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New research linking chronic fatigue syndrome to retrovirus is released after being held by a journal

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journal and editing toolsThe perplexing condition known as chronic fatigue syndrome (CFS) might be linked to infection with a retrovirus, report the authors of a new paper published this week in Proceedings of the National Academy of Sciences (PNAS). The association is not new, but the researchers reportedly asked the journal to delay publication of their study, which had been accepted in May, after the online publication of conflicting conclusions July 1 in Retrovirology.

The researchers noted that they held the paper, which had already been peer reviewed, to reassess the findings. "My colleagues and I are conducting additional experiments to ensure hat the data are accurate and complete," wrote co-author Harvey Alter of the National Institutes of Health, in an email statement to The New York Times last month. "Our goal is not speed, but scientific accuracy," he wrote.

The journal also stood by the decision. "As a publisher, when authors or their funding agencies request additional time to ensure that work is ready for public release, particularly when there are public health implications, we strive to work closely with them to promptly address their concerns," wrote the journal’s editor in chief, Randy Schekman, in an editorial in the same forthcoming issue of PNAS. But the delay proved too long for many, causing a small uproar from patients, advocates and others, leaving Schekman, "inundated by emails from people with chronic fatigue syndrome begging us to release the paper," he told the Times in July.

The syndrome has been difficult to diagnose. Physicians often choose it as a label for a collection of symptoms (including tiredness, headaches and immune system abnormalities) that cannot be readily attributed to any other disease. Researchers estimate some 17 million people globally have CFS.

The retrovirus group in question, murine leukemia virus- (MLV) related viruses, includes xenotropic murine leukemia virus–related virus (XMRV), which has also been linked to prostate cancer.

The retrovirus became implicated in CFS in a paper published in October 2009 in Science. The authors, led by Vincent Lombardi of the Whittemore Peterson Institute in Reno, NV, found that some 67 percent of people with the syndrome seemed to harbor XMRV, as compared with 3.7 percent of healthy volunteers who did.

The new work in PNAS produced similar results. Alter, study leader Shyh-Ching Lo of the Food and Drug Administration’s Tissue Microbiology Laboratory,  and  their colleagues tested blood samples from 37 patients with CFS and 44 healthy volunteers ands found genetic traces of an MLV-like virus in more than three quarters of the CFS patients (86.5 percent) and only three of the volunteers (6.8 percent).

But the new findings will not likely be the final word in the debate. Four recent studies—including the one published last month in Retrovirology—came up empty handed when searching for a correlation between CFS and XMRV or genetic markers of a similar retrovirus.

Scientists and patients might not have a definitive answer about the prevalence of retroviruses in CFS patients until researchers can show "the integration of the viral genes into the human genome," Lo’s team wrote in its study. The group noted that the contradictory evidence coming out of labs might be  the result of geographic or patient recruitment differences. Other researchers, however, think that a geographical explanation would be "baffling," as noted by a group, led by Valerie Courgnaud, of the Institutde Génétique Moléculaire de Montpellier, Centre National de la Recherche Scientifiue in France, in a commentary published in the same issue of PNAS.

And as Lo’s team explained in its study, even if more research confirms a higher rate of retroviral infection in people with CFS, that will not mean MLV-related viruses cause the syndrome. The correlation "could reflect an increased susceptibility to viral infections due to an underlying CSF-related immune dysfunction, rather than a primary role for these viruses n the pathogenesis of CFS," the researchers noted in the paper.

In fact, it might take a new treatment to clarify the role of these retroviruses in CFS. And some researchers think the time is right to start looking into drugs that fight against retroviruses, known as reverse-transcriptase inhibitors (as have been investigated to address XMRV in prostate cancer). "Studies to establish proof of principle are justified to determine whether safe antiviral regimens can impact on CFS and to determine whether xenotropic or polytropic MLV is causally associated with this debilitating disease," concluded Courgnaud and her colleagues.

Image courtesy of iStockphoto/netris





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  1. 1. singer 7:22 pm 08/23/2010

    What needs to be made crystal clear is that so far different organizations have been using different clinical or research definitions of CFS. As fatigue alone is the single most common symptom of all illnesses, this symptom by itself cannot point to a specific illness or its cause. There are a number of different definitions still in use, though the most rigorous and most accepted now world wide is the Canadian Consensus Definition for ME-CFS. Neurological symptoms such as memory loss and cognitive dysfunctions, widespread pain, a sleep disorder, and endocrine, autonomic and immune system problems are characteristic along with a specific kind of fatigue called Post Exertional Malaise which lasts for days or weeks after exertion. Contrasting this definition with one focussing largely on fatigue and depressive symptoms, in use by the CDC and in Great Britain where their published studies in the last year have not found XMRV in CFS patients should give you one very plausible idea why–Different patient populations have been tested. The seminal study by the WPI in October, 2009 used patients who fell within the CCD (Canadian Consensus Definition) instead.

    Link to this
  2. 2. JamesDavis 10:09 pm 08/23/2010

    If CFS is caused by a virus, is should be noticed if you flood the body with two or three safe anti-virus supplements like, cayenne and echinacea. These are safe and should not interfere with the results.

    Link to this
  3. 3. singer 10:56 pm 08/23/2010

    The MLV related viruses are retroviruses which become permanent parts of the body’s DNA through their ability to use the RNA (in a reverse process only used by retroviruses) to create DNA which incorporates their genetic information. In other words, there is no cure or way to eliminate retroviruses. The most well known retrovirus is HIV.

    Link to this
  4. 4. gunondeer 11:30 am 08/24/2010

    The bottom line is the strength of the immune system.

    Link to this
  5. 5. gunondeer 11:44 am 08/24/2010

    If the immune system is strong ,yoou would not have these manisfestations.

    Link to this
  6. 6. lamorpa 12:28 pm 08/24/2010

    @JamesDavis, "If CFS is caused by a virus, is should be noticed if you flood the body with two or three safe anti-virus supplements like, cayenne and echinacea. These are safe and should not interfere with the results."

    They certainly safe and would not interfere with results at all, since they are known placebos, at best. No validated blinded study has shown that either one have any effect at all. Echinacea, in particular, has multiple large studies showing is does nothing.

    Efficacy is something that is shown by valid studies, not by popular vote or marketing. Please do not state things as your ‘facts’ when there is no or contrary evidence. It just mixes people up further.

    Link to this
  7. 7. Marc Lévesque 5:13 pm 08/24/2010

    @Katherine Harmon (and @Sciam too)

    I feel this article is very well done

    -Marc

    Link to this
  8. 8. boolybooly 4:35 am 08/25/2010

    "If the immune system is strong ,yoou would not have these manisfestations."

    gunondeer, I used to feel like that before I actually got it. But I realise now it is a bit chicken and egg when viruses have the capability to switch off the immune system, if they do that your defences go down and its open season on humans! Weakness is the effect not the cause.

    It is wise to be careful about possible contagions as a general principle and maintaining immune system strength as a personal choice. But we still dont know this virus is the cause, though as an AIDS type of virus (retrovirus) it is highly suspicious.

    If it is the question becomes whether one has a vulnerability by birth or it is acquired. There is a line of thought that it could be down to a mutation (single-nucleotide polymorphism) in a key gene (RNaseL), on the other hand it might be down to multiple viruses using different complimentary exploits ganging up on individuals or toxicity of some kind. Until we know more who get this illness and who doesnt is a lottery, obviously its imperative we find out more ASAP so we know what is going on.

    2c :)

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  9. 9. gardenerman 1:30 am 08/27/2010

    OMG! In the old days they called it nervous exhaustion, neuraesthenia, battle fatigue! Freud explained it like this: Energy is expended creating symptoms, and more energy is expended combating those symptoms thus leaving the ego impoverished. The so-called "chronic fatigue syndrome" is a mental illness for crying out loud! A euphemism for the lambs!

    Link to this
  10. 10. Jace 4:54 pm 09/1/2010

    OMG! In the old days they called diabetes and multiple sclerosis hysteria, and even longer ago you got leprosy because you were evil.

    Gardenerman, I can tell neither you nor your loved ones have caught myalgic encephalomyelitis. If you had, you would know better.

    Link to this
  11. 11. oregano 7:44 pm 09/1/2010

    They also called polio "hysterical paralysis" until the viral cause was discovered by real scientists, not frauds like Freud and his ignorant followers. Peptic ulcers were "known" to be caused by stress…until the bacterial cause was found.

    As far back as 1984 CFS patients were found to have punctate lesions in their brains, similar to those found in AIDS and Alzheimers. Nobody is foolish enough to think those diseases are "mental". It’s just a matter of time until we find out WHICH virus(es) cause this devastating illness. Will all the idiots who claimed it was "mental" pay reparations for the harm they’ve done over the last 30 years? Or have the decency to apologize and admit they were wrong?

    Link to this
  12. 12. gardenerman 7:57 pm 09/1/2010

    Jace,

    So, there is no such thing as conversion disorder? Is there no mental illness left? Can everything be explained by neurology?

    Here is how cfs is described by the article in question:

    "The syndrome has been difficult to diagnose. Physicians often choose it as a label for a collection of symptoms (including tiredness, headaches and immune system abnormalities) that cannot be readily attributed to any other disease. "

    In other words, there is no neurological or biological test for cfs. It’s diagnosed by ruling out *real* illness. Do a little research on it. You will be amazed by the convoluted evasions from the very idea of mental illness. Then do a little more research to find out what the standard cures are for cfs. I’ll give you a running start: Google CFS in connection to hypnosis, biofeedback, acupuncture and plain old psychotherapy. If it turns out that this stuff works on encephalitis, I will shut up. However, if the same treatments–like biofeedback and hypnosis–that cure cfs do not work on encephalitis, then you get to shut up.

    Link to this
  13. 13. gardenerman 8:36 pm 09/1/2010

    Oregano,
    So, there is a positive test for cfs after all! All we have to do is check for punctate lesions in the brain! Link me to the study please.

    Also, which of Feud’s theories are fraudulent? Which experiment proved him wrong. Link me please.

    The last I checked, Freudian psychoanalysis was still a going concern in America, Europe and South America. American psychoanalytic institutes are crammed. If you aren’t a physician, your chances of getting admitted to a Freudian institute are slim to non existent unless you have a Ph.D. and can show you have made significant contributions to your field of study. Psychiatrists all over the world who wish to practice psychotherapy almost invariably choose psychoanalysis. When is the last time you met a psychiatrist who graduated from an Adlerian institute. Like never? This in spite of the fact that the typical curriculum in a pychoanalytic institute lasts five to twelve years.

    If Freudian theory turns out to be fraudulent, a whole branch of medicine will cease to exist.

    But you know best, as usual.

    Link to this
  14. 14. Three Chord Monty 4:49 pm 09/2/2010

    If CFS is nothing more than what you describe, then I don’t suppose you’d have any trouble accepting a blood transfusion from one of the CFS patients whose blood the NIH found murine leukemia viruses in. After all, if it’s all the head as you, as have many before you (and many still do today) insist, then there can be no physical threat.

    Or blood from the patients in the Science study. Or positives that will be announced at the NIH conference next week. Since it’s not a *real* illness, as you say, you should be just fine.

    Heck, you could be a part of creating a biologic test for CFS based on the markers found in Lombardi and Alter et al.

    Link to this
  15. 15. gardenerman 9:01 pm 09/2/2010

    If the doctors find a physical cause for fatigue it’s NOT cfs. Read the article again. The only way to diagnose it is to rule out real illness. If you are too tired to find the pertinent part, here it is:

    "The syndrome has been difficult to diagnose. Physicians often choose it as a label for a collection of symptoms (including tiredness, headaches and immune system abnormalities) that cannot be readily attributed to any other disease. "

    Link to this
  16. 16. Jace 5:41 am 09/3/2010

    Gardnerman, who knows? Perhaps there is no such thing as conversion disorder. This retrovirus might be implicated in brain malfunctions such as MS, Altzheimers, Bi-Polar, Autism… Or might not. There is a lot of research to do.

    Myalgic Encephalomyelitis has been recognized as an organic disease since at least the 1950′s. Concurrently with the AIDS epidemic, diagnostic criteria were weakened to exclude tests that positively diagnose ME, and the name was changed to the inaccurate and belittling CFS. If you Google Fuduka CFS 1994 you will find one of the least worst of the obfuscating criteria, and you will find in that the specific instruction not to take MRI or SPECT scans, mitochondrial tests, cytokine level tests etc. The only criteria that accurately diagnoses ME/CFS is the Canadian Consensus. 87% of accurately dx’d patients having a retrovirus, with <8% of controls – that’s more than coincidence, surely?

    If I told you that the current CDC criteria diagnoses an order of magnitude more patients with CFS (and in that are included people with ME) than the Canadian Criteria, then perhaps you would begin to see why there is confusion.

    So hidden within the CDC dx of CFS are perhaps 10% of patients with a serious neuro-immune disease. They are invisible to society, because they are often too sick to get out of the house, or even out of bed. They get no real treatment. This is the group (Canadian Consensus Criteria ME) that the WPI studied, and that the NIH/FDA studied. The CDC patient cohort was drawn from a telephone survey, and classified with the CDC criteria 2005. Different thing altogether.

    At last things are changing.

    Link to this
  17. 17. Three Chord Monty 10:59 am 09/3/2010

    I was not "too tired" to read the article.

    Perhaps you are confused.

    The article does not refer to a PNAS paper entitled "Detection of MLV-related virus gene sequences in blood of patients with something other than chronic fatigue syndrome (since a poster in a comments thread says that’s not a real disease) and healthy blood donors."

    Since it does in fact say chronic fatigue syndrome, and you are insistent that it is not a *real* illness, then I don’t see why you would not be willing to receive a blood donation from a patient whose blood was tested for this study.

    Link to this
  18. 18. gardenerman 1:58 pm 09/3/2010

    I could use the same bullshit abstruse polemics on you. For instance, ptsd includes a wide variety of *possible* symptoms, like paralysis, aches and pains, loss of balance, depression, susceptibility to infection, and so on. The overarching symptom, though, is always extreme tiredness. So, should a soldier returning from Afghanistan go from doctor to doctor insisting he has a viral infection? Or should he just assume, after all the doctors have ruled out viral infection, that the stress of combat has done strange things to his psyche: shell shock.

    Or why don’t you go get some acupuncture. That usually clears up cfs–if you believe it will.

    http://chronicfatigue.about.com/od/alternativetreatments/a/acupuncture.htm

    Anyway, the introduction to the article in question states that the discovery of certain retroviruses may help in the diagnosis of cfs. That sounds like agenda to me. Technically, the discovery should *hinder* the diagnosis of cfs, since that is only diagnosed after biological causes have been ruled out.

    Link to this
  19. 19. gardenerman 2:21 pm 09/3/2010

    Jace,
    Researchers ususally find what they are looking for, and nobody wants to think of himself as crazy. People would rather have Lyme disease and will go looking around until they find a doctor who is willing to diagnose it. Such pop diagnoses come and go every year. For a long time, scientists offered incontravertible proof that cfs–as well as autism–is caused by an overgrowth of candida albicans, since often this existed in the systems of the afflicted. It never occurred to anyone that the infection might be due to excessive masturbation which is prevalent among neurotics.

    Link to this
  20. 20. Jace 4:11 am 09/4/2010

    So, are you saying that science has no place investigating the underlying causes of illness? Cancer, Alzheimers, Diabetes, Beri Beri, it would be better to let the disease run it’s course, untreated?

    Would you be happy to die of a treatable disease, and would you refuse any help gained by scientific understanding?

    Link to this
  21. 21. gardenerman 1:17 pm 09/4/2010

    Pedantry and polemics are not too compatible with thinking about things. Freud thought it would be a convenient thing for psychoanalysts to be physicians in order to rule out physical illness, but the underlying cause of mental illness is usually mental things. Reactive attachment disorder, ptsd, narcissistic personality disorder are well known examples of purely psychogenic illness. The others may have some organic component–Freud himself found that even conversion hysteria needed to start out with a genuine physical problem in the affected limb or organ–but to completely ignore the mind in the etiology of any illness is so naive! In order to diagnose most illness doctors have to ask the patient to answer questions about it. If a doctor asks you to rate your pain from one to ten, he is asking a psychological question isn’t he. If the doctor asks you if you are sleeping well, that’s a psychological question.

    It doesn’t help in the least, and is actually deterimental to understanding, if you pooh-pooh psychology in medicine. Did you know that Viagra has a very specific physical effcct, but it doesn’t work at all unless the patient thinks certain thoughts.

    Link to this
  22. 22. Jace 4:23 am 09/5/2010

    As a woman, I have no experience of Viagra, I’m afraid.

    No-one is trying to say that psychology has no part to play in disease, Garderman, but we are here commenting on an article about scientific investigation into the etiology of a neuro-immune disease. Not only is it a physical illness, as anyone who has actually suffered with ME will tell you, it is one where for the last three decades or so had the physical realities denied.

    So, you deny the possibility of a physical causation of ME, but I accept that any long term chronic illness will have psychological implications.

    The reality is that psychological treatment, all that has been on offer in mainstream medicine, often exacerbates ME. The patient cannot cope with the increase in physical activity involved in Graded Exercise Therapy, or even just getting to the therapist and back… and ends up bed bound as a result.

    So hooray for research, it’s about time we looked for greater understanding of Myalgic Encephalomyelitis (painful muscles, brain inflammation and pain). Roll on the NIH XMRV conference in Bethesda on Tuesday next.

    Link to this
  23. 23. gardenerman 1:33 pm 09/5/2010

    Encephelitis is not the issue. My complaint is against the modern habit of changing the names of mental illnesses then deciding in advance these are purely phyiscal in etiology. I mean, they change the term "nervous exhaustion" to "chronic fatigue syndrome" and solemnly declare this is actually a physical problem that is still not clearly understood! Can’t you see how self-serving that is?. First, it’s good for insurance companies to decide everything is biological. That way they don’t have to pay for inteminable treatment. Second, it is good for the self-esteem of the patients. Finally, it is good for maintaining the physicians godlike image in the eyes of his or her patients. It’s something you should be suspicious of right from the start.

    Reality, however, is this: no medical researcher has been able to discover a cause or even a test for the vast majority of cases of chronic fatigue syndrome, fibromyalgia, migraines, Bell’s palsy, Tourette’s syndrome, autism, ADHD or hundreds of other common complaints including mysterious coughs, and pains and tics and seizures that have persistently defied the reductionist thinking of modern neurology.

    The psychoanalysts have figured it out though. They have discovered there is a meaning behind all this, but nobody pays attention.

    The big problem is that craziness is a defense. People will do whatever it takes to protect their defenses, including self-delusion.

    As for Viagra, I have had experience with it, and I can promise you it doesn’t work unless the user is sexually aroused by what he sees. If some really beautiful gay guy flirted with me, I could swallow a pound of Viagra and still remain limp. I want to know how the neurologists, with their MRI’s and EEG’s and brain regions and rats in mazes experiments have to explain that peculiar anomaly.

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  24. 24. Three Chord Monty 3:25 pm 09/5/2010

    Indeed you are confused. You have thus far introduced the following items

    nervous exhaustion
    neurasthenia
    battle fatigue
    mental illness
    lambs
    conversion disorder
    hypnosis
    biofeedback
    acupuncture
    psychotherapy
    Feud (sic)
    depression
    shell shock
    Viagra
    masturbation

    etc. etc.

    This article is about a paper in PNAS in which a retrovirus was found in 86.5% of CFS patients. You seem eager to discuss virtually anything else, which says more about you than…virtually anything or anybody else.

    Myalgic Encephalomyelitis is not encephelitis. Nervous exhaustion is not chronic fatigue syndrome. And it’s better for insurance companies if conditions of unknown etiology are anything but biological.

    You probably know this, but perhaps someone else reading this might not. Your stating these as fact does not make them so.

    Your complaint of medicalizing mental illness and/or everyday aches and pains is a worthy topic, but not in this thread. If fighting against this is your goal, you should consider the consequences of overreaching and denying medicalization to an actual medical illness.

    It has taken 25+ years for a validation of a viral association in CFS. Now this has happened. Unless, of course, your argument is with the science of the paper. Lengthy off-topic piffle is best shared with a relevant readership.

    I would respectfully suggest that an article about viruses which cause leukemia in mice, found in humans, is not where you’ll find this.

    Carry on.

    Link to this
  25. 25. gardenerman 12:05 am 09/6/2010

    Oh la de dah and ta ta ta! For one thing, maybe the introduction of my peculiar list of terms to the discussion of cfs will make you think about things rather than just toe the academic line. Also, 86 percent isn’t 100 percent. The very idea behind the term "chronic fatigue syndrome" is to acknowledge the existence of a condition that isn’t understood and may be non existent as a specfic illness. There is, in fact, no standardized criteria for cfs. That in itself is evidence that bogus politics are involved.

    And even if it were finally established that all cases of cfs involved retrovirus, there has been no cause and effect determined. In order to do that they would have to see what percent of the entire human population has any retrovirus in the brain. In ancient times, syphilus was universal in the skin of native Americans.

    It would also help to consider the fact that people suffering from depression have weakened immune systems due to stress, thus making a person with a mental illness susceptible to viral infection.

    http://www.personalityresearch.org/papers/beaton.html

    Until they have found compelling evidence that there is no such thing as "nervous exhaustion," they may as well stick to logic and common sense.

    Finally, this is medicine we’re talking about. Until science is certain a particular constellation of symptoms is caused by brain inflammation, a physician is required to use lots of caution; and currently the only treatment with any track record at all in the alleviation of cfs is psychotherapy, unless you consider biofeedback, hypnosis and acupuncture–perhaps Micky Mouse psychotherapy, but psychotherapy nonetheless.

    I’m a Vietnam veteran, btw. I think I’ll tell them I’m tired all the time because I stepped in some Agent Orange, so they give me some service-related pension.

    Link to this
  26. 26. kittycat 5:07 am 09/12/2010

    Your an idiot, I have had CFS for 15 years after contracting glandular fever it has wrecked my life. It is not a mental illness.
    I don’t know why well people like yourself feel the need to comment when you have no idea what its like.
    so keep your narrow minded opinions to yourself, you egotistical know it all pompous twit.

    Link to this
  27. 27. jpdgrace 5:06 am 09/14/2010

    How arrogant! You’ve obviously never had chronic fatigue syndrome! Have you ever experienced the kind of fatigue you get with CFS. No I’m sure you haven’t. Have you ever been on a marathon? If so, could you have taken another step once totally spent? Of course not! And that’s the ongoing type of fatigue that you get with CFS. How would you feel if you did run a marathon and someone (like you) expected you to carry on saying – "come on – it’s all in the mind"! The difference between fatigue with CFS and the fatigue that ‘just very tired’ people get is that with the former – just resting doesn’t make it better. How would you like it if you felt really badly fatigued, had a rest, and then still felt the same? Not just fatigued, but also severe muscle pain and the onset on flu symptoms, Which brings me to another point. Where did you get the idea that fatigue is the only symptom? (And I say ‘only’ just to get over a point because the fatigue is debilitating enough just on its own). Have you ever had a really bad bout of flu? I mean really bad – not just the common cold. Did you go to work? Did you feel really ill? Did it make you feel low? Of course the answer is yes. Chronic Fatigue and immune deficiency syndrome is a viral based illness. Would you like to have a constant virus? In saying it’s a mental illness you imply that it’s all in the mind. However, rather than being ‘mental’ – it is ‘neurological’ meaning that it affects your cognitive skills. Have you ever felt so ill that you can’t think straight? Have you ever had vertigo, had a bad head for months on end? One day when there is even more research done, or you may at some point in the future have a more personal connection to someone with the illness, you will be eating humble pie. I actually feel sorry for you for being so narrow minded, and I would like to say to all those people out there who suffer with CFS and feel as outraged as I do by your comments – I feel for you, and I thank God that the scientists are really moving ahead now with more positive research. It may still take some time for a cure, but just to have their confirmation from clinical trials that this is a physiological illness and not a mental one will help us all. I’m having to stop there because, having CFS myself, I can’t be on the computer for too long before feeling ill, which I’m sure, Mr Gardenerman, you don’t have to worry about! June

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  28. 28. synapse13 1:35 am 03/4/2011

    Gardenerman,
    This is precisely the problem. You are repeating the glib and uninformed statements made in the article that are not based on the science. If you did some research, you would find there is a massive amount of evidence for physiological dysfunction in ME/CFS.
    According to Tony Komoroff, who has led the Harvard Chronic Fatigue Syndrome Unit for over 25 years, has stated that the debate is now over about this illness, it is absolutely physical, and there are over 5000 peer reviewed, medical journal articles demonstrating numerous physiological abnormalities.
    In Osler’s Web, there is a description of a man, who is a Vietnam vet such as yourself, and a biker. He stated that having ME/CFS was worse than having had a head on collision with a Semi while on his bike at 60 MPH. He flew over 100 feet and broke nearly every bone in his body and took years to recover. Even this could not compare to having had ME/CFS.
    Is it necessary to remind you that MS was once called "Hysterical Sclerosis?" Parkinson’s Disease was once thought to be caused by unresolved desires to masturbate. Ulcers were thought until very recently to be caused bu stress. There is a long history of fundamental illness attribution within medicine and ME/CFS is no different. The difference is that there is such an abundance of medical evidence from numerous research studies that are acknowledged by experts the world over, continuing to regurgitate 19th century aphorisms about neuraesthenia isn’t going to cut it.

    Myalgic Encephalomyelitis was defined by expert consensus in the 50′s and 60′s and officially added to the ICD-8 in 1969 after international conferences by the world’s top experts in the illness. It is and always has been, in the neurology section. Chronic Fatigue Syndrome-NOS is listed in the index version as an alternative name (still in the neurology section.) All of the previous names, such epidemic neuromyesthaenia (NOT neuresthaenia) Atypical polio, Atypical MS, Iceland Disease, Akuryeri Disease, were officially subsumed under the label Myalgic Encephalomyelitis. Although there was a small amount of controversy when Beard and McElvesy tried to argue that the Royal Free Epidemic was a form of hysteria but they were roundly criticized for practicing armchair speculation and it has was never "controversial" until the 1980′s when the outbreak in Tahoe occurred and the doctors from the CDC did not recognize an occurrence of an already previously defined illness, decided it was a new illness and called it "CFS."

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  29. 29. synapse13 2:36 am 03/4/2011

    Assuming it’s a mental illness until proved otherwise seems backwards to me. Just because "neuraesthenia" existed in the 19th century doesn’t necessarily mean that it might not have had a physical explanation. Again, that is an assumption framed by decades of cultural conditioning. We do not know whether a doctor going into the past would be able to diagnose these "hysterical women" with ME/CFS (it’s possible that SOME may have had the equivalent.) There is no way to tell. I would rather stick to evidence and hard facts than engage in pointless banter about whether neuraesthenia is the same thing as ME/CFS or not.

    And, as I stated, there are thousands of medical research articles demonstrating physical abnormalities and supporting the severity of the illness. So it really is pointless. "CFS" (the artificial construct based on one, universal symptom experienced the world over in many diseases and which ignores many of the principle symptoms of the illness. It isn’t even the worst symptom for most and would rank below the pain and cognitive complaints) may be a diagnosis of exclusion whereas "ME" is not and always has been based on the signs and symptoms that are present with it’s own unique profile. A definition of a disease is not the same thing as the disease itself, how it is experienced by patients, or the etiological cause of the disease and just because a group of people with little experience with the illness and little knowledge of the previous research on that illness give an illness a particular description and a hinky way of diagnosing does not mean that they are correct. There is a reason that two of the most experienced researchers (Alexis Shelekov and Gordon Parish) who were asked to sign on to the original CDC/NIH "CFS" definition absolutely refused to do so. They both were part of the creation of the ME definition of 1969 and did not appreciate someone undoing their work. Alexis Shelekov wrote papers with Donald Henderson (who led the CDC team to eradicate small pox) on "epidemic neuromyaesthenia," (before the official ME definition came about and this name was subsumed under the ME name and definition) and both knew about the previous research that had found physical findings with ME patients. Both of these men have stated in interviews that ME patients previous to the 1980′s are indistinguishable from current "CFS" patients.

    Link to this

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