Llewellyn King’s latest piece about ME, “Chronic Fatigue Syndrome: The Silent Suffering,” was published today in the Open Salon. Mr. King, with his signature style of elegant and no-nonsense language, achieves what is so elusive for most writers: to give the reader a hint of what it’s like to live with ME. Here are the highlights:
“… of all the big diseases, [ME] is probably the least publicized, least talked about, and the most ignored in medical institutions…”
“As AIDS was initially, [ME] is haunted by fear, stigma and ignorance. It is misdiagnosed and often its victims are abused, thrown out of their families, and live in squalor and pain with little hope. They despair that they cannot convince doctors, their families or their loved ones that they are, in fact, sick.”
“… in that world of anguish, where the victims feel they are to blame because they are a burden to those who love them.”
“Most doctors are not qualified to offer [ME] diagnoses …”
“Suicide is common …”
“… an experimental drug, Ampligen, is helping a patient elite of about 750: They can get the drug in limited trials and can expect to pay between $25,000 and $40,000 a year for it.”
One clarification regarding the last quote: According to information published by Hemispherx, the maker of Ampligen, earlier this month, there are currently only 26 ME patients on Ampligen–no doubt due to the fact that the price tag puts this drug out of reach of most people. I am one of the lucky few who may soon join the ranks of Ampligen recipients. 750 may be the total number of ME patients who have received Ampligen over the course of the last few decades, although I believed that number to be closer to 500, but I am not certain.
I feel the greatest gratitude towards Mr. King for his unwavering support.
This is good, and I’ll be sure to read his article. A video of King emceeing a discussion about ME/CFS was quite informative and supportive — and I liked seeing a woman with this disease who explained her days as “salad” or “not salad” days. Whether or not she could stand and make a salad expressed the differences in a good or bad day. I concur. I’m glad he’s out there and being supportive.
It’s getting very frustrating out there, what with NIH not giving any grants at this time, even after the CFSAC session, and then Dr. Mikovits being arrested. But trying to look at the developments, I am reminding myself of Dr. Enlander’s seminar on Sunday, which was reportedly quite well-done and his researchers are impressive, I gather. And the Chronic Fatigue Initiative is happening, the Hutchins Family Fund is supporting some research, and some good scientists are out there working for us.
Good luck on the Ampligen. Had no idea it is so costly, but then again so is Rituximab, and if it is found to be successful, it may be quite limited due to financial constraints. But we’ll wait and see.
Re Rituxan, I have said that Rituxan could be the new Ampligen: The ME drug nobody can have (quoting Mindy Kitei), except it’s even more expensive. While the maker of Rituxan seems to have no interest in doing trials (maybe b/c their patent is almost up), there is going to be more research done with the drug–no doubt about it. For example, Dr. Kogelnik is doing a trial with it right now. So, I have high hopes that it will be FDA approved for ME in a few years if it really shakes out and works in ME. Once approved, insurance will pay for it.
With Ampligen, am not so sure if will ever be approved. I guess we’ll find out soon. I think HEM is either going to get approval soon or go bankrupt.
P.S. Your descriptions of what it’s like to live with this disease is very good. I’ve given one friend this website’s name and what to look for, as she seems interested in knowing more.
P.P.S. At Chronic Fatigue Syndrome Advocate, there is a very positive review of Dr. Enlander’s seminar on ME/CFS held at Mount Sinai this Sunday. Attendees are very impressed by the scope of the research being planned and treatment — and by the scientists who will work on this effort.
I don’t know what medications will be paid for, especially with cutbacks in Medicare and Medicaid, for the millions who rely on those health care programs. Already five states have put 9,000 people with HIV and AIDS on waiting lists for medications, which formerly were covered; some have died.
And these programs have eliminated some cancer chemotherapy drugs from coverage because of cost.
So it remains to be seen what happens with medication coverage, especially since there’s barely any government funding for research or much attention paid to ME/CFS.
I hail Drs. Malle and Fluge for what they’re doing, but how it plays it in Europe and in the U.S., in reality, and with coverage, is a wait-and-see.
good point. didn’t think of medicare and medicaid. was just thinking of private insurance.
At the CFSAC (Advisory Committee) meeting in early November, an official with Medicare said that 300,000 people with CFS were treated last year under Medicare for a cost of $100 million.
This article was just posted today, and was referred to in a terrific CFS-sufferer’s Facebook page. It is excellent, a real contribution. It argues against the “graduated exercise” and CBT theories, expounded by you-know-who.
This is a good holiday present to us: http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
Some things are moving ahead despite the backslides.
David Tuller really came through for us with this piece. It is extraordinary!