Nielk
Senior Member
- Messages
- 6,970
Since the Lake Tahoe outbreak of the distinct neuroimmune disease myalgic encephalomyelitis (ME), the US Centers for Disease Control and Prevention (CDC) has extended all their efforts in minimizing, conflating, misbranding, wrongly defining the disease in an attempt to bury the facts and reality of this severely disabling chronic disease affecting an estimated million American men, women and children. The purpose of their malfeasance is to evade and deflect responsibility for this burdened pandemic.
One of CDC's methods of cover-up is to refuse to adopt and to diverge from the authentic criteria for ME authored by international ME experts (Ramsay’s, CCC & ICC). They have managed this by producing and/or acquiring faulty, overly broad criteria that do not describe the actual immunological, neurological and infectious nature of the disease. Their latest offense is the acquisition of the IOM/SEID criteria. They have used the Institute of Medicine (IOM) (now called National Academy of Medicine) which is perceived to be an independent private organization when in effect most of their work is paid for by HHS - not exactly an unbiased partner. The charge and parameters of the IOM work were set up and controlled by HHS (leaving out many studies into the immunological and infectious nature of the disease) They have done this in an attempt to give their re-branding and redefining effort false legitimacy. In actuality, this new criteria is yet another vague, ill-defined, fatigue-based definition.
Organizations who claim to represent #pwME like SMCI and MEAction have banded together with the CDC to aid in legitimizing this bad definition which is overly broad and does not define ME.
They have done this by:
Their latest "service" to the CDC is with their guileful inclusion of the 'consideration of the recommendation from the IOM relating to ME/CFS' in their proposed Senate resolution S.Res.508 - dated May 15, 2018, introduced by Senator Markey and co-sponsored by Senators Collins, King, and Van Hollen to raise awareness about ME/CFS of the following language:
- Sponsoring and arranging a press briefing immediately after the release of the report.
- Collaborating with CDC with their Technical Development Workgroup (TDW) to aid in embracing and inscribing the faulty definition to the CDC website (list of participants). MEadvocacy, the patient organization representing #pwME issued a blog explaining why they opted OUT of this workgroup.
- Collaborating with CDC to work on the new toolkit for healthcare providers and medical continuing education to teach and disseminate the IOM/SEID criteria.
"Resolved, That the Senate
...
(3) encourages—
(A) the National Institutes of Health and other Federal agencies to work with experts, stakeholders, and individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to—
(i) consider the recommendations of the National Academies of Sciences, Engineering, and Medicine relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;
…”
Remember the National Academies of Sciences was formerly called the "Institute of Medicine". So, the Resolution which was drafted by MEAction and SMCI includes a push to implement the IOM recommendations. Since these organizations were the ones who suggested the draft of the Resolution, they could have added anything, yet they proactively suggested adopting the IOM recommendations. [edited to include exact wording of the specific part of the Resolution and to clarify]
Read entire blog here.