Today, my heart is broken at the loss of a very good friend who died after an extended battle with stage 4 cancer. A battle that she fought with courage and a will to win, a battle fought with the full support of friends, family and the best that experts in cancer research and clinical care can provide. I accompanied her on visits to her doctors and sat by her side as she faced the awful truth of her disease and prognosis. But I also sat with her as we both marveled at the power and precision with which these experts worked feverishly to extend her life. For cancer patients, at least for those with insurance, the cancer medical system is a highly trained army ready to take on the enemies that have invaded your body. Even when the cancer ultimately wins, this is first class medicine borne from decades of first class research.
But we all know, as did my friend, that patients with myalgic encephalomyelitis live far, far away from this world. Patients with ME, even those with the best insurance and the best social support, live in a world that is the medical equivalent of the most squalid slum in the poorest county on earth. The contrast cannot be starker, especially for those who do not have insurance or familial support. I know this firsthand because my son entered this medical wasteland when he came down with ME over 3 years ago.
For the first year and a half that my son was sick, my first conscious thought every single morning was that I couldn’t believe this was happening to him. But that stopped the day that I came face to face with two harsh realities – first, that my son was extremely unlikely to get better and second, that the U.S. government knew about this terrible disease before my son was even born and yet had never done anything about it. Worse than doing nothing, HHS had effectively buried ME inside of an illegitimate collection of “medically unexplained fatiguing illnesses” called “CFS”. All that remained to complete the transformation of ME into the “I’m so tired” disease was for HHS to starve funding for ME research, focus on psychological issues, neglect needed epidemiological studies, miseducate the medical community on the nature of ME and systematically ignore the views of ME patients and ME experts alike.
Today, with the exception of a small handful of dedicated doctors who believe ME patients, study their disease and try to care for them, ME patients do indeed live in a medical wasteland – a medical wasteland that is the direct result of HHS policies and actions for the last thirty years. World-class researchers can’t get funding to advance knowledge of the disease or find treatments. And thanks to medical miseducation, the medical community at large has so poorly treated - and even mistreated - ME patients that patients avoid doctors at all costs, even to the point of gambling their lives that they don’t need to have that chest pain or cough checked out. Ironically, as it stands today, the only way that ME patients ever get access to the kind of first class medical care that my friend received is if they develop cancer or heart disease, diseases that are the long term consequence of ME.
Thanks to Jennie Spotila, we are now able to read the statement of work for HHS’ latest effort to develop another definition, an effort contracted to the Institute of Medicine (IOM). We can see for ourselves what HHS is planning. It is not pretty or good. But after thirty years, who among us is really surprised? This statement of work, developed unilaterally by HHS inside of its ME-free bubble, is not a deviation from an otherwise positive track record. Rather, it is just the latest in a thirty-year-old history of failed HHS policies toward ME.
Remarkably, since the IOM contract was first announced in late August, both ME patients and ME experts alike have collectively shouted “Enough” to HHS. Yes, there has been an outpouring of opposition specifically directed to the IOM contract. But the reaction of the ME community has been about much more than just this one IOM contract. It is a single voice refusing to continue to accept HHS’ positive intent or the legitimacy of HHS’ actions regarding ME. A single voice that ME patients will no longer accept being sentenced to this medical wasteland. A single voice declaring that after thirty years of failed HHS policies, thirty years of neglect and stigmatization of ME patients, HHS must stop mucking it up. My friend was part of that single voice because she could see the difference.
The silver lining of the government furlough is that ME patients have been running on empty and need time to recover. But once the government furlough is over, we must continue to petition our congressional leaders. Yes, ask them to tell HHS to cancel the IOM contract. Ask them to tell HHS to follow the lead of ME experts and adopt the CCC.
But don’t stop there. Ask your congressional leaders to ask hard questions about how and why HHS has failed these terribly disabled patients for so long and so badly. Ask your congressional leaders to tell HHS to finally take ME seriously and give us the first-class research and clinical care that we so desperately need.
My son - and all of you - deserve no less!
