A number of you have asked about the status of the Fair Name Campaign, so I thought this first newsletter following Awareness Day would be a good time to give you an update. First, and most importantly, the patient community has jumped on board. Your feedback has been positive and encouraging.
Not surprisingly, the vast majority of patients favor adopting a new, fair name, as 'Chronic Fatigue Syndrome' is universally perceived as trivializing, dismissive, and thoroughly inaccurate. And, while there are a few people who have other preferences, most of you strongly support adopting the acronym ME/CFS.
Second, and equally as exciting, patient organizations and several in the medical community have also picked up the banner. As a result, we're already starting to see ME/CFS appear more often. Some examples:
In January 2007 the IACFS voted to change its name to IACFS/ME.
The big conference being held in London on May 23 is called the International ME/CFS Conference.
Researcher and clinician Dr. Charles Lapp has announced that all of their forthcoming research papers will use ME/CFS rather than Chronic Fatigue Syndrome.
When we began the Fair Name Campaign, our intention was to have a vote on whether or not to accept the Name Change Advisory Board's recommendation of ME/CFS. However, since that time, the campaign has taken on a life of its own, as the use of ME/CFS in both the medical and patient communities is growing steadily. Therefore, we are shifting our focus, from a vote to implementation of the name that is increasingly being recognized and accepted - ME/CFS - and moving forward with the guidance of respected patient leaders.
A New Direction
Since the formation of the Name Change Advisory Board was first announced in January 2007, I have tried to make it clear that this effort has to be driven by patients, patient organizations and the medical community. Now several patient leaders have stepped up, are taking charge, and are pushing the campaign forward. Some of those leaders include:
Karen Lee Richards – co-founder of the NFA and patient expert on ChronicPainConnection.com;
Cort Johnson – founder and editor of the Web site Phoenix Rising, which serves the ME/CFS and FM communities;
Marly Silverman – founder of P.A.N.D.O.R.A, an organization supporting patients with neuroendocrineimmune disorders; and
Dorothy Wall – author of Encounters with the Invisible: Unseen Illness, Controversy and Chronic Fatigue Syndrome.
Just a few of the exciting new things you can look forward to include:
A completely redesigned Website (to be launched in September) that will give you more in-depth information about the Fair Name Campaign, answers to your questions about the name change, and information about what you can do to help. The site will also be updated regularly, keeping you informed on all the latest news about the progress of the name-change effort.
An accelerated pace, with a more comprehensive strategy for publicizing the importance of a fair name for patients.
Celebrity endorsements featuring celebrities who are diagnosed with ME/CFS or who have family members suffering with ME/CFS.
The several hundred patients who have volunteered to help with the campaign will be contacted over the summer with suggestions of things you can do to move the campaign forward.
Clearing Up the Confusion
The sole intent and purpose of the Fair Name Campaign is to give patients a respectable name for their illness. Studies have proven that patients diagnosed with Chronic Fatigue Syndrome are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. The CFS name not only affects the quality of treatment patients receive, but it also affects the amount of money committed to research. It’s hard to convince those funding research to spend their money on people they think are just tired all the time. Patients deserve to be taken seriously, to have a name for their illness that preserves their dignity, and to receive appropriate medical care.
With this in mind, the committee of patient leaders has spent several months researching and considering each and every concern addressed to and about the Fair Name Campaign. The biggest debate regarding the name change seems to be whether the ME should stand for Myalgic Encephalopathy or Myalgic Encephalomyelitis.
To give you a little background, the Name Change Advisory Board - which was composed of eight leading ME/CFS researchers and clinicians - originally recommended ME/CFS, with the ME standing for Myalgic Encephalopathy. When a few patients strongly vocalized their objections to using encephalopathy, we attempted to compromise, saying the ME could stand for either Myalgic Encephalopathy or Myalgic Encephalomyelitis. In retrospect, that was not a good solution.
There are good, valid arguments on both sides of this issue. Each name has its pros and cons. But in the end, it was felt that we should abide by the recommendation of the Advisory Board – to use Myalgic Encephalopathy as the ME in the acronym ME/CFS. The board members felt strongly that Myalgic Encephalomyelitis should not be used because not every patient diagnosed with CFS had evidence of brain or spinal cord inflammation, which is a key component for a diagnosis of Myalgic Encephalomyelitis. Dr. Nancy Klimas, president of the IACFS/ME, stated that inflammation of the central nervous system is identifiable in 80% of patients, and therefore excludes 20% of patients who also have classic CFS symptoms.
Myalgic Encephalopathy, on the other hand, is a broader, more comprehensive term, and simply means a disorder of the brain. This includes the patients with inflammation, as well as the 20% of patients in whom inflammation cannot be identified. In a word, Myalgic Encephalopathy includes all bonafide CFS patients, whereas Myalgic Encephalomyelitis excludes 20% of these patients. Which category do you think you would fall into?
We want to emphasize the fact that we are in no way trying to minimize or change the name of Myalgic Encephalomyelitis. If anything, we hope this will demonstrate the severity of Myalgic Encephalomyelitis and allow it to stand on its own. If you have evidence of brain or spinal cord inflammation and have been diagnosed with Myalgic Encephalomyelitis, you still have Myalgic Encephalomyelitis. We don’t expect you to change the name of your illness to ME/CFS.
There is one other concern some have expressed about using Myalgic Encephalopathy that we would like to clear up. They are afraid ME/CFS patients will be lumped in with people who have mental disorders. We talked with several medical experts and they all assured us that Myalgic Encephalopathy refers to an organic brain disorder and in no way includes mental disorders. (For a more complete description of encephalopathy, please see the footnoted definitions below.)
I’m excited about the new energy and enthusiasm that has been injected into the Fair Name Campaign and hope you will be, too. If you’d like to sign the petition or volunteer to help, or submit a comment or question, you can do so now on the Fair Name Campaign Web site (http://www.afairname.org/volunteer.cfm). Don't forget to watch for the announcement of our improved Campaign Website in September.
Whatever you do, don't allow yourself to be dismissed as someone who has "chronic fatigue." We can right this wrong for ourselves, for our families, and for a medical community still in need of a fair, accurate name for a disease that causes immeasurable suffering.
Keep the faith,
Your supporter and advocate,
Source: Medline Medical Dictionary:
en-ceph-a-lop-a-thy: plural -thies:
a disease of the brain; especially one involving alterations of brain structure
Source: New Oxford American Dictionary
noun Medicine a disease in which the functioning of the brain is affected by some agent or condition (such as viral infection or toxins in the blood): pl. -thies
Source: Nature (extremely respected science publication; in business since 1869)
ENCEPHALOPATHY …condition of the brain that can be caused by infectious disease, metabolic abnormalities, brain tumors, toxic drug effects or increased intercranial pressure.
A disease of the brain; especially: one involving alterations of brain structure.