Deferral Needed for Proper ICD Proposal Evaluation
As MEadvocacy reported on October 6, 2018 (read blog here), a meeting took place on September 11 and 12, 2018 by the ICD-10 Coordination and Maintenance (C & M) Committee Meeting of the National Center for Health Statistics (NCHS) - the federal agency under the auspices of Centers for Disease Control and Prevention (CDC) in charge of the ICD-10-CM classifications of diseases in the US.
Although the topic of chronic fatigue syndrome (CFS) did not appear in the meeting agenda, Donna Pickett presented proposals for changes to the ICD-10-CM coding for CFS, myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and systemic exertion intolerance disease (SEID).
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SEID Classification Usurping ME Must Be Stopped
STATING POSITION ON THE ICD 10 PROPOSAL
It has come to MEadvocacy’s attention that a meeting for US ICD-10-CM coding by the Coordination and Maintenance committee took place on Sept. 12, 2018 with a discussion on the topic of changes to chronic fatigue syndrome (CFS) coding. These changes will affect the diagnostic coding for myalgic encephalomyelitis. This topic was not part of the agenda and ME stakeholders only found out about it two weeks later. (see details of the meeting in Gabby Klein’s blog here)
MEadvocacy is reviewing the proposal for placing Systemic Exertion Intolerance Disease (SEID) and Chronic Fatigue Syndrome (CFS) in the same ICD heading under Brain Disorders with myalgic encephalomyelitis.
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DROPPING THE CURTAIN ON CFSAC
The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002.
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Severe ME Day 8th August, 2018: Understanding & Awareness
Artwork by Stonebird - raising awareness of Severe/Very Severe ME
“In my experience (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” ( Daniel L. Peterson, M.D.)
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Help us Revitalize our Website & Further Advocacy Work
Thanks to one of our new volunteers, Olga Pinsky, our website is scheduled to get a revitalization. We are excited to have her bring a new look to our website with improved ME user-friendly functions.
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Request to Sign Petition #PwME4ICC & Other News
Below is our latest email. If you didn't receive this information, please consider joining or updating your email information.
PETITION TO SIGN FOR ADOPTING ICC
A new change.org petition has just been posted demanding US government adopt the International Consensus Criteria (ICC) for diagnosing, research and treatment of ME patients. Hashtag for this petition is #PwME4ICC (People with ME for ICC).
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The 26th ME Awareness Day: Still Fighting Unscientific Claims
“The highest mode of corruption is the abuse of power.”
― Auliq Ice
MAY 12 AWARENESS DAY
The late patient and staunch advocate, Thomas (Tom) Hennessy Jr, realized the need to have a dedicated day to raise awareness for the diseases he championed for - myalgic encephalomyelitis (ME) and other complex immunological & neurological diseases (CIND) - such as fibromyalgia (FM), Gulf War illness (GWI), multiple chemical sensitivity (MCS), and chronic Lyme disease (CLD).
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MEadvocacy's Comment To NINDS/CDC CDEs Draft & See What You Can Do
The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements (CDE) Working Group and the National Institute of Neurological Disorders and Stroke [NINDS]/Centers for Disease Control and Prevention (CDC) CDE Team released their draft version of the ME/CFS CDEs for public review on 12/15/2017.
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Advocacy Lessons Learned from Martin Luther King, Jr. as We Honor Him
File:USMC-09611.jpg. (2017, September 15). Wikimedia Commons, the free media repository.
Guest editorial by Jerry Seidel, President May12.org*
Martin Luther King Jr. (MLK), Baptist minister and civil rights activist, never organized sit down talks with grand wizards of the Ku Klux Klan (KKK).
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Testifying at CFSAC Dec 2017 and Looking for Changes in 2018
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) held meetings on Dec. 13 & 14, 2017. Videos and transcripts of the meeting can be found here.
CFSAC provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.
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