Beware of Aiding in the Burial of ME!

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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:

  • 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.

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:

“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]

These are the IOM recommendations they are alluding to:

1 – Physicians should diagnose ME/CFS (with IOM criteria), and a new ICD code should be assigned. (please note that  “SEID” or  “ME/CFS” has no US ICD classification or code. The ill-defined conflated term violates ICD rules by combining diagnoses from different ICD sections).

2 – HHS should develop a toolkit for medical practitioners (based on the IOM).

3 – A multidisciplinary group should reexamine the IOM criteria when firm evidence supports modification, or in no more than 5 years.

4 – The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace ME/CFS for patients who meet the criteria set forth in this report.

The above Senate Resolution is in recognition of May International Awareness month for the disease.  It details some basic stats (some faulty one like women are 4 times more likely to get the disease and neglects to include the cluster outbreaks and blood donation bans due to infectious components and/or etiology as well as state this disease kills patients), the financial burden and the general need for funding, medical care, and education.  Why not just stop it at that? Why did MEAction and SMCI insert the IOM recommendations in this resolution – except for aiding CDC in their burial of the disease, myalgic encephalomyelitis?

Myalgic encephalomyelitis is the distinct severely disabling, multi-system chronic disease that appears in epidemic and a sporadic form.  The symptoms of ME are numerous and include but are not limited to the following: post-exertional collapse, muscle and joint pain, enlarged lymph nodes, chills, low-grade fever, vertigo, extreme fatigue and weakness, cognitive impairment (delayed processing, aphasia, short-term memory loss, etc.), cardiac problems, orthostatic intolerance, sleep dysfunction, headaches, allergies, mold and chemical intolerance, frequent reactivated infections and co-infections.

Myalgic encephalomyelitis is not chronic fatigue syndrome nor is it systemic exertion intolerance disease nor is it chronic fatigue. One cannot claim to represent the entire community when, in effect, not only are they advocating for and promoting recommendations for faulty criteria but, they are aiding in the full burial of the distinct disease ME.

NOTHING ABOUT US WITHOUT US

Organizations and advocates who promote the IOM criteria DO NOT represent #pwME-ICC.  Falsely branding themselves as ME organizations and advocates is deceptive and harmful to this severely ill patient population.  Their attempt to speak for #pwME-ICC when approaching government officials or serving on government or private committees concerning the disease is not authorized by #pwME-ICC.  They are in effect aiding CDC to conflate and confuse while attempting to bury ME-ICC.

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  1. Pingback: Double Speak and Betrayal from Within | Relating to ME

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