There have been over 4,000 peer reviewed biomedical studies conducted on ME/CFS and yet these studies appear to have been systematically ignored and minimized by successive governments. On the other hand, poorly-conducted and poorly-reviewed psychiatric studies have often been accepted, without question. This is particularly the case in the UK where there is a blatant conflict of interest on the part of a number of senior doctors, several of whom are or have previously been employed by the insurance industry giant, UNUM in addition to being key government advisers on ME/CFS policy and funding. Perhaps this is the reason why, out of the £109,000 awarded by the Medical Research Council (one of the main agencies through which the government provides funding for medical and clinical research) to ME/CFS research for 2009-2010, £73,405 was dispensed to Professors White & Sharpe et al for the PACE trial. (See this article from the ME Association which outlines MRC expenditure on research relating to ME/CFS over the last 10 years. Note the types of studies funded).
In the U.S., the Centers for Disease Control and Prevention’s failure to fund biomedical research has resulted in the need for private enterprises and charities to “go it alone” and find the funds themselves.
We call for the CDC to use the internationally recognized Canadian Consensus Criteria or the International Consensus Criteria and do what Congress told them to do: study the possible viral cause and find a biomarker.
We call for governments to commit to clinical trials now. Any further delay will result in more needless suffering and death.
Many sufferers have gone without treatment for nearly 25 years. In a civilized society is this acceptable? If an AIDS sufferer were to go without treatment, they would almost certainly die. People with ME/CFS experience a living death because of this lack of research, lack of government recognition of biomarkers and lack of effective treatments.