Monday, January 10, 2011

Two Physicians Try Antiretroviral Drugs For ME/CFS


ME/CFS is a crippling neuroimmune disease that has ruined the lives of at least a million Americans.

After 20 years of searching for treatment, the parents of Andrea Whittemore, who has had it since she was 12, funded research into the illness. They started WPI, the Whittemore Peterson Institute.

This resulted in the finding in 2009 of a new retrovirus, tentatively named XMRV, in most ME/CFS patients. In 2010 virologists at the FDA, NIH and Harvard published a study supporting the 2009 findings of WPI.

Subsequently, Dr. Ila Singh researched whether any of the drugs developed for the well known retrovirus, HIV, might be effective against the new virus. She found 3 FDA approved drugs that were effective against XMRV in the lab: AZT, Viread and Insentress.

Patients and the doctors who treat them have suspected a virus or retrovirus was the culprit, all or in part, since AIDS-like lesions were found in brains scans of ME/CFS patients in the 1980’s. The relapsing-remitting pattern of the illness also mimics viral illnesses such as malaria or herpes. The profound, disabling exhaustion is reminiscent of infection with Epstein Barr virus. The flu-like symptoms many experienced at onset also infer a viral infection.

Not surprisingly, doctors may also get this disease.

Two who did get it, Dr. Jamie Deckoff-Jones and Dr. Michael Snyderman, in consultation with their own physicians, decided to try the treatments found by Dr. Singh to be effective against XMRV in the lab.

Dr. Snyderman is an oncologist, a cancer specialist, who himself developed a rare cancer that is not that uncommon in CFS patients. He started treatment with AZT and Isentress at HIV doses. He reported that he felt 25% better after 3 weeks. In the 6th month of treatment he added Viread, also at the HIV dosage. At a medical conference he presented a poster detailing his tests, treatment and outcome.

Thanks to Mindy Ketei at http://www.cfscentral.com/2010/10/dr-michael-snydermans-md-anderson.html for that link.

His poster indicates that he no longer tests positive for the XMRV retrovirus and the markers for his cancer have been reduced.

Dr. Deckoff-James was an emergency room surgeon before she became too disabled to work. Last March she began treatment with AZT and soon added Isentress. She and her daughter, who is also disabled with ME/CFS, have blogged about their experiences with the treatment. They added Viread in May. They have shared their ups and downs with their blog readers through the months of overall improvement.

Dr. Deckoff-Jones has said she has improved from approximately 50% functioning to about 80% in the 9 months they have been on these ARV drugs. This has allowed her to go back to work part time. She will be working with Dr. Judy Mikovits, one of the discoverers of XMRV, on a project to educate physicians on how to treat ME/CFS patients who have tested positive for the retrovirus.

Dr. Deckoff-Jones recently overdid it and experienced a "crash" - post-exertional malaise (PEM). She also regrets ever trying to calculate her progress using the KPS (Karnofsky Performance Scale) to estimate her level of functioning. Like many others with CFS, she has found it doesn't do justice to the differences between physical functioning and mental functioning. Many of the details simply do not correlate well to the kind of disabilities CFS patients experience.

Dr. Mikovits is scheduled to report on similar ARV drug treatments by other physicians on January 17, 2011. In a sneak peak at some information that will be shared in Santa Rosa CA on that date. Dr. Timothy Luckett, blogging about ME/CFS, says that "all CFS patients showed remarkable improvements after receiving antiretrovirals - the group that received Viread and Isentress faired out best."

Unfortunately for most ME/CFS patients, these drugs are too expensive. The CDC has declared all tests and treatments for CFS to be "experimental". That means that no insurance program, including Medicare, will pay for them. At a cost of $1200-1500/month plus the costs of seeing a physician who will prescribe them and the monitoring that must be done while taking them, this treatment is out of reach of most ME/CFS patients.

Cartoons by T. McCracken

2 comments:

  1. It's terrific that we have this new, high quality blog, written by someone who understands the history of the disease.

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  2. If these medications work, why can't the drug companies make them affordable to those who need them? Does our country want us to be disabled? I loved working and attempted to get off disability because I prefer to work, be around people, be productive, have a life of some kind.

    But the "push and crash" didn't work for me like it did in prior years and now I am nearly 100 percent debilitated. I rarely leave the house. But I am highly educated and skilled as are most ME/CFS patients, so wouldn't it make sense for our government to find a way to help us get well so we don't all have to be on disability?

    I hate being on disability, but I also hate getting worse because I've pushed myself too much. A few years ago, I had to undergo hip pinning surgery after getting dizzy when I fell off a ladder. That surgery failed and I wound up with a total hip replacement.

    Even being 25 percent better than I am would be something. It's so hard to have hope when you just keep getting worse and there's no progress or doctors in your area (Phoenix, AZ) don't treat ME/CFS because they don't believe it exists or because they don't have time.

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