological research was not well received. Will it be the same with XMRV? Will interest drop off?
How much has changed?
Subsequent stories in the late 80s and early 90s refer to CFS as "mysterious" a word that is just as common in CFS stories in 2011.
Not much has changed.
As for celebrities, Hollywood director the late Blake Edwards and his wife Julie Andrews tried to rally the Hollywood crowd nearly two decades ago when Mr. Edwards was diagnosed with CFS. Their attempts came to naught despite other celebrities and high profile athletes also having been diagnosed with CFS – the lingering psychiatric stigma may have been to blame.
Not much has changed.
Despite being housed under chronic viral diseases in the high consequence pathogens division of the CDC, most studies associating CFS with multiple pathogens has been done by extramural researchers. The CDC has focused primarily on psychosocial studies, with the few virological studies done being underpowered, done with what would now be considered antiquated technology, assuming that all viruses are found in the sera, and ignoring disease stage.
As new CDC branch chief Elizabeth Unger has noted, waiting six months for diagnosis makes it very difficult to determine infectious etiology. The six month qualification added to the 1994 CFS Fukuda definition may have come from UK psychiatrists on the committee who were attempting to fit CFS to the criteria for psychosomatic disorders which did require six months duration. The failure to make severity a key part of the definition may have related to the hypothesis that undifferentiated fatigue is quite common in the general population as well. Adding severity would negate that hypothesis as applied to CFS.
It's not a matter of conspiracy so much as multiple groups studying very different populations under the same name. Something has to give in order to untangle the scientific muddle this has caused in the literature. But will anything change?
Without biomarkers and/or adequate biomedical research funding it may well be that another 20 years down the line journalists will still be writing about how "mysterious" CFS is.
On January 9 1985, AP science writer Paul Raeburn wrote one of the first articles in the United States about CFS.
His lede began thusly: "People who for years thought the ongoing fatigue, fever, and swollen glands were “all in their heads” because doctors couldn’t find a cause may have a herpes-like virus…"
The EBV studies cited were by Dr. James F. Jones and Dr. Stephen Straus, both of who subsequently lobbied heavily for CFS as a psychosomatic disorder when their virological research was not well received. Will it be the same with XMRV? Will interest drop off?
How much has changed?
Subsequent stories in the late 80s and early 90s refer to CFS as "mysterious" a word that is just as common in CFS stories in 2011.
Not much has changed.
As for celebrities, Hollywood director the late Blake Edwards and his wife Julie Andrews tried to rally the Hollywood crowd nearly two decades ago when Mr. Edwards was diagnosed with CFS. Their attempts came to naught despite other celebrities and high profile athletes also having been diagnosed with CFS – the lingering psychiatric stigma may have been to blame.
Not much has changed.
Despite being housed under chronic viral diseases in the high consequence pathogens division of the CDC, most studies associating CFS with multiple pathogens has been done by extramural researchers. The CDC has focused primarily on psychosocial studies, with the few virological studies done being underpowered, done with what would now be considered antiquated technology, assuming that all viruses are found in the sera, and ignoring disease stage.
As new CDC branch chief Elizabeth Unger has noted, waiting six months for diagnosis makes it very difficult to determine infectious etiology. The six month qualification added to the 1994 CFS Fukuda definition may have come from UK psychiatrists on the committee who were attempting to fit CFS to the criteria for psychosomatic disorders which did require six months duration. The failure to make severity a key part of the definition may have related to the hypothesis that undifferentiated fatigue is quite common in the general population as well. Adding severity would negate that hypothesis as applied to CFS.
It's not a matter of conspiracy so much as multiple groups studying very different populations under the same name. Something has to give in order to untangle the scientific muddle this has caused in the literature. But will anything change?
Without biomarkers and/or adequate biomedical research funding it may well be that another 20 years down the line journalists will still be writing about how "mysterious" CFS is.
Many of us wonder where our celebrity spokesperson is. Who will take up the cause? When we patients do it (when we are able), we are often only able to do it from our lap tops. Who will run our races for a cure?
I am one of many who have experienced not just partner drift, but friend flight. A "good" friend (someone I thought would be a life-long friend) literally went around telling everyone who would listen that my illness was in my head and that he and his partner were not visiting me because it would enable me. If people left me be, then I would grow tired of the self imposed isolation. The same person was unwilling when another friend tried to point out that there was real research showing physiological illness.
Indeed, CFS has left me with Stage 4 Kidney disease. But that friend and my partner, who tended to believe others rather than me, don't know that because they have long since left my life.
I also find it interesting how our normal, human failings are then used to build support for our character assassination, making it easier for friends to just walk away.
I try to tell myself that this behavior must have its roots in instinct, a sort of self preservation. It's the only way I can think about without losing my affection for the human race in general.
My story is far from unique as this writer knows. Many of us have become pariahs where we were once active, well-liked individuals.
Hi Mr. Lleweyllyn King,
Consider this message from a grateful potential future friend! I hope that you are able to attend the NIH state of the knowledge workshop. It is April 7-8 this year. They actually included "Myalgic Encephalomyelitis" in the header! Btw, your summation of the difference between "Chronic Fatigue Syndrome" and "Myalgic Encephalomyelitis" as a name is astute. Another problem is that the case definitions for Myaglic Encephalomyelitis are generally more restrictive whilst probably half your guests could qualify for "Chronic Fatigue Syndrome" if the British "Oxford Criteria" was used. As a patient, I believe we won't get anywhere until we get a definition that is fairly accurate and not so broad as to always serve up a really heterogenous group on a platter. The frustrating thing is like the Canadian Case Definition of 2003 there are definitions that are far superior to the 1994 CDC definition or the 2005 CDC "Expanded Definition." It is frustrating that these are not being used to support biomedical investigation. And that there is no money for biomedical researchers.
Anyways here is the link for the work-shop–I hope, really hope, you are able to go!:
https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm
Also have you heard of, a fellow journalist, Ms. Hillary Johnson? Her book Osler's Web is considered to be the best historical reporting on the "beginnings" of this illness in the United States. She also has a website at:
http://www.oslersweb.com
Sir, There is an air of desperation among those who are sick. We have been abandoned by our Govt, our Healthcare system, and by Big Pharma drug development. The cascade of progressing symptoms ensures a lifetime of struggle and low quality. Treatment has not evolved. I personally thank you for your help. Now if I can only live long enough to see my beloved daughter and wife receive help, I will be satisfied.
Sir, There is an air of desperation among those who are sick. We have been abandoned by our Govt, our Healthcare system, and by Big Pharma drug development. The cascade of progressing symptoms ensures a lifetime of struggle and low quality. Treatment has not evolved. I personally thank you for your help. Now if I can only live long enough to see my beloved daughter and wife receive help, I will be satisfied.
All I can say to this person is…Thank You for caring and recognising what we have, that's goes a long way, rather than pretending to and then discarding us as being fakes…shame we don't have more outspoken people like this in the UK.
Thank you for your support.
I am a sufferer of this disease that wears many disguises. While we are being denegrated as slackers, lazy idle people we will not get the medical intrest that we deserve.
The medical profession in the UK are still very much in favour of pacing, CBT and gentle exercise to be increased in increments. It does not seem to be taking notice of the relapses that this causes in ME patients.
Like any other chronic life threatning illness we did not choose to be ill, but we are. Our cognitive abilities, mobility and immune systems get a thrashing with this disease and we could die from complications from this disease and it seems that it doesn't matter.
I am grateful for you highliting of this….Where USA goes the UK tends to follow….
I am surviving this disease, and I refuse to be a victim
Dear 3:17 Commenter, I am very very sorry you had to go through those losses on top of the devastation of ME/CFS. I think it is wise and humane of you to see the roots of this behavior as being in an instinct for self-preservation. This illness really frightens people, and with good reason. The friend who was worried about "enabling" you and tried to tell others how to treat you, is beyond the pale, though. In cases like that, I can only pray that Karma is real! I hope he will enjoy his next life as an amoeba.
Thanks, Llewellyn, for your coverage of this neglected disease.
Dear 3:17 Commenter, I am very very sorry you had to go through those losses on top of the devastation of ME/CFS. I think it is wise and humane of you to see the roots of this behavior as being in an instinct for self-preservation. This illness really frightens people, and with good reason. The friend who was worried about "enabling" you and tried to tell others how to treat you, is beyond the pale, though. In cases like that, I can only pray that Karma is real! I hope he will enjoy his next life as an amoeba.
Thanks, Llewellyn, for your coverage of this neglected disease.
We may not have a celebrity spokesperson, but I feel very fortunate that we have you. Thank you so much!
Hi I got ME in late 1981 0r early 1982. Of course I was not told that I had ME. My GP sent me to see a physician which I think you call an internist in America and this physician said that he thought that I had Lupus. I did have a red rash on my cheeks and other symptoms which would fill a page but I guess at the time the one that stood out besides my sore musches, bones and terrible head ache was my fingers were swollen and I could not mke a fist and I was unable to move my wrists so that the palm of the hands could be seen and that pain in my wrists and little finger was unbelievale. The test came back negative. I continued to feel so sick that eventually my GP sent me to another physician who thought the same thing SLE or lupus but not the test was negative so I was told by the GB that I was well and continued to be told this on ceveral moore visits even though I told the Dr how sick I felt and could hardly walk into his surgery and difficult talking and also fell asleep in his waiting room. In approx 1984 I hears that Dr Jean McFarlane was treating people with CFS as she was in Brisbane Queensland, Australia I went to see her. She was my first piece of help. In Jeans waiting room it was incredible to me that all the patients wating approx 15 we all had the same symptoms and all from different walks of life, teachers, solicitors etc. Dr Jean McFarlane was after a number of years of treating the CFS she was struck off as a Dr as they said it was for doing too many tests. Thank you Dr McFarland for your help and I am so sorry about the cost to you. I then started seeing a Dr who was a naturapath as well and he was helpful as he had CFS as well. He only worked a couple of days a week. I followed him to different surgeries as he would be not allowed to see his CFS patients after a while at some of the practices he would move on and I would find him agin. I had a period of I would call complete wellness in 2000 to 2003 and man was that great. Out and about working, going out laughing etc. Then I got my encogeness depression back and was severely depressed intil approx 2010 I had been gradually getting better from the depression and by mic 210 I was back to being not depressed. I felt great and started to get out moore and do moore life was good and no CFS either but gradually the CFS has come back not the depression. I guess theCFS is back because I do so much moore because I feel well maybe 30% of what a normal 59 year old does. but the CFS is getting worse. I would like to tell you about my list of diseases but first I will tell you that I hospitalised with endogenous depression in 1985 for 6 weeks in a public hospital. It took a long time to get really well but after approx 12 months I returned to work. The depression tiredness is nothing like the chronic fatigue tiredness they are very different and it is so sad that people are told that ME is CFS and even sader that it is some type of depression. I did the CBT course approx 5 years ago and that was the most helpful thing that I have done for my depression. I dont see how it could help chronic fatigue or ME, how sad that is.I would like to tell you about my list of diagnosed diseases starting from the latest PANCREATITIS WITH SCARRING TO THE PANCREASE. OSTEOARTHRITIS, HIGHT BLOOD PRESSURE, SEVERE SLEEP APNEA, UNABLE TO STAY AWAKE SIMILAR TO NARCOLEPSY BUT DOES NOT SHOW NARCOLEPSY ON SLEEP STUDIES, BUT I TAKE 10 dexamphetamines per day and that works for 12 hrs. DIABETES TYPE 2, HIGH CHOLESTERAL, DEPRESSION, ASTHMA,. ALERGIES TO SOME MEDICATIONS FOODS ETC. HYSPERECTOMY FOR FIBROIDS, MULTIPLE BROCKER BONES IN CAR ACCIDENT 3 YEARS AGO..I am hoping that there is something that can be done for ME. I though I read that pancreatitis comes to some ME sufferers. does anyone know if this is correct. I have 4 siblings, l has food alergies, l has diabetes, l has high cholesteral and the other is fine. I hope something comes in my lifetime to help ME and even if not to help maybe just so that you can say ME and the community give you all the support etc you would get with a car accident or cancer or any other legitimate illness or as the comunity sees it legitimate
Burns, Brisbane, Queensland Australia
Hi I got ME in late 1981 0r early 1982. Of course I was not told that I had ME. My GP sent me to see a physician which I think you call an internist in America and this physician said that he thought that I had Lupus. I did have a red rash on my cheeks and other symptoms which would fill a page but I guess at the time the one that stood out besides my sore musches, bones and terrible head ache was my fingers were swollen and I could not mke a fist and I was unable to move my wrists so that the palm of the hands could be seen and that pain in my wrists and little finger was unbelievale. The test came back negative. I continued to feel so sick that eventually my GP sent me to another physician who thought the same thing SLE or lupus but not the test was negative so I was told by the GB that I was well and continued to be told this on ceveral moore visits even though I told the Dr how sick I felt and could hardly walk into his surgery and difficult talking and also fell asleep in his waiting room. In approx 1984 I hears that Dr Jean McFarlane was treating people with CFS as she was in Brisbane Queensland, Australia I went to see her. She was my first piece of help. In Jeans waiting room it was incredible to me that all the patients wating approx 15 we all had the same symptoms and all from different walks of life, teachers, solicitors etc. Dr Jean McFarlane was after a number of years of treating the CFS she was struck off as a Dr as they said it was for doing too many tests. Thank you Dr McFarland for your help and I am so sorry about the cost to you. I then started seeing a Dr who was a naturapath as well and he was helpful as he had CFS as well. He only worked a couple of days a week. I followed him to different surgeries as he would be not allowed to see his CFS patients after a while at some of the practices he would move on and I would find him agin. I had a period of I would call complete wellness in 2000 to 2003 and man was that great. Out and about working, going out laughing etc. Then I got my encogeness depression back and was severely depressed intil approx 2010 I had been gradually getting better from the depression and by mic 210 I was back to being not depressed. I felt great and started to get out moore and do moore life was good and no CFS either but gradually the CFS has come back not the depression. I guess theCFS is back because I do so much moore because I feel well maybe 30% of what a normal 59 year old does. but the CFS is getting worse. I would like to tell you about my list of diseases but first I will tell you that I hospitalised with endogenous depression in 1985 for 6 weeks in a public hospital. It took a long time to get really well but after approx 12 months I returned to work. The depression tiredness is nothing like the chronic fatigue tiredness they are very different and it is so sad that people are told that ME is CFS and even sader that it is some type of depression. I did the CBT course approx 5 years ago and that was the most helpful thing that I have done for my depression. I dont see how it could help chronic fatigue or ME, how sad that is.I would like to tell you about my list of diagnosed diseases starting from the latest PANCREATITIS WITH SCARRING TO THE PANCREASE. OSTEOARTHRITIS, HIGHT BLOOD PRESSURE, SEVERE SLEEP APNEA, UNABLE TO STAY AWAKE SIMILAR TO NARCOLEPSY BUT DOES NOT SHOW NARCOLEPSY ON SLEEP STUDIES, BUT I TAKE 10 dexamphetamines per day and that works for 12 hrs. DIABETES TYPE 2, HIGH CHOLESTERAL, DEPRESSION, ASTHMA,. ALERGIES TO SOME MEDICATIONS FOODS ETC. HYSPERECTOMY FOR FIBROIDS, MULTIPLE BROCKER BONES IN CAR ACCIDENT 3 YEARS AGO..I am hoping that there is something that can be done for ME. I though I read that pancreatitis comes to some ME sufferers. does anyone know if this is correct. I have 4 siblings, l has food alergies, l has diabetes, l has high cholesteral and the other is fine. I hope something comes in my lifetime to help ME and even if not to help maybe just so that you can say ME and the community give you all the support etc you would get with a car accident or cancer or any other legitimate illness or as the comunity sees it legitimate
Burns, Brisbane, Queensland Australia
i am a 49 year old woman from Ireland who was diagnosed over a year ago .I am very grateful to you for high lighting this awful illness .I will be attending a conference in Belfast on 22nd May at which Annette Whittemore will be telling me and other sufferes about the research into the XRMV virus .hopefully the british and irish health establishments will take note /