Gabby Klein was waitlisted for a public comment slot on both days of the 2013 CFS Advisory Committee meeting. I’m happy to publish her comments in their entirety.
My name is Gabby Klein. I became very ill in February 2003 with what was ultimately diagnosed as Myalgic Encephalomyelitis known as Chronic fatigue Syndrome in the U.S. Since that time I have been disabled from work and am reliant on others for my care.
Throughout my eleven year illness, I have suffered a lot but, lately what I have been feeling is anger. This anger has been fueled by the organized effort of HHS to marginalize this disease and dismiss its patients.
The following quote by Hubert H. Humphrey is highlighted on the HHS website:
‘It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadow of life, the sick, the needy and the handicapped.’
As a person ‘in the shadow of life’ I do not feel that HHS has my best interest in mind. Moreover, current actions by HHS have had a great impact in my diminished confidence and my lack of trust in the HHS and its agencies.
The NIH has repeatedly denied the appropriate funding for research into the disease and the CDC has given it the pitiful name ‘Chronic Fatigue Syndrome’. These actions have hampered the outcome of serious research in the disease. To date, the CDC has defiantly refused to remove their dangerous toolkit on their website. Most importantly, the CDC still refuses to include the two day exercise testing, in their current multi-site study, as advocated by the medical community.
It is this perpetuation of ignorance of the real disease and the dissemination of harmful information that has had patients, advocates, clinicians and researchers in the field in an uproar at the latest activity by the HHS to contract with the IOM to re-define ME/CFS. This has been done in the most devious and deceitful way, starting in August when a sole solicitation announcement suddenly appeared on a website…until the recent anonymous Q&A sent out from CFSAC’s listserv which left more questions than answers.
Many really troubling questions remain, such as:
Why did HHS lie on September 4th with their announcement that they were cancelling the sole solicitation when really they were forging ahead full force?
HHS stated that this contract with IOM was with support of CFSAC members. If this was true, why not bring it up at the last CFSAC meeting and take it to a vote?
HHS stated that they do not generally make formal endorsements of clinical recommendations made by nongovernmental groups, as an excuse of why they will not adopt the CCC. Does this mean that HHS will not endorse the IOM definition because the IOM is a non-governmental group?
Is it a coincidence that CFS and Gulf War Illness are the only diseases tasked by the IOM, in its history, to generate a re-definition for? Is this a concerted organized action by the government to distort, minimize and psyhologize these two diseases into oblivion?
There is not enough time for me to mention all the inconsistencies and holes in this nefarious action by HHS. This follows of course the most disturbing non-response by HHS to the very real allegations by some of the voting CFSAC members that they were threatened by the DFO, Dr. Nancy Lee, at the last CFSAC meeting. Is this another misdeed that will be swept under the rug? How can we be assured that these hard working voting CFSAC members can speak and act freely without feeling like they are being gagged?
I strongly suggest that today, CFSAC members make two absolutely crucial recommendations:
1) That 2 day CPET exercise testing be required in the CDC’s multi-site study and
2) That you fully and strongly endorse the letter of the 50 ME experts demanding HHS cancel the contract with IoM to redefine ME and that HHS immediately adopt the ME/CFS Canadian Consensus Criteria.