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Now It Is Up To Us
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Posted by: richcarson
January 22, 2008 |
We finally have the opportunity to get rid of the humiliating name, ‘chronic fatigue syndrome’. Patients and our friends and loved ones have endured the embarrassment of this hurtful, trivializing label for 20 long years. We have paid for it dearly in lost dignity and respect. And now it is time for a change.
Patients and physicians launched a grassroots effort called Campaign For a Fair Name in 2006 with the purpose of finding a better name than chronic fatigue syndrome--in United States. Campaign members organized a Name Change Advisory Board (NCAB) to advise patients on alternative names, and the group consisted of eight of the world’s most published CFS researchers and clinicians.
The group unanimously recommended the new name, ME/CFS—a name they felt would stop the damage ‘chronic fatigue syndrome’ was inflicting on patients. They also felt ME/CFS was diagnostically more accurate.
‘ME’ is a multiuse acronym and is the abbreviation for Myalgic Encephalomyelitis and Myalgic Encephalopathy. It has been used to describe the illness worldwide for 50 years, and the majority of patients preferred ME to chronic fatigue syndrome by a wide margin in the 2007 poll conducted on ProHealth’s ImmuneSupport.com.
ME/CFS has met with widespread patient and healthcare support. The largest organization of chronic fatigue syndrome professionals in the world, the IACSF, endorsed ME/CFS by changing its name in 2007 to IACFS/ME, and many of the nation’s leading physicians and researchers have joined with patient leaders to support the change. Indeed, many of these leaders sit on the campaign’s committees—the NCAB and Fair Name Implementation Committee (FNIC).
The most important part of the campaign, however, falls on our shoulders—the patients, because we have the most to gain, or to loose. I am calling on you--on all of us--to do our part to make this important and necessary change a reality. Go to the Campaign’s website, aFairName.org, and sign the petition to support the change. Ask your friends and family members to show their support by signing the petition as well. Most importantly—and I can’t stress this enough—use ME/CFS instead of chronic fatigue syndrome. The name change starts us, and it begins minute we make this simple change.
The Campaign’s website will keep you up to date on the name change, and it is there that you can learn about the name change history, read about NCAB and FNIC members, and share your ideas on the dedicated bulletin board. Importantly, you can learn about the vote where patients will have the opportunity to ratify ME/CFS or decline it and stay with ‘chronic fatigue syndrome’, possibly for decades more.
"Chronic fatigue" is disappearing and a respectable name is taking its place. I hope you will pitch in and help us out. We need your support now. Do it for yourself, for your friends, and for loved ones. And do it for the hundreds of thousands of patients who suffer the humiliation of a disease whose name makes light of their plight.
Yours with determination,
Rich Carson
Patient advocate; FNIC member
ADDENDUM:
The goal of the Campaign is to stop the use of ‘chronic fatigue syndrome’ immediately. Substituing ME in its place accomplishes that perfectly, though it still contains CFS—a problem for most of us who want any vestige of that name erased completely.
It is important to note that 'CFS’ is included in the new name for legal reasons, including medical and disability insurance purposes. The temporary inclusion of 'CFS' also provides a bridge to the body of published ‘chronic fatigue syndrome’ research. Plus, ‘chronic fatigue syndrome’ still has far better name recognition than ME in the United States; so it’s inclusion allows for a smoother transition to 'ME' while 'chronic fatigue syndrome'--CFS--is being phased out.
Patients will have the option of calling the disease ME/CFS--or ME. It is likely that most patients will choose the ME, and will use ME/CFS only when necessary. - Rich |
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thank you so much
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Posted by: chngthname
January 30, 2008 |
I cannot describe the hell I have gone through as a survivor with this disease for almost 24 years. I have been degraded and insulted in emergency rooms, humiliated with disrespectful treatment and disability filings that won't even get my medical records, they just want my psychiatrist's report, because evidently they lump this in as a psych disease and so deprive of us treatment, dignity, and hope. That isn't even to go into how horrible it is that mental illness itself is so stigmatizednd, but as both a treator and a patient, I have found myself shamed into not even talking to doctor's and refusing to go to ER's when I really needed to go, leaving me with further damage to my body. The name change will make a difference if only that it stops the constant joking about how "maybe I have chronic fatigue, too, I'm tired!" etc. Now I have a medical team. Not one of them believes in any of the evidence or medical research, so it's start over time every single time I get sick, and I ultimately get no real treatment. I have been thrown out of doctor's offices- literally- and refused antiobiotics when I simply needed one more week to clear up an infection. I finally gave up and started buying medications on the internet, something I never wanted to do, but at least I didn't get treated like an idiot or puzzled over like I'm the only one with this "strange illness." This is a disease that ruins lives every day. It fills me with shame, the things I've had to go through, but now I am filled with hope. This is a new time for us, and I believe we are going to see some great changes in the next 5 years. Never give up hope, never!!! |
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Posted by: Jerry
January 31, 2008 |
CFS is already psychologized. Linking M.E. with CFS will make it that much easier to psychologize M.E. The only purpose that will be served by linking the two acronyms, "for legal reasons( insurance, disability)," will be to eventually regard M.E. as a psychological disability thereby limiting LTD insurance income. |
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