Student guest post by Jay Watson

Tired again? Perhaps it’s the crappy weather, because you’re sure that you’ve been getting enough sleep. After all, you can’t remember the last time you spent less than ten hours in bed per night. Hopefully it’s not mono; one of your friends had it a few months ago and it’s all but knocked her out. However, you soon realize that you’ve only talked to her on the phone since she got engaged, so there’s no way that’s it. It’s strange, even everyday activities like running errands has turned into something utterly exhausting. As you consider the reasons as to why you’ve felt so drained for… well for as long as you can remember, you whittle your way down through all the likely suspects. Worried, you finally make a trip into the doctor’s office. After seeing a couple doctors and explaining your medial history in depth each time, a specialist eventually mentions that you might be suffering from chronic fatigue syndrome.

According to the CDC, Chronic fatigue syndrome (or CFS) is a complex disorder that is characterized by severe chronic fatigue that lasts at least six months, as well as at least four of the following symptoms: impairment of short-term memory or concentration, sore throat, tenderness in lymph nodes, muscle or joint pain without swelling or redness, headaches, unrefreshing sleep, and post exertional malaise. In addition to the symptoms listed above, patients diagnosed with CFS have noted several other commonly observed symptoms. Because the laundry list of symptoms can be long, and due to the fact that ‘fatigue’ itself accompanies numerous other illnesses, diagnosis can only be made after eliminating other causes. Diagnosis includes more than one specialist, which typically involves detailed physical examinations and medical histories. Also, it is important to note that there is no laboratory technique currently available to test for chronic fatigue syndrome. Treatment for CSF focuses on the symptoms experienced by individual patients. Though there are plenty of gaps in the knowledge base for this disease, what is known is that CSF affects over one million Americans, and it occurs four times more frequently in women than men. Worldwide, CSF is estimated to affect 17 million, with a majority of people still undiagnosed. Also, CSF is a disease associated with adulthood, with people between forty and fifty most likely to have it. However, true to its name, the specific cause for this syndrome has not been established… yet!

Recently, actually very recently in fact, there has been much attention diverted to a potential factor involved with CSF: Xenotropic murine leukemia virus-related virus (or XMRV for short). Also according to the CDC, this virus is similar to a known mouse retrovirus. However, beyond knowledge of XMRV at the molecular level, little is known about the virus and its mode(s) of transmission. Even the CDC admits that the manner in which XMRV is transmitted is still uncertain and that more information is needed. Initially thought to be only associated with human prostate cancer, a study done by Vincent Lombardi and colleagues in October of 2009 found that approximately 67% of cases in the study diagnosed with CSF had detectible levels of XMRV versus about 4% of controls. Very quickly, additional studies to test this hypothesis have arisen. In contrast with Lombardi’s results, none of the subsequent studies have found an association between XMRV and chronic fatigue syndrome, including a both a case control study and a cohort study in the UK and a small cohort study done in the Netherlands. However, research is so incomplete regarding the association between these two factors that currently researches do not have the ability to say things are one way or the other.

Regardless of the complexity of CSF and the novelty of XMRV, research has undoubtedly unveiled some very important implications that I conclude with:

• Is/will there ever be a method developed so that we can prevent chronic fatigue syndrome rather than treat the symptoms of it alone?

• Why are women more likely than men to have it? What other epidemiologic factors play into CFS?

• Is there significant evidence to associate XMRV with CSF? How much is enough?

• What about XMRV and prostate cancer, as initially theorized?

• Is XMRV actually infectious? How is it transmitted? How virulent is it?

• If XMRV actually is a cause, or at least a within the causal pathway of CFS, what are some of the implications there? Would there be a cure? Can eventually eliminate chronic fatigue syndrome?

Obviously this is not an exhaustive list, but something worth pondering. Perhaps tomorrow’s research will lend insight into this intriguing disease and it’s mysterious cause(s).

References

Chronic Fatigue Syndrome. Center for Disease Control and Prevention. U.S. Department of Health and Human Services. Revised 5 May 2006.

Erlwein O, Kaye S, McClure MO, Weber J, Wills G, et al. 2010 Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. PLoS ONE. 5(1).

Groom HC, Boucherit VC, Makison K, Randal E, Baptista S, Hagan S, Gow JW, Mattes FM, Breurer J, Kerr JR, SToye JP, Bishop KN. 2010. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology. 7(10).

Infectious Mononucleosis. WebMD. Healthwise, Inc. Revised 8 September 2009.

van Kuppeveld FJM, de Jong AS, Lanke KH, Verhaegh GW, Melchers WJ, Swanink CMA, Bleijenberg G, Netea MG, Galama JMD, van der Meer JWM. 2010. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. British Medical Journal. 340(1018).

Lombardi VC, Ruscetti FW, Gupta JD, Pfost, MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petro-Sadowski R, Gold B, Dean M, Silverman RH, and Mikovits JA. 2009. Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Science. 326(5952): 585-589

Malaise. 2010. Merriam-Webster Dictonary Online.

Retrovirus. 2010. Merriam-Webster Dictonary Online.

Xenotropic Murine Leukemia Virus-related Virus (XMRV). Center for Disease Control and Prevention. U.S. Department of Health and Human Services. Revised 18 February 2010.

Comments

  1. #1 oldebabe
    April 26, 2010

    An unknown, but named, so-called disease with a potential myriad of symptoms that may or may not be indicative, with no clear identification of cause or extent or how to manage the possibly imaginary problem, if it indeed exists… You’ve got to be kidding. You are joking, right?

    Or just calling attention to the fact that there are many people in mid-life who become overwhelmingly bored/discontent with their current lives?

  2. #2 cass_m
    April 26, 2010

    At least this is being taken seriously as a syndrome so causes can be investigated instead of being dismissed as oldebabe does. The difference between CFS and being bored with life is the same as the difference between clinical depression and being sad because your goldfish died.

  3. #3 sparkle
    April 26, 2010

    It’s disappointing to see the comment from oldbabe, especially when it so obviously originates from a position of ignorance on the matter. I dare say Sophia Mirza was discontent with her life, however, I suspect it wasn’t boredom that killed her.

    The XMRV finding is incredibly exciting, and I can only hope it moves the argument away from what causes ME/CFS to how do we best tackle it. Real science is finally gaining a foothold for these terribly neglected people.

  4. #4 Dave, London
    April 26, 2010

    Typo: you’ve got CSF instead of CFS a number of times.

    Also, you may want to know that a large number of CFS sufferers deluged this UK forum, following a complaint to UK authorities about a doctor: http://www.badscience.net/forum/viewtopic.php?f=3&t=15693

  5. #5 Zombie
    April 26, 2010

    ERV has written a number of times on XMRV and CFS, apparently the whole thing is a bit of a train wreck.

    http://scienceblogs.com/erv/xmrv/

  6. #6 Lucy
    April 26, 2010

    Well said Dave from London.
    Here is a Clinical Definition link. They are better informed than the author of the above article. Good try though.
    http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

  7. #7 Kevin Berwick
    April 26, 2010

    I’ve been suffering from this rotten problem for almost 3 years now, suffering with a vast number of the symptoms at some stage and several on an ongoing and listed in this list http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf it’s certainly something I struggle to deal with almost daily and would love to be normal again so that I can ride my bike (seriously I mean)again and just do all of the things I took for granted only 3 years ago.
    I must say I got very excited to hear about the XMRV but as time has gone on I’m not so convinced and I’m a little more excited about a theory and research being conducted presently at the Bond University in Queensland Australia but without going into it, you can google Donald Staines and vasoactive neuropeptide autoimmunity and this should get you some information, Donald Staines and Associate professor Sonja Marshall are involved in this very exciting and interesting research.

  8. #8 Dranius Hortensus
    April 26, 2010

    CFS is fascinating. On the one hand, CFS is so protean symptom-wise that any rigorous diagnostic criteria, even if they existed, would exclude large groups of patients. On the other, CFS overlaps considerably (20, 30, 50, 70%?), depending on who’s doing the diagnosis, with other contentious and nebulous conditions like fibromyalgia and the myriad “syndromes”……sick building, irritable bowel, gulf war. All are defined by medically unexplained symptoms. Yes, there are fMRI signatures that seem to distinguish fibromyalgia patients from healthy controls, and some CFS seems to associate with infections, but NO causation has been proven. The notably high percentage of people with these disorders who also suffer from mental disorders may indicate an underlying, common cause, causation in either direction, or that CFS and the mysterious syndromes are misdiagnosed mental problems. Added to the confusion, malingerers and fraudsters take advantage of the complete dearth of knowledge and diagnostic tests to fake the disorders, giving any real sufferers a bad name and ensuring a high skepticism barrier. Hypochondria, conversion disorders, start spreading the names thick, because there are many, none of them exactly the same, but all somehow tied together.

    And now, a new virus. Had it been reported by a garden variety lab, it would’ve been interesting. It was reported by an “Institute” with two PhD researchers, founded to prove its founders’ quasi mystical belief, resonant in a fanatical vein of self-named myalgic encephalomyelitis patients, that CFS is caused by an unknown virus. Attempts to reproduce the results by people with no stake in the outcome, or even a stake in finding XMRV, have been uniformly negative.

    Science can be done in many ways. Starting with a belief and a personal need to validate it is not the best approach. Let’s hope that a few overzealous and self important believers, who don’t seem to know what they’re doing, didn’t set back genuine CFS research and treatment by another decade.

  9. #9 Lucy
    April 26, 2010

    Dranius Hortensus you are not speaking out of knowledge but theory. Obviously you do not have the disease nor have you studied it enough to make complete conclusions.
    See my above comment for a link that will educate you on the subject. Please read carefully as there are similar sounding terms that need to first be understood.

  10. #10 scott
    April 26, 2010

    so a psychologist who pushes CBT doesn’t have an agenda in keeping CFS an inhouse disorder for psychologists to solely treat???

  11. #11 JBit
    April 27, 2010

    Nice write up – thank you.

    One factor that has tremendously dis-serviced people with CFS/ME is the CDC’s constant trivializing of this very real disease and then their 3 major offensive strikes to keep us at bay while saving insurance companies billions of dollars.

    Strike 1) They gave it a name that wouldn’t cause people to worry while inferring a psychological rather than a biological cause.

    Strike 2) They loosened the criteria so that millions of people with clinical depression (outnumbering us by about 500 to 1), that don’t have CFS/ME now come under this same category. They did this by making an a’la carte menu and if you had 4 out of 8 symptoms: BINGO – you’ve got the CDC’s catch-all diagnosis for CFS.

    The problem stems from the fact that these symptoms are all now optional to be included in a diagnosis:
    - unrefreshing sleep
    - post exertional malaise lasting more than 24 hrs
    - persistent or recurring impairment in short term memory or concentration

    Strike 3) Now for the final blow to us people with CFS/ME, the CDC now focuses all their efforts on the clinically depressed, not us.

    This comes as no surprise after all the misappropriations and fraud the CDC has been involved in came to light. It’s the good-old-boys club in Georgia, and they live lavishly while draining tax payer wallets.

    If we’re going to solve this problem we need the right people looking at the right people. A good start would be giving the CDC a cleansing enema.

  12. #12 oregano
    April 27, 2010

    The WPI study had the NCI and the Cleveland Clinic as collaborators. Are they also “overzealous and self-important”? Dr John Coffin, highly respected retrovirologist called the study “as good as it gets” for a first study. Science magazine which published the study is also as good as it gets.

    WPI did this research because the CDC didn’t do its job from the very beginning back in the 80′s. To say the UK studies have “no stake in the outcome” is to display total ignorance of CFS politics in Europe, where psychiatrists and a team of “its all in your head” “scientists” are in charge. Those studies were quick and dirty and designed to FAIL to find XMRV. Japan finds it in about 2% of blood donations; UK patients who sent their blood to be tested by WPI have about 50% positives. So why did those European studies find ZERO? The first one was done in two weeks, “peer reviewed” for 3 days and they paid to get it in print. Can you say “desperate to prove no physical cause”? Can you recognize muddied water, spin and smoke screen? It turns out that WPI also found XMRV in some samples from the UK studies, but those researchers didn’t reveal that.

    This article has many errors of fact and suffers from the usual tone of trivialization of CFS. The worst misstatement may be that it affects adults between 40-50. Children also get it and are often taken from their parents by ignorant child protection services. Prior to puberty, the sexes get it about equally. Then boys get better and girls get worse, generally. That more females suffer from CFS than males is at the core of why it has been trivialized, marginalized and not researched. That the female immune system is different from the male is a major clue that CFS is at least partly an immune disorder.

    If you really want to know more about this illness, check out youtube, search Dr Dan Peterson, Dr Nancy Klimas, Dr David Bell, Dr Cheney. They’ve all been treating CFS for decades and know a lot more about than CDC.

  13. #13 Anon
    April 27, 2010

    I have CFS. I had a blood test showing mitochondrial dysfunction. Dr David Bell discusses it here under Literature Review – http://www.davidsbell.com/PrintLynNewsV6N1.htm
    or see diagram on page 11 here http://www.ijcem.com/files/IJCEM812001.pdf
    This would seem to explain why for me a normal day’s activity requires 4 days in bed to recover from.

  14. #14 acai
    April 27, 2010

    Can’t provide a place name and date of something that is an increased threat, since the phrase ‘increased threat’ refers to an increased likelihood of something occuring.

  15. #15 Lala
    April 27, 2010

    Chronic Fatigue Syndrome is NOT about being tired. This misunderstanding is compounded by the name, a deliberate insult. It isn’t that you wake up tired a lot, or that you get tired a lot. No. It is a perpetual, terrible, really bad flu-like condition. When you are too weak to bathe or get yourself food, when you can’t bear to look out the window because it hurts your head, when standing up and standing still makes you have to fight to not barf or faint, then you’re getting close. I have fought every day for the last 20 years to be as productive as possible – like getting dressed and fixing dinner. Excuse for missing work? Thanks heaps.

    If you are merely inexplicably tired, be very grateful. You’re likely to recover soon.

  16. #16 Bethistopheles
    April 27, 2010

    I have a friend with this condition, and it’s horrible when it flares up. The virus aspect is interesting…the two of us spent a lot of time together when we were younger, and we both have a lot of these symptoms that cannot be explained by any other means (I’ve gone for lupus testing, arthritis, MRIs, x-rays, you name it…) She gets the muscle pain especially bad. The worst part of my experience is a feeling out of nowhere that there are barbs or sharp stones digging into the bones where I have joints to the point where I am unable to walk. And then out of nowhere it goes away. Can last for a minute or a few days. Bleh.

    I’m sorry to hear you’re having such a difficult time, Lela. There are too many out there that have the same ignorant attitude as ‘oldbabe’ has displayed in this thread. I suppose since it’s not a “real” disease, the strain on the psyche from constantly being in pain is just a coincidence, right?

    *rolls eyes*

  17. #17 John
    April 27, 2010

    If you want a quick and concise overview of various abnormalities which have been shown in CFS, please consider watching the following presentation by Anthony Komaroff given at a recent CFS conference.

    The abnormalities shown include abnormal SPECT scans in a majority of CFS patients, abnormal MRI, decreased NK cell number and cytotoxicity, reactivation of various latent herpes viruses such as HHV-6, etc., as well as pilot studies, currently under replication, which show abnormal proteins in the spinal fluid.

    We CFS patients are sick, not tired.

    Anthony Komaroff (HHV-6 & 7 in CNS Dysfunction Session)
    http://www.scivee.tv/node/6831

  18. #18 Sarah
    April 27, 2010

    My mysterious very first symptom was a worst migraine I had ever experienced. This was a few weeks after having mastitus and being hosptilalised having a drip and three courses of antibiotics to get rid of it. However the migraine lasted three days and I noticed the sound of water rattling in my head upon tilting. A few weeks after that I was bedridden three weeks. Not depressed at all. Just lead like weariness and the worst flu ever is what I thought. Thus was the start of 14 years of varying symptoms including coma, collagen vascular disease, siezures, rheumatiod arthritis ………….I cried everyday for five years. My neglected children was the worst. I retaught myself to walk and talk again as well as socialise. Today I am unable to move much. I’m like a granny even though I’m in my forties. Disabled. *If one was to climb a mountain all day, ride a bike all day and horseride all day, pick strawberries all day, squeeze oranges all day, lift weights all day, jog a marathon, have whiplash, have a terrible flu and have got home after a twentyfour hour shift at work…If you put all of the above in the same twenty four hour period and asked me how I am. What do you think the answer would be? This above is ME/CFS/FM in the very severe catagory.

  19. #19 Sarah
    April 27, 2010

    Woops I forgot to say I experienced at least nine months totally bedridden a couple of years after that first one above. But about 11 years bedridden most of the time with absolutely no motivation for me to stay in bed as no one was looking after me. All the while longing to have a life to find just a glimmer of my life again. Overdoing it mostly upon any sign of strength. Now I know I can do only basics to run a small home. Still lay down often in afternoons. After posting this I will realise I have still not told you everything. But my ten minutes is up. Enjoy you day!

  20. #20 Three Chord Monty
    June 27, 2010

    Yes, oldebabe, it’s just a joke.

    As is the title of this dispatch, but I suppose that’s understandable if people thought the CDC’s criteria for CFS were accurate. We may well find out soon enough what a joke they actually are.

    http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

  21. #21 caia
    August 29, 2010

    Oldebabe: So apparently becoming disabled at eighteen, during my first year of college, when I had been happy and productive was because I had reached “mid-life” and “become overwhelmingly bored/discontent with [my] current life”?

    This illness — whatever it is — strikes young and old, children, people who are happy and fulfilled. And although no one has pinned down exactly what it is, it does produce measurable physiological changes, in brain scans, in blood work, in oxygen utilization in second-day exercise tests. I understand that the name of the illness doesn’t work in favor of people know this, but if you educated yourself, you wouldn’t be so dismissive.

    Dr. Smith: I would like to point out that when you title your blog post with such a minimizing title, you virtually ensure that it will bring out the people who feel the need to opine dismissively and hurtfully about an illness they do not have and clearly know nothing about.

    If you want your blog to be informative to people with CFS and those who care about them, you might want to think more carefully about the tone you set.

  22. #22 Bryan
    September 14, 2010

    I’m gonna go with bs on this one. I have headaches every day, a sore throat twice a week, the lymph nodes under my jaw are sore on a daily basis, and sleeping does nothing for me.

    The solution: put up with it….

  23. #23 Cheryl
    November 11, 2010

    Question for those of you with this condition… Do you smoke cigarettes? I have a life long friend who was recently diagnosed with possible fibro/cfs. She is a pack a day smoker. Apparently, she has the energy to go to the store and buy cigarettes yet is unable to work a normal, full time job. When it comes to doing things that are enjoyable, my friend perks up and has fun – never complains of symptoms, but when it comes to work or taking on some other responsibility, she’s tired, she doesn’t feel well, she has a migraine, she has to go home early, etc. One thing to note, her parents spoiled her rotten as garbage all her life and she was never taught true responsiblity or the value of money because everything was provided for her… the same way her parents are doing with her daughter who is already showing signs of fibro/cfs and she’s only 15. By far one of the most lazy, excuse making kids I’ve ever known. Why pay your bills when your parents will just step in and take care of it for you? Regardless, I believe these conditions are very real but I think some of it can be attributed to ones upbringing and daily habits. And I suppose fibro/cfs doesn’t impede your ability to use a computer or sit at a keyboard for a half hour typing messages like the one in this thread?

  24. #24 ATB
    July 25, 2011

    I have a friend(!) who has had ME for decades. Claims to have passed all the diagnostic tests. Always shoving tracts about ME under your nose. Has exploited friends and family’s kindness and compassion over a period of 30 years by faking illness in order to live a work-free, stress-free, anxiety-free, rent-free life in beautiful homes in the most beautiful parts of the world. He leads an ordinary sedentary life (not bed-ridden), we have to take his word for it that he’s suffering. The most burdensome is the non-stop hours he talks about himself and his illness. When politely asked to discuss these things with a therapist (who is, after all, paid to listen to the same boring details over and over) he throws a terrible tantrum because we thereby “implied” that he’s “a looney” and that people like us are responsible for the unbearable suffering of ME patients who don’t receive care because we prevent the insurance industry from recognizing it as a real illness. Now in his mid-60s, he’s in better shape than men half his age. Since all the people he’s exploited over the years are now old and suffering various ailments, aches and pains of old age, while he’s still his normal self, we’ve come to regret our generosity and compassion and kindness.

  25. #25 Oni
    November 3, 2011

    @Cheryl @ATB – You had one bad experience with someone using CFS/ME for their own gains and tar everyone with the same brush? How ignorant can you be going on one experience? My upbringing is none of your business but i was taught the value of money and i am proud to earn my own. I love my job but i struggle to get the hours in and i know i will either have my hours dropped or get canned eventually even if my boss has the best will in the world. He is in business to make money so i wouldnt blame him.
    The science in this article may prove to be BS but hey just the fact that they are looking in to the causes is enough to give some hope no matter how small.