A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Chronic Fatigue Syndrome Fair Name Campaign Moves Ahead at Pace
Back in November of last year I reported on the efforts of the Fair Name Campaign which has the aim of promoting a name which truly represents the medical and patient reality of the illness currently known as Chronic Fatigue Syndrome in the United States and elsewhere.
The majority of patients, as well as some in the medical community (doctors, researchers etc), have felt that the name Chronic Fatigue Syndrome (CFS) trivializes what is a very serious and disabling illness. Not only that but it is medically inaccurate and does nothing to confer the fact that it is an organic illness. This has understandably contributed to much of the public, and to the chagrin of sufferers doctors as well, dismissing the condition as "all in the head". The weight of evidence conclusively demonstrates that CFS is not a psychological illness.
Patients, backed by knowledgeable doctors and researchers, have now decided that the time has come to put things right.
The Fair Name Campaign was created by Rick Carson, himself a patient and also founder of ProHealth, Inc which owns the largest CFS and fibromyalgia site on the web - http://www.immunesupport.com/. As well as providing huge amounts of information for patients immunesupport.com also sells high quality nutritional supplements with a share of the revenue being used to fund CFS and fibromyalgia research.
As part of the campaign The Name Change Advisory Board (NCAB) was created. The NCAB is made up of CFS experts including Dr. Lucinda Bateman, Dr. Paul Cheney, and Dr. Charles Lapp and was charged with advising the campaign on the best name to move forward with from a medical perspective. The NCAB put forward their recommendation that Chronic Fatigue Syndrome (CFS) be renamed as ME/CFS with the ME standing for Myalgic Encephalopathy.
It now seems that the campaign is progressing faster and being more successful than expected. Following CFS and fibromyalgia awareness week on May 12 Rick reported in a newsletter this week that the campaign had entered a new phase:
"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."
I have certainly noticed myself how effective the campaign has been in such a short space of time. Each week I add the latest research abstracts to The Environmental Illness Resource and have noticed that a growing number of papers already use the term ME/CFS in place of Chronic Fatigue Syndrome (CFS). Since the US produces the largest amount of scientific research it has a strong influence on the rest of the world so with researchers publishing papers using ME/CFS the use of the new name is sure to spread.
This process worked in the opposite direction when the US originally adopted the CFS name over 20 years ago. Until that point other countries had been using ME but this has been progressively replaced by CFS due to the vast majority of research coming out of the US which has used this name.
Organizations have also been quick to incorporate ME into their names with for example the International Association for Chronic Fatigue Syndrome (IACFS) becoming IACFS/ME.
On a personal note I am delighted that the Fair Name Campaign has been so successful. I have been ill with ME/CFS for 18 years after being diagnosed at the age of 11. Being English I was originally diagnosed with ME but have clearly seen a shift towards the use of CFS by both doctors and the public. I have no doubt that this hasn't helped the cause of patients like myself as I've lost count of the number of times people recognise the name Chronic Fatigue Syndrome and immediately ask "So you just get tired then?" Thankfully I have learned to brush off such ignorance and try to explain the seriousness of the illness, after all it's not the individual's fault that the name gives such a false impression!
I'd like to thank Rick, the Name Change Advisory Board, and all involved with the Fair Name Campaign for their much needed efforts.
What are your thoughts on the name change? Have people dismissed your illness due to it being called CFS? Are you happy with ME/CFS? Do you think it will help patients to be taken more seriously?
Please let us know!