ME/CFS ACTION:
Support Shirley Mathews Burwell in being the first Secretary of Health to make ME/CFS a priority.
A new Secretary of Health is about to be confirmed by the U.S. Senate. Sylvia Mathews Burwell is currently the Director of White House Office on Management and Budget, and she is known as effective and numbers oriented. She is also closer to President Obama than Secretary Sebelius.
Let’s be the first patient community to send Nominee Burwell a welcome wagon, and make the “Obama Promise” on ME/CFS a mandate for her new job!
We need more emails than we sent to President Obama in 2012, we have outlined a template for you below. We have noted the costs to the economy because of Ms. Burwell’s background. Please add anything you would like about your personal experience with ME/CFS.
——————————————————————————————————————————-
To: sburwell@omb.eop.gov, Sylvia_m._burwell@omb.eop.gov, sylvia_burwell@omb.eop.gov, secretary@hhs.gov
CC: francis.collins@nih.gov, jarrettpublic@who.eop.gov, howard.koh@hhs.gov, courtneymiller999@gmail.com
Re: Elevate ME/CFS like President Obama Promised
Dear Secretary-nominee Burwell:
As you assume the important role of Secretary of Health, I want to be the first to welcome you and urge you to fulfill President Obama’s directive to elevate the priority of ME/CFS or Chronic Fatigue Syndrome at the National Institutes of Health and HHS.
With the federal government spending less on ME/CFS than when Pres. Obama made his promise, the Obama promise has not been fulfilled
In 2012, President Obama wrote to Courtney Miller saying he asked NIH to do more scientific research on ME/CFS, fulfilling a promise he made her at a Town Hall Meeting in Reno, Nevada. Like her husband, I have been severely ill with ME/CFS for years. President Obama’s Promise was the first glimmer of hope that my government would approach my illness seriously.
ME/CFS affects more than 1 million Americans like me. It costs the U.S. government and our economy more than $20 billion annually in disability, Medicare, lost tax revenue and lost productivity. It is as disabling as end stage renal failure and late stage AIDS. There are no FDA approved treatments to relieve patients’ suffering.
NIH only spends $5 million per year on scientific research on Chronic Fatigue Syndrome – less than when President Obama made his promise – while it spends $115 million annually for Multiple Sclerosis. Because of NIH’s commitment to MS research, there are now 9 FDA-approved treatments and MS patients can lead productive lives.
That’s what I need. I need a federal commitment to research ME/CFS. I ask you to immediately execute an important recommendation made by your Chronic Fatigue Syndrome Advisory Committee — that NIH issue an RFA for $7-10 million to research biomarkers, etiology and treatments for ME/CFS.
I have cognitive problems, pain, exhaustion, digestive difficulties, severe headaches, and cannot tolerate light or sound. You have the power to help me get my life, my health and my dignity back. Please commit to a stronger federal response to my health crisis.
(Insert your symptoms or story here, and your name)
Name
City
Years Sick
Grammatically, it ought to read, “Elevate ME/CFS as President Obama Promised
Cecelia
Thanks Cecelia – Bad grammar is my bane. How about this – I’ll fix it and you send the email in 🙂
Hi Cort,
I edited my version a little bit–with thanks for the template–and sent it off. Two of Sylvia Burwell’s addresses didn’t work but the others did. So far, nothing else has come back.
Are you not set up for Mac? I want to be in on this, but this site will not work for me. Pls let me know another way to respond. Thanks.
Web design is kind of my bane as well. What is happening with your Mac?
I love it when you provide a template! My brain fog thanks you! 🙂 I am adding my personal information and sending.
🙂
I would prefer a petition I could sign and you could send. This is beyond my few tech talents. Thanks for trying…….and do you have any ideas how to get Humana to agree to my appeal and agree to pay for my Xyrem for another year? Need a lot of help for this I’m afraid. Abby
Did anyone else get a failure delivery notice on secretary@hhs.gov?
Yeah, Holly. That one didn’t work for me either, along with another of her addresses, but since we had 4 for her, it seems okay. 2 seem to have gone through, as well as the other addresses.
Three addresses were undeliverable…so far. Fingers crossed that all the energy spent doing this was not in vain. Honestly, the top of my head has blown off…..
Sent.
Thanks for spearheading this Cort!
Hi Cort:
two emails didn’t work secretary HHS and the new secretary of HHS. And I was wondering if we can include President Obama’s email address as a “cc”. I feel we need to put more pressure on him at the same time. Just my opinion. Thanks again for all your efforts.
m
I also have an Apple computer, and I can’t get your template to work.
John
I agree with Matina Nicholson. Let’s all cc Obama. If my former business experience still holds, we may get more attention if her boss is cc’d.
You can email Obama at: president@whitehouse.gov
I received a “no reply” message back from my cc to president@whitehouse.gov saying to resubmit it via http://www.whitehouse.gov/contact/ which I attempted to do. The comment section only allows 2500 characters so I would have had to remove over 800 characters which would completely alter the original email and it would no longer have been a legitimate cc.
Pat, I was researching some history on this “promise” and ran across this shortened version intended to go into the webform that you encountered on the Whitehouse website. I would just change that last paragraph and instead of asking Obama to tell Courtney what happened, be a little more forceful about it being yet another broken promise.
Find the text here:
http://www.prohealth.com/library/showarticle.cfm?libid=17030
P.S. There is a link to a youtube video in the text. If you choose to watch it, fast forward to the 47:00 mark for Courtney’s question
I also did some editing and got some kicked back but couldn’t tell which addresses.
Is there a template anyone had done that we can give to others (well friends and family) to send to the HHS people, White House as well as that separate e-mail to our congress members referenced in your blog today? (We especially need one for Congress members. They have the check book.)
I was just at a meeting of a women’s group I belonged to, and the subject was using social media to change the world. Of course, my head was spinning on what we could do if we could keep a train of thought for more than two sentences or stand for more than 10. The answer to start with is of course an easy template for our own advocates to send on our behalf, if there is one. The Congressional one was a PDF and not easily adaptable. Is there one I haven’t seen to send these women and others – it feels like we have a window of time here we need to act on now.
Thank you for this Cort
Please can we join your plea from the UK when the template/petition is all sorted?
TY Cort for giving us a template to get our thoughts flowing. I have mailed the following.
5-18-14
To:
sburwell@omb.eop.gov, Sylvia_m._burwell@omb.eop.gov, sylvia_burwell@omb.eop.gov, secretary@hhs.gov
CC:
francis.collins@nih.gov, jarrettpublic@who.eop.gov, howard.koh@hhs.gov, courtneymiller999@gmail.com
Re: Fulfill Pres. Obama’s Promise for CFS Research
Dear Secretary-nominee Burwell,
As you assume the important role of Secretary of Health and Human services, I want to be the first to welcome you and urge you to fulfill President Obama’s directive to prioritize research on chronic fatigue syndrome (Also known to some as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at the National Institutes of Health and HHS. With the federal government spending less on ME/CFS than when Pres. Obama made his promise, I am frustrated.
I have been severely ill with chronic fatigue syndrome and comorbid autoimmune disorders. As a once high functioning registered nurse, health educator, and legal nurse consultant, I understand the importance of adequate care, empirical research, and improved communication between care providers, politicians, and patients.
I have witnessed the lackluster of the CFSAC committee over the past year or so. It must seem that they are stuck walking a treadmill, trying to move forward without success, because their feet are on a political hamster wheel rather than having their feet firmly planted on a road of achievement. So, I ask you to immediately execute an important recommendation made by your Chronic Fatigue Syndrome Advisory Committee — that NIH issue an RFA for $7-10 million to research biomarkers, etiology and treatments for ME/CFS.
I have cognitive problems, pain, exhaustion, digestive difficulties, autoimmune spinal disease, autoimmune thyroid disease, and autoimmune bladder disease. I have migraines that are refractory to any preventative treatment, yet I find a way to advocate. I do what I do as a volunteer. I don’t want accolades; I only want those who are paid, to do the job they promised. Please commit to a stronger federal response to my health crisis.
Sincerely, Celeste Cooper
PS the hhs address got the dreaded mailer demon.
I found this article saying that President Obama DID keep his promise and ask the NIH to increase research. I am by no means a fan of this president, but I think the issue has become, he kept his promise, but what happened to his request.
http://phoenixrising.me/archives/13145
Just getting to my overloaded inbox. Sent out the email this morning with personal changes, and received notice that secretary@hhs.gov was wrong. Anyway, thanks for the template. It was so helpful to get me started. I also blogged my email on my WordPress blog: sunshinebrightblog.wordpress.com If you care to check it out, I have many blogs re M.E. advocacy. Just click on the tab titled: M.E. Advocacy.
So glad you are an advocate, Cort. It’s my daughter who has M.E., and her condition is getting worse, of course, not better. She takes care with her food and pacing, but pain is worse and she had to increase her pain med. 🙁