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  1. By Mark Wanner
  2. Is a diagnostic blood test for chronic fatigue syndrome on the horizon?
  3. Chronic fatigue syndrome |

Our treatments and support network [for CFS] are not great. One commonly used test checks for antibodies to the bacteria made by the body, but these may not develop until six weeks after exposure, so people can test negative in the early stage of infection. And some private laboratories in the US and Europe offer unvalidated tests for Lyme disease that are likely to give false positive results, said Brooks.

He knows of people trying to raise many thousands of pounds for treatment in other countries.

Dryden and Logan have both known people on long-term antibiotic treatment for chronic Lyme disease who have developed infections with antibiotic-resistant bacteria. There have also been several cases of severe infections caused by people having antibiotics delivered into a vein in their chest, in an attempt to continuously treat their disease. Lyme disease can occasionally cause long-lasting symptoms, says Dryden, but this is rare. In one study of about people with confirmed Lyme disease, only three reported some fatigue or muscle pain after treatment with antibiotics.

It is almost impossible to describe how deeply that pain touched me, how it completely re-directed my life. The existential weight of knowing the smartest physicians around had no clue what was wrong with me and could give me nothing to ease my suffering fell on me. In those darkest, weakest moments when your body is nothing but dead weight, you learn to see God most clearly.

You are reborn. I channeled every hope I had into a research paper assignment on alternative medicines, specifically traditional Chinese and Ayurvedic medicine. It was the most logical thing to do. Western medical science was doing nothing for me. For awhile these alternate ways of viewing my disease were a grand refuge.

By Mark Wanner

Although finding an English-speaking acupuncturist in rural Georgia was a tough sell, simply understanding these alternate health philosophies and how to re-orient my relationship with food, drink, sleep and environment contributed much to easing my burden. I mention this partly as personal history but mostly to set up the false dichotomy between East and West, between alternative and mainstream.

There should be no distinction. This idea gets to the very deepest core of why we bother to try and research anything at all, be it XMRV or nuclear proliferation or development economics. It is because our very lives depend on it. The acupuncturists helped a little but they were nearly as ineffective for me as the rheumatologists, the endocrinologists, the neurologists and the rest. I would have tried absolutely anything to get better: hypnotist, witch doctor, anything. In those dark nights of searching with my only animating desire to find the truth, I finally stumbled upon the answer.

It was very nearly hidden in plain sight. There was a nation-wide network of fatigue clinics run by Jacob Tietelbaum, a medical doctor who himself had fallen victim to CFS as a medical student in the s. They could hardly be more under-the-radar.

Is a diagnostic blood test for chronic fatigue syndrome on the horizon?

Even in countries where health care is a right, the situation has been dire. The National Health Service NHS recommended these interventions, even after many patients complained that exercise dramatically worsens their condition. Montoya will never forget one such tragedy. In her suicide note, he says, the daughter asked that her brain be donated to him for research. Infections generally lead to inflammation when protein receptors on T cells, a kind of immune cell, recognize corresponding proteins carried by bacteria, parasites or viruses.

The T cells multiply and catalyse an inflammatory attack that includes the replication of antibody-producing immune cells, called B cells. Most recently, last June, Montoya and his colleagues revealed 9 abnormalities in the levels of 17 immune-system proteins called cytokines in people with severe cases of the syndrome.

What disrupts the inflammatory response, however, remains unknown. An accidental finding has lent support to this idea. Fluge and his colleagues then conducted a placebo-controlled trial with 30 people who had the condition and not cancer , and found that rituximab improved their symptoms As word spread, Fluge was flooded with hundreds of e-mails from people asking to take part in his trials, and doctors around the world fielded desperate requests for the experimental therapy.

Yet any hopes that Fluge dared to have were dashed last October, as he assessed data from an as-yet unpublished person clinical trial and found that rituximab proved no better than the placebo.

Fluge says the finer details of the trial might yet reveal whether a small subset of participants benefited. Therefore, what helps some people might not help others. This effect might not be discernible until researchers can tease out how patients differ from one another. Newsletters dating back decades document how activists have struggled to be recognized by scientists.

Through the s, advocates accused the NIH of favouring grant proposals focused on psychiatric and behavioural studies, as opposed to those exploring physiological pathways. Unutmaz admits that his studies are at an early stage, and says the point is to generate data to form sharper hypotheses. But the bank has been limited by funding constraints.

He points out that although HIV affects roughly the same number of people in the United States — about 1. That test uses a small device containing 2, electrodes that measure electrical resistance in immune cells and plasma from blood. Researcher Ronald Davis prepares a treatment for his son, Whitney Dafoe, who has chronic fatigue syndrome and can no longer walk or speak. Davis knows the pain of disappointment personally.

A member of the team, Laurel Crosby, recalls exchanging e-mails with Dafoe, discussing the research. Then those, too, stopped coming. Dafoe, now 34 years old, can no longer speak. He communicates with his parents through small motions, such as ripping holes in the shape of hearts in paper towels. In it, he is standing on a beach in northern California with his arms raised towards the sky. Davis took the photo on one of the last days his son could walk.

Chronic fatigue syndrome |

So he is furiously testing the electrical device, as well as screening blood samples for proteins and genetic signatures that might reveal a biomarker for the disease. Not having clear criteria for a diagnosis has made clinical trials particularly challenging. Weeks later, six researchers signed an open letter to the editor of The Lancet , which published the initial PACE results, requesting a reanalysis of the data.

Last March, scientists and advocates did the same in a letter to Psychological Medicine — the journal that published the PACE results — requesting a retraction. A leading criticism was that the investigators had changed how they measured recovery during the course of the trial, making that outcome simpler to achieve.