Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” on PBS, and his friend, Deborah Waroff, a New York writer and ME/CFS sufferer for 22 years, have started a new web-based TV show about Chronic Fatigue Syndrome, “MECFS Alert.”
Ms. Waroff said, “This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds.”
“In more than 50 years of reporting, I’ve never experienced so many people so misunderstood and abandoned by society and many doctors. I’ve worked on three continents and reported from around the world, but never have I had a response like the one I’ve had from writing about M.E./CFS,” Mr. King said.
Episode 1, Part 1
For the first show, Ms. Waroff and Mr. King interviewed Dr. Derek Enlander, ME/CFS specialist in New York. In part 1 of the first episode, they talked about Ampligen. Dr. Enlander said that he is about to start a trial of Ampligen, hopefully in July 2011, with patients being given infusions twice a week. He said that, in his Ampligen trial 15 years ago, some patients did very well, other patients didn’t experience any improvement and a few patients experienced a worsening of their symptoms. According to Dr. Enlander, the likelihood for ME/CFS patients being helped by Ampligen is greater than 50%, but he admitted that he didn’t know how Ampligen works and why it is effective for some people and not for others. According to Dr. Enlander, Ampligen is so expensive because Hemispherix, the manufacturer of Ampligen, is a small company that doesn’t have the millions of dollars required for the FDA testing.
When asked by Mr. King what he would request from the US government, particularly the NIH and the CDC, Dr. Enlander said that he would like to see the government provide money for ME/CFS research, which “they have been reticent to do up until now.”
Episode 1, Part 2
At the beginning of part 2 of episode 1, Mr. King pointed out that it struck him that, unlike for other diseases, there is no lobby for ME/CFS patients and, besides Laura Hillenbrand, no celebrity standing up for the patient community like Elizabeth Taylor did, e.g., for HIV and AIDS patients. Dr. Enlander explained that ME/CFS is debilitating and that patients typically use up their savings in the very early stages of the illness because they cannot work, so they have no money left to donate for advocacy. He also pointed out that “the disease is so misunderstood that the lobby against the disease is pervasive.” Mr. King was wondering out loud why so many physicians are hostile,”brush[ing] it away,” making it psychiatric and refusing to take it seriously. He called it “extraordinary.” Dr. Enlander had a short and sweet answer: “It’s called arrogance.” He likened it to the early MS days (20 or 30 years ago) when patients were told that they were hysterical because of the twitches that come with the illness. It was very heartening to hear a physician calling it like it is and not making excuses for his colleagues.
Then, Dr. Enlander talked a bit about his treatment protocol other than Ampligen. He started out by saying that he believes that ME/CFS is an immune system dysfunction and his protocol is aimed at acting on the immune system. The protocol is based on Kutapressin, a prescription injection, which was used in ME/CFS about 20 years ago. It was originally used in the 1950s in cases of Herpes zoster virus (shingles). Because some of the viruses implicated in ME/CFS are Herpes viruses, Kutapressin came to be used as a treatment for ME/CFS. But because only a small percentage of ME/CFS patients improved on Kutapressin, it was abandoned as a treatment option by other doctors in favor of looking for other treatments. Since there weren’t really any other treatment options out there, Dr. Enlander, however, decided to attempt complexing Kutapressin with a few other injectables. He mentioned vitamin B12, magnesium sulfate and folic acid. After refining the Kutapressin complex over the last 15 years, Dr. Enlander said he has increased its efficacy to about 65%. In patients with an HHV-6 titer of 640 or above, Dr. Enlander uses Valcyte in addition to the Kutapressin complex. He said that when the titer is lower than 640, the use of Valcyte is not warranted given its toxic qualities. Dr. Enlander said that the has talked to Dr. Montoya at Stanford about his Valcyte protocol.
Mr. King asked Dr. Enlander about clusters. Dr. Enlander does not think that ME/CFS is an infectious disease because otherwise it would be more prevalent in his opinion. Instead, Dr. Enlander’s and Dr. Jonathan Kerr’s theory is that the disease is genetic. They co-wrote a paper together on an abnormal genome, which Dr. Enlander says makes the disease potentially more prevalent. Since the viruses implicated in ME/CFS are so common and yet not everybody exposed to them will end up suffering from ME/CFS, their theory is that one has to have some genetic predisposition to have an abnormal reaction of the immune system. Their guess is that there is a “gene [that is] affecting an abnormal transponder in the methylation cycle.” Because of that, Dr. Enlander said, people shouldn’t be worried about contagion. He also said that looking at the methylation cycle is another possibility.
Dr. Enlander and Dr. Kenny de Meirleir also have patients who are on GcMAF right now.
At the end of the interview, Mr. King asked Dr. Enlander to say something hopeful to the suffering patient community. Dr. Enlander’s answer seemed to be a direct response to the PACE trial, although he didn’t actually mention it by name. He looked directly into the camera when he spoke: “This is a physical disease. This is not imagined. This is not a psychiatric disease. Changing actually ones outlook in life is not going to make a patient better. One cannot actually produce increased exercise and overcome this disease. In fact, in some cases, this might actually produce relapse. Exercise is good, over-exercise is bad. So, graded-exercise therapy, GET, is not the answer to this disease, neither is cognitive-behavioral therapy.”
Prompted by a question of Ms. Waroff, Dr. Enlander said that catching and treating the disease in the early phases might allow for some of the immune system reactions to be reversed.
There is a lot of excitement in the ME/CFS community about this new program. Patients are so grateful to feel that—finally—somebody really cares about them and is trying to help them.