Mary Schweitzer has just posted some really good comments over there:
http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html
Mary Schweitzer ·
Disabled historian at
Disabled at home since 1994
Thank you for this compassionate article. If I could just correct one thing, it would be your comment that some have the disease for months, others for years. Sadly, those who do well take 2 years to do so. For most of us, this is a life sentence. We learn to cope with it; some people like me are able to get testing and medicine. Not every drug works for everyone - sadly, it appears they have found nothing that can work for Whitney.
At least one million adult Americans have ME. At best, one-fourth are working fulltime; another one-fourth part-time. One-half - that would be 500,000 people - cannot work at all. Some, like Whitney, have family; others live in quiet desperation - you may have been a lawyer or a doctor, a nurse or a teacher, but now you are penniless and dependent upon the stingy largesse of our penurious government. I have friends who have spent periods homeless; many more who live in daily fear of becoming homeless.
Two reports were commissioned last year by the federal government - one for the Dept. of Health and Human Services (HHS) by the Institute of Medicine, the other by a program within NIH called P2P (Pathways to Prevention). BOTH studies stated unconditionally that this disease is not psychiatric in etiology or characteristics.
NIH's Director, Francis Collins, has announced a new internal study (presumaby in response to the urgency declared by both reports). However, the Lead Associate Director for the study published an article last year stating casually that "chronic fatigue syndrome" and fibromyalgia are both somatoform disorders (the current pseudonym for psychosomatic disorders).
He is one of five members on an "expert committee." Another "expert" is a specialist on "catastrophizing" - that is, upon observing that patients who say they are in a lot of pain tend to think about pain more than others, this researcher concluded that THINKING about pain CAUSES pain. A third is a nice elderly gentleman who is so outdated on the literature that he still thinks counseling and exercise are the only options.
I have been sick since 1994. I had a natural killer cell function below 3%; the 37kDa RNase-l defect (which leaves an essential component to fighting viruses half-sized); and abnormal cytokine profiles. I had abnormal SPECT scans and CPET scores. I also had become mostly bedridden (I could get to the bathroom from my bed, but that took a lot of effort); couldn't read; had ataxia, absence seizures, blackouts, expressive dysphasia, disorientation, and massive confusion to the point where if I did have to ride in a car, my daughter had to fasten my seat belt because I didn't know what those two things were for. And there was a lot of pain.
I'm lucky to be in studies to get this testing, and lucky to respond to an experimental immune modulator. I can walk - stride, even! - drive a car, read anything, I'm back to writing again - I still have problems with stamina and fighting off flus, but I am a real personal again. The medicine is $16,000/year and requires that I be at a "study" site because i have to get it by IV twice a week, but I'm still grateful to have it. I've been on it since 1999. Most of my friends make less in a year than I spend on this one drug, so I know how lucky I am.
In Whitney's case, you have to be concerned that any drug strong enough to make a dent in the disease could itself harm him more. But this disease does kill. In 2005, the 23-year-old son of a close friend, long diagnosed with CFS, died in his sleep of a massive heart attack. His heart showed both old and new scarring consistent with years of viral assaults.
We cannot get Washington to FOCUS on this disease and consider it a priority. Insurance companies - taken by surprise by AIDS - have been determined not to have to fund us. 70-80% of patients are female, and there is an element of the all-knowing professional dismissing the stated symptoms of a patient who is supposed to be compliant. Perhaps NIH and CDC are trying to save face, having done nothing for 30 years. But I have trouble thinking of any good reason that this disease is not treated with an URGENCY commensurate with its prevalence and severity.
I ask people to help us get research funding from NIH for people currently doing biomedical research on the disease - not just within NIH. I ask for parity in funding - $350 million as is spent on MS, with half the patients, would be a miraculous change from $6 million. I ask for CARE for the patients who have this disease and have been deserted.
And right now, we are also asking that NIH stop that study which is careening towards disaster - only 40 patients, with three of the five experts involved in choosing patients having published on this disease being caused by "somaticizing." They have great plans for what they are going to do with the patients, but the study will be doomed at the start by only 40 chosen in haphazard manner.
Please help us! Thank you.
