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Life with ME/CFS
Essays by Mary Schweitzer

Please browse these links to essays I've written about the disease I have known as Myalgic Encephalomyelitis (M.E.), and as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). There is no clinical criteria for this disease in the U.S. For the time being, then, we should all make use of the recently adopted Canadian consensus document for clinical diagnosis and treatment, which uses the name ME-CFS.

If you are a fellow patient, sit down and pour yourself a cup of brain fog; I hope you see yourself in some of these essays. If not, this is your chance to find out what our lives are like.

Follow these links to different sections of the page:
Living with ME/CFS
Testimony to the CFSCC and CFSAC
Essays on ME/CFS

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Testimony to the CFSCC and CFSAC

The CFSCC (Chronic Fatigue Syndrome Coordinating Committee) and CFSAC (Chronic Fatigue Syndrome Advisory Committee) were commissioned by the U.S. Congress in 1996 and 2003 as arenas to bring together the patient community, medical specialists, and agencies that are supposed to work with both. They are supposed to give advice to the Secretary of Health and Human Services (DHHS) of the U.S. Federal Government. Patients are permitted to give limited testimony at the end of each meeting. Here is some of the testimony I have given over the years.

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Essays About ME/CFS

  • XMRC, XAND, CFS, and M.E.
  • "At Fatigue's Root" you'll find neurasthenia, but nothing resembling M.E. or CFS [March 2008]
  • Problems continue within U.S. government agencies
  • Stress and Chronic Illness: CFS/M.E. and Fibromyalgia, © 1999
  • Continuing Misstatements by CDC to Public, December 1999
  • What I want for Christmas ... is respect for people with this disease.
  • The True Costs of Public Apathy Towards Chronic Fatigue Syndrome (CFIDS)
  • Review of Elaine Showalter's Hystories
  • Dealing with a flawed Social Security Disability system: Guilty until proven innocent
  • A PWC Talks to Psychologists
  • CFIDS as a disease "for women"
  • Change the Name: Abandon "CFS" and Return to the name "M.E." [presented to the AACFS conference in Boston, October 1998]
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