The end of 2018 is fast approaching.  MEadvocacy has continued efforts advocating for people with myalgic encephalomyelitis (ME) as defined by our ME experts using the International Consensus Criteria (ICC). We are currently putting the finishing touches to the upgrade of our website in order to deliver a better output and be more user-friendly. We are grateful for the generous donations making it possible to update and continue our website. Continue reading

The CDC’s program specialist for ICD-10 Coordination and Maintenance Committee would not defer the Nov 13, 2018 due date for comments on the proposal to move CFS to the same umbrella heading as ME and the addition of a new code for SEID under the same heading as well - Other disorders of the brain. In an effort to protect patients with ME from being harmed by improper classification, MEadvocacy Advisory Committee has submitted a comment opposing this change. We urge all patients and advocates to email C&M Committee to voice the concern that ME patients are not well served by this change. Continue reading

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). Continue reading

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.   Continue reading

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. Continue reading

  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.)    Continue reading

  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. Continue reading

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). Continue reading

  “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).  Continue reading

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.  Continue reading