Ember
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Thanks, Nielk.
Research 1st has now posted a write-up: www.research1st.com/2011/07/25/me-case-definition/
Research 1st has now posted a write-up: www.research1st.com/2011/07/25/me-case-definition/
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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10 Things I love about the International Consensus Criteria for Myalgic Encephalomyelitis4Walls and.
www.4wallsandaview.com
I have Myalgic Encephalomyelitis.
It's been confirmed this morning by my specialist in NYC.
What does that do for me?
Right now not much. Except that I don't have to use the pathetic CFS name again.
I am hoping that this will lead to more serious studies.
Maybe some people in my life who secretly or openly have mocked my "fake" disease will start taking it seriously.
Time will tell if this will happen.
Mostly, my hope is that the whole medical community will take this seriously. The Psychiatrists will leave us alone.
I am hoping for big change.
Maybe I am naive but, no one can foretell the future of how this is going to play out.
Amen! Now, do I have the nerve to say ME to doctors many of whom still think "CFS" is simple Chronic Fatigue and have no idea what ME is? Most don't even recognize the immune dysfunction in "CFIDS".
Is ME going to now officially exist in the US?
Amen! Now, do I have the nerve to say ME to doctors many of whom still think "CFS" is simple Chronic Fatigue and have no idea what ME is? Most don't even recognize the immune dysfunction in "CFIDS".
Is ME going to now officially exist in the US?
Mostly, my hope is that the whole medical community will take this seriously. The Psychiatrists will leave us alone.
The psychs will NEVER leave us alone! But they may be put in their place and *hopefully* a few will go to that special place in hell...
We have been complaining about a name change for so long.
Here we have an opportunity to use this consensus to our advantage.
I hope that people will seize this opportunity and not be afraid to use the name ME.
The more we use it whether in writing or talking, the more it will get accepted.
I'm with you, Nielk, in not being prepared to look this gift horse in the mouth! The International Consensus Panel has done for us what we couldn't possibly do for ourselves. We've been given such an opportunity.
I was happy, by the way, to pass along your sentiments (with roses) to Dr. Carruthers. I mentioned that the ICC was already being used to diagnose ME in New York. Speaking of the research, he pointed out that there's nothing to stop anyone from using these criteria now.
Thank you for your encouraging words. So far I've contacted Marjorie van de Sande to express my thanks and the National ME/FM Action Network to voice my support for the ICC.
Let's celebrate...and do more than celebrate.