On one of the Facebook ME groups today, someone posted a link to the Hummingbird Foundation. At first I was impressed, because it has a fairly short succinct description of ME which would be useful to provide people who don't understand what ME is. But then I scrolled down the page and found a section entitled 'What is 'CFS'? Why was this bogus disease category created? I read this with increasing dismay.
It basically ascertains that ME is a legitimate disease that can be easily diagnosed, but is now not recognised because of a condition that has been invented from thin air and named CFS. I was diagnosed with ME. I have chosen to refer to it as CFS, because when people online ask you what illness you suffer from and you say 'ME' they think you are taking the mick by referring to yourself as an illness (time and time and time again .. seriously!). My doctor is perfectly happy to write CFS on my sick notes rather than ME. A close friend of mine spent five months last year, in the only in patient facility in this country that specialises in ME and CFS. Her understanding, as mine, is that they are one and the same illness. If her specialists in that unit are under that impression then either The Hummingbird Foundation is mistaken, or all patients with CFS are doomed.
I'm afraid I disagree with the Foundations assertion that all people with CFS rather than ME have been misdiagnosed. I know there are a lot of misdiagnosis. My sister was diagnosed with ME ten years ago; nine years later it was discovered that she has MS. So I'm not in denial over the matter. But, I do not believe that my 'circulating blood volume is reduced by up to an astounding 50%' (though as far as I'm aware I've never had this tested), and I do believe I have CFS. I do not appreciate an organisation that is supposedly helping people with ME make me feel like a fraud. It's hard enough fighting outside non-believers.