Journal of IiME Volume 5 Issue 1 (May 2011) Letter from America The CFS Patient Advocate people? They are many, and it would take up too much space to name them. Some are now even dead, to be replaced by new heartless people. Since October 2009 a fresh and resourceful concerted effort is being made to stop all meaningful research into the cause or treatment of this illness. This is a continuing phenomenon and again one must ask why? What is behind this hostility and indifference to a broad and deeply suffering patient population? There are many people who seem to enjoy the negative positions that they can take relative to ME/CFS - and very few who will stick out their necks, and actually try to do something with this illness. Certainly the US government has made it clear that they are not going to directly grapple with this illness. The aggravated, grinding, meanspirited, indifferent attacks on this illness are ongoing. Does this happen in other diseases? The answer is no, this situation is particular with ME/CFS. Why? The bottom line is the negative forces have been splendidly successful in blunting any momentum forward with this illness. Great confusions have been generated, with many attendant sideshows of power and ego involvements that are difficult to comprehend. What are the stakes of the game that is being played? Meanwhile a few patients taking selected antiretroviral drugs show improvements. In talking to Dr. Dale Guyer about a year ago, I mentioned that some patients were going to start taking antiretroviral drugs. Dr. Guyer suggested that he felt these medications certainly might work for a subset of ME/CFS patients, even though one does not know exactly what the drugs are hitting. Dr. Guyer has no problem realizing how sick these patients are. It has become apparent that the WPI is developing a framework to try a number of Invest in ME (Charity Nr. 1114035) protocols or combo protocols on patients in limited trials. Because of a lack of funding, it is possible that they might just bypass trials and start treating patients and building data. Dr. Judy Mikovits pointed out quite clearly that the WPI was not going to wait another two years to move on to the treatment of these sick patients. They feel that there is a very sick patient population of ME/CFS patients that can clearly be identified. They feel that there are the means by which these patients' immune function can be measured and tracked. They feel that there are treatments to try both on the side of pushing back pathogens and on regulating the immune system. Some of these treatments already exist, some are experimental, and some are coming down the line. From the WIP‟s perspective, everything is in place to start treating these patients. The WPI is also actively looking for clinicians, researchers and drug companies to help in this effort. The question now is will the United States government help or hinder the WPI's efforts? All signs right now indicate that the government will hinder the advance of knowledge about ME/CFS. At the end of the NIH State of Knowledge Workshop there was no indication of further plans to accomplish the stated goals of the Workshop: to identify gaps in knowledge and make a plan to solve identified problems. There is also no indication that agencies responsible for health care delivery in the United States have plans to improve the deplorable situation patients face when they try to find a doctor knowledgeable about ME/CFS. Until the U.S. government shows clearly that they are going to address these issues, patients have few choices. We must continue to support those researchers and institutions that are working independently, especially the WPI, who ignited the field in 2009. It is as yet a small spark, but we must nurture it until the causes and treatment of this disease are found. www.investinme.org Page 21/58
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