The Chronic Fatigue Syndrome Advisory Committee (CFSAC) met January 12 and 13, 2017. Here is the meeting agenda. The following was my call-in testimony.
Hi, my name is Gabby Klein. I am a patient advocate and blogger. I have been ill with ME for 14 years.
As I sat down to write, I thought of our current situation as ME patients at the start of the year 2017. I thought about the comparison of the state of ME patients today to a decade or three ago and became aware that there have been next to no improvements made throughout the years. Due to HHS neglect and misdeeds, over 30 years after the Lake Tahoe outbreak:
- Few doctors nationwide have the knowledge and experience necessary to properly diagnose and care for patients.
- The same harmful GET and CBT therapies continue to be recommended by HHS.
- There are no FDA-approved drugs.
- NIH still spends a minuscule amount of money on a disease with an enormous economic, mortality and quality of life burden.
- The CDC and other HHS agencies continue to spread incorrect, harmful information on their website and in their continuing medical, educational material.
- The unscientific and demeaning name, CFS, is still being used and the government still controls and fabricates incorrect and overly broad definitions – like the IOM.
- HHS continues to cover up their negligence and malfeasance with the creation of more committees, workshops, and working groups – giving the false impression that they are actually doing something for the patients.
- There is a continuing lack of transparency as well as a withholding of crucial information from the patient community. The recent incident of NIH’s invitation – by Dr. Walitt with Dr. Nath’s approval, to ME denier Dr. Shorter to lecture on the false history of the disease, was a prime example.
- False promises are frequent as in Dr. Collins promise of a considerable increase in funding for ME/CFS. It has in reality resulted in mere crumbs – an increase of $7 to 8 million for a million US disabled patients! Moreover, in his eight years of service as NIH director, Dr. Collins has never mentioned ME/CFS when speaking to the Senate Appropriations Committee advising on specific increases in NIH funding.
Until HHS publically apologizes to the ME community for their three decades of neglect and malfeasance and until the time when HHS
- exclusively uses our expert criteria – such as the CCC, ICC, or Ramsay’s
- uses the correct name myalgic encephalomyelitis (ME)
- properly educates medical practitioners
- and appropriates NIH funding to the figure of a minimum of $250 million a year- which is on par with other similarly burdened diseases
I will continue to challenge and hold the federal government accountable.