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Here are some suggestions for making this new definition stick:
Print out the definition and send it to every doctor you can think ofparticularly those that have treated you the worst. Explain that this definition was developed by the worlds experts in ME/CFS and that it reflects your personal understanding of your illness.
Send this definition to every reporter and editor you can think of at every blog or newspaper you can think of. Use your imagination. Write a letter to the editor for your community or city newspaper or blog. Write something you are happy with and send it to dozens of people via email or Facebook. Tweet about it.
Contact the CDC. Urge them to abandon their useless definitions, which have slowed progress into the understanding of this illness and demand they acknowledge the truth. Point out to them that the 1994 definition they use now is tainted by the involvement of Michael Sharpe and Simon Wessley both with known ties to disability insurance companies. Point out that much has changed since 1994 and the Reeves definition was useless from the start.
Contact your Congressional representatives. Include the definition. Ask for a Congressional investigation into this widespread epidemic.
Never refer to yourself has having Chronic Fatigue Syndrome ever again. You might say you have Myalgic Encephalomyelitis, the illness formerly known as Chronic Fatigue Syndrome.
Myalgic Encephalomyelitis a name with some respectability. Now if we could only learn to pronounce it .
I just reposted Carolyn Anderson's suggestions here as a starting point with great ideas.
Please post here on this thread any ideas you might have or comments about Anderson's suggestions.
I'll start with the first.
1- print out this definition and send it out to all doctor's you have seen, especially the one's who misunderstood the illness.
I think that this is a great start and easy to do. Don't assume that your doctor has seen this, because most of them are not reading the newest on illnesses especially illnesses that don't make sense to them. I remember asking my GP a few months ago if he heard about XMRV being linked to ME/CFS and he looked at me like I'm from Mars. He said no - like no I have never heard of XMRV all-together. What amazed me even further that he just left it at that. Didn't ask me any questions about it. I would like to send this new definition to him with an introductory note saying: Since you have a long time patient who has been suffering from ME/CFS, I am sure that you would like to read this NEW Myalgic Encephalomyelitis International Consensus Criteria which was published in The Journal of Internal Medicine -July 20, 2011. It sheds new light on this illness due to studies recently done on patients and gives a more accurate and precise way for doctors to diagnose this illness and to call it by it's new name. It was mainly conceived to assist front line doctors who might encounter patients who fit this profile.
Thank you for reading this paper as I feel it is very critical for all doctors who have patients who are suffering from this illness to be up to date with the current news.
I think if we would all do this, which is not so hard to do, it will bring awareness and with it a feeling of somewhat of a vindication.
