President Obama Letter on CFS

August 17, 2012

President Obama Letter on CFS

President Obama’s response to Courtney Miller’s request for more federal assistance for chronic fatigue syndrome

10 comments

{ 9 comments… read them below or add one }

helen bergeron August 17, 2012 at 3:59 pm

Thank you Mr. President for a job well done

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justinreilly August 18, 2012 at 11:31 am

Very nice to see the president use the term “ME/CFS.”

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Sandi Harrington August 20, 2012 at 6:19 pm

Dear Mr. President,

Our community much appreciates your taking on our battle. M.E. is not a new issue.
I’ve had M.E. for 37 years. I was misdiagnosed with CFS many years ago. I thank you for using the term ME/CFS and hope that in the future this country will drop the “CFS” like the rest of the world, for “CFS” is meaningless, a non-disease used by psychiatrists for their bottom line. FYI, many diseases can cause severe exhaustion, yet we don’t call cancer, diabetes, MS and many other diseases “CFS”, a confusing wastebasket terminology. In a nutshell, M.E. is a post-viral and viral, severely painful, neurological disease marked by cardiac insufficiency (a type of heart failure), orthostatic intolerance (inability to maintain an upright posture) that has kept me bedbound for most of my adult life and of course, unable to work :’ ‘. I could go on. We are mocked and abused by able-bodied family members! :’ ‘ I now have congestive heart failure from chronic Coxsackie Virus. Dr. Byron Hyde of Canada is the world’s foremost authority on M.E. Thank you so very much our dear President.

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Michelle P. August 18, 2012 at 1:09 pm

You are forgetting one important fact: No other president has even remotely mentioned CFS/ME before because it’s a NEW health condition and no other president KNEW about it to mention it! Don’t slander previous presidents for not mentioning it before you have your information correct.

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mark a. August 18, 2012 at 8:14 pm

Give us a break Michele…CFS is not “new”. I have had it for 14 years. Others for 25 or more years. Effective treatment for HIV/AIDS was developed 12 years after it was recognized as an illness of epidemic proportions. Nothing comparable has been done to understand, let alone treat, CFS. Instead, we got the CDC to label our illness as “chronic fatigue syndrome” and leave it at that.

Don’t pretend that this illness did not exist because past policymakers turned a blind eye to it.

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Nicole Rivera August 19, 2012 at 1:59 pm

I concur…Michele, of course they knew about it…perhaps it is new to you, but it is not new to us, it’s been around a very long time but we have been ignored…in fact, so much so a committee the CFSAC had to be formed as a result of the many who protested. There is talk that perhaps a cover-up took place that was intentional…that is why Bill Reeves was so controversial.

Truth is not slander…but gaslighting and revictimizing victims…that falls under a whole other category. I am not accusing you of doing this Michele but rather those who have had the ability to learn but refused to and instead chose to label us malingerers, crazy and all other kinds of things rather than acknowledging that in some cases we are sicker than Aids patients. Look up Nancy Klimas and her commentary in the New York Times…

Look up CFS and Reno Nevada…lots of information and documentaries about how the CDC was begged to investigate and they chose not to…some say the challenge was they could not afford to handle both HIV and whatever is the cause of our illness. I could go on but actually you’d have to be interested in reasearching the history then you would be able to see for yourself this is nowhere near slander…

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Fran Dagostino September 21, 2012 at 7:12 pm

Thank you Nicole for what you wrote. My reaction to reading a ‘new’ disease was not a good one; then reading what you wrote, reminding people of the cover-up and alleged diversion of research funding, leads us back to wonder what it is about our disease that is so threatening that it needs to be treated in this manner. I have been suffering with this disease for over 30 years and had recently been thinking about the disrespect, lack of research and treatment and sheer invisability of our disease and out suffering. And again I wonder why?? I am grateful to the President for being the first to take us / it seriously, and I pray this is the beginning of good things to come.

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mtnbibliophile January 21, 2013 at 10:41 am

So far I think Obama’s letter is just empty words – and a blatant plea to vote for him and other Democrats in the November election (which I was going to do anyhow). I know there was a special meeting held by some near-the-top federal health officials with some CFS experts, and that the CFS experts came away from the meeting with high hopes, but I read the transcript of that meeting and as far as I can tell, there were no specific changes that were promised to be made. Obama and his officials are more aware, they are promising to give CFS/ME more attention and higher priority, but is anyone aware of anything specific that’s actually happening? Please correct me if my perception of words but not deeds is not accurate; this is one time I’d love to be wrong.

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mtnbibliophile January 21, 2013 at 10:53 am

btw, as mentioned above, CFS/ME really needs a celebrity spokesperson to bring attention to CFS/ME. If President Obama really takes this disease seriously, Michelle Obama would do fine as out celebrity spokesperson.

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