Journal of IiME Volume 8 Issue 1 Letter from America $60 million year-in a year-out for nuclear fusion research -- and I see nothing wrong with that. But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable. To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to wilful neglect; an abrogation of the high purposes of Hippocrates' calling. Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders. These governments have been seduced by the fraudulent blandishments of the psychiatric lobby. If a ME/CFS patient refuses to accept a psychiatric diagnosis, he or she can either be imprisoned or forced to suffer the insinuation that they are not physically sick, even if they cannot get out of bed. There are cases in Europe where patients refusing the prescribed psychiatric treatment have been imprisoned, as happened most recently to Karina Hansen in Denmark. The United States is experiencing a boom in natural gas production and the deployment of solar panels on rooftops. These successes are the manifestation of substantial research money committed in the 1970s, and sustained since then. Science needs certainty of support, both political and financial, to triumph. The key is sustained funding; a splash here and a dash there just won't do -- it won't do anything. ME/CFS researchers need to concentrate on their work, wherever that work takes them, free from the stress of insecure funding. ME/CFS deserves the level of effort that might lead to success. It is not getting it now, and it never has had it. It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowd funding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg. Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science. If we, as a nation, are to believe that we are in the forefront of science, we must be in the forefront of biomedical research as well as the forefront of computers, telecommunications, materials and physics. We almost humbled polio, and developed powerful drug therapies for AIDS. Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders. We can transplant vital organs and gave hope to the leper. The advances came neither cheaply nor easily, but they have saved lives beyond counting and eased suffering beyond enumeration. Why not for ME/CFS? Why not? There is eloquence in the voices of the community. But they are widely distributed and, sadly, they fall mostly on ears of those who already know them — the sick, their families and their advocates. The voices need to be heard widely, need to be channelled and need to be focused. A million points of light won't do it. A laser, a great beam, will do it. There are three principal reasons why these voices are not heard by those who need to hear them: 1. ME/CFS is a hard story for the media to grasp. 2. ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson's Disease. 3. ME/CFS has no presence in Washington. Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take. May 2014 Invest in ME (Charity Nr. 1114035) www.investinme.org Page 23 of 52
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