To: The President and Congress of the United States of America, U.S. Department of Health and Human Services,
U.S. National Institutes of Health, and U.S. Centers for Disease ControlWe, the undersigned, respectfully request that the United States health agencies adopt the international (Canadian) “Consensus Document” for the diagnosis and treatment of the disease therein named Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or “ME/CFS”.
In the 20 years since the U.S. CDC adopted the name "chronic fatigue syndrome" for the disease called "Myalgic Encephalomyelitis" for fifty years abroad. very little has changed for patients diagnosed with this disease. The CDC itself admits that of the one million Americans who are estimated to have this disease, fewer than 15 percent have a diagnosis. At the same time, patients whose symptoms bear no relationship whatsoever to Myalgic Encephalomyelitis (M.E.) have been increasingly given a CFS diagnosis, making it more difficult to isolate a homogeneous group for research into causes, biomarkers, objective tests, and treatments.
The CDC’s informational website for the disease states: “There are no tests and there are no treatments.” What can patients, or their physicians, do?
It is time for the United States to directly address the needs of one million Americans suffering from a poorly understood, debilitating illness. The best way to begin would be by adopting the existing international Consensus Document for diagnosing and treating ME/CFS.
SIGNATURE . . . . . . . . . . . . . . . . . . . . NAME . . . . . . . . . . . . . . . . . . . . ADDRESS . . . . . . . . . . . . . . . . . . . . STATE . . ZIPCODE . . NATION
Instructions for Emailing:
If you agree to this, copy the petition into an email and write,
"I agree with this petition."
then put your name, home address and zipcode [if you want - that is for Congressmen], state [if you want; that is for Senators] and nation.
Send the email to me at:
Email address for petition: intlconsensus@comcast.net.Instructions for getting signatures on a hard copy of the petition:
A printable version of the petition by itself is here:
http://www.cfids-me.org/petition.Print the petition out and get as many signatures as you can - even if it's only one. Send it by regular mail (snailmail) to me at this address:
Adopt the Canadian Consensus Document for ME/CFS
P.O. Box 189
Elk Mills, MD 21920Be sure to also download a copy of the Overview of the Canadian Consensus Document from the ME-FMS Society of Canada, so you can show people what this is about. You can find a copy here:
http://www.mefmaction.net/Patients/Overviews/tabid/122/Default.aspx
Other documents useful in comparing the CDC's "Toolkit for Professionals" for CFS with the Canadian Consensus Document can be found here:
http://www.cfids-me.org/index.html#consensus, and here:
http://www.cfids-me.org/petitiondrive.html.Congress will take a petition with real signatures more seriously than one by email, so if you can get it signed and mailed, that would be great.
However, this is a petition by and for people with a serious illness. If using the U.S. mail is too difficult for you, then sign it electronically as explained here:
http://www.cfids-me.org/petitionlong.html#email.Why do we need this petition? Click on the following link:
Purpose of the petition for the U.S. to adopt the Canadian Consensus Document for ME/CFS.
Feel free to forward the purpose of the petition to anyone you want, or print it out for a handout. It is supposed to be instructional. Send the petition around to anybody you think will sign it. We can use all the help we can get.Take it all to your support group. Take it to your doctor's office and ask if you can leave it there. Ask a local shopping center if you can set up a card table and chair. If you have more ideas, we can add them here. Let's get this out.
If you're the only one who signs it, that's okay! Send it on. Everybody counts.
Your email address and snailmail address will remain private.
I personally guarantee that no one is going to ever use either to send spam or ads or requests. This is free -
that's what makes internet so great!I will take whatever signatures we have (including the 115 we already have from the ipetition website) by May 5 to Congress. If we get more signatures, then every six months I will take it again to Congress. If anyone wants to accompany me, the more of us the better!
Hard copies of signed petitions should be mailed to:
Adopt the Canadian Consensus Document for ME/CFS
P.O. Box 189
Elk Mills, MD 21920Congress will respond better to hard copies of petitions with real signatures on them. But email "signatures" are better than nothing, and nobody understands being sick better than we do!
Signed e-petitions go to the email address:
intlconsensus@comcast.net.If you have private comments, including ideas and volunteers to make this work, write to me,
Mary M. Schweitzer
me-cfs@comcast.net
Information page
Essays on M.E. and CFSFinally, if you want to enter into a discussion about the petition (and others regarding the name of the disease), go to this website, pick a name and password for yourself, and sign in!
Petition discussion website
(Write the name and password somewhere you won't lose it - like the inside of your phone book - because we all forget things like this. Why waste valuable energy trying to remember something when our disease impacts memory?)Hopefully, we can move on from the stalemate that has characterized our disease for the past twenty years.
INVISIBLE NO MORE!