The following Founder’s Corner is my personal interpretation of the events of the CFS Name Change Advisory Board meeting of January 12. Please see the article CFS Name Change Advisory Board Recommends New Name for Chronic Fatigue Syndrome for the account that the Board members felt is accurate.
Ask almost any patient and they will tell you that they despise the name ‘chronic fatigue syndrome’. Now, the CFS Name Change Advisory Board has concluded that ‘ME/CFS’ is a better name for the disease. But is this a significant improvement?
While ‘ME/CFS’ may not seem like a big deal - it’s called by that name in Canada and in many other parts of the world - I think it is a monumental step forward. Patients can, with medical confidence, call their disease ‘ME/CFS’ or leave off CFS completely - it’s their choice.
They can rest assured in its diagnostic accuracy; the CFS Name Change Advisory Board is probably the most impressive committee of eight CFS experts ever assembled in one room, and their opinion matters.
Although ME has historically been used to describe ‘Myalgic Encephalomyelitis’ - as CFS is called in the UK, much of Europe, Australia, and New Zealand - the Advisory Board felt that ‘Myalgic Encephalopathy’ was medically more appropriate. Why? Let’s take a look at how the names break down and define their sub-parts:
Myalgic - means painful muscles
Encephalo - refers to anything to do with the brain
...and the two choices to follow ‘myalgic encephalo…’ are:
myelitis - means an inflammation of the brain and spinal cord
pathy – is a suffix meaning disease or disorder of.
Since the Board agreed that inflammation of the brain and/or spinal cord is not present in all CFS patients, they therefore deemed encephalomyelitis less diagnostically accurate than encephalopathy.
Brain abnormalities (encephalopathy) are common to all cases of CFS. These are most easily identified by abnormal PET, SPECT, MRI, quantitative EEG, and BEAM scans; abnormal psychometric findings; neurocognitive complaints; headaches; cognitive fatigue; sleep disturbances; and low levels of various neurotransmitters.
Patients will have the opportunity to hear all sides of the argument and will ultimately make the decision: Is ME/CFS better than CFS? And which ‘ME’ is better - the one that has been used for 60 years, or the one that is more medically accurate and up to date?
Time will tell. And in the meantime, I no longer consider myself a victim of chronic fatigue syndrome - that’s just too stigmatizing for me and I have had enough of it. No, I have ME - ‘Myalgic Encephalopathy’. Some may say ME/CFS, but I say just ME.
Wishing you a lively debate,
CFS Patient and ProHealth Founder