Our Dear Blogger Arme.
May 2012
Hi all.
As some of you may be aware, what is so called ‘CFS Awareness Week', 'M.E./Cfs Awareness Week' or even 'M.E. Awareness Week' is approaching. However, the sad reality is that it is anything but. It is a complete misnomer which has absolutely nothing to do with M.E.. It is not an awareness day for all those diagnosed (I.E. misdiagnosed) with ‘CFS’ at all, and certainly not an awareness day for M.E. – which is not at all the same as ‘CFS’ in any way, as so many groups wrongly claim.
As Jodi brilliantly wrote in the wonderful HFME e-Newsletter
'The day many of us view with a good serving of dread will soon be upon us. May 12th and 'CFS' awareness day will soon be here and the airwaves bringing the public an even bigger than usual onslaught of misinformation about the reality of 'CFS' and which wrongly conflates M.E. with 'CFS' or 'ME/CFS.'
This can be very stressful for those with M.E. and can lead to friends and family members giving inappropriate advice, withdrawing support or even being abusive.
To help minimise the negative effect of such 'advocacy' campaigns we suggest:
1. Printing out the 2 page 'What is M.E.?' paper from HFME to give to family members in order to explain to them that despite what the media may have recently told them that you do not have 'CFS' and M.E.is not 'CFS' or 'ME/CFS' and exercise or psychological therapies will not cure or aid your condition.
2. Doing what you can to promote some real advocacy for all those patients misdiagnosed with 'CFS' by posting links to legitimate 'CFS' advocacy papers. Papers which point out that 'CFS' is always a misdiagnosis, that patients need a correct diagnosis and are not best served by keeping this misdiagnosis and that most patients misdiagnosed with 'CFS' do not have M.E. nor any other neurological disease.
For example, these two papers on the HFME site:
http://www.hfme.org/misdiagnosis.htm
http://www.hfme.org/whatisme.htm '
I feel it is such a shame, as we very much need to get genuine true and accurate information out there about M.E. and how M.E. simply is not Cfs.
We would really like for you to tell us what you would tell someone to teach them about M.E. or life with M.E.
Please either comment via the easy comment stream below or email me (Alison) at contactalisonlouisebell@gmailcom
We really appreciate your thoughts.
May we also take this apt moment to say that we very much feel that all of the ‘ME/CFS’ ribbons out there are just not helpful at all. Step one of real advocacy has to be to point out that ‘CFS’ and M.E. are not the same in any way! ‘ME/CFS’ concepts and ribbons are not just unhelpful but they are anti-M.E. advocacy and actually do so much real damage in so many ways.
If you would like a M.E. ribbon for your Facebook page or the such like, Jodi's super grey ribbon prototypes can be viewed and downloaded free on the HFME’s Facebook page.
I have uploaded two examples below. Hope you are a fan as much as I am!
You may also be interested in the new HFME ‘CFS’ vs M.E. comparison chart that is just out this month, which lists the many clear differences between ‘CFS’ and M.E.
http://www.hfme.org/comparisonchart.htm
In an effort to do my part for real M.E. advocacy, I (Alison) am emailing this page out to everyone that I know. Maybe it may just help, however small! If you are able, maybe think about sharing this page out yourselves too - every step counts, it all makes a very real difference!!
Thanks truly for reading!!
Best Wishes, Much Love and Blessings
The Tinkerbelle and Hummingbird M.E. Blog
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