A New Name for CFS
But, as much as patients hated the name, the efforts to change it continued to meet strong resistance. Then along came Rich Carson, founder of Pro Health. In August 2006 Carson took on the formidable task of spearheading a campaign to once and for all get the name changed. He began to put together an advisory board that he called his “dream team.” They included many of the top CFS researchers and clinicians in the country.
The Name Change Advisory Board met in Florida in January, 2007 and unanimously agreed to call for a name change, adopting the name ME/CFS (with the ME standing for myalgic encephalopathy). While there will never be a name that every patient will agree with, I think this is an excellent choice. ME has been used in medical literature since 1956 and is still used in most of the world today, which will improve the likelihood of its general acceptance. Using the combined form of ME/CFS will make for a smoother transition and less confusion than might be caused by a newly created name. All in all, I applaud their choice and their courage in taking a stand.
Read the full Name Change Advisory Board report.
To learn more about the history of CFS and the battles over the name, read “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name.”
Comments
Wonderful article, should bring hope to the patients who have been embarrased and humilated by a silly name. I guess it is now up to patients and patient organizations to use ME/CFS instead of chronic fatigue syndrome. Patients, such as me, now have the choice. Let’s make it happen–because it starts with us.
Why keep the term CFS??? This only adds to the confusion. CFS (f.ex. defined by Fukuda) and ME are not the same condition!
I live in the UK. Doctors here do not like the term ME and insist on using the term CFS. In fact, my doctor dignosed ‘Fatigue State’ for 15 months and only changed the diagnosis to Chronic fatigue after I insisted. When I apply for benefits he advises me always to use the term Chronic Fatigue so we are no better off in the UK than you in the USA. When I tell people I have ME they say, ‘What’s that?’ I explain that it means chronic fatigue and they usually think I’m not very unwell, but they only see me at my best. It’s only people who know someone with the condition who appreciate how awful it is. We are still ignored and forgotten about and trivialised, and the government body the National Institute for Clinical Excellence is about to publish guidance for doctors on how to diagnose and manage the condition which recommends Graded Exercise therapy and Cognitive Behaviour Therapy, ignoring patient surveys which show that both treatments are, at best, useless and, at worst, dangerous.
I wish to express my feelings over the exaggerated amounts of complaints over the name change of CFS …..what counts to most me especially and to most all (who suffers such devastating pain at times) is that just the fact that the illness is now so respectfully recognized as we need it to be !!!. This illness has had so many setbacks in the past ( and not so long ago) in having us feel like we were all sick in the head …..so to me it is the respect of being recognized and respected with acknowledgement and respect by our doctors/physician and the whole medical societies !!!. I just tell people a name is a name but the real meaning comes on how we sincerely explain what we have and how we feel . I am not intimidated anymore for I don’t feel I have to explain my health problem anymore especially when people says ” you sure don’t look sick today “…i just answer right back: ” the reason I don’t look sick is that i can usually only go out when i’m feeling fine so that is why you don’t get to see me in pyjamas/swelled crying eyes at 3pm on the Main St of our town”….so strange how they suddenly change subject with more compassion !!..we will always have to live with ignorance of that illness ( one who does not live it will never fully understand it ) . Love to read up on all you offer for us who are suffering and to me a name is a name and what matters to me is like my own personal name is not that important !!!I expect just to be respected for who I am !!! Keep up the beautiful work and as i have learned we can only get critics when we do something and all others who only stay mute and stands by will look to find something to say no matter what. God bless you all !!