Testimony From a patient

A patient which I will only identify by the name of Ms. X, has provided me with her account of living with CFS, and how as a desperate measure she finally found a doctor that would prescribe her antiretrovirals.  Ms. X is 36 years old, and has been living with CFS since age 24.  She was once a very active person - having completed the Boston Marathon one year before coming down with CFS.  It all started with flu like symptoms she states, but she never fully recover until...  By age 25, she would endure malaise on a daily basis - seeing specialist after specialist - two rheumatologists, a sleep specialist, cardiologist.  By age 28, she would struggle to work part-time.  At age 31, she was admitted to a psychiatric hospital after becoming suicidal as a result of doctors giving her the runaround.  It was at this time that she was diagnosed with CFS - and she began graded exercise therapy, which left her even more fatigued.

At the time the Mikovits et. al study came out, she had been unemployed for 3 years.  At this time, she began to travel around the country looking for a doctor that would prescribe her antiretrovirals - most doctors were extremely relucatant, until she found one in San Francisco that treated HIV patients early in the epidemic.  She was given a two drug combination - Isentress (Raltegravir), and Viread (Tenofovir).  Initially, she felt worse (Fever, chills, cough), and almost stopped taking the drugs, but after 21 days began a rapid and sustained improvement.  After 3 months, she no longer experienced any musculoskeletal pain, nor any post-exertional malaise, she would return to work full time by 4 months - and currently is capable of exercising 1 hour per day.  For her, the monthly cost of the combo treatment comes to a staggering $1500 a month - something she could not afford on her own, nor would any HMO or drug plan want anything to do with it - luckily for help from her family.

Norwegian Study Offers Clues

An experimental ME/CFS treatment in Norway involves some tantalizing clues: B cell depletion with Rituximab.  The study was initiated after a patient with CFS had unexpected, marked recovery of CFS symptoms following cytotoxic chemotherapy for Hodgkins's disease.  A following study was initiated recruiting patients, for B-Cell depletion therapy, all patients in the study demonstrated substantial improvement after the first infusion, followed by a relapse, improvement following the second infusion, and an even more marked  improvement after the third infusion.  This treatment will not likely gain a mainstay in ME/CFS treatment, as it poses a high degree of risk, costs over $10,000 a treatment, and would require infusions on an ongoing basis.

Nevertheless, it shows that B-Cells beyond a reasonable doubt play a major role in the pathogenesis of ME/CFS.  By depleting XMRV infected B cells, it can be seen that healthy B cells develop from progenitor stem cells, but soon succumb to infection - indicating that XMRV infects other classes of lymphocytes.  It leaves room to infer that antiretroviral therapy would have an even more profound and lasting effect: Most T-cells, with the exception of memory cells have an average lifespan of about 8 weeks. After a couple month course of antiretroviral therapy, it would not be unreasonable to see the vast majority of lymphocytes replaced by healthy cells

Fluge and Mella BMC Neurology 2009 9:28   doi:10.1186/1471-2377-9-28