Foggy is currently having a wonderful time with the Neighbours on Ramsay Street in Australia and so has allowed Sally to write this blog post. There is big news in the world of M.E. and he thinks Sally should highlight it. So here goes...
Hello,
Last night the Institute of Medicine in the US published a VERY LONG report into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The report was to consider a possible name change, identify characteristics and define how to diagnose the illness.
This is the report:
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf
In all honesty, I had brain fog last night and insomnia today so don't have the brain power to take in all of the medical language. I have been able to read the summaries though and think it could POSSIBLY be a step in the right direction. It clears up a little bit of the confusion between M.E. and CFS and stresses that it is a real disease and not a psychological syndrome. It is very early days and it is not clear whether the new definitions will be accepted and implemented globally. We will have to wait and see.
It doesn't have a direct positive impact on the suffering of 17 million people, neither does it lessen the severity of symptoms. However, is a massive boost to finally feel that those in the health profession are finally listening. Instead of a very long list of POSSIBLE symptoms required to be diagnosed it has simplified and reduced the list to make a much more definite diagnosis possible. The report says you should have either cognitive problems (brain fog/memory) OR the inability to stay upright for too long with great relief upon laying down, in addition to other symptoms. I have both of these symptoms so at least I know I haven't been misdiagnosed!!
It does frustrate me that so much time, effort and money is spent on classifying the illness, rather than researching what it actually is biologically. To me, it doesn't matter what the name is; the illness would be more credible and accepted if you could definitively explain to a non sufferer what it actually is rather than offering a list of invisible symptoms. (Does that make sense - brain fog today!).
I am going to stick to saying I have M.E. until I am 100% advised otherwise. Systemic Exertion Intolerance Disease (SEID) does sound a less wishy washy than Myalgic Encephalomyelitis (who isn't fed up with hearing M.E? Yes, it's all about me, me, me) and it does kind of say what the illness involves. However, I spoke to someone very close to me about it last night and the first thing he said to me when I told him the new name was 'so you have an excuse to be lazy?' He was joking but it does make me wonder if it will cause more people to think we are playing on the illness to be lazy. WE KNOW WE ARE NOT LAZY!! I had to Google what systemic meant....if I had to then I'm pretty sure non sufferers will not know what it means either. Is that helpful to our cause?
Definition of systemic: http://medical-dictionary.thefreedictionary.com/systemic
Below are some interesting articles about the report:
http://theargusreport.com/iom-wants-mecfm-name-changed-to-systemic-exertion-intolerance-disease-seid/
http://america.aljazeera.com/articles/2015/2/10/institute-of-medicine--calls-for-renaming-chronic-fatigue-syndrome.html
Let's keep our fingers crossed that this is the beginning of great change.
Sally
Ps. Here is Foggy with Dr Karl Kennedy (Neighbours) in Australia - HOW EXCITING!!!!
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