Personally I do not have the strength to challenge my mainstream health care providers but am continualy being left open mouthed with shock at the bullying, patronising and uterly off hand manner in which I am treated by anyone but my GP...but I think she is afraid to give a definite diagosis, hmmm?????
[Co-Cure] ACT: CFS Patient Groups Cowed By The CDC?
Permission to repost
The only sane and rational response to the evident
failure of the DHHS, CDC and NIH to respond with any sense of urgency to the
public health threat of the epidemic disease Myalgic Encephalomyelitis over the
last 25 years can be found by reading Hillary Johnson’s powerful and forthright
speech titled “The Why” which was presented at the Invest in M.E. London
Conference on May 28th 2009. That is how you address the systemic failure
to address a disease that has destroyed the lives of millions around the globe
– speaking up truthfully and fearlessly about the undeniable facts. I applaud
Hillary for telling it like it is!
I ask all “CFS” patient organizations to read this
speech again and explain why they have not addressed the incriminating facts in
their meek testimonies to the CFSAC. Why are they not exposing the elaborate
web of deceit that ignored the evidence for this epidemic disease, replaced it
with a phantom creation called CFS, branded it as an unexplained illness,
restricted research to the genetics of stress, and cast patients as defective,
inferior human beings? A modern day eugenics program has been revealed in the
words of Reeves himself, and you have little to say that would radically alter
this inhumane and unforgivable state of affairs?
I read your testimonies and see nothing but
suggestions for tweaking this indefensible program. Remove Reeves - but the CDC
will find a similar replacement; make available the CDC’s research data since
1984 - on its phantom creation CFS; request that it abandon its Empirical CFS
Definition - ignoring the preceding false definitions; collaborate with other
researchers and organizations - under the CDC’s self-proclaimed supremacy;
partner with the IACFS/ME - whose conferences still unashamedly promote
psychosocial research, or the CAA - who benefited financially in the branding
of CFS; all calling for more of the same research to nowhere.
Hillary asks if we are more comfortable being
labelled as mental patients, and from the evidence of these testimonies it
appears that our so-called charities would rather let the false “CFS” construct
become more entrenched while millions of dollars are wasted on damaging
psychosomatic theories and not on urgently needed biomedical research. Not one
patient group is standing up for the scientific facts that have overwhelmingly
demonstrated that M.E. is an infectious and inflammatory disease of the central
nervous system, that this was the disease the CDC redefined as “CFS”, that the
disease is being transmitted through us and the blood banks without warning to
the general public, and M.E. patients are dying because of institutionalized medical
ignorance and neglect.
Not one group is demanding a Congressional Inquiry
into the institutionalized denial of Myalgic Encephalomyelitis, demanding that
the DHHS, CDC and NIH recognise the infectious disease M.E., and for the
creation of a definition that addresses the neurological, immune, autonomic,
cardiac and mitochondrial dysfunction together with the known biomarkers of the
disease, or that the CDC renounce its CFS program and alert the public to this
pandemic, or pushing for politicians and human rights groups to urgently
address this evident public health crisis. Not one group will acknowledge that
M.E. is the crisis! What is the gain to these groups by cowing to the CDC’s
“CFS” and not standing up for M.E.?
These groups do not protest against the request forwarded to newly appointed CDC director, Dr. Thomas Friedan, that “CFS activities” be moved from the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch - to the National Center for Chronic Disease Prevention and Promotion, a serious downgrade of priority. Not one group is demanding that the NIH place M.E. at the National Institute for Neurological Disorders and Stroke with a formidable budget - they do not question the CDC’s “CFS” being housed at the Office of Research into Women’s Health, knowing that no neurologist or other specialist will ever hear of the infectious disease Myalgic Encephalomyelitis. Whose side are these groups on?
Sadly, if all these groups and individuals are
content to quietly ask the CDC to tweak its “CFS” program then another
generation will have to fight this battle all over again and those of us beaten
by this terrible disease will struggle to live out our final days of living
hell in misery.
Heroically, the renowned author of 'Osler’s Web' has
spoken publicly and fearlessly about what we now know were outbreaks of Myalgic
Encephalomyelitis and not some “new illness” that the CDC allegedly
Why can’t all patient groups call for truth and justice
for M.E. sufferers with the same fearless voices?
Will anyone hear Hillary’s brave and timely call
for us to be more “radioactive”, before it really is too late?