Bob & Courtney Miller question President Obama on CFS research/ Reno Town Hall today!

[Snow Leopard]

that's why we're following up...

Well in such a followup, be sure to point out the following facts:

The high incidence of CFS.
The fact that it causes major loss in quality of life - most patients do not have the energy to raise families or work. (the family aspect is even more important than the employment aspect)
The fact that there are no known treatments that allow a majority of patients to have enough relief from symptoms to raise a family or go back to work.
And most importantly, that when the ratio between the economic costs (CDC and Jason et al estimates) and the NIH spending are contrasted with all other diseases, CFS is underfunded by a factor of 20-30 times. This is even more pronounced when you compare the quality of life aspects of CFS patients, to say the spending for diabetes or obesity.
If you need more details about these sorts of comparisons, we can start another thread.

 

[sosumi]

We ALL need to follow up!!!

See http://www.rescindinc.org for details.

 

[markmc20001]

We ALL need to follow up!!!

See http://www.rescindinc.org for details.

Oh yes the 10 letters campaign to be sent on May 12, 2001! Thanks for reminding me! I'm going to put it on my calender!

here is a breif descpription from the rescininc webiste link.

"10 Letters Campaign for May 12, 2011

President Obama has asked his staff to present him with at least 10 letters
at the end of every day of the 50,000 letters the White House receives on
any given day, so that he can get a feel for what the average American is
going through. He wants to hear from People without big moneyed lobbyists
who want to get their point across to the President. Let's make sure he
reads a letter about M.E. on one evening in May."

I just hope when the president asks the "NIH" he doesn't get the standard BS response. Like the CFSAC that has meetings every year.... Or try the CAA... Or look at all the research that says it' psychobabble... Or oh yes MR President, that XMRV, all the tests show it's contamination.

No doubt there are plenty of canned responses, and pitfalls that can throw off the president off even if he does ask the NIH because he really doesn't have the time and inside info to understand the history and politics of CFS.....

 

[justinreilly]

Thank you, Courtney Miller!

 

[justinreilly]

Here is my response to a good post by Dr. Yes on mecfsforums.com:

By Dr. Yes:
As for the whole Obama thing, this is what it boils down to: a U.S. president was obliged to publicly (and believe me, his staff are now well aware of the fact that it's in print) utter the words "chronic fatigue syndrome" and to promise that he would consult the NIH about it. He can be held to his word; of course he can lie about it, or his staff can, but we shouldn't assume that. There may be a thirty second call by a low-ranking staffer to a scientific advisor about it - end of story. But if anyone ever thought "boy the President should hear about this" or about what the NIH is doing with peer review for CFS (especially after Holdren's recent guidelines in that regard), then obviously now is the time to write to him, and to provide him with reason to doubt the NIH's word on funding and doubt their word on XMRV. That means a combination of personal stories, as Lisa suggested, and scientific information.

Great point!

This is probably the only time ever we are going to be able to write to the President and have, at least in the collective, it be noted and considered by his office. Writing him is well worth doing right now. Can someone draft a sample letter for those of us who are too sick or to draft our own letter?

btw- there's no reason for him to lie. All he promised was that he'd ask NIH what it was doing and, I believe, something like "see if we can do some more for this ailment" which will probably amount to a staffer drafting a memo to NIH and NIH replying in a letter that it's doing an enormous amount of cutting edge research as it always has on "CFS" and that, unfortunately, the budget doesn't allow any more than the (supposed) 20% increase in funding. Obama's office will then send Miller a letter repeating this and noting the great 20% increase in funding.

I am grateful to Miller and very happy she asked. No one contact with a politician or anyone else will ever substantially change our situation, so this one won't either, but it is one more hair on the camel's back and has advanced us to some degree, even if it isn't dramatic.

Contacting Congress, and the higher levels of the agencies and above in the executive branch is essential. CDC and NIH will NEVER change unless forced to from above. This is obvious from the long history of contacting CDC and NIH with no improvement. It seems like Collin's interest is what has prompted what positive change has occurred at NIH. Fauci would never have done anything for ME if not ordered to by an NIH director.

 

[markmc20001]

I'll send out my letter in the next couple days. Maybe send it again on the 12th.

This is a fantastic opportunity to get a little extra push from the inside.

 

[Hope123]

The most important thing is to write/ call/ e-mail to get this and keep it on the President's radar even if you only write a little blurb saying you have ME/CFS, have been sick for XY years, and aren't able to work, take care of yourself, your family, etc. Of course it's good if you put in more scientific references/ facts etc. but the shorter you can make your letter the better. People sometimes don't do anything because they're intimidated about not knowing what to write. In addition, governmental staff get a lot of letters and getting across a few strong points is better than a long letter with many points.

Calling/ e-mailing/ faxing is better than snail mail -- remember that snail mail is slower and it is slowed even more by mail security process (remember the anthrax scare?). A written letter is always good but you might want to fax it in instead.

I hope people don't think that this is only a politician's response and that Obama won't follow-up with it. Better to light a candle than to curse the darkness. It's only in hindsight that people realize how single people or actions drove historical events.

I sent off an e-mail last week and asked for three things --
-- more NIH funding of ME/CFS research,
-- construction of ME/CFS Centers of Excellence (Centers which educate the community, take care of patients, and do research and which exist for all types of medical conditions all over the country; this has also been the #1 suggestion of CFSAC since 2004),
-- that the President or his representative (more realistic) attend May CFSAC to hear what next steps will be post-NIH conference esp. as NIH and other agencies
supposedly will report their reactions to the conference; aside from what you see online, patients and advocates interact with government staff at meetings and
what happens then is just as important as what happens online

 

[justinreilly]

Tell the President more than "Thank You"

Here's a short video on how mail is handled for the President which Robyn posted on mecfsforums.com:
http://www.whitehouse.gov/blog/Letters-to-the-President/

Like any politician's office, I'm sure they track how many pieces of correspondence they get on each issue and this info gets to the president (he might not be aware that anyone has written him on an issue unless it is in the top X number of issues). And they may also factor in the effort put in the letters and how strong the opinions are. But mostly it's probably numbers, so definitely write in.

Plus, you never know what staffer might get interested and eventually mention the subject to someone who can do something. Every little hair on the camel's back helps.

Bob Miller's saying on CFIDSLink email from CAA to write a short email/letter, just thanking him for promising to ask NIH what's up and if they can do more for our "ailment." He seems to be implying, 'don't bother the important man with our complaints.' Needless to say, I think this is too weak.

The video says the president gets almost 200,000 pieces of correspondence a week. These staffers are bored out of their skulls reading these letters. If we just say 'thanks for saying you'll check on it', this message will never get thru to the president and even if it does, it does not draw his attention to the fact that they there is a major epidemic of devastating disease that NIH isn't dealing with. Because of the tone, they will assume everything's cool. We've been nice for a quarter century and if we keep it up we will never get the help we need. Let's Raise Hell!!

 

[charityfundraiser]

Does anyone know where they got the $20 billion economic cost from? I only found a paper which says $9 billion.

Also, here is a useful table if you want to compare funding by disease:

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
http://report.nih.gov/rcdc/categories/

Info on government health agencies Web sites (CDC) say that CFS is as disabling as MS, lupus, RA, and a few other. Yet NIH funding is:

MS:
$133 million
400,000 people

Lupus:
$112 million
161,000 - 1,500,000 people (?)

CFS:
$6 million
400,000 - 4,000,000 people (?)

CFS is less than 5% of MS funding total, and on a per person basis even lower.

So, my two points:

- hope that funding for CFS research will reflect the economic cost
- hope that funding for CFS research will be made equitable (either total or per person) with diseases they consider comparably disabling

Don't know if that's too much to say in my letter.

 

[WillowJ]

4 million people is using Reeves inclusion and is just random fatigued people with various diseases that should be in other categories such as MDD... proper incidence of ME/CFS is closer to 1 million (Jason)

The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected. Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases. Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.

http://www.lupus.org/webmodules/web...ewsroomreporters.aspx?articleid=247&zoneid=60

So about a million people have SLE.

 

[charityfundraiser]

Here's a short video on how mail is handled for the President which Robyn posted on mecfsforums.com:
http://www.whitehouse.gov/blog/Letters-to-the-President/

Here's the transcript of the video. The President gets over 100,000 letters/e-mails/faxes/phone calls from the public per day and gets to read 10 of them per day. It looks to me like chances are higher if you send a paper letter, include your address (since he handwrites letters back), and include a picture or something.

0:04 (birds chirping)
0:09 The President: These letters, I think, do more to keep me in touch with what's
0:14 happening around the country than just about anything else.
0:16 (birds chirping)
0:21 Some of them are funny, some of them are angry,
0:24 a lot of them are sad or frustrated about their current situation.
0:32 Mr. Kelleher: In his first week as President, he asked for ten letters every
0:37 day and every day since, we've given it to him.
0:42 (music playing)
0:49 We get 65,000 paper letters every week,
0:54 we get something like 100,000 e-mails, 1,000 faxes,
0:58 2,500 to 3,500 calls per day.
1:02 And our job is to take all that information in, to do it --
1:07 the best analysis we can about what we're hearing from the
1:09 public and respond individually to all those folks so they know
1:12 that the President is listening.
1:13 (music playing)
1:23 Anyone that sends a message to us, it comes into our offices,
1:29 our staff sorts through them, they identify those that meet
1:32 our three tests: Are they something that's representative
1:35 of the mail that's coming in, is it representative of something
1:37 in the news, and is it something that's a compelling message?
1:40 They pile that mail together; some of it ends up here on my desk.
1:43 (music playing)
1:45 I sort through it, categorize it by issue,
1:48 and then every day I go through them and pick the ten that best
1:52 represent what's happening right now.
1:56 It's a good dialogue -- a direct relationship between
1:59 constituents who have these concerns and the President who
2:02 desperately wants to get those messages.
2:05 The President's talked about being in a bubble,
2:06 and our job is to make sure that he gets out of it every day.
2:09 (music playing)
2:15 Hey, Joni.
2:16 >> Hey, Mike.
2:17 Mr. Kelleher: How you doing?
2:18 >> Great, how're you doing?
2:19 Mr. Kelleher: Good.
2:20 How's everybody doing?
2:21 >> Thank you.
2:22 Everyone's doing well.
2:23 (music playing)
2:26 >> Hey, Katie.
2:27 Ms. Johnson: Thank you.
2:28 So this is for tomorrow?
2:29 >> Yep.
2:30 Ms. Johnson: Okay.
2:31 >> Is that good?
2:32 Ms. Johnson: Yep.
2:33 I'll give it to him.
2:34 He probably replies to somewhere between three and four a night,
2:36 so over the course of the week, you're writing 15 to 20 letters.
2:39 So he writes a lot.
2:40 And he hand writes every single one of them.
2:42 Some are longer, some are shorter,
2:44 and the issues totally vary.
2:45 (music playing)
2:52 The President: Lately, I've been getting a lot of health care letters and this
2:54 is a good example.
2:56 "Dear Mr. Obama, my son-in-law, age 42,
2:59 had a heart valve replaced two years ago.
3:02 His wife and two children pay $1,200 per month for health insurance.
3:06 They cannot get another provider because he has a pre-existing condition.
3:13 He's now unemployed, so my husband and myself are helping them.
3:16 We're in our mid-60s and this is draining our retirement."
3:21 There's so many letters like that that I'm receiving every day.
3:26 You know, here's another one.
3:28 A woman whose husband retired from AT&T at 61 is waiting to
3:33 get on Medicare.
3:35 You now have the company in negotiations with the union and
3:39 may decide to stop health care for retirees.
3:45 Got another one, an antique business in Alabama,
3:49 they are on the verge of losing their business because they just
3:54 can't afford to pay the premiums --
3:57 their premiums increased $70 per month just this month.
4:02 So a lot of the stories are heartbreaking.
4:07 People who work hard -- a lot of times they'll say,
4:10 "I've never written to a President before,
4:12 I'm not looking for a handout, all I want is just a fair shake in."
4:17 And it ends up being a powerful motivator for me when we try to
4:21 move this health agenda forward.
4:25 Now, some of them are more cheerful and, you know,
4:28 this one for example.
4:30 "With all the huge money difficulties facing our country,
4:32 I thought you might like to see how someone spent their $250
4:37 stimulus money.
4:39 Thank you for all the pleasures from tending my raised bed and
4:42 from the vegetables I hope to enjoy."
4:44 So she set up a vegetable garden and she sent me a picture.
4:51 There's a beautiful letter that I got just a couple of days ago
4:53 I'm going to be responding -- from a woman who had found a
4:58 letter and she's forwarded it to me,
5:03 a letter from her father when he was fighting in World War II.
5:08 She had just been born and he had just gotten news of her
5:11 birth and he sent this letter, "My Dearest Daughter..."
5:15 And explained what he was doing in Europe during World War II
5:21 and why this was so important and what the country meant to
5:24 him and that someday she'd be old enough to read it and
5:27 understand why this was so important.
5:30 You know, you get letters like that and it --
5:32 it gives you a sense of what's best about America and inspires
5:36 you, and makes you want to work that much harder to make sure
5:39 that that -- that spirit is reflected in our government.

 

[justinreilly]

Charityfundraiser, sending a picture sounds like a great idea (Obama was answering a thankyou card from a woman with a picture of her flower bed that she spent a tax refund or stimulus check on)

Doing something to stand out from the clutter is very helpful. these staffers are bored to tears reading hundreds of thousands of letters. My letter is addressed to the president, but starts with "Dear Presidential Staffer, Thank you for your hard work of reading all the letters the President gets." rather than "Dear Mr. President," a little shout out to them and their unsung hard work. That at least will capture their attention and predispose them to be receptive to the letter.

 

[Snow Leopard]

- hope that funding for CFS research will reflect the economic cost
- hope that funding for CFS research will be made equitable (either total or per person) with diseases they consider comparably disabling

Don't know if that's too much to say in my letter.

You need to focus as much, if not more on the personal impact on sufferers due to the fact that few recover and there are no treatments, rather than merely on the incidence and economic costs.

The latest national CDC estimate is $51 billion per year (its in the article, not the abstract): http://www.ncbi.nlm.nih.gov/pubmed/21251294
Then there was Dr Jason's study:
http://www.dynamic-med.com/content/7/1/6


See also my post here:
http://forums.phoenixrising.me/show...tigue-Syndrome&p=174599&viewfull=1#post174599

 

[justinreilly]

You need to focus as much, if not more on the personal impact on sufferers due to the fact that few recover and there are no treatments, rather than merely on the incidence and economic costs.

The latest national CDC estimate is $51 billion per year (its in the article, not the abstract): http://www.ncbi.nlm.nih.gov/pubmed/21251294
Then there was Dr Jason's study:
http://www.dynamic-med.com/content/7/1/6

See also my post here:
http://forums.phoenixrising.me/show...tigue-Syndrome&p=174599&viewfull=1#post174599

This is junk science. They used the Georgia cohort and appeared used the Reeves criteria for prevalence (4 Million in US) to come up with the $51B figure. I would go with Prof. Jason since he is an actual scientist: " the total direct and indirect costs due to ME/CFS were estimated to range from 17 to 24 billion dollars."

 

[beaker]

Very well said shiso, and another element she added was the tone - it was assertive not aggressive, it wasn't angry, it didn't put him on the defensive, and it asked him to care about us. While we have every right to be angry, I think we as a community need to learn lessons on how to communicate our message effectively and not primarily vent anger which tends to push people away.

I agree. Thank you for articulating that point.

Well done Courtney Miller ! I thought your question was well said and I much appreciate your advocacy.

 

[Ember]

Charityfundraiser, sending a picture sounds like a great idea (Obama was answering a thankyou card from a woman with a picture of her flower bed that she spent a tax refund or stimulus check on)

Doing something to stand out from the clutter is very helpful. these staffers are bored to tears reading hundreds of thousands of letters. My letter is addressed to the president, but starts with "Dear Presidential Staffer, Thank you for your hard work of reading all the letters the President gets." rather than "Dear Mr. President," a little shout out to them and their unsung hard work. That at least will capture their attention and predispose them to be receptive to the letter.

How about binding our letters together in book form...as a May 12 project...(or have I been through too many brainstorming sessions)?

It seems that any individual letter has a 1 in 1,000 chance of being read.

 

[Nielk]

This is the e-mail I just received from the White House as a follow up to my e-mail concerning Courtney Millers question to the President about what is being done about ME/CFS



April 28, 2011



Dear Friend:


Thank you for writing. I have heard from many Americans whose lives have been affected by a wide range of health conditions and diseases. Whether they are common, preventable ailments or rare, life-threatening illnesses, we must do more to find cures and improve treatments for patients.



I have always been a strong supporter of medical research that saves lives, relieves suffering, and improves the quality of life for those afflicted. Medical miracles do not happen by accident. They often result from painstaking and costly research, as well as years of trial and error. From the sequencing of the human genome to life-saving vaccines and pioneering cancer treatment, Federally-funded research has led to scientific progress and improved health care for countless Americans.



My Administration has already begun the work of advancing medical research. The American Recovery and Reinvestment Act made $8.2 billion available to the National Institutes of Health for scientific research grants. This money will help fund an array of research projects in labs and hospitals across the country. I also lifted the ban on Federal funding for embryonic stem cell research, which has the unique potential to help us better understand -- and possibly cure -- some of the most devastating diseases and conditions. To explore the steps my Administration is taking, please visit: www.nih.gov or www.cancer.gov.



This work is essential not only for our health and well-being, but also for the progress of all humanity. Together, we can ensure America continues to lead the world in medical research and scientific discovery. Thank you, again, for writing.


Sincerely,


Barack Obama

 

[Nielk]

After re-reading the response I received, it seems pretty generic.
It looks like anyone writing anything under the Medical and Health issue would get the same letter.

I hope that this is just an automatic reply and the issue will still be looked into.