Cfs Has A New Name

[StaceyYount]

http://img293.imageshack.us/my.php?image=committeelgpz2.jpg

Seated (clockwise): Drs. Anthony Komaroff, David Bell, Nancy Klimas, Leonard Jason,

Charles Lapp, Lucinda Bateman, Paul Cheney

An announcement from ProHealth Founder Rich Carson:

The CFS Name Change Advisory Board - whose combined research and clinical experience totals more than 150 years - met in Florida January 12, and reached a consensus agreement that a new name should be adopted for Chronic Fatigue Syndrome. While it is certain that no name will please all patients, the group feels that the new name they propose will improve the legitimacy of the disease, and remove the stigma of having a disease with 'fatigue' as the primary descriptor. Their report follows.

A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether 'Chronic Fatigue Syndrome' was an appropriate name for the disease, and to suggest an alternative name if necessary. Patients and CFS clinicians have long held that 'chronic fatigue syndrome' trivializes the serious nature of the disorder, and have called for a change of the name first adopted by the CDC in 1988.

The impetus for assembling the group was the belief that a panel of the world's leading experts could provide legitimacy and scientific credibility to patients seeking a new name.

The committee, called "the CFS Name Change Advisory Board" by its organizer, CFS patient Rich Carson, included Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Dr. Peterson was unable to attend the meeting, but was consulted via telephone afterward.

Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names. The majority of attention was spent discussing 'ME' - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. 'ME' has been used in many countries, including Great Britain.

'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate.

Recent scientific advances point to the usefulness of the ME label, as brain pathology with often painful consequences, especially in muscle, is increasingly documented in patients with this condition.

The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that 'CFS' should accompany any new name, at least for a period of time. It was acknowledged that CFS currently has some name recognition, though according to the CDC, less than 20 percent of the patients have been diagnosed.

The researchers expressed their belief that the term 'ME/CFS' (or 'CFS/ME') is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where 'CFS' was recently changed to 'ME/CFS'.

In a recent related event, the board of directors of the International Association for CFS (IACFS) voted to recommend that the name of that organization be changed to the IACFS/ME. This motion is currently being voted on by its members, and if approved, the name of that organization will soon be changed.

[Dizzy Dame]

This is good

While I don't have CFS, I have friends with the disease, and I know that the name does NOT fit with the disease. CFS is so much more than being "tired", it can be as debilitating as POTS for some patients.

I'm so glad they changed the name, so that those suffering with CFS...or ME Can feel more like the severity of their illness is being acknowledged.

[lavender]

wow this is a good change! It will be interesting to see if people use the name change and if it helps the image of this horrid illness.

I've been diagnosed with CFIDS.....or I guess ME, by some doctors. Others say I dont have it. I'm not sure. But I've always HATED the name. I always found the name embaressing because it just didn't go with how SICK I felt.

[JaneEyre9]

I've had the symptoms of CFS/ME for as long as or longer than I've had POTS symptoms, but i've never been officially diagnosed because doctors basically indicated that CFS wasn't a "real" or helpful diagnosis. I just was told i was run down and "fighting off a virus" all the time. I'm glad that this illness is getting the recognition it deserves. I hope that reliable, standardized testing for it will follow.

[lalalisa]

Hello,

Thanks for this information.

I've always found the name of this illness frustrating as well.

I guess I'm a little bit confused that they kept CFS as part of the name after acknowledging the confusion/ lack of helpfulness of the name.

(did that last part make any sense?)

Thanks again,

Lisa

[DancingLight]

Oooh, I'm on a posting roll tonight....but this will be my last! Must crash!

Anyways, glad you posted this.

I subscribe to the CFIDS journal (mostly to donate to that charity seeing as I can't really read it anyways, but I do scan the titles and such).

Anyways, I know that for YEARS they have been debating what to do with the name and whether or not to change it.

Fatigue is sooo not enough to describe it, yet, changing the name when we know so little about the illness at this point is a challenge also.

Perhaps they will begin over the years to use ME and phase out the CFS part--like they have begun to do with EDS--instead of saying EDS Type III it's Hypermobility Type of EDS.

For those of you wanting to get more scoop, my guess is that the website for the CFIDS Association of America would have a lot of the scoop. Their president Kimberly McCleary has been an amazing spokeswoman and advocate.

Emily