Dr. Michael Snyderman, an ME/CFS patient with chronic lymphocytic leukemia (CLL), began a trial of two HIV drugs shown to have efficacy in treating XMRV in test tube studies. Here's the poster presentation that Snyderman, who's an oncologist, is presenting at MD Anderson Cancer Center in Houston, Texas, at 7 p.m. this evening. Snyderman concludes on the poster:
"A patient with CFS and CLL with adverse prognostic factors was shown to have XMRV in plasma and CLL cells. Within the first 100 days of treatment with AZT and raltegravir, he showed multiple benefits simultaneous with disappearance of infectious XMRV. These findings suggest that XMRV is etiological for both the CLL and CFS and that virus-direct treatment was beneficial in this patient. Further CLL patients should be studied especially as CLL has been statistically associated with an increased risk for other neoplasia. Questions to be answered are what neoplasms are associated with XMRV, will existing antiretrovirals have antineoplasticactivity in these neoplasms and what is the optimal combination of antiretroviral drugs."
Snyderman continues to have more energy on the drug cocktail. However, the doctor's trisomy 12 marker--which is elevated in 25 percent of patients with CLL--initially dipped significantly on the drugs, but has begun to rise again.
Thank you, Dr. Michael Snyderman: "These findings suggest that XMRV is etiological for both the CLL and CFS and that virus-direct treatment was beneficial in this patient."
ReplyDeleteAs far as I can recall, you are the first person who has stated this publicly. I applaud your courage and I wish you the best with your health.
Thank you, Mindy Kitei. Once again, you have given us great information and excellent journalism.
Patricia Carter
www.mecfsforums.com
After Wildaisy, all I can say is 'ditto'!
ReplyDeleteDr. Snyderman, a brave advocate! Thank you for standing up to them all with facts from your own experience.
www/causes.com/511536
Does anyone know what reaction, if any, from the medical community on this? I don't much care - most doctors have been content to make fun of us while getting at least 1 visit a month for non-treatment of their pwc's. I'm just wondering if many others have been receptive. The doctors I see don't care and can't be bothered to check on the findings. Good to see a difference of one.
ReplyDeleteMy great and hopefully unfounded fear for Dr. Snyderman is that of the Flowers for Algernon effect -- great improvement followed by a total relapse. Were I in his place, having both leukemia and CFS, I would give retrovirals a whirl, too. I thank him for his courage and sincerely hope the improvement he's witnessed both increases and persists.
ReplyDeleteThis study is particularly interesting to me, because one member of our Michigan support group was recently diagnosed with CLL as well as the ME/CFS that she had been diagnosed with more than 20 years ago. She has since moved to Oregon, and I pray that she will find effective treatments soon.
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