Discussion in 'Action Alerts and Advocacy' started by Nielk, May 13, 2014.
The following e-mail was sent by Eileen Holderman to Dr. Unger (CDC)
I guess the CDC is attempting to look good by making us aware that they actually realised May 12 is our awareness day (that did surprise me that they'd paid us that much attention to notice that). Pity they dont understand that it takes far more then that to make them look good to us. Nothing other then accepting just how serious this illness is and making their website represent this will do.
Dr. Lipkin said in his interview with Mindy Kitei that Dr Unger does not think that this is a somatoform illness. I would say that action speaks louder then words.
For how many years have we urged them to remove their toolkit from their website with references to GET, CBT and antidepressants.
If the CDC really believes that this is a serious biological disease, we would not have to beg them to make these changes. They would be happy to comply.
The proof is in the pudding!
Did anyone take screenshots of the CDC's Awareness Day page that Eileen mentions? I'm not seeing it on their site now.
oh good! then it's gone! now for the other ten things on the list...
Telling it as it is, we all need to do more of the same particularly in the UK. It's completely inappropriate that so called ME Charities have links on their sites to ME/CFS Clinics run by Psychiatrists such as Chalder, Sharpe and White. I have asked them to remove them or at the very least put a caveat in place warning those new to ME of the harm. The response from both was, they provide the information, patients are free to choose, (AFME) it wouldn't remove them just because I and others didn't like them! (MEA) both Charities blocked me from their Facebook groups for raising this concern.
Great letter from the dr
As to the cdc page, boy it would have been nice to have mentioned just where you are to find this knowledgeable Dr to take these good notes so you can evidently swallow your pride that is the only thing keeping you from getting disability.
Since so many can't work where are they supposed to come up with the funds to travel 500- 1000 miles, pay for lodging, gas food meds the visit so they can see one of the handful of knowledgeable docs that the CDC hasn't tainted with their uneducated, biased view? They neglected to mention that.
Lol that and gathering all your items before you start to make that gourmet dinner, wash all that laundry and get that refreshing sleep. This takes place where, in Fantasyland?
Baffons, charlatans, quacks or just plain idiots?
Thanks for the screenshot--as awful as it is!
Is there some way we can add our voice to the concerns described in the letter to Unger?
The website as it stands is misleading and there is no way for the authors to not know that.
I have no words for what I think of the CDC's attitude toward the ME community.
Tania: I think I signed your petition twice! oOPs.
It's a great petition, Btw. Everyone should sign it several times, or at least once! Of course I am not a good example, so only once. I think. They hold up a sign for me at AVAAZ telling me I have already signed, because Oatmeal is no substitute for a brain.
Does the CDC even care what they've done to our lives? I thought not. Maybe they believe their own propaganda. Sometimes I think my own anger is what keeps me alive. Thank you for being able to translate that into advocacy.
I admire all you advocates out there making plans and making sense. Thank you Tania, Thank You ALL************
I went to the web site. The CDC is infinitely more scary than I like to remember. They didn't leave a little box for comments. Like "Who are you and what have you done to the humans." And, Dammit, I have ME. (Sorry, I am too old for major changes, like drilling thoughts into my head.) And I want to throw dog and cat poop at whoever wrote that scenario for a relaxing day at home with cfs. grr-rrr-rrr
You can also try a Google Site Search
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