I went to a new Endocrinologist this past week because some new symptoms have cropped up for me and as part of the work up,I mentioned that I have been suffering from Chronic Fatigue Syndrome for the past 11 years. He was quiet for a few moments and then said: "You know what that diagnosis means, right? It is when you have several symptoms and they can't find what it is, that's what Chronic Fatigue Syndrome is".
I can't say that I was shocked because to be honest I have had that reaction from several previous doctors that I have seen and it is actually preferable to the reaction of saying that it is just depression and somatic.
I was going to react and try to explain to him what I thought what this diagnosis was but, stopped myself because if I really think about it, this is probably a good description of what HHS thinks that this disease is. It is more or less the description of Fukuda which is still used to day by NIH and CDC.
I feel that in order to adequately explain the damage that HHS has done to 'this disease', one needs to go to the beginning and follow it's history of how NIH and CDC has with a concerted effort watered down, minimized, marginalized this disease to a point where it is not recognizable from the core disease that CDC sent out two lightweights to investigate in the 80's in Lake Tahoe.
I have thought hard about what my vote would be for PR to present to the IOM and it looks a lot like what Ren posted above.
(1) This secret contract is not wanted.
(2) The patient community has lost faith in the US government to stop its campaign of abuse.
(3) I would then state that my remaining six minutess will be used as a "moment of silence" to honor all those - civilians and veterans - who have died "naturally" or by their own hand, due to past and present state-and-corporate coerced medical negligence.
My vote is to definitely state, for the record, that most of the community is against the IOM contract and are in support of our experts' open letter urging HHS to adopt the CCC now. Any criteria that they produce which is 'broader' than CCC will not be accepted by patients, advocates and the experts in the field.
Then, I would want to explain why. I would briefly go through the history of how the CDC came to look at an outbreak of a serious, debilitating, seemingly infectious disease at Lake Tahoe and decided to downplay it and even though it looked like the disease called Myalgic Encephalomyelitis in the U.K., to call it 'Chronic Fatigue Syndrome". This was one of the many major 'mistakes' that the CDC took in it's path of destruction of this disease. They gave it the Oxford definition that hardly described the 'Lake Tahoe disease'. As a matter of fact, anyone who had felt tired for 6 months and suffered from a few other symptoms could be included in this umbrella diagnosis.
With all the great outcry from patient groups, advocates, patients, clinicians, scientists and researchers, HHS still holds on to this notion today, more than 25 years later! Not only have the patients who have and are suffering from the 'core' disease of ME been shortchanged in the denial of serious funding for the disease and therefore resulted in the availability of no treatments, thousands and maybe hundred of thousands have been 'damaged' by the insistence of the crazy notion that one can exercise themselves out of this! I know that I have been rendered disabled for the past eleven years because I was told to 'push through' my fatigue (which was really bone crushing, lead feeling exhaustion). Unfortunately, I know of countless cases, especially in the U.K. where graded exercise therapy is aggressively pushed, where patients have been rendered permanently bed bound by this exulted "treatment therapy'.
Therefore, I would seek the following from this panel:
1- Go back to the core of this disease. This is a complex, serious, debilitating, multi system disease which leaves it's patients disabled. All can't continue to function in their life as before. About half can't work at all and a quarter are left bed bound for the rest of their lives.
2- Give this core disease it's due name of 'Myalgic Encephalomyelitis'.
3-PEM/PENE has to be a hallmark of this core disease.
4-Neurological and immune dysfunction need to be present.