Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ecoclimber, Oct 5, 2013.
Delia posted this over on Facebook:
As this was written in a comment reply I also wrote a thread level post to further elaborate this strategy. It is pending approval.
Another post on the FBI page I just wrote has to deal with preparing for the media campaign to commence immediately if working with Harkin and Murray does not work. This also pending approval.
A single coherent, easily digestible message is needed.
Is this something than is best done by American citizens? Or something those of us who are abroad could think about doing too?
yes, you should be able to fax (or phone) them if you want to. Feel free to let them know how it will affect you in your country.
you can also email the White House with their webform (they have a spot to list that you are not from the US), as well as, of course, faxing or phoning them.
Tom Harkin 202-224-3254
Patty Murray 202-224-2621
Also sign the letter from patients and advocates! I believe there is a post today here. I don't know how to link, but I'll try!
Also at the Canary Project on kickstarter. For one dollar you can add to the numbers of people, which helps show how many we are!
There is a link on the Home page here: third article down I believe
I live in Washington state and I have emailed Murray everyday and she just responded back. Read her response in BOLD below. I responded back to her email and will continue to do so.
On this thread it was posted that we should all put pressure on Murray and Harkin. I'm curious why Murray? Is she sympathetic for our cause or know about it? I wasn't aware that Murray had any clue about ME.
Thank you for contacting me regarding your concerns with efforts to change the definition of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. I appreciate having the benefit of your views on this matter.
The views of Washingtonians are very important to my work. I will keep your thoughts in mind, and I encourage you to stay in touch. If you would like to know more about my work in the Senate, please feel free to sign up for my weekly updates at http://murray.senate.gov/updates. Again, thank you for taking the time to share your thoughts with me.
United States Senator
This a normal reply after first or early contacts. By mail, email or phone message.
Did you get through to talk to her staffer who covers the HHS for her?
Also: you can contact Harkins office as a citizen of the US you don't have to live in Iowa. This is a common misunderstanding. You can contact these people if you live in other countries too., if the action affects you and it's not a Foriegn Policy issue. and this isn't.
The reason for Harkin and Murray is because they are top Democrats and the only ones on HHS. We need them to worry about the fact that we are going public on a big way against Sebellius, which Dems DON'T want as a reappointment process will muck up the works for months and months.
Here's what to say on you follow up phone (or fax or email if you, like me can't talk on the phone well anymore):
"Thank you Senator __________
Patients and their allies are presently preparing a media campaign against Secretary Sebellius and The IOM contract, the unnecessary taxpayer waste, Sebellius's documented unsavory actions, her inexplicably ignoring the experts and patients on this matter.
We will also be bringing public attention to the IOM's abysmal treatment Gulf War Veterans.
The media campaign and resistance efforts to the IOM contract is ready to go, if our efforts with you and Senator Harkin fail to make headway in convincing Sebellius to abandon and cancel the contract that is not in the best interests of the patients.
We are working on a two week window to give you time to talk to the Secretary.
The point is-they don't want more fuel to her fire and want to avoid a resignation. Or any more dirt on her.
Good job! Also, yes-she I believe that a WA stater has said she's sympathetic.
Good luck! At least you didn't get the health care computer form letter! They read yours and at least got the right topic! That's a big deal!
Senator Patty Murray 202-224-2621
DC Fax: 202-224-0238
Contact Senator Murray:http://www.murray.senate.gov/public/index.cfm/contactme...See More
Contact Me - United States Senator Patty Murray
If you need help with an immigration issue, veteran benefits, social security benefits, etc. or a government agency (INS, VA, SSA), please go to our Privacy Release Form. NOTE - because of the Privacy Act of 1974, my office must have a written request with a signature in order to assist constituents...
Senator Tom Harkin Contact Senator Harkin:http://www.harkin.senate.gov/contact_opinion.cfm
WWW Homepage: http://www.harkin.senate.gov/
Senator Tom Harkin
I am a United States Senator from Iowa, currently serving my fifth term. During my time in the Senate, I have earned a reputation for giving a voice to those too often overlooked in Washington: working families, women, people with disabilities, children, students, seniors, family farmers, and small...
Here is a graphic if you would like to include it in your emails or faxes
Thank you so much for the information. I will send her the letter you provided below.
Just emailed the letter to her. I'm trying to figure out twitter right now and how to tweet. I have the list of people that was posted on another site. I have added/followed the people below but don't know how to tweet them? any suggestions? I will google it also
@Sebelius #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@SenatorHarkin #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@JerryMoran #MECFS Patient advocates stand united behind 50 MECFS experts & against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@theIOM #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@BarackObama #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@HHS_DrKoh #MECFS Patient advocates stand united behind 50 MECFS experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@DrFriedenCDC #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
@NIHDirector #MECFS Patient advocates stand united behind 50 experts and against waste of $1mill on #IOMContract. http://tinyurl.com/m6ahzm5
I ignored having a twitter account am trying to learn how to send tweets too!
You just go on twitter and put one of the tweets starting with an @ in the blank field for your tweet and then you tweet it. The person after a @ gets emailed that you have tweeted about them with a link to the tweet.
It's possible to disable this feature, or to get emails only from accounts they follow. The message will still be in the "Connections" tab of the account after the @ . If they have someone managing their account who knows what they are doing (they probably would?), they will see the message.
Thanks for the clarification.
I do not understand your response. You're saying Suzanne Vernon and CAA (don't know what that is) is agreeing with HHS against the 35 experts. I met her in Santa Barbara in 2005 or 2006 when CFIDS was in town; I found her wonderful---very encouraging, very committed to helping us, very excited about the mapping of the human genome and the science that is happening now. Will someone explain????
Suzanne Vernon works for the CAA. The CAA has always been very skilled at promoting themselves. They know how to do enough to make themselves look good. But they put their relationship with the government ahead of the well-being of patients.
CAA is CFIDS Association of America. Dr. Vernon is a co-author of the Reeves Criteria, which is a fake definition of CFS, that has and is causing so much harm.
If this contract goes through and 18 months from now we will have a decision similar to CMI, will you ask Pandora, CAA or other advocacy groups for help? What will be their response?
If the government turned their backs on the brave men and women in uniform who served our country in the hour of this nation greatest need, what makes you think they will suddenly have a change of opinion and political will to stand behind this patient community. The time to fight to rescind this contract is now, not after the fact when it is too late.
I HOPE YOU READ ALL OF THIS: THIIS IS AS REAL AS IT GETS. names have been xxxxx indicating not current Administration.
According to the Department of Defense, by 1999, the military revealed
- As many as 100,000 U.S. troops were exposed to repeated low-levels of chemical warfare agents, including sarin, cyclosarin, and mustard gases;
- More than 250,000 received the investigational new drug pyridostigmine bromide (PB pills) the Pentagon "cannot rule out" as linked to Gulf War illnesses;
- 8,000 received the investigational new botulinum toxoid (Bot Tox) vaccine;
- 150,000 received the hotly debated anthrax vaccine;
- 436,000 entered into or lived for months within areas contaminated by more than 315 tons of depleted uranium radioactive toxic waste possibly laced with trace amounts of highly radioactive Plutonium and Neptunium, almost all without any awareness, training, protective equipment, or medical evaluations; and
- Hundreds of thousands lived outdoors for months near more than 700 burning oil well fires belching fumes and particulate matter without any protective equipment.
- Each of these exposures took place while troops were either engaged in combat, serving in a war zone, or stationed in the volatile region for a number of months.
A. Chemical weapons like nerve agents, mustard gas, etc.
B. Depleted Uranium- from the tank armor to the spent rounds, to the destroyed Iraqi equipment.
C. Experimental vaccines and drugs:
1. Anthrax vaccine
2. Botulism toxin vaccine
3. Pyridostigmine Bromide (anti nerve agent pills)
D. Biological weapons and viral agents engineered by man
E. Environmental Exposures:
1. Diesel fuel
2. Diesel fumes
4. Chemical agent resistant coating (CARC)Paint
F. Indigenous diseases
II. Medical Care
A. Denied claims
1. Inability to prove service connection due to missing records.
2. Inability to understand claims process due to lack of support from service organizations.
3. Denial of appeals due to missing deadlines due to not understanding the forms.
4. Denial of claims due to improperly submitted evidence.
5. Claims denied on the basis of being “not well grounded”
6. Claims approved on illnesses not requested for, or approved with no compensation.
B. Medical Treatment
1. Lack of care all together
2. Lack of appropriate care for illnesses presented
3. Lack of appropriate diagnostic tests being run
4. Denial or omission of positive test results
5. Treatment for psychological problems, unnecessarily, in the presence of heart, liver, or kidney problems.
6. Improper or limited diagnoses.
7. Being told by VA doctors that they, and I quote, “WE DO NOT TREAT GULF WAR RELATED ILLNESSES, BUT WE CAN REFER YOU TO PSYCHOLOGY.”
8. Refusal by both civilian and VA doctors to recommend diagnostic tests- VA based on the statement above, civilian due to the fact that they say go to the VA.
C. Family Issues:
1. Birth defects in our children
2. Learning disabilities in our children
3. Infection of our spouses and children with indigenous diseases and genetically engineered things.
4. Exposure of our families to our chronic illness, financial hardship, and in some cases even homelessness.
5. Inability to find causes if illnesses and issues in our children/ lack of medical care for them as well.
I am sure that I have omitted some of the things we face on a daily basis, but this is a fairly reasonable overview. The illnesses and problems faced are unique to each person. It seems as though no two people present exactly the same way. Each family faces different challenges and concerns, and the bottom line is that many are dying or already dead.
We are VETERANS, and the families of Veterans, we do not want your pity, or sorrow at our loss. We want your action.
Chief of Staff xxxxx
Special Advisor to the President xxxxx
To whom it may concern
I know my letter is long but please at least read it and see if you can do something. Bottom line I need help now, not a year from now.
My life has been taken away from me because of this unknown disease. It has affected my family, my career path and everything I have worked for.
I served my country I was not drafted. I volunteered and for almost 14 years you had nothing but dedication. Now I need support and I feel that everyone is out to get me. Pretty soon I will have no income yet I find it hard to seek employment as I live in a nightmare. Am I angry, suicidal, homicidal, emotional, upset with the system, anxious and/or depressed?
I am having problems and they have been worsening since my time spent in the gulf. I don't know whom to turn to because I'm having a problem focusing on the stuff in front of me. I am ok some days with moderate pain and able to function. Other times I am debilitated.
As I write this letter, I am hardly able to swallow. My tongue has some kind of virus that VA doctors can't identify. My eyes water, I'm sensitive to light, my joints are aching, I'm bitter, angry, depressed, I gasp for breath, I'm fatigued and I'm just at my wits end. I lay at night, wondering, if I have given my family something.
I feel afflicted with a disease that has left me sick. I have suffered enough and reports show many have died. I am destitute and have depleted my savings in an unsuccessful search for an explanation for my ailment. I am a military veteran of the Gulf War. The only thing I am asking is for nothing more than the assistance I have earned. Refusal on my immediate assistance leads me to question the integrity of the nation I served.
I have cysts in my arms, and legs and also soars forming, headaches, chronic fatigue, upper respiratory problems and I feel like I am losing control sometimes because for the last 9 to 10 years I have been led to believe I was imagining all this. After Desert Storm, I went into the work force in Dec 94 and left Feb 2001, thank GOD I got a severance package because Lord knows what I would be doing now. The last year I worked, I took off so much work because of symptoms.
I am being told I have to wait for a decision. The proof is in the pudding, I am living it. Instead of putting the burden of proof on us soldiers why can't the government open their eyes and prove we did not get a disease over there.
Why must we have it documented while we were over there in medical records? As a matter of fact, I don't care if it was anthrax, biological warfare or etc. Also, just because it might have not affected someone else in my unit or any other unit for that matter, they could have had a certain antibody for this anthrax and/or biochemical crap. It's not going to do me any good to pinpoint my location in Saudi Arabia or Kuwait. I just want it fixed so I can go on living a normal life.
Am I angry, suicidal, homicidal, emotional, upset with the system, anxious and/or depressed?
I have recently gone to VFW, and I will try and get justice. I am concerned however that the law states a veteran only has a year from the decision of a disability to include the family for extra pay. I was awarded 30 per cent yet sometimes the things I endure are debilitating. I have recently found out that I should have been drawing just a little more income for my spouse and son to help financially, however VFW told me the DAV didn't put in for this and I didn't know anything about it. Now that I know the law they say I cannot get back pay for something that was in fact owed to me, yet I didn't know about. I should have been receiving pay since 93 my award didn't start until 96. I am confused on how the system works because during my claim process, the DAV and the Appellate board knew I was married. My wife spoke in my behalf. Go figure. The law should be bent because DAV had my power of attorney. I should not be denied this.
The pain I experience is excruciating at times, I go into meditation as I was taught to endure pain via military, but I can only take so much at times so I have to rely on other resources when needed.
Sometimes I burst into tears for nothing at all because I feel worthless. I was so great and rising fast yet now I feel like my whole world has fallen. I was an account executive for a major firm, I served as an inspector for the 102nd Arcom, I was a maintenance sergeant and etc. I wiped a lot of noses in and out of service but I am having difficulty wiping my own.
What is it that we as veterans suppose to do with this disease of the unknown? VA can't pay you compensation because it takes months to be approved at the appellate board if it is approved at all, and social security takes months if it is not denied. What are we to do in the meantime? Why isn't there something set up for the obvious?
I don't go to the VA every time I have a headache, nor do I when all my other ailments occur yet I must provide proof via a doctor these things are happening. So here I have severe apnea, which is one of the signs and it took me to go to a private doctor to finally discover this. I have chronic fatigue, upper respiratory problems, in which my chest hurts and the doc wants to maybe take a piece of tissue from my lung, I have rashes, cysts, soars that inflame and become unbearable to touch, my back aches yet I try and exercise and do normal things, and I always try to stay positive. For if all of this is in my mind please help me remove it so I can live and press on.
I wished you people were in our shoes; no I don't because you wouldn't be in the same position, and you would get something done, because you have power. Well why can't you use your power for us.
One of the sadest letter, I ever read. What will it take for you to mobilize for us and for them?
Where is this letter from? Do you have the source? We can use this in our campaign.
You can also try a Google Site Search
Separate names with a comma.