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My Health News Daily article "Chronic Fatigue Sydrome Proves Chronically Mysterious"

Discussion in 'General ME/CFS News' started by ixchelkali, Apr 4, 2011.

  1. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA

    Chronic Fatigue Sydrome Proves Chronically Mysterious

    by Rachael Rettner

    The past few years have brought both profits and perils for those hoping to untangle the mysterious disease of chronic fatigue syndrome.

    On the one hand, researchers have made advances in understanding what predispose people to the condition and have identified biological markers (physical changes that can be measured) unique to the disease. Just last month, scientists found a set of proteins in the spinal fluid of chronic fatigue syndrome patients that may distinguish them from healthy people.

    But decades after the syndrome was recognized, researchers are still struggling to find its cause. Hopes that a virus was responsible for the disease were put on hold when subsequent tests could not confirm the results. The field remains riddled with problems that hinder progress, including the lack of a stringent definition for the condition. And people continue to stigmatize the syndrome as a disease that is all in mind.

    Nevertheless, researchers remain hopeful they can unravel the illness. Even acknowledging that the syndrome is a physical disorder, as many researchers in the United States now do, was a step in the right direction, said Mary Ann Fletcher, a professor of medicine, microbiology, immunology and psychology at the University of Miami Miller School of Medicine.

    "I think the whole of field has made enormous strides in coming to the realization that this is an illness that is complex, but it does have biological markers that are associated with it that can be measured and found to be abnormal," Fletcher said. "Using these will help us both diagnose and develop treatments" for chronic fatigue syndrome.

    This week, chronic fatigue syndrome experts will meet at a National Institute of Health sponsored workshop in Bethesda, Md., to discuss the current understanding of the disease and how the field can best move forward.

    Troublesome definition

    Chronic fatigue syndrome is characterized by extreme fatigue for at least six months that is not alleviated by rest, and cannot be explained by other conditions, according to the Centers for Disease Control and Prevention (CDC). It affects about 1 million to 4 million people in the United States and 17 million worldwide, according to the National Institutes of Health (NIH).

    One problem with chronic fatigue syndrome research has been the definition itself. Researchers may use different criteria for including patients in their studies, and as a result, end up with very heterogeneous groups of people, including some that don't even have chronic fatigue syndrome.

    "You have to be able to decide who has the illness and who doesnt have the illness," said Leonard Jason, a professor of psychology at DePaul University in Chicago. "That activity really becomes critical for being able to find out what might be causing the illness, or what might be maintaining the illness or how many people have the illness, or how to treat the illness."

    Most researchers use what is known as the Fukuda criteria to define the syndrome. This criteria requires people to experience four out of eight symptoms beyond just fatigue. But Jason says this criteria needs to be revamped, and may need to include additional symptoms, such as feeling tired after exercise, he said.

    Additional complications include the fact that patients need to have symptoms for six months before they can be considered to have the condition, making it hard to go back and find the original cause, said Dr. Beth Unger, chief of CDCs Chronic Viral Diseases Branch. And since patients are often ill for many years, it's hard to distinguish which symptoms are due to the actual disease and which arise as a result of medications (for depression or low blood pressure, for instance) and the burden of being chronically ill, Unger said.

    Finding a cause

    Researchers are investigating a number of possible causes, including infectious agents (such as viruses), problems with the immune system, genetic factors and exposure to stress.

    But experts agree that the syndrome is likely to have more than one cause.

    "I think it is unlikely that one specific pathology, or cause, will explain the whole of chronic fatigue syndrome," said Dr. Peter White, professor of psychological medicine at Barts and the London School of Medicine and Dentistry in England. "I dont think it's going to be totally viral or totally immune or totally psychological it's going to be a combination."

    A 2009 study in the journal Science found an association between chronic fatigue syndrome and the retrovirus XMRV. However, with two exceptions, researchers from other laboratories were unable to confirm these findings. Researchers from Columbia University, the University of Miami and the NIH are hoping to sort out the confusion by collecting blood samples from chronic fatigue patients and healthy people and testing them in three separate labs for XMRV, Fletcher said. The results of this study won't be available for a few months, she said.

    Other groups have found patients with chronic fatigue syndrome have low levels of the stress hormone cortisol, Jason said.

    There's also evidence that infections, including the Epstein-Barr virus, can trigger the disease.

    And chronic fatigue syndrome is associated with other medically unexplained conditions, including irritable bowel syndrome, fibromyalgia and migraines, White said. The field would benefit from having more people who look at the disease in an integrated fashion, rather than at separate components, White said.

    "The virologists look for viruses, the immunologists look at the immune system," and psychiatrists and psychologists look at psychological factors, White said. "So everyone looks in their own particular area of expertise, where they feel comfortable, but very few people are putting it together," White said.

    Way forward

    As a first step, Fletcher would like to identify a set of biomarkers that would help doctors define patients as having chronic fatigue syndrome. She notes that there are many diseases, including rheumatoid arthritis and diabetes, which can be treated without knowing what exactly causes them. Identifying biomarkers for chronic fatigue syndrome will help researchers develop therapies for patients, even if they don't find the cause first.

    "It's clearly possible, if you know what the biological deficits are in the disease, to continue to develop therapies," Fletcher said. "You know that things are wrong, and you have to put them right, and there are ways to do that even if you dont know exactly why they became to be wrong to begin with."

    The time when researchers will have this set of biomarkers is "close at hand," Fletcher said.

    If there are several illnesses within chronic fatigue syndrome, several treatments may be needed to treat every patient. It may help to separate patients into groups of people who have similar symptoms and biological changes in order to treat them more effectively, White said.

    "I think the future research will include allocating patients to particular subgroups to understand their particular reasons for being ill, and design treatments appropriately," White said.
  2. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    I don't agree with this sentence. I think research is stronger than ever...

    'Hopes that a virus was responsible for the disease WERE PUT ON HOLD when subsequent tests could not confirm the results.'
  3. funny how only thse bastards put "psychological" as a factor for this disease, as for any other, say, Multiple Sclerosis, they'd lose their medical licences or even freedom, for such bullshit.

    neither was it a factor in M.S. (not female hysteria), nor stomach ulcers (it was a bacteria you were too piss blind idiotic to bother even trying to find), etc.
    medical establishment is a joke, it's go tso little to do with science it's embarassing :(

    Sorry for language but it is outrageous we still get such crap and assholes like that can say such things. Why not say it's a disease caused by having an "inferior race or gender", hm? for that is EXACTLY the kind of sick crap that lies behind this stigmatism, grrrr!!! Bigotry, small-minded lazy bigotry.
    If they cna't find an answer, they'll make one up that fits THEIR psychology.

    White can kiss my arse!
  4. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    Sure, I agree with you. But did you notice something interesting? Instead of the usual It's-all-in-their-heads or it-started-with-a-virus-but-now-they're-just-perpetuating-sickness-behaviors, White is trying to stake out a claim to SOME part of ME/CFS. As the medical evidence mounts, White wants to be sure the psych lobby isn't left out in the cold. At the same time, he can point to these quotes and claim he never said it was ALL psychogenic. Sounds like a little preemptive arse-covering to me.

    Yeah, I wish the author hadn't touted White as an ME/CFS "expert." Or slipped in phrases like "other medically unexplained illnesses." Still, it's certainly not as bad overall as many articles over the years have been. I liked the part where Dr Fletcher pointed out that you don't have to know the cause before you can use the markers you have to start targeting treatments, and that she compared it to RA and diabetes. And you can't really blame the author for reporting Dr Unger's odd remarks; she IS the head of the CDC branch assigned to ME/CFS, after all.

    At least it's not one of those articles that implies we're all nut cases.
  5. Ian

    Ian Senior Member

    Another garbage article which re-enforces the 'We have no clue about the causes of CFS'

    Straight from the ME association webpage

    The reason mainstream medicine hasn't found a 'cure' is because they can't find a drug that will hide the symptoms. It's as simple as that, if they had one, they would sell it. They have absolutely no interest in addressing the causes of CFS because there is NO MONEY TO BE MADE doing this.
  6. ixchelkali
    yeah it's like Wessely and his linking the HPA Axis issues in recent years: to cover his ass for when it blows up in his face.
    "Oh, see I was actively trying to find a real cause!"
    *cough* BULLSHIT! *cough* :p

    oh hell they LOVE having a sick group they can sell drugs too! Diabetes is their absolute fave, hell I'd bet good money that say 50 years from now, we find some group knew what the cause was, and either supressed that knowledge, or even caused it
    Diabetics have ot take insulin, metaform etc *every day for the rest of their lives*
    Basically, it is "Extortion With Menaces" in legal parliance. Guaranteed profit every day for decades.
    A cure would rob them of that profit.
    See Avandia scandal for how scuzzy the pharma corps are, blech :/

    See some of the cancer drugs, a treatment regime may cost $50,000 to $200,000 dollars! and the patient (health service, insurer) has no choice but to pay up or DIE
    all of which is another reason why health care should be 100% free of commercialism.
    Health is NOT a commodity.
  7. insearchof

    insearchof Senior Member


    It's interesting to me how since XMRV White is talking about sub groups and psychiatry being one......have to carve out their little sub group and keep a place at the table.

    Is this the first time we have seen this from the Wesley school? If so, is it an indicator of their position weakening?
  8. KnightofZERO


    That's exactly what it seems like to me. Once a strong biomedical definition is used that includes PEM, loss of 50% of activity, Blood volume loss and Abnormal Regulation of Blood Pressure (e.g. abnormally low pulse pressure, orthostatic hypotension, racing heartbeat), Neurocognitive disability, Muscle Pain, Abnormal Sleep Stage findings + things like decreased NK cell function & increased Neutrophil apoptosis, increased herpes family reactivation-- the support for any kind of psychiatric causation will evaporate.

    We urgently need to get to that stage. I am optimistic that even many of those researchers who think "XMRV" isn't *it* will nevertheless see this is a very real biological condition urgently needing investigation. (besides the fact we have seen from CROI & and NYAS there are plently of researchers thinking XMRV/MLVs may be *it*). PW et al will have to resort to saying... "well with the old definition there were people who had psychiatric symptoms as important (implication="we aren't guilty of gross mismangement of research into a very debilitating and serious disorder that slowed the research progress for years and led to many people's deaths").
  9. taniaaust1


    Sth Australia
    I dont think their position is weakening.. they are just making sure their butts are covered. Those guys arent stupid and will always make sure we cant hit them hard with law suits when the scienctific discoveries are made.
  10. insearchof

    insearchof Senior Member

    I don't think they are thinking that far ahead.....I think they are thinking about the $$$.....because those that found themselves suddenly in a non psych group might still have that option.

    I take this as a sign that despite the. UK contamination studies, I think they might know how this is going to all pan out.
  11. Desdinova

    Desdinova Senior Member

    Could have been a fairly decent article too bad they had to go and screw it all up by quoting Peter White.

    WHAAAAAAAAAT! Combination, combination, combination! Oh it's a combination now is it. Really Are you sure Mr. White? Are you really really sure? First it was psychological, then it was psychosomatic (mind body) which while it does happen is few and far between. And most certainly does not come close to the number of those afflicted with ME/CFS. And now it's a combination. What a bunch of garbage, total garbage.
  12. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    Next they'll be wanting to add "Epidemic Somatoform Disorder" to the DSM.

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