A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE

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We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an internationally recognized neurological disease, be also formally recognized as a distinct clinical entity in the United States by the National Institutes of Health and the Centers for Disease Control. It is time to make the case definition/diagnostic criteria explicit in the name.

Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly defined, misunderstood, controversial syndrome which remains underfunded and underresearched. The name Chronic Fatigue Syndrome itself has trivialized the illness and further subjected these patients to incredulity and ridicule. The CFS rubric has not only neglected and failed to help those with ME, it has harmed them. ME patients will not improve with cognitive behavioral therapy (CBT) or graded exercise (in fact, exercise will make them worse) - yet these are considered treatments for CFS. Simply "renaming" CFS will not solve this problem.

ME should not be considered a subset of CFS, for the hallmarks of ME will not be present in the population of CFS patients once the Ramsay criteria are established in the US. Patients with Myalgic Encephalomyelitis under the CFS criteria must wait for six (6) months before acquiring a diagnosis, a critical period in which possible recovery is diminished by lack of proper treatment. The ME definition does not require a six month wait. (See Ramsay Definition at: http://www.egroups.co.uk/message/ME-itis_NOW/2.)

We, the undersigned, are "tired of being sick, not sick of being tired."



To read a complete discussion of the points outlined here, we suggest you
visit http://www.egroups.co.uk/message/ME-itis_NOW/

8574 Signatures

  • Deanna C
    • Country/State
    • Kentucky
  • Christina P
    • Comments
    • What you in USA done, will help us in Europe
    • Country/State
    • Denmark
  • Lisa W
    • Comments
    • When I first became ill, I lost my self-employed health insurance (the company turned out to be a Ponzi scheme). This was actually a blessing because it forced me to do my own research into the seemingly unrelated symptoms that had 3 doctors stumped. I found myself described in a book called Foods That Fight Pain and after securing insurance, I took this info to my doc and said, "look, there's someone else just like me." After a CBC and some xrays, I then was given an "oh, by the way, you have..." diagnosis as he was leaving the reception area where I was paying my bill. WHAM! I went from biking and hiking, working and loving life, always helping others to being (with time) practically bed-ridden! It's the pain that is the most difficult to deal with! I've held a real job since I was 13 and it was VERY difficuclt to accept this and make the necessary changes. I've paid my taxes, volunteered and done right by people. Now that I'm sick I'm stuck because of this disease's NAME? CHANGE THE NAME!
    • Country/State
    • USA
  • Bonnie L. R
  • Susan A
    • Comments
    • Desperately needed: For more physicians in more cities to be educated about this disease and kept informed about treatments that are working; a cure, and until then, better and more widespread treatment options and availability; an end to the perception by both physicians and lay people that it is a mental illness or "all in the head."
    • Country/State
    • Louisiana/USA
  • Robert P
    • Country/State
    • USA/TN
  • Darlene De F
    • Comments
    • diagnosed 1988 and with fibromyalgia
    • Country/State
    • diagnosed in CA now live in TN
  • Dan H
    • Comments
    • The provision of treatment by the UK NHS is awful. Trying to treat a physically debilitating disease with GET, CBT and other psychological means is disgusting.
    • Country/State
    • UK
  • Dale M
  • patricia F
    • Country/State
    • WISCONSIN
  • Cherry T
  • Cheryl B
    • Comments
    • I was told I had M.E. in 1991, however the Infectious Disease Speicalist couldn't put M.E. on my mediical records, as the CDC chose the inaccure name of chronic fatigue syndrome which is only 1 of about 40-50 symptoms you can have with M.E. CFS is a waste basket diagnosis for many illnesses that end with the same set of syptoms. M.E. is started by a virus and often outbreaks. usingt the term CFS is not only inaccurate, fatigue is not a disease or illnesses, it has bbeen severely determinatal to ME/CFS survivors. 1991 survivor near dead = We all need anwers to find the cause, supports, research treatment,s instead of leaving us in our beds in the back rooms hidden away. The government would be making alot more money in taxes with healthy working people, instead of bed hoouse confined on disability
    • Country/State
    • Canada, Ontario
  • Dana R
    • Comments
    • Need more research and a cure.
    • Country/State
    • USA/ AR
  • Debbie A
    • Country/State
    • USA, Alaska
  • Deborah A
    • Country/State
    • South Carolina
  • Danette J
    • Comments
    • Fatigue is just a symptom, We have multiple symtoms and yeah it is a syndrome. The unexplained fatigue you have on your criteria needs to be changed. The fatigue isnt unexplained -it is a mitochondria failure that causes our bodies and minds to have the lack of energy to function. MRS's of the brain, muscle biopsies, ATP profiles have all proven this. Wake up CDC - we have more than just fatigue.
    • Country/State
    • Blacksburg, VA
  • Brenda Clark B
    • Comments
    • these are very real diseases, we may look fine but a good day for me is still very painful & personally there is a lot i am unable to do that others take for granted!
    • Country/State
    • Canada
  • p a
    • Country/State
    • usa
  • B. F
    • Country/State
    • Ontario, Canada
  • Sarah L
    • Comments
    • В
    • Country/State
    • Scotland, UK
  • Daniel T
    • Comments
    • Stop the suffering: Stop wasting money on psychiatric research on ME/CFS. Patients deserve an honest research into the true cause of the illness and treatment to fully recover!
  • Geoffrey M
    • Comments
    • Fibromyalgia and ME sufferer
    • Country/State
    • Malta
  • Christine P
    • Country/State
    • United Kingdom
  • sheila f
    • Country/State
    • mass.
  • Danielle P
    • Country/State
    • Canada
  • Darlene C
    • Comments
    • Canada tends to follow the States, so I'm all for helping get this passed in the US!
    • Country/State
    • Canada
  • christine p
    • Comments
    • Both my parents have this terrible,and painful disease they deserve to be taken seriously
    • Country/State
    • Woodland Hill,ca
  • Christos C
    • Comments
    • В
    • Country/State
    • USA, CA
  • Christiane S
    • Country/State
    • Canada
  • Darren
    • Country/State
    • Northern Ireland
  • Dianne B
    • Comments
    • ME is not a tired syndrome,It is a disease.
    • Country/State
    • New Zealand
  • Cinda C
    • Comments
    • You must do more now to eliminate the causes of ME and CFS.
    • Country/State
    • Virginia- US
  • Holly C
    • Comments
    • we need respect but above all, we need quality medical care
    • Country/State
    • NY
  • Carla G
  • Tammie P
    • Country/State
    • USA/IL
  • david p
    • Comments
    • В
    • Country/State
    • В
  • David Alan G
    • Comments
    • Recognize This Disease Now!
    • Country/State
    • USA/Arkansas
  • Christine B
    • Comments
    • Diagnosed with ME since 1980, no treatment available and am now bed and home bound. It is time ME is given the attention it deserves!
    • Country/State
    • USA - Oregon
  • Claudine M S
    • Country/State
    • New York
  • Clive C
    • Country/State
    • scotland
  • Cloe C
    • Country/State
    • USA/NV
  • Cherie L B
    • Comments
    • Please know this is debilitating.
    • Country/State
    • Florida
  • Carolyn M
    • Country/State
    • NM
  • Cami M
  • Cindee S
    • Comments
    • For 28 YEARS I have suffered from ME and the fact that you have given permission to every Dr. to NOT DIAGNOSE ME EARLY so I would have HAD A CHANCE TO RECOVER!
    • Country/State
    • USA
  • Christina M. H
    • Country/State
    • USA/Virginia
  • Camilla
    • Country/State
    • Norway
  • Deborah C
    • Comments
    • this disease is debilitating plesae recognise it!
    • Country/State
    • Australia
  • Deborah L
    • Comments
    • We have waited LONG ENOUGH for a recognition of this terrible disease. ME defines the disease state that I have lived in for 22 years. We need to be focused on real research rather than obfuscation in order to allay the suffering, halt the indignities that CFS- the name- the politico-subversion of patients that through no fault of their own are desperately ill. We need answers and help.
    • Country/State
    • CA, US
  • Christopher M. V
    • Country/State
    • USA/Arizona