Letters From Readers About the Name Change 10-04-06

We experience this disabling disease so differently

My initial thought was to ask what symptoms all of us with CFIDS experience, but with CFIDS being an actual syndrome with MANY symptoms, and different ones affecting different people, a disease based on the name of a symptom would be next to impossible.

…We can't name it Chronic Low Grade Fever, Weakness, Dizziness, POTS, or Night Sweating disease. So maybe we invent a word and call it that, or name it after a person. I would just hate to see us focus on putting a symptom in the name, since we really all experience this disabling illness so differently. No matter what, it should sound serious and provoke serious thought vs. ridicule. – Dawn


How about the “father” of M.E.?

I've always felt that in order to "tone down" the controversial name, CFS, perhaps we SHOULD – as others have mentioned – name the illness after an individual. My vote is for Dr. Melvin Ramsay (Ramsay's Disease) as well, seeing as he's considered the "father" of M.E. He coined the name way back in the '50s. [The late Dr. Ramsay, a physician practicing in the UK, defined “a new disease” in 1956, which he called Benign Myalgic Encephalomyelitis.]

Just my thought, since it's going to take longer than we hope to find the cause (causes) of M.E./CFIDS. There is no proof yet that it's caused by “a” virus. Yes, we have immunological, neurological, and endocrinological malfunctions, but they could be caused by a toxin, a variety of toxins, a bacteria that is unknown yet, a virus, or even a combination – as we all know. Look at the ciguatera/ciguatoxin discovery a couple of years ago. – Leeza

Rich Carson replies: I was excited about ciguatoxin, and ProHealth reported on research regarding possible links between ciguatera fish poisoning and CFS several years ago (search on ciguatoxin in the ImmuneSupport.com archive). However, I have yet to see anything compelling come up in the past few years, so if you are aware of anything as it relates to CFS or FM, please let me know. By one definition, “Ciguatoxin is found in more than 400 species of reef fish, and has even been found in farm raised salmon. The symptoms can last from weeks to years, and in extreme cases as many as 20 years, again in a relapse/remit pattern based on exposures to triggering foods and activities. Ciguatoxin is excreted in breast milk and can be sexually transmitted.”


“Establishment” would ultimately prefer TATT (tired all the time)

On this side of the pond [the UK] we’ve been following this with interest. We too have a struggle with the Establishment “preferring” to use CFS, which then of course becomes CF and ultimately, TATT (tired all the time). Of course they want the status quo to support their agenda of non-action.

Our view here at Invest In M.E.* is quite simple – we are campaigning for sufferers of M.E., not CFS. At the May 2006 conference all our speakers, including Byron Hyde and Bruce Carruthers, talked about Myalgic Encephalomyelitis and the biology surrounding it. It was so named over 50 years ago by Melvin Ramsay and for very sound, scientific reasons. The ongoing Parliamentary Inquiry here in the UK is being led by Dr. Gibson, MP, and is into M.E., not CFS or any other nonsense.

I hope that this encourages you to revert to the only name that makes scientific sense. – Good luck, Sue

* Note: Invest in ME is an independent charity in the UK campaigning for biomedical research into Myalgic Encephalomyelitis as defined by WHO-ICD-10-G93.3. (http://www.investinme.org/)

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