‘Unlocking Chronic Fatigue Syndrome’: Wall Street Journal health blog, 22 March 2011

March 22, 2011

From the Wall Street Journal health blog, 22 March 2011 (story by Amy Dockser Marcus)

As scientists race to find a biological cause for chronic fatigue syndrome, long considered by many doctors to exist in patients' heads, the National Institutes of Health could shed new light on the debate at a major scientific workshop on the disorder.

Researchers at the University of Utah and elsewhere are working to create diagnostic tests, based partly on proteins or other markers that appear to show up in greater quantities in patients with chronic fatigue syndrome. Diagnosing the disorder is difficult, in part because symptoms vary among patients.

Other scientists are trying to understand why other infections, such as mononucleosis, appear to prompt chronic fatigue syndrome in some patients. And in a program at New York's Columbia University, researchers are seeking to identify pathogens that may appear prominently in patients with the disorder. Researchers will be testing “for all those agents that we know affect vertebrates on this globe,” says Mady Hornig, who heads the Columbia program.

Chronic fatigue syndrome affects between one million and four million Americans. They suffer from memory and concentration problems, debilitating pain and severe fatigue. Unable to identify a cause, doctors often dismissed these patients as complainers.

Currently, diagnosing chronic fatigue syndrome is largely a process of elimination. Molly J. Billings, 22 years old, first showed symptoms of the disorder in 2004, including headaches, muscle aches, fatigue and weakness. A year later, she could only get around by wheelchair and was bed-bound most of the time. She endured years of tests to rule out other medical explanations for her condition.

“It was horrible to go and not find anything,” says Ms. Billings, who lives in Kendall, N.Y. “I want a test that will give me a finite result.” Today, her symptoms have shown gradual improvement. She attends classes twice a week at a local community college and is able occasionally to go out with friends.

CFS, also known as ME for myalgic encephalomyelitis, got a boost of attention in 2009 when the journal Science published a study that found the retrovirus XMRV was present in most members of a group of chronic fatigue syndrome patients. The 2009 study divided scientists and led to intense debate about whether the XMRV link is a breakthrough or a result of lab contamination. The study launched a wave of new research.

Anthony Komaroff, a doctor at Harvard Medical School who treats chronic fatigue syndrome patients, was involved in a study that found viruses in the same family as XMRV in his patients. Meanwhile, Brigitte Huber, professor of pathology at Tufts University, was involved in separate work that failed to find XMRV. They are now collaborating on a project that received funding last year to study two viruses in patients with the syndrome.

Because symptoms of the syndrome tend to wax and wane, the researchers are investigating whether the viruses may be easier to detect when the symptoms are flaring. Dr. Komaroff is taking blood samples from patients when they are feeling relatively well and when their symptoms are pronounced. Dr. Huber will then analyze the blood to see if she can detect higher amounts of these viruses during times when people feel worse.

Jose G. Montoya, a researcher at Stanford University, is searching for possible infectious agents in chronic fatigue syndrome. “If we can find the infectious triggers, we can provide intervention,” he says. Dr. Montoya's team enrolled 30 patients with elevated levels of antibodies against Epstein-Barr virus and HHV-6, a herpes virus, in a trial and treated them with valganciclovir, an anti-viral medicine. Dr. Montoya says patients on the drug showed improvement in cognition and fatigue. Researchers are now analyzing the patients' immune proteins to see if there are patterns that will help doctors figure out in advance who will and won't respond to therapy.

A number of efforts are underway to try to develop diagnostic tests. Researchers at the University of Medicine and Dentistry of New Jersey and Pacific Northwest National Laboratory reported recently that they found proteins in the spinal fluid of people with chronic fatigue syndrome that distinguished them from people with Lyme disease, which has some similar symptoms, and healthy controls. The next step is to narrow down the list of proteins to find “the best biomarkers for what is going wrong in the central nervous system,” says Steven E. Schutzer of the University of Medicine and Dentistry of New Jersey who helped lead the study.

At the University of Utah, researchers are working on what they hope might ultimately lead to a test for chronic fatigue syndrome. Forty-eight patients with the disorder and healthy controls are involved in a trial in which they undergo a 30-minute exercise challenge. Even after moderate exercise, there were increases in gene expression markers in the blood for two days that allowed researchers to distinguish chronic fatigue syndrome patients from healthy controls.

More than 100 scientists, researchers and advocates are expected to gather at the NIH workshop in Bethesda, Md., attending sessions focused on such medical topics as infectious diseases, systems biology, immunology and neurology. By contrast, the last NIH scientific workshop, in 2003, had more emphasis on the psychological aspects of the disease, including stress, insomnia and depression.

Medical history has other examples of diseases that were not taken seriously but later turned out to have biological causes. Multiple sclerosis was once misdiagnosed as hysteria or chronic alcoholism. Today multiple sclerosis is suspected to be an auto-immune disorder. Stomach ulcers were thought to be caused by stress until two Australian scientists proved the bacteria Helicobacter pylori was the cause, work that won the Nobel Prize in 2005.

“The door has been opened by the retrovirus,” says Mary Schweitzer, a former history professor who has chronic fatigue syndrome and was tapped to serve on the steering committee planning the NIH conference. “Now we want to bring in all the scientific research that is being done.”

Write to Amy Dockser Marcus at amy.marcus@wsj.com

5 thoughts on “‘Unlocking Chronic Fatigue Syndrome’: Wall Street Journal health blog, 22 March 2011”

  1. ‘More than 100 scientists, researchers and advocates are expected to gather at the NIH workshop in Bethesda, Md., attending sessions focused on such medical topics as infectious diseases, systems biology, immunology and neurology. By contrast, the last NIH scientific workshop, in 2003, had more emphasis on the psychological aspects of the disease, including stress, insomnia and depression.’

    Is it just me or has Amy started talking less about the WPI and Mikovits of late and more about other scientists and medical professionals?

    If so, it is a very good thing in my humble opinion as it starts including more of the other research being conducted.

    And not just Amy methinks. Maybe the $3-4million raised from sufferer donations (in large part) for the WPI will start finding their way to other equally deserving projects?

    1. Firestormm, your negative attitude towards the WPI and their outstanding work, is becoming somewhat tiresome.
      Why on earth would anyone in their right mind seek to reduce the WPI’s income, when it is they, above all others, who have raised the profile of this illness and hence reinforced the imperative for public funding of research. It is therefore all the more ironic that they are not yet benefitting from the impetus that they have created. Surely, the need is for more money to be put into all biomedical aspects of M.E. research, although I do recall that you were one of those who was content when the MRC announced their paltry £1.5m for M.E. research in the UK recently.
      The answer has to be more funding for the WPI (& others) not less.

      1. No Dionysus I am not being negative towards any one person or organisation. I am a cautious person, increasingly so as it happens.

        And yes, you are right more money for biomedical research (as opposed to psychological studies) is needed.

        The biomedical fraternity have let us down for far too long, and it is great to see so much activity in this area now.

        The way in which the WPI and Dr Mikovits are held aloft by some sufferers alarms me is all. I have said so elsewhere and now articles are beginning to reflect the danger of putting all our hopes in the one basket.

        Let’s be honest, if there had been no ‘link’ between XMRV and CFS the WPI would not have received all that money. And yet it is only part of what they have and hope to achieve. My concern is that Dr Mikovits and others have taken on too much. However, only time will tell.

        There was talk of a UK clinic by way of another hope, and this is not the case. And we heard last year Dr Mikovits talking of a treatment sometime in 2011. Yet nobody has said anything yet about what XMRV actually is responsible for. What it does and whether it can be responsible for our specific symptoms and the ‘chronic fatigue’ – the main reason perhaps we are all here now.

        How can anyone prescribe Antiretroval drugs for something that might not even cause our symptoms, let alone be really present in our bodies. And look at the ‘awareness’ campaigning over XMRV – that ad in the Washington Post – talk about sensationalising and spreading fear and alarm.

        People can donate their money to any cause they like. Yet the pressure to contribute to the WPI above anyone else is too much. They are being presented as the only ones doing anything to help us – and they clearly are not. One has to wholeheartedly agree with every positive piece of research about XMRV and condemn outright all the negative ones.

        Objectivity seems sadly lacking among some sufferers unless of course it concerns something unconnected with XMRV but then that is relegated to the backburner for consideration later and given only a brief consideration.

        I am not negative Dionysus. I have spoken with the WPI about my genuine concerns for their own wellbeing on several occasions and in relation to other matters.

        I am just trying to see the wood for the trees and gaining that perspective is proving quite hard these days.

        1. Contamination claims will be over soon. There is an association, and those who understand this retrovirus need immediate funding to pursue treatments. Other labs will now have to play catch up.

          All other research will now have to be either abandoned or reassessed in light of this, as it won’t necessarily apply to those with the retrovirus and those without. What a mess our Governments have created.

  2. It was Mikovits that started the renewed vigour and interest in the viral link to disease into ME. It has given the area a wake up call and patients hope. More people know of our plight now despite the UK government’s intention to paly it down for economic purposes with their agenda highlighted by the DWP’s involvement in the PACE trial-the first scientific study that the DWP have ever funded. Fact obtained in a FOI request but that I knew about all along.

    I just hope that if the consensus over XMRV proves that the link is unproven, then a directive to an agreement over diagnostic criterias, funding for research into genuine ME and the drive for a definitive test will be the focus. A long-term drive with funds outweighing those for other illnesses is needed now to address the imbalance shown for a disease neglected for decades.

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