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XMRV and XAND
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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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Living With ME/CFS
- My Story: A brief introduction to my history with CFS/M.E.
- Good MORning, CEEfids
- Having to give up work
- What is the "fatigue" like in "Chronic Fatigue Syndrome"?
- Spacing Out at the Ballpark
- Why I hate the term "fatigue"
- Sadness, Frustration, and Depression
- Essay on R.E.D.D., or RnaseL Enzyme Dysfunction Disease
- My Ampligen Diaries
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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- Statement to the CFSAC, October 2009 - Who is the CFSAC for?
- Statement to the CFSAC, May 2009 - The Orwellian NewSpeak of M.E. and CFS Studies
- Statement to the CFSAC, September 2008 - The CDC's definition for CFS no longer fits the patients for whom the name "Chronic Fatigue Syndrome" was created - so who is monitoring our disease?
- Statement to the CFSAC, May 2007 - Why does the CDC claim "there are no tests and there are no treatments" for Chronic Fatigue Syndrome?
- Statement to the CFSAC, November 2006 - Address existing tests and treatments
- Statement to the CFSAC, July 2006 - CDC has secretly abandoned Fukuda definition
- Statement to the CFSAC, April 2006 - ME-CFS Documents and Recognizing M.E.
- Statement to the CFSAC, September 2005 - Casey's Story
- Statement to the CFSAC, April 2005 - Disability
- Statement to the CFSCC, November 1999 - Ampligen
- Statement to the CFSCC, April 1998, on behalf of WECAN
- Statement to the CFSCC, October 1997, on behalf of WECAN:
- Statement to the CFSCC, May 1997, on behalf of WECAN
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]
This website is owned by Mary Schweitzer. You may reach me at:
marys@cfids-me.org
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