Letters From Our Readers – Patient Thinking & Rethinking 1-31-07

CFS has Become a Joke – Literally

I just wanted to say thanks for your efforts in attempting to change the CFS name. I was awake at 3 a.m. the other night…and a second-rate comedian was on television. One of his ‘jokes’ was about how ludicrous CFS is, how it isn't a real disease, etc. I have always thought the name ‘CFS’ was demeaning and that it trivializes a very serious, debilitating illness, but this very unfunny comedian really brought home the point that CFS is perceived as laughable by many in the general public. When the name of a disease becomes fodder for a comic then it is time to change it, regardless of what kind of research has already been done under that name. If we ever want CFS to be taken seriously and get the funding for research that it so desperately needs, then it needs to have a serious name. – LL


What Does ME Mean?

The last newsletter contained a new abbreviation. Maybe for a while you should make note of what it means before its continued use in the rest of the news. What does ME refer to? Just about the time everyone knows what CFS is, you add another acronym – ME. I know everyone seems to be on the "change the name" bandwagon, but I am not one of them. The name does describe what we have. With the CDC finally getting serious, where does the big name change come in? Isn't there already enough confusion among the uneducated, without suddenly calling it something else? Whatever name they come up with had better be good, since what we have now describes it perfectly – Chronic Fatigue Syndrome. – Connie

Note: Thank you for pointing out that we neglected to spell out the meaning of the acronym ME. You’re correct – it should be spelled out the first time it is mentioned in any article. To answer your question, ME generally refers to myalgic encephalomyelitis – the name by which CFS is known in most of the world. ME is also used as an acronym for myalgic encephalopathy. The two MEs have similar meanings with one distinct difference. Myalgic encephalomyelitis means muscle pain accompanied by inflammation of the brain and spinal cord, while myalgic encephalopathy indicates pathology: muscle pain and damage to the brain and spinal cord of unknown origin.


You’ve Got WHAT?

In a recent newsletter there was the following suggestion: “…An alternative approach could be to name CFS ‘Sisyphus disease.’ Sisyphus was a king in Greek mythology who outwitted/duped death. As punishment, he had to work in the underworld for eternity, repeatedly rolling a rock up a mountain, from where it fell down again. From there, a "Sisyphean task" is one that lasts forever and never yields a result.”

I think the name Sisyphus says a lot. A perfect name, except – tell someone you have Sisyphus and many will hear "syphilis.” I would be uncomfortable with that one, and would never use it. I'd rather they just think I am lazy and whiney! – Susan


Research Before Name Change

…I must admit, with a background in marketing, I haven't been on the side of name change at this time. My reluctance is for the very reasons the panel discussed: funds and effort already invested in current name recognition and that we've already been through inappropriate and demeaning labels like ‘Yuppie Flu’. I'd rather see valuable time spent on research than on worrying about a label before that research is concluded…That no one yet knows the cause but is still only guessing lends credibility to the psychosomatic belief of most medical professionals. That image is slightly changing due to the campaign for name recognition and that name is, unfortunately or not, CFS!

I believe that a name is accepted due to comprehension of the condition, not the name itself. After all, ‘cancer’ says nothing by itself; it's the knowledge of possible suffering and the information distributed under that name that has created awareness. For many reasons, the most important of which is the well-being of every sick and discouraged CFS patient, we simply cannot afford to paste one more temporary, ill-conceived label on this condition. We must be able to say with confidence and fanfare: "The severe illness inappropriately called Chronic Fatigue Syndrome has been found to be caused by _______________; therefore the name has been changed to ________________.” – Marcia


It’s a Double Whammy!

I think we should call CFIDS Double Whammy Disease! It would certainly get people's attention and they would remember it. It was discovered this year that both genes that control the immune system and that control the stress response are affected – Double Whammy. All I know is that it has destroyed every part of my life except my sense of humor. – Kim


Conference Validated CFS

At the IACFS convention recently in Ft. Lauderdale, I saw Rich Carson. I did not introduce myself because I have always been skeptical of someone looking so young and healthy to be “legitimately” a CF/CFS victim. During the convention I learned that this baffling disease strikes down all ages – children to elderly.

I also realized that I was practicing the same prejudice against Mr. Carson that was always displayed to me by acquaintances and closest family members. I look good, so I can't be sick. Everyone thought there was an underlying agenda for my “hypochondriac-ness.” I thought Rich Carson had a money-making agenda for selling products. I'm sorry, Mr. Carson, for passing along the skepticism-abuse that had been given to me.

I thank God for the enlightening convention, which validated my experiences as a CFS patient (by the sheer numbers who attended and the expert speakers). I thank God for PANDORA for advocating the research necessary for a cure, and for people like Mr. Carson, who provide a healthy means to manage this disease. Next convention I will make it a point to thank you personally. I'm sorry I ever doubted your motivation. You are one of a growing number of beacons that we CFS patients can turn to. Here's to a cure. – Claire

Note: Apology accepted with pleasure.

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