What's in a name? A great deal, if you suffer from one of the most awful long-term diseases that is widespread: chronic fatigue syndrome.
That name infuriates the patients, maybe 1 million in the United States and 17 million worldwide. It also infuriates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.
The Centers for Disease Control (CDC) in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (M.E.) is still in use in Europe and elsewhere, and is favored by patients.
The new name fast became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.
Part of the misleading, as Jason and numerous other medical professionals have claimed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This, it is alleged, obscures the central unsolved mystery of CFC and its AIDS-like misery. And it hugely diverts government funding away from serious biomedical research. Jason and his colleagues believe that the most promising lines of investigation — pathogens, including a retrovirus called XMRV — are being under-researched in the process.
Although it has been around for centuries, and variously labeled, the modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough — nearly 300 — to worry public-health officials.
Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no treatment and no clue as to the path of the contagion: Was it airborne or food-borne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?
None of those questions have been answered. What is known is that the disease appears in clusters and, more often, in isolated cases. It has spread in families, making it frightening; but the spread is occasional, not automatic.
The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public-health authorities.
The CDC sent two young epidemiologists to investigate the outbreak—Gary Holmes and Jon Kaplan. They estimated sufferers at perhaps 20,000 throughout the United States, a majority women of whom were women.
In the same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of fewer than 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, becoming somewhat of a Nelson Mandela in the field.
Over the years, the disease kept on popping up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Dr. Anthony Komaroff published a report about increasingly significant numbers in his Boston practice — the first evidence of what is now a quarter century of his CFS research. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.
The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.
Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 that there were about 1 million sufferers in the United States.
They also found that the disease was caused by an unknown pathogen but was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.
For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.
According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission — sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, it is full onset: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches — often years, sometimes decades — of almost total helplessness. It is goodbye to the life you have known; to work, to hobbies, to lovers and spouses, to everything short of hope.
Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends — some from her days at Harvard, a few from childhood, a handful from work — sustain her with telephone calls, when she can answer the phone, and some come by. Nonetheless, the brutal loneliness is always there.
Waroff was first felled at the end of July 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.
Gradually, with help from a caring doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms — more mixed-up speech, stumbles and almost falls, dizziness, rising fevers. Afterward, she would be immobilized for days.
Then things got worse.
In September 2003, Waroff woke up to find that she was too weak to fill out a simple form — just to renew library books – and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”
CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (like HHV-6 and Epstein-Barr), swelling of the lymph nodes, muscle ache and other pain, dysphasia (the inability to use the right words) and general cognitive failure, nausea and faintness.
Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way though life.
When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists — that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the well-reviewed and sweet book, “The Sound of a Wild Snail Eating.”
The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, “Seabiscuit: An American Legend” and “Unbroken: A World War II Story of Survival.”
Hillenbrand's achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.
Statistically two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering, being lazy and not wanting to work. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.
Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had.
The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.
The medical establishment has been cool to WPI; and NIH turned down all six research grant applications it made last year. But 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call M.E./CFS in deference to the older, less trivializing name.
While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”
Squabbling Experts, Suffering Patients
As with other investigative science, the search for a cure for chronic fatigue syndrome (CFS) is riddled with controversy, accusations and suspicion. The patient community believes, with seeming unanimity, that the medical institutions have failed them globally – namely America’s Centers for Disease Control (CDC) and the National Institutes of Health (NIH) and Britain’s National Health Service (NHS) They argue that the CDC discredited the disease, following the first big U.S. outbreak by giving it a misleading new name, chronic fatigue syndrome, and then shirking on research.
Among the alleged perfidy, the CDC first under-counted the number of U.S. sufferers at 20,000 and then over-counted them at 4 million. The count is crucial because when it was too low, resources were starved. And once it was set too high, test results became skewed because the CDC was including legions of clinically depressed people and others with psychological ailments, probably none of whom had CFS.
Nowhere is the counting more important than trying to establish whether it is the retrovirus XMRV that is the guilty pathogen in CFS. If the count is wrong and the patient cohort include people who have been misdiagnosed, the studies become a nonsense.
That is partially the case in Britain, where the NHS has been predisposed to treat CFS as a psychological disease and to dismiss studies which find XMRV in patients as contaminated, in particular by mouse DNA, which is present in the air of many laboratories that use mice in tests.
But the privately funded Whittemore Peterson Institute (WPI) in Reno, Nev. claims that they have never used mice and have guarded carefully against this possibility. Among the numerous test methods they used to thwart contamination, they hunted down antibodies to XMRV in patient blood, which cannot possibly have any connection to contamination. As WPI president Annette Whittemore points out, the real lab work includes finding genuine patients and extracting the elusive markers such as XMRV antibodies, making the work conclusive.
A recent article in the distinguished British medical journal, The Lancet, advocated cognitive therapy for CFS, such as improved diet and regular, paced exercise. The Internet lit up with denunciation. The consensus was that this was therapy for people who suffered from depression, not CFS.
The bottom line: This kind of commonsense therapy may help some, says Dr. David Bell, who has had more hands-on experience with CFS patients than any other medical professional, but it is not a cure or a breakthrough. What little is known is that different therapies work temporarily for different people: Deborah Waroff in New York has had some relief with ozone blood therapy; others, like Andrea Whittemore Goad in Reno, with Ampligen, an experimental drug; and still others with various immune-system boosters.
Those and other issues were debated at a NIH-sponsored conference, entitled “State of the Science,” on April 7-8. — Llewellyn King
This article was previously published by RealClearPolitics.
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Thank you for your thoughtful coverage of this horrible disease.
Your most recent article, http://www.realclearscience.
I am 33 years old. I have ME/CFS and Lyme disease. Prior to falling ill, I had recently earned my MBA from Johns Hopkins University, run the Marine Corp marathon in DC and been promoted to a Director level position at Visa Inc – moving me to San Francisco. I was living the life and thriving, until it all abruptly stopped. One day the room started to spin. I couldn't stand up and soon all I could do was sleep. I eventually would learn that was my first experience of ME/CFS.
I've been one of the lucky ones. I wasn't struck until I was 30. I got to enjoy college, traveling through Europe, grad school. So many like Andrea Whittemore never had that. I also have disability benefits, having worked for a fortune 500 company. I'm one of the few that can go to specialists and try different treatments on a whim. In less than 2 weeks I'll fly to Salt Lake City to seek acceptance into a cost recovery trial(which means you won't get the placebo, but you pay all drug and research costs out of pocket) for Ampligen. This drug has been known to help some. It will require a move to Utah for infusions every Tuesday and Friday for at least a year. I figure at this point there's nothing left to lose but what's left of my 401k 🙂 And so it will go with me to Salt Lake.
To have someone of your caliber and reach listen to us, well it just means the world. Thank you for your continued compassion and coverage of our plight. — Ann Cavanagh
I cannot tell you what it means to have you support us sufferers from
ME. I've had it since I was six & it's been used to great advantage
against me by an unscrupulous sister, which makes it even more
difficult. Our father, who really was a rocket scientist had a hard
time understanding why I was so "unreliable". The capriciousness of
my brain in all sorts of ways but especially the memory losses & the
word finding difficulties were utterly foreign to him, as of course
was my ability to do simple arithmetic. In 2005 he started into
dementia. Though my sister had health care proxy, I kept pestering
them both to attend to the dementia, get aricept as soon as possible,
get a good neurologist, and stop drinking. You really have to value
every synapse.. I'm lucky enough to have spent a great deal of time
with him, and he soon understood that I really knew what it was like
not to be able to trust your brain. I came from a highly academic
family; I'm nearly 60 & both my grandmothers went to fine colleges,
parents, ivy league & seven sisters. Sister went to Smith, I muddled
my way through Wellesley. When it came time for me to do my calculus
exam I found the only thing I could do was to write an essay exam; I
couldn't work out the math, but had a clear understanding of the
theory. It rather threw my professor.
But I've managed to cram a lot of fun in my earlier days; lived in
England for 8 years & sailed across the Atlantic on a 36' boat;
learned how to restore oil paintings the British way while American
restorers were doing terrible things to paintings. Came back to the US
having forgotten "American English", learned it all over again & was
the sole painting conservator to the Peabody Essex Museum, with
private clients from Paris to Hawaii. All the while I was very
familiar with my doctors. Finally I got a terrific case of pneumonia
in '92 & then finally quit work in '94.
My relationship with Dad became very sweet, he responded well to my
trying to keep him interested, throwing the odd challenge out for him,
introducing him to skype (!) and generally keeping focus on what he
still could do rather than what he couldn't do…so we had a very good
time. His last 7 years were a blessing to me, a tragedy for my sister.
Enough of a ramble! WE've long been looking for a healthy champion
for our cause, in the way that Elizabeth Taylor was for AIDS. I don't
know if it's something you would take on, or if you know anyone who
would like to. The CFIDS Association has been troubling to me,
squandering too many opportunities to have me trust them. Hardly
alone in this view, there is even a petition going around opposed to
that group. The WPI has been like a beacon of hope for so many of
us. Hoping that Dr Mikovitz doesn't get destroyed as Elaine De
Freitas was..
So thank you again for your support, it means the world to me. — Jean Harrison
Thank you very much for your continued work to raise awareness about ME/CFS.
I have 2 children, both male, and both have severe ME/CFS. The younger has been sick for over 6 of his 18 years. The older one has been sick for over 5 of his 20 years.
You have heard from many people about how this illness changes lives and I can't add anything new (other than personal details) to what you have heard.
We very much appreciate your work and you. — Denise, Alexander and Matthew Lopez-Majano
I'd just like to thank you for the article you wrote on CFS which appeared on Real Clear Science on June 2nd.
Thank you for continueing to cover the plight of ME and CFS suffers. My whole family has ME as a result of an outbreak in our family. Please consider interviewing someone from the Whittermore Peterson Institute in Reno NV. as they are at the forefront of discovery of this disease.
I’d just like to thank you for the article you wrote on CFS which appeared on Real Clear Science on June 2nd.
It it beautifully written and makes the current situation with regard to CFS very easy to understand.
My fiancé has suffered from this condition for 14 years now. He has been unable to work for the last 12 years and spends each day of his life in the living room simply struggling to endure the slowly passing hours.
We need people like you to draw attention to CFS sufferers’ plight, you say what is needed to be told in far better words than most can manage. — Jennifer Graham
Superb article. One of the best so far, ever.
I hope you keep at it, and I hope that you will talk more
about the many deaths.
I and many others are really glad you are with us. You are
a real journalist. A rare breed.
I would like to link to your article from my blog, The Kafka
Pandemic (http://thekafkapandemic.
— Samuel Wales
Thank you so much for writing on this subject; you've captured the history as well as the nature of living with this disease. I particularly appreciated your phrase "cognitive failure" as all the other ways I and others have used to describe the cognitive problems (poor concentration; memory problems, brain fog, etc.) have never captured what it's like, what the experience is.
thank you, thank you, thank you, thank you….1000 thank yous.
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.
Martin Luther King, Jr.
"To save one person is to save a whole world."….old jewish proverb.
with deep appreciation, lisa
Thank you very very much for continuing to raise awareness of ME/CFS, we desperately need the level of suffering and neglect to become public knowledge and not just known to those who suffer and are too sick to take to the streets and demand change. Your efforts are greatly appreciated.
The "horrible disease" is most likely ME. CFS is a fatigue syndrome. ME is not a fatigue syndrome; thus should not be called or diagnosed as CFS. As the article states correctly, CFS may include those with depression or mental problems or other conditions other than ME; thus ME and CFS are not the same. ME/CFS incorrectly gives the impression they are interchangeable. Royal Free epidemic was ME, not CFS.
Misinformation from patient groups/advocates abound. There is no such thing as ME/CFS. If patients hate the name and all the stigma, ME/CFS doesn't help (the purpose of a name change has always been to get rid of the demeaning, discriminatory name CFS, which this does not do). This is not a "name change," only combining 2 disparate entities which is still used with different meanings (then there's CFS/ME, which again has its own connotations and it all devolves into undecipherable gibberish). Then we wonder why people do not get it or get it wrong?
Beyond the name, patients need an appropriate and accurate diagnosis. ME/CFS is not an actual diagnosis.There is no ICD code for ME/CFS. It just another made up construct that can mean different things and will do nothing to clarify and will only add to the confusion.
It is not true that patients prefer ME/CFS. Patients generally do not want ME/CFS: the ME petition has 9000 signatures and calls for just the opposite, and a recent Globe poll showed that only 23% wanted CFS or ME/CFS; 76% wanted other.
Please get facts straight. A true history and explanations based on fact rather than opinion would be helpful.
Thank you for this great article. So well done, so honest and compassionate.
I have been ill with ME/CFS since 1977, when I was ambushed with the worst flu of my life at the age of 20. Prior to my collapse I was an athletic, energetic college student, who skied, backpacked, and swam a mile each day. After my collapse I was a bedridden shell of an almost human. SInce then, I have been on a roller coaster of remissions and relapses for 3 decades. I have had some good years, but far too many really bad years. One Way Ticket To Hell says it all. And as you know, I am one of at least a million who are suffering with this dreadful disease.
Please keep up the good work. We so badly need folks like you to bring the truth about ME/CFS out of the shadows, and into full blown recognition, so that we can get the long-overdue funding into research that we deserve.
Thank you for covering our story. My diagnosis is fibrmyalgia and I am XMRV +. Seven out of eight of my family members have neurodegenerative diseases and cancer. XMRV is a potential cancer and neurodegenerative/immune causing retrovirus. The illnesses in my immediate family members include parkinsons, MS, Graves disease, breast cancer, 2 cases fibromyalgia (CFS is usually not diagnosed in my state), and 1 death from leukemia. Only one family member has not been affected yet. There is no genetic or hereditary factors in my family history for any of these illnesses. Again thank you so much!
Once again Mr King: THANKYOU! As a sufferer for a tad over 40 years (from age 10) I long to start living. In the UK I have zero care for this illness. Attempts at intervention over here (because of the prevailing psychsocial paradigm) have caused substantial iatrogenic harm to me. We have good people in the UK working on this disease but they are being strangled by the Wessely School and their puppet masters in Government and the private insurance companies…so we look to the US for this shift in emphasis. You really are beginning to make inroads in terms of getting the seriousness of this malady to the masses. Your press has not been deliberately restricted in terms of what it can write about this illness and so the word is beginning to get 'out there'. Thankyou for being a part of that!
Thanks for recognising and reporting the desperate situation we are in Llewellyn. Clarity like yours helps to refute the ignorance which has long been the bane of human existence and in the long run helps everyone come to terms with this serious disease which can affect anyone. We can't solve it alone but we must solve it for everyone's sake.
Thank you so much for this article, it's great to see that you understand.
And yes, CFS/ME also kills. Slowly and horribly. I know; my wife Annabel died of it. Officially. Stated as a cause of death by the coroner. And there are more well-documented deaths since. And yet the psychiatric lobby still claims that it knows better. Indeed, whilst government continues to fund these people, the shrinks will continue to occupy the perceived high moral ground, and we will be blocked from a proper non-psychological, scinetific, diagnosis. After 8 years – she died in 2003 – I am still encountering such disbelief.
Yours in anguish
Richard Senior
Thank you so much for understanding how all this crazyness affects people with ME and related illnesses
What a fantastic article. It's rare indeed for a journalist to understand the full impact of this condition. I'm 55 and have had ME (as I prefer to call it) since I was 20. All my adult life. No career, no family.
I'm coming round to thinking that there is, at least, a hormonal/endocrine system element to ME. As I have no medical training I can't say exactly what I think it is.
Thank you so very much for your excellent article and I know I speak for many ME sufferers in UK and am sure elsewhere too!
I had to take medical retirement from a very fulfilling lecturing job with ME) and have been unable to sit up in a wheelchair since 1997 but at least I had had a wealth of experiences before ME unlike youngsters who miss out on so much. It has been so frustrating to see so much funding go to psychiatrists and not to biomedical research.
Thank you Barry, you have said everything I wanted to say. I am also a male M.E. sufferer in the U.K. I wish we had someone on this side of the pond of the caliber of yourself Llewellyn, someone who also "gets it".
There is so much disinformation and negative statements to our media by the Science Media Centre with Simon Wesseley pulling the strings. It's all smoke and mirrors in an organised attempt to bury ANY good news because hey, reputations are at stake, not to mention the personal malice and venom displayed by the psychiatric school..
Many, many thanks from everyone over here and please, please; now you have picked up the baton, continue to run with it. We need you!
Many thanks for all that you are doing for patients. It is very much appreciated.
And if you 'get it', Llewellyn, why don't others ? Is it because they aren't bright enough, or empathetic or compassionate enough ? Or perhaps they just don't care because the illness doesn't affect them directly and so has no reality for them outside of the mythology created by the mainstream media. Where does the public indifference and, sometimes, hatred for people with this illness come from ? How do people justify such cruelty ? Have they no shame ?
Personally, I am not only sick and tired of being sick and tired, but also fed up to the back teeth with the disbelief of others, whether it comes from the medical profession, the scientific community, Governments or, worst of all, friends and family. All patients know the look that says ‘there’s nothing really wrong with you, is there ?’ or can recall overhearing a comment that implies you’ve taken on ME as a ‘lifestyle choice’. Ha ! Some choice.
How many previously happy families have been broken into pieces by this illness ? How many marriages ended, children lost from parents (sometimes into care), siblings alienated, parents estranged ? Do people really choose this ?
How many careers have been wrecked, A-grade students consigned to the academic dustbin and outstanding athletes forced into wheel chairs ? Do people really choose this too ?
And how about those who have died from ME ? Annabel Senior and Sophia Mirza were the first two UK patients to have the illness recorded as cause of death. Others, like Lynn Gilderdale and Annette Upton, took their lives because they could not stand the pain, hopelessness and cruelty any longer. Did these people choose to have ME too ?
One of the outcomes of the systemic marginalisation of this illness is that no significant research into its cause has been carried out in over 25 years. In the UK, for example, from 2000 to 2010, none of the taxpayers’ funds allocated to ME research was spent on aetiology (the average share of spend on aetiology across all diseases is 68%). Instead, 80% of ME funds were spent on testing psychiatric therapies.
This is not just indefensible on moral grounds but also on economic grounds. It leads to a self-fulfilling prophecy of continued sickness that creates an unacceptable financial burden on the healthy.
And then the Whittemore Peterson Institute enters the fray and starts the ball rolling in a way that no other Government department or patient advocacy organisation has ever done before. They begin (not end, note) by isolating a human gammaretrovirus in the blood of ME patients. The science is strong (and I say this from having read the seminal HGRV papers and not just stringing together a few media headlines) and suggests a way in which all previous false dawns (e.g. EBV, CMV, HHV6, parvoviruses, enteroviruses, etc., etc.) could be linked. You’d think people would be over the moon with, finally, some new thinking on the illness. But no. Perhaps because HGRVs’ profile has been built on the ME ‘ticket’, perhaps for other reasons, this research too is being marginalised and buried. Instead of attracting impartial scientific interest, it is eliciting the same ignorance and arrogance, callousness and cruelty from those who, allegedly, have appointed themselves as right-minded protectors of public health and alleviators of human suffering.
I wouldn’t wish this illness on my worst enemy but, if it so happens that those who denigrate the condition, verbally crucify those who suffer with it and bury HGRV (and associated) research with glee and relish, happen to be touched by it at some point, I will shed no tears. Perhaps the human condition has become so degraded that only by experiencing disease and pain personally can most people even believe it exists, let alone demonstrate the humility needed to fight for a cure with the rest of us.
thank you so much for this article! i will be sharing and asking others to read it
Congratulations! This is the first article in the media that has no mistakes and tells it how it really is! I thought I'd never see such accurate and compassionate coverage in my lifetime.
I have been sick with ME/CFS for 29 years and totally disabled by it for 23 years. As you have written, there are treatments that work for those who have the money. Most patients are so impoverished by this disease before they find out what those treatments are, that once they know their options, they no longer have the money, nor the insurance coverage, to buy them.
There are hundreds of stories you could tell the public to help them catch up to the reality that the CDC has tried to obscure for decades. I hope you will continue to write about this disease and begin to bring the positive developments into public consciousness. At this moment, the agents of disinformation have mounted a successful campaign to flood the media, especially that part that purports to educate physicians, that the Human Gamma Retroviruses (HGRV) that WPI found are either lab contaminants, not human pathogens, or were created in the lab in the 1980's. The facts do not support any of those theories, but the facts are getting lost in this media blitz.
Dr. Jason was a great place to start interviewing the knowledgeable. I suggest Dr. Jamie Deckoff-Jones, Dr. Michael Snyderman and Dr Montoya of Stanford for future interviewees.
Again, thank you so much for the accuracy we have been craving for so long.
Thank you for this article…. we soooooo need people like you to speak the truth out into the world, so they HEAR OUR VOICES TOO!!!!
when my husband and I first met we were both very fit and active, impulsive, intelligent, forward thinking young people. We married at 21 and are still wonderfully in love now. But we experience immense suffering, disability, financial hardship and discrimination ever since we both developed M.E. within a year of each other!! That was 13 years ago! We didnt do anything wrong… just suddenly became sick, but we are treated like scum by people in the medical profession and the benefits agency. We WANT to go back to work, but the UK wont do any REAL research…. if they wont help to cure us we can only continue to be drain on the governments resources.
TO Ann Cavanagh: TREATMENT WITH AMPLIGEN IS NOW AVAILABLE IN THE BAY AREA! So perhaps you don't have to move to Utah. Unfortunately the site with the information is down right now. I would check with Dr. Andreas Kogelnik in Mountain View or Dr. Jose Montoya's office at Standford to get more information. Phoenix Rising's site is down right now for maintenance, but in a few days you may be able to get info from them. Dr. Kogelnik is probably your best bet. His email is Open Medicine Clinic <clinic@openmedicineinstitute.org>. Hope this helps and you don't have to move. "Celebrating" 25 years with CFS this summer… Best of luck to you. Love, Esther
Thank you for writing such a well informed article which is so spot on.
Thank you so much, you give so many very sick people a voice, we need help to fight this illness, thank you from a bedbound in the UK x
Thank you on behalf of my beautiful 15 year old daughter, 4 years with ME now; ignored by doctors here in the UK but our family remains full of hope for the WPI and the many other gifted doctors and scientists in the US and Europe who are really trying hard to find a cure for this wretched disease. Please keep writing on our behalf, this is a real illness that so few people believe is real and we need your profile and your help very, very badly. Thanks again.
This is a fantastic article. Well done!
Though I do suggest you proof read it again, as there are quite a few typos (I'm guessing) in there. "obscures the central unsolved mystery of CFC and its AIDS-like misery." Is CFC supposed to be CFS or am I missing something? "a majority women of whom were women." is another. So yeah, I'd check over it again, haha.
Anyway, with that being said, it is still an awesome article, and I thank you VERY much for this!
I would describe the initial phase, and several after that, as something so severe, I can't believe I didn't die. I think we rarely talk about it because it sounds both melodramatic and unbelievable. To be bedridden, unable to walk or even move at time, and be in excruciating pain 24 hours a day for months on end hardly sounds like an illness about 'fatigue'.
This is not a sexy illness and because of the incongruity -name vs severity- very little research is done. Those who would lend a valuable voice are unwilling to talk about things publicly for fear of being labeled depressed or simply lazy.
Just curious- Why is so much information from the original article missing from this one? To anyone who read this, go read the original article: http://www.realclearscience.com/articles/2011/06/02/chronic_fatigue_syndrome_is_misunderstood_106242.html There are paragraphs missing that shouldn't be (and the typos in this one are nonexistent).
Thank you Mr. King again for a thorough clear report on the history and abuse of patients whore a misunderstood by society. It is articles like yours who will hopefully turn the tide and open people's minds to what this illness is! The truth shall prevail.
Kaplan and Holmes were looking for evidence that confirmed their working hypothesis of "CEBV Syndrome" when they came to Incline Village. When they didn't find it, they left, saying they saw no evidence of an epidemic. . They said this situation was probably due to an inadvertant collusion between wealthy and eccentric hypochondriacs who had converged on a couple of doctors who proved they were amenable to validation of unsubstantiated patient complaints.
So they didn't estimate the Tahoe illness at any numbers of people at that point… for they disputed that the illness even existed.
It cannot be repeated often enough how refreshing it is to read real pieces of journalism on the very serious subject of ME aka CFS – a major public health issue that will not just go away, however much our government officials wish it to, and which cannot be swept under the carpet for much longer. It is no exaggeration to say that what has happened to these patients over the past 25 years or so is nothing short of a crime against humanity. The medical, social and political ignorance and neglect has amounted to many abuses of human rights within the borders of our own so-called 1st world countries. However, all they want is the approriate treatment for their disease – that is not so very much to ask. Thank you so much for reporting on this complex subject in such a lucid, frank, honest and accessible way.
So, very, very grateful for the intelligent and sensitive way you have dealt with this subject. Too few journalists take the time to really research it and the result is a travesty. My heart breaks every time I read an article for they are so blinkered to the suffering. The continued distortion of the facts by the media adds to our burden and ensures the cure remains just out of reach.
Wonderful overview of this terrible "life stealing" illness. My 35 year old daughter became very ill at age 13 and has suffered from this illness since then. After the first few years of very serious bedridden illness, she was able to excape to the South of France to paint. Slowly she was restored to 50% functioning level, She came back to the US finished University, got her Masters and began teaching and writing a Phd dissertation. Then she crumbled again. Her Cognitive was wiped out and she has been struggling for the past few years to regain some degree of functioning. At present she can spend 3-4 hours each day up and around, the rest is spent lying down. CFS needs more research and more support. Good Luck to everyone with this illness and thank you to all those caring family members who help and support their loved ones with this illness. Kathy Browning Ohio USA
I have a friend who is convinced she suffers from ME, although most of the doctors she's been to ( in Europe where she lives) disagree, and have diagnosed her with depression. She underwent costly XMRV testing, which included sending her blood sample overseas and getting it tested by a lab that specializes in such tests. She did not test positive for the virus.
I'm sure that you're aware that the link between the XMRV virus and what has been called ME or CFS is now very much contested and that Science Magazine has recently published an "editorial expression of concern" stating "that the association between XMRV and CFS likely reflects contamination of laboratories and research agents with the virus".
It's not the first time a virus has been associated with this condition. as the Epstein Barr virus was once thought to be the cause of CFS or at least connected with it somehow. I'm afraid this latest virus is going to be a false clue as well. If you're reporting on this, however informally, I think you owe it to your audience to report both sides and not just what desperate patients want to hear the most.
It hasn't been completely ruled out that ME might be partly or in whole a psychological condition, and it is a profound misunderstanding a psychological disorder is somehow more imaginary than a psychical condition, or that is not an "actual medical condition" like an infection caused by a virus. The more time and effort is spent on false trails, the less likely it is that a real cure will be found.
There's a good article about this controversy here, with plenty of links to scientific sources: http://blogs.discovermagazine.com/loom/2011/05/31/the-chronic-fatigue-virus-de-discovered/
I too, thank you for your interest and championing our pliglight with this "life/energy sucking" disease. I am 57 as of next month and I have had this disease since I was 27. Thinking I had a terrible form of flu that brought on the birth of my daughter a month early; is what I believe was my first manifestation of this disease. Thirty years+ years later here I am. Just today, I finally asked a friend to help me with my finances, which I can no longer manage. I was a therapist and when I could not re-call things said in sessions with clients, my Dr. finally suggested I apply for disability. I have been on disability now for 16 years. When my daughter was four, I saw a neurologist and was diagnosed with epedimic neuromyasthenia(1984). he told me then that he had been a researcher that studie this disease, also known as; "Icelandic's disease". It was an epedimic that hit Icelands population and though no one died, they never got better. he also said that there had been an epedimic in Long Beach,CA. during the war in the 1940's and nurses came down with an illness that was then diagnosed as "Polio"; then in the 60's in Florida there was an epedimic initially thought to be MS; but MS did not break out in epedimic and/or clusters. Fast forward to 1993. Having no remittance of illness and what seemed to be a growing constellation of added symptoms I saw Daniel Peterson in Incline Village. He put me through a very intensive battery of tests. When results were complete, he told me I was very ill and had never seen a NK(T?) cell count as low as mine; which was "6". my previous med. records had shown me having an "off the scale" titer level to EBV. Tests have shown that I have white matter lesions. I have always said that the pain— although it has made me feel 90 since the age of 27, I still had my brains! One of the newer symptoms(within the past 2 years)has been POTS with me fainting twice back to back breaking my nose a few weeks ago, and having hardly any recall of the events. WE survivors have been maligned by the arrogance of the AMA and APA for too long. I have downloaded 43 pages of deaths attributable to ME/CFS. I pray that a miracle happens before I die and/or just disappear within the cognitive prison I find myself today.
There are not enough words to express how much I appreciate your shining a light in our dark little corner, because this little corner is getting bigger every year research and clinical trials do not happen.
Shelley
Thank you for covering this misunderstood illness. I have had it over 25 years with a few remissions, though I use the word "remission" loosely, as I never return to the level of functioning pre-CFS. I haven't given up hope and so appreciate those who cover this illness with insight and understanding. I have found that the response of friends and family is as troubling as the disease itself. Unless you have it, you can never fully imagine the toll the fatigue alone takes, a fatigue that is equivalent to that of the most crippling diseases. Many of us were extremely social, active people before this illness. Equally troubling is the lack of medical community support and the suggestion that it is a psychological illness, or at least one with a strong psychological component. I love to socialize and be active -, I would never choose this.
Kaplan and Holmes were looking for evidence that confirmed their working hypothesis of "CEBV Syndrome" when they came to Incline Village. When they didn't find it, they left, saying they saw no evidence of an epidemic. . They said this situation was probably due to an inadvertant collusion between wealthy and eccentric hypochondriacs who had converged on a couple of doctors who proved they were amenable to validation of unsubstantiated patient complaints.
So they didn't estimate the Tahoe illness at any numbers of people at that point… for they disputed that the illness even existed.
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Kaplan and Holmes were looking for evidence that confirmed their working hypothesis of "CEBV Syndrome" when they came to Incline Village. When they didn't find it, they left, saying they saw no evidence of an epidemic. . They said this situation was probably due to an inadvertant collusion between wealthy and eccentric hypochondriacs who had converged on a couple of doctors who proved they were amenable to validation of unsubstantiated patient complaints.
So they didn't estimate the Tahoe illness at any numbers of people at that point… for they disputed that the illness even existed.
And from that day onwards people selectively reshaped their perspective of the illness and these incidents by selectively "disappearing" anything they didn't want to hear..
Dear Mr. King,
Thank you so much for your timely commentary on chronic fatigue syndrome (CFS) also known as myalgic encephalomyelitis. It is appreciated. Without a credible voice like yours, supporting the work of patient advocates our work will remain hard and difficult.
In the U.S, until mainstream America understands and shows compassion toward the plight of individuals with a NeuroEndocrineImmune disease such as ME-CFS, we will remain forgotten and abandoned by the medical community, by government health agencies and by society at- large. But there has been a change in the direction of the wind. We are no longer invisible. We are mobilizing, organizing and pushing forward requiring changes to be made that will bring quality of life for individuals with ME-CFS and with the power of your pen, we can indeed create change.
In Good Health and In Beauty,
Marly C. Silverman, Founder, PANDORA – Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc. – http://www.p-a-n-d-o-r-a-.org and http://www.pandoranet.info
It's so important that we get real facts out there to counteract the impact of the psychologists, so thank you so very much for that. I'm an American lawyer that came down with a bad case of CFS shortly after moving to the Netherlands. I'm so lucky that I have Dutch health insurance instead of trying to deal with this in the US. And very very fortunate that my parents and in-laws are so supportive of me. But even though three out of the four CFS clinics in the Netherlands deal with CFS as a serious physical condition, it is the one psychological CFS clinic that is heard by the government and most doctors. It's quite boggling, as that group's own research explicitly states that their treatment has no impact on physical symptoms, only on the perception of fatigue. Fortunately my doctor is willing to send me to a "real" clinic, even though she firmly believes CFS is psychological. I know it's even worse in the UK, and people back in the US may not be able to access a CFS specialist at all, even if they have health insurance. The world needs to change.
CFS is an "umbrella" term that groups a collection of putative ailments that defy classification. Indeed, the concept of CFS is like the reification of ZERO: a name is given to describe nothing. the number 0 is a placeholder. Accordingly, no cause can be found for a non-existent disease. Those who claim that a cause for the disease has been identified are akin to those who have seen BIGFOOT and similar hoaxes.
I am so grateful that you've written this article. I chronicle my experience with this devastating illness — how it cost me my job as a law professor — in my book, "How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers." People with CFS/ME tell me it's like reading about their own lives for the first time.
I've also written about it in "The Stigma of Chronic Fatigue Syndrome" at my blog for Psychology Today.
Thanks again for helping us raise awareness of this devastating illness.
Toni Bernhard
http://www.howtobesick.com
If anyone wants to know what "Chronic Fatigue Syndrome" really is, there is no great difficulty in doing so. CFS is a syndrome that had to be devised because "more recent studies" in "four groups of patients" brought up fatal flaws in "CEBV Syndrome".
Two high schools, a girls basketball team, and a casino.
Osler's Web by Hillary Johnson tells all about it. You can even find out who to contact, if you want to speak with someone who launched the new syndrome, and find out for yourself how this happened, and what it was like.
http://www.cfids-me.org/holmes1988.html
The 1988 Holmes Definition for CFS
Chronic Fatigue Syndrome: A Working Case Definition
Ann Intern Med. 1988; 108:387-389
The chronic Epstein-Barr virus syndrome, also known as chronic mononucleosis or chronic mononucleosis-like syndrome, is a syndrome of unknown cause that has been the subject of interest in both medical and popular literature, particularly since 1985. As it was described [1-4] in four groups of patients
More recent studies [6, 7] have cast doubt on the diagnostic value of positive Epstein-Barr virus serologic results and on the proposed relationship between Epstein-Barr virus infection and patients who have been diagnosed with the chronic Epstein-Barr virus syndrome.
We, therefore, propose a new name – the chronic fatigue syndrome -that describes the most striking clinical characteristic of the chronic Epstein-Barr virus syndrome without implying a causal relationship with Epstein-Barr virus
This definition is intentionally restrictive, to maximize the chances that research studies will detect significant associations if such associations truly exist. It identifies persons whose illnesses are most compatible with a possibly unique clinical entity
Chronic Fatigue Syndrome: Misnamed, Misdiagnosed, Misunderstood » White House Chronicle