The way I see it Since the Lake Tahoe outbreak in 1980’s HHS including NIH and CDC have had an agenda: “Let’s try to make this illness disappear. They started by giving it the trivial name of chronic fatigue syndrome and they gave it a very vague definition which pretty much equated it the debilitating disease with depression. Since the HHS has pretty much stood ground with this agenda by giving the “appearance” that they are taking this seriously, they redefined the disease in 1994 with the Fuduka which was only a step above oxford. They have since then buried their boots and have consistently refused to adopt any newer, improved diagnostic criteria that were based on new research and scientific studies. To further give the image that they care about the patient population and are doing “everything” that they can, they formed a “federal” CFS advisory committee which has been named CFSAC since 2003. The reason I put “federal” in quotation is because that’s what it really is. It was formed, chartered and is controlled by NIH. They make the rules, they assign the agendas to the meetings and most importantly they chose who will serve on the committee. NIH has played games with us throughout those years: -funding available for this disease is less per patient than ANY other illness in history. -when repeatedly been asked to update the CDC website to reflect new knowledge about the illness, it falls on deaf ears. -when asked to accept the CCC diagnostic criteria instead of the antiquated Fuduka, they plainly say - no -when asked about increasing the funding for research, we are told that there are not enough entries, yet about 90% of entries get rejected. -the constant pleading for a name change from patients, advocates and CFSAC members themselves have never been answered. -The recommendations from voting CFSAC members have been collecting dust and by now for such a long list that even CFSAC members get confused. (i.e. nothing gets accomplished) So, all these years, HHS has been playing games, coasting along, giving the semblance of doing and caring when really they are just biding time till………a great opportunity presented to them!!! They saw what the Institute of Medicine did to Gulf War Illness! They saw how the IOM marginalized GWI and renamed it chronic multi-symptom illness (CMI). They basically explained that it is a psychological disease which warrants psychological interventions like GET/CBT and a prescription for anti-depressants. They realized that they can do the same with this illness which has been pestering them for so many years! They have been working behind our backs since early spring of this year. When I say behind our backs, I mean not just patients but, their own appointed voting CFSAC members. At the last CFSAC meeting in MAY, this was already well underway, but there was not even a whisper about this. On August 27th, was the first time that anyone (other than the government people) knew what they were up to. They announced their sole solicitation with IOM for a contract to redefine our disease. This was followed by a great outcry by the patients and advocates. HHS canceled this solicitation due to this great outcry. BUT……..wait….no they didn’t..they were just doing what they do –they were lying and.. Of course, they went behind our back and they did sign a contract with IOM because….they do have to follow THEIR agenda. This caused an outrage from our own clinicians to the point where 35 expert clinicians and researchers signed and sent a letter to HHS stating their opposition to this contract and asking HHS to promptly cancel it. In addition there is a current push by advocates for patients to contact their representatives in congress to put pressure on HHS to cancel this contract. This is just a nutshell overview and of course my view of things. What do you think?