I haven’t mentioned in any of my blogs that I am an advocate for patients suffering with the debilitating chronic illness commonly referred to as “ME/CFS.” I prefer to use “ME.” “CFS” is a misnomer, and it is hoped that it will be dropped from the identifying name of this disease.
ME stands for myalgic encephalomyelitis. M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems. Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise (PEM), cognitive problems (such as short-term memory loss and concentration difficulties-commonly referred to as “brain fog”), muscle and nerve pain (including fibromyalgia), muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to foods, alcohol, chemicals and medicines.
I’ve been sending monthly letters to President Obama, usually referring to the HHS (Department of Health and Human Services), headed by Kathleen Sebelius. This department oversees the NIH, the CDC, the FDA, and others, which have a great impact on how our government is supposed to care for the health of our citizenry.
Here is the latest one:
President Barack Obama
The White House
1600 Pennsylvania Avenue
Washington DC 20500
Re: The Department of Health & Human Services; National Institute of Health
Dear Mr. President;
Following are comments by ME/CFS patients and their caregivers, responding to a blog:
“The problem is that there is no leadership and accountability within the government, either by elected or non-elected officials.”
“This sort of incompetence continues throughout because no one in the government actually cares. It is just hand-wringing.”
“Meanwhile it is costing the government tens of billions of dollars in lost taxes and welfare.”
“I think a major reason why the government doesn’t want to help those of us with ME/CFS is financial. The officials do not want more people getting medical coverage from Medicare and Medicaid nor does it want more people to receive federal disability benefits. And the insurance companies do not want to pay for medical care related to this disease.”
“This is a time when disability benefits are being questioned for many people, if not outright denied, and when it’s harder to obtain Medicare and Medicaid. In fact, Medicare payments to doctors and coverage is being cut back somewhat.”
“The federal budget has been cut. Funding for agencies, which do medical research has been decreased overall for our disease and others. This isn’t a good time for medical research.”
“When the government shutdown occurred, a lot of programs were cut back. It was revealed by the media that funds had been cut back for the CDC and FDA for programs which monitor Salmonella and other food-borne diseases and for inspections of meat/poultry plants.”
“Our health is not a priority.”
“Finances are definitely a part in this government/insurance companies and combined interests.”
“Getting to the bio markers for ME\CFS has the potential of opening up that proverbial can of worms requiring insurance and disability payments AND proper treatment of a very physically sick large patient population group. AND, with that, the demand for answers from HHS, CFSAC, CDC and NIH and affiliations as to WHY ME/CFS has been largely ignored being LEFT to infect/affect/debilitate millions globally. AND, further questions–WHO has led and who continues to lead the movement AGAINST getting to the scientific answers to ME/CFS? WHY this discrimination? WHY the secrecy?”
“Finances for ME/CFS are merely a surface excuse and only part of the whole problem in lack of transparency and accountability regarding ME/CFS. For example, there is a budget of $16M annually allocated for male pattern baldness.”
“There is reasonable research funding available and allocated to many diseases. In contrast, ME/CFS receives pitiful funding; and of that $1M plus is being needlessly and foolishly wasted on the IOM (Institute of Medicine) contract instead of going to much-needed biomedical research.”
“I do think the government does not want to recognize one more disease because of the funding and research. I believe there was resistance to funding AIDS research and treatment for quite awhile. I think that the AIDS activists, especially ACT-UP and others who were really public, pushed the government to do the research and fund it.”
“I could also surmise that because this is primarily a woman’s disease (not all, I know), that there is even less interest in funding research.”
“But I agree it isn’t only finances; it’s politics. It’s lack of interest in taking on a new challenge, in breaking with the status quo. The disease is an enigma. It would take a real concerted, unified research program to find the causes, biomarkers and treatments. Does the government want to do this? Not really.”
“Dr. Ian Lipkin, virologist, is asking patients and relatives to donate for his research. This is crazy. The government could do it, and has tons more funds than our [ME/CFS] community has, obviously. It could easily give him $1 million, even $10 million.”
“I cannot understand at all how anyone could think that all of HHS’ malfeasance and nonfeasance isn’t intentional, since the whole thing has been a bad impression of a parody of a poor imitation of trying to make progress.”
I hope the above comments, which were in response to a blog, will make it obvious to you that this is an extremely important subject, affecting over a million citizens of the United States, and over 17 million citizens of the world.
To date, I haven’t received a response, and I don’t expect to receive any. But, we have to go forward and hope. 🙂