MONKEY BUSINESS

Joe Landson emailed CFS Central three macaque cartoons that he's sent to government officials, as part of the “Time for Action” campaign.  On October 4, patients Rivka Solomon, Charlotte von Salis and Robert Miller launched the campaign to get the government's attention concerning ME/CFS.

"Should the CDC ever be inundated by banana peels, I categorically disavow all knowledge," Landson wrote to CFS Central.  Last week, Landson posted this comment on this blog:

"Right, so I've started faxing cartoons, annotated with the suggested messages, to Dirs. Collins and Fauci. Every day, it's another observation about ME/CFS, told by a rhesus macaque I draw myself. (All else is computerized.) Why the macaque? Because macaques have arguably done more to advance CFS research than senior NIH officials have."  Landson is referring to the study done by researchers at Emory University’s primate lab who injected XMRV into macaques and reported that even when the retrovirus was undetectable in the blood, it thrived in the reproductive organs as well as the spleen, gut, bladder, lung, liver and lymph nodes. 
 
Macaque 1, Macaque 2, Macaque 3.

Dr. Michael Snyderman at MD Anderson

Oncologist Michael Snyderman will present his latest poster on his one-man trial to treat ME/CFS and chronic lymphocytic leukemia with HIV meds at 7 p.m., October 13 at MD Anderson Cancer Center in Houston, Texas.  Snyderman, who is XMRV positive, has both ME/CFS and chronic lymphocytic leukemia (CLL), which is relatively common in ME/CFS patients.  About 5 percent of ME/CFS patients get it, compared with .02 percent in the general population.  Snyderman's taking AZT and raltegravir, two HIV drugs with efficacy against XMRV in test tube studies.

Snyderman continues to feel significantly more energetic than he was prior to initiating antiretroviral therapy.  His elevated cytokine signature, particularly interleukin 8, improved on the cocktail and his XMRV viral load dropped. His CLL cells expressed XMRV. Snyderman, however, is concerned that attending the poster presentation may be discouraging for some patients because of the recent upturn in a CLL marker called trisomy 12, which is elevated in 25 percent of patients with CLL.  Initially on the drugs, this marker plummeted.

IN SEARCH OF THE TIPPING POINT

Three ME/CFS patients launch a campaign to get the government’s attention

Beginning today, ME/CFS patients Rivka Solomon, Charlotte von Salis and Robert Miller are launching the “Time for Action” campaign. Using email, fax and phone, the trio are asking ME/CFS patients to contact Director of the National Institute of Allergy and Infectious Disease Dr. Anthony Fauci and Director of the National Institutes of Health Dr. Francis Collins every day and pose the same question: “What have you done for ME/CFS today?  Patients and their families are waiting.” 

Robert Miller organized the September 7 meeting of nine patients and their families with NIH scientists Michael Gottesman, Paul Plotz and Roland Owens, in Bethesda, Maryland, right before the NIH's first international XMRV conference began. Along with Miller, Solomon and von Salis were among the patients who attended.

Solomon’s mother was also there—and came up with the idea for the new campaign. “Bug them every day!” she advised her daughter.  It was a light-bulb moment for Solomon.  “It lets the government know we’re watching them, waiting for them to help us," she explains. "And it’s what we’re calling ‘advocacy made easy.’ This way we can include everyone in the action campaign—even the severely ill. The way I see it, and I'm speaking for myself personally here, this illness and we patients who suffer from it have been ignored, delegitimized, psychologized and marginalized since the early 1980s, when many of us first got sick.

Solomon, a playwright from Boston, and Miller, a former fire boss in Utah (who moved to Reno, Nevada, last year for the experimental HIV and ME/CFS intravenous drug Ampligen from CFS-literate physician Dr. Daniel Peterson) have been ill for a quarter century.

Von Salis, a lawyer, lives outside Washington, D.C., and has spent the last two decades bed-bound or house-bound. “NIH Deputy Director Gottesman pointed out during our meeting that AIDS activists definitely had an impact on the NIH's response to their disease,” von Salis recalls. “ME/CFS requires as strong a response from the NIH as AIDS did, especially in light of recent research indicating a retroviral association. Increasingly greater numbers of patients, their families and friends are completely fed up with the lack of governmental response to ME/CFS and are prepared to act, just as PWAs [persons with AIDS] did. This simple campaign puts the NIH on notice that we’re not about to remain silent and accept the status quo. If we don’t get a response or the response is inadequate, we will follow up with another action."

Solomon agrees.  Although she was pleased with the September 7 meeting between ME/CFS patients and NIH officials, as well as the NIH two-day international XMRV conference, she’s looking for a little less conversation and a little more action on the part of both patients and government.  "We won't get fast-track clinical trials by waiting for them," she says. "We need to demand them. We won't get funding for ME/CFS centers of excellence by waiting for them. We need to demand them. The NIH will see a repeat of the ACT UP days of AIDS activism if they don’t move to actually help us ME/CFS patients, and fast."
 

Contact info:
National Institutes of Allergy and Infectious Disease
Director Anthony Fauci
Email: afauci@niaid.nih.gov
Phone: 301-496-2263
Fax: 301-402-3573

National Institutes of Health
Director Francis Collins
Email: collinsf@od.nih.gov
Phone: 301-496-2433
Fax: 301-402-2700

Robert Miller is tracking patient response to the Time for Action campaign and would appreciate patients sending him a copy of any emails sent to Fauci and Collins: hebs1reel@yahoo.com

DR. MICHAEL SNYDERMAN'S ONE-MAN DRUG TRIAL

Dr. Michael Snyderman, an oncologist at the State University of New York at Buffalo, also has Chronic Fatigue Syndrome and chronic lymphocytic leukemia (CLL), one of the cancers that's relatively common in CFS patients.  His poster presentation at the NIH conference showed that on a trial of AZT and Isentress (raltegravir)—two HIV drugs with efficacy against XMRV in test tube studies—several inflammatory cytokines decreased.  Cytokines are proteins secreted by immune and glial cells.  For Snyderman, the drop in interleukin 8 was particularly striking.  His CLL numbers decreased as well—and his CLL cells expressed XMRV. 

In an email, Snyderman wrote to CFS Central, “I believe there is excellent supporting data for treatment trials to start right now (as long as a good lab like Judy's [Mikovits] is involved). I am upset by delays when people with neurological, autoimmune and neoplastic disease are suffering. I don't know if treatment will work but my personal data validates trials. This is why I have put myself through this. I knew I was working with a center of excellence (WPI), and if there was anything important to learn, we would.  Waiting more to do these studies will not make the data stronger or more convincing. The studies can be modest at first to learn the parameters before doing a multi-million dollar study.”

Snyderman promises a longer interview with CFS Central in two weeks.  Right now, he’s snowed under finishing another poster presentation, this one for MD Anderson Cancer Hospital at the University of Texas.