Congressional Letter Calls for Feds to Increase Funding

Cort

Founder of Health Rising and Phoenix Rising
Staff member
URGENT ADVOCACY REQUEST/ CALL TO ACTION

U.S. Representatives Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) have agreed to co-sponsor a U.S. House of Representatives letter to National Institutes of Health (NIH) Director Francis Collins. The letter solicits information about NIH’s current and future ME/CFS program and encourages the NIH to strengthen ME/CFS biomedical research. (Note: Both the letter and this message refer to the disease as ME/CFS, because that is the Representatives' chosen language.) The language in the letter was drafted by the two Congresswomen's offices and is NOT subject to change.

The letter is currently being circulated for additional signatures in the U.S. House of Representatives.
We need your help to add your representative’s signature to the letter. We are running on a deadline of representatives' sign-on due by this coming Wed, Aug. 31, and need you to contact your representative ASAP.

Steps:
1) Identify your U.S. House of Representatives Member
2) Call your U.S. House of Representatives Member
3) Email your U.S. House of Representatives Member
Step 1: Find your House of Representatives Member:

To find your U.S. House of Representatives member, you may visit http://www.house.gov/representatives/find/
Please note that this action is for REPRESENTATIVES ONLY, NOT SENATORS. Please do NOT contact your senator about this letter. We hope to have another letter available for senators to sign at a later date.

Step 2: Call your House of Representatives Member:
NOTE: You may be asked for your exact address -- including zip+4 – to determine whether or not you are a constituent. You can get your zip +4 at:
https://tools.usps.com/go/ZipLookupAction_input)

Use this script:

My name is _________. I’m a constituent in (city) . I am calling with an urgent request for Representative ______ to sign on to a letter to the National Institutes of Health, sponsored by Representatives Lofgren and Eshoo of California. The letter supports the 1 to 2.5 million Americans like me [my sister/friend/etc] who are afflicted with the disabling, and costly disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. ME/CFS has no known cure or FDA-approved treatment, even though it can leave patients bedridden for decades.

May I be connected to your health legislative assistant?
Click here if they say YES
Click here if they say NO

If no:

Leave a message with the intern or staff member. FEEL FREE TO BRIEFLY DESCRIBE YOUR OWN STORY. REGARDLESS, YOU SHOULD ADD:

The deadline for signing on to Representatives Lofgren and Eshoo’s letter to the NIH is Aug. 31. I will email (or fax) your office the letter. You may contact Angela Ebiner, Legislative Assistant for Congresswoman Lofgren, at Angela.Ebiner@mail.house.gov or (202) 225-3072to coordinate your participation.

It would mean the world to me, my family, and other ME/CFS patients in our district to have Representative ____’s support. May I call back tomorrow to find out if Representative ____ will sign this letter?
If yes:

If the legislative health aide picks up, read on or click here.
If you get the answering machine, click here.

Use the same script with the legislative health aide:

My name is _________. I’m a constituent in (city) . I am calling with an urgent request for Representative ______ to sign on to a letter to the National Institutes of Health, sponsored by Representatives Lofgren and Eshoo of California. The letter supports the 1 to 2.5 million Americans like me [my sister/friend/etc] who are afflicted with the disabling, and costly disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. ME/CFS has no known cure or FDA-approved treatment, even though it can leave patients bedridden for decades.

The legislative aide does not pick up.

Leave a brief voicemail for the Health Legislative Assistant.

Use this script:

My name is _____, and I am constituent in (city) . (I /my loved one suffer(s)) from the debilitating disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS, which has no known treatment, or cure. I would like Representative _____ to sign on to a letter addressing NIH Director Francis Collins, in support of ME/CFS patients and research. The letter is sponsored by Representatives Lofgren and Eshoo of California. The deadline for signing on to the letter is Aug. 31. Please call me back at ___________. I will also email your office a draft of the letter, and will call back tomorrow to confirm that you received it. Thank you, and have a wonderful day.


Step 3: Write your House of Representatives Member:
If you are provided with an email address, you may use the email draft below. If not, you can use the Representative’s website form to send the draft email.[1] Please note that #MEAction has made its Fact Sheet copied below available for use with this action.

Thank you for all your hard work – we can make a difference by fighting in small but significant ways for better treatment, better funding, and better medical education for ME/CFS patients.


EMAIL BLAST

Dear [Staffer's Name],

I’m emailing with an urgent request regarding the disabling neuro-immune disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. Representatives Lofgren and Eshoo of California are sponsoring a letter to NIH Director Francis Collins in support of ME/CFS patients and research. ME/CFS costs the U.S. economy $17-24 billion annually; leaves its patients with lower quality of life scores than lung cancer, stroke, and rheumatoid arthritis; and has no known FDA-approved treatment or cure. Would you please support me and the 1 to 2.5 million Americans suffering from this disabling disease, by signing this letter? It would mean the world to me, my family, and other ME/CFS patients in our district to have your support.

I've copied final language for the letter to NIH Dir. Collins below. Please contact Angela Ebiner, Legislative Assistant for Rep. Zoe Lofgren (CA-19) at Angela.Ebiner@mail.house.govor (202) 225-3072 to coordinate your participation. The letter’s deadline is 8/31.

Thank you so very much for your support on this critical action. I look forward to your reply on this request at your earliest convenience.

Warmest Regards,
[Your Name]
[Your Contact Info, Including address and +4 zip]

Text of Letter to NIH Director Francis Collins


Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001


Dear Dr. Collins:


We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.


As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.


A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.


We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.


Thank you for your attention to these critical issues. We look forward to your response.


Sincerely,


Zoe Lofgren Anna G. Eshoo
Member of Congress Member of Congress



#MEAction Fact Sheet
congress@meaction.net


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)


Request
  • Sign on to the letter being circulated by Reps. Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) to NIH Director Collins in support of ME patients and research. Due date 8/31.
  • Support the NIH to establish an intramural and extramural ME/CFS program, funded at levels comparable to illnesses with similar prevalence and economic cost to society.

Rationale
  • NIH Director Francis Collins has announced the launch of new research and an ME/CFS working group to encourage external research, but the budget has yet to be developed.[2]
  • There are no FDA-approved treatments and no diagnostic tools for ME/CFS.
  • Between 836,000 and 2.5 million U.S. residents are afflicted with ME/CFS, with 84 to 91 percent not yet diagnosed.
  • ME/CFS-related medical expenses and lost productivity cost the U.S. $17 to $24 billion annually.[3]
  • The Institute of Medicine, a special HHS advisory committee[4], and a recent NIH-appointed expert panel all agree: It is imperative to increase research funding for ME/CFS.[5]
  • In research funding, ME/CFS receives about the same money for research as hay fever, and ranks far below similarly disabling illnesses:

ME/CFS: About $2 per patient per year in NIH funding ($6 million in FY2015)
Multiple sclerosis: About $235 per patient ($94 million in FY2015)
HIV/AIDS: About $2500 per patient ($3 billion in FY2015)

  • Myalgic encephalomyelitis is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.[6]
  • Patients with ME/CFS score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.[7]

[1] If you have called your representative previously, please keep your name consistent. For example, if you have used a nickname in the past, continue to do so.
[2] Bernstein, L. (2015, Oct. 29). NIH announces new effort to tackle chronic fatigue syndrome. The Washington Post. https://www.washingtonpost.com/news/to-your-health/wp/2015/10/29/nih-announces-new-effort-to-tackle-chronic-fatigue-syndrome/
[3] Institute of Medicine “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” 2015. Available: http://tinyurl.com/ljt9p96
[4] HHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) “Recommendations” June 2014. Available: http://tinyurl.com/ozv3eqd
[5] NIH Pathways to Prevention, “Advancing the Research on ME/CFS” June 2015. Available: http://preview.tinyurl.com/pqcptnl
[6] Dimmock, M, “Thirty Years of Disdain: How HHS Buried ME”, May 2015. Available: http://tinyurl.com/owonsn7
[7] “Health-Related Quality of Life for Patients with ME/CFS,” PLoS One, 2015
 

Tina

Well-Known Member
URGENT ADVOCACY REQUEST/ CALL TO ACTION

U.S. Representatives Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) have agreed to co-sponsor a U.S. House of Representatives letter to National Institutes of Health (NIH) Director Francis Collins. The letter solicits information about NIH’s current and future ME/CFS program and encourages the NIH to strengthen ME/CFS biomedical research. (Note: Both the letter and this message refer to the disease as ME/CFS, because that is the Representatives' chosen language.) The language in the letter was drafted by the two Congresswomen's offices and is NOT subject to change.

The letter is currently being circulated for additional signatures in the U.S. House of Representatives.
We need your help to add your representative’s signature to the letter. We are running on a deadline of representatives' sign-on due by this coming Wed, Aug. 31, and need you to contact your representative ASAP.

Steps:
1) Identify your U.S. House of Representatives Member
2) Call your U.S. House of Representatives Member
3) Email your U.S. House of Representatives Member
Step 1: Find your House of Representatives Member:

To find your U.S. House of Representatives member, you may visit http://www.house.gov/representatives/find/
Please note that this action is for REPRESENTATIVES ONLY, NOT SENATORS. Please do NOT contact your senator about this letter. We hope to have another letter available for senators to sign at a later date.

Step 2: Call your House of Representatives Member:
NOTE: You may be asked for your exact address -- including zip+4 – to determine whether or not you are a constituent. You can get your zip +4 at:
https://tools.usps.com/go/ZipLookupAction_input)

Use this script:

My name is _________. I’m a constituent in (city) . I am calling with an urgent request for Representative ______ to sign on to a letter to the National Institutes of Health, sponsored by Representatives Lofgren and Eshoo of California. The letter supports the 1 to 2.5 million Americans like me [my sister/friend/etc] who are afflicted with the disabling, and costly disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. ME/CFS has no known cure or FDA-approved treatment, even though it can leave patients bedridden for decades.

May I be connected to your health legislative assistant?
Click here if they say YES
Click here if they say NO

If no:

Leave a message with the intern or staff member. FEEL FREE TO BRIEFLY DESCRIBE YOUR OWN STORY. REGARDLESS, YOU SHOULD ADD:

The deadline for signing on to Representatives Lofgren and Eshoo’s letter to the NIH is Aug. 31. I will email (or fax) your office the letter. You may contact Angela Ebiner, Legislative Assistant for Congresswoman Lofgren, at Angela.Ebiner@mail.house.gov or (202) 225-3072to coordinate your participation.

It would mean the world to me, my family, and other ME/CFS patients in our district to have Representative ____’s support. May I call back tomorrow to find out if Representative ____ will sign this letter?
If yes:

If the legislative health aide picks up, read on or click here.
If you get the answering machine, click here.

Use the same script with the legislative health aide:

My name is _________. I’m a constituent in (city) . I am calling with an urgent request for Representative ______ to sign on to a letter to the National Institutes of Health, sponsored by Representatives Lofgren and Eshoo of California. The letter supports the 1 to 2.5 million Americans like me [my sister/friend/etc] who are afflicted with the disabling, and costly disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. ME/CFS has no known cure or FDA-approved treatment, even though it can leave patients bedridden for decades.

The legislative aide does not pick up.

Leave a brief voicemail for the Health Legislative Assistant.

Use this script:

My name is _____, and I am constituent in (city) . (I /my loved one suffer(s)) from the debilitating disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS, which has no known treatment, or cure. I would like Representative _____ to sign on to a letter addressing NIH Director Francis Collins, in support of ME/CFS patients and research. The letter is sponsored by Representatives Lofgren and Eshoo of California. The deadline for signing on to the letter is Aug. 31. Please call me back at ___________. I will also email your office a draft of the letter, and will call back tomorrow to confirm that you received it. Thank you, and have a wonderful day.


Step 3: Write your House of Representatives Member:
If you are provided with an email address, you may use the email draft below. If not, you can use the Representative’s website form to send the draft email.[1] Please note that #MEAction has made its Fact Sheet copied below available for use with this action.

Thank you for all your hard work – we can make a difference by fighting in small but significant ways for better treatment, better funding, and better medical education for ME/CFS patients.


EMAIL BLAST

Dear [Staffer's Name],

I’m emailing with an urgent request regarding the disabling neuro-immune disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. Representatives Lofgren and Eshoo of California are sponsoring a letter to NIH Director Francis Collins in support of ME/CFS patients and research. ME/CFS costs the U.S. economy $17-24 billion annually; leaves its patients with lower quality of life scores than lung cancer, stroke, and rheumatoid arthritis; and has no known FDA-approved treatment or cure. Would you please support me and the 1 to 2.5 million Americans suffering from this disabling disease, by signing this letter? It would mean the world to me, my family, and other ME/CFS patients in our district to have your support.

I've copied final language for the letter to NIH Dir. Collins below. Please contact Angela Ebiner, Legislative Assistant for Rep. Zoe Lofgren (CA-19) at Angela.Ebiner@mail.house.govor (202) 225-3072 to coordinate your participation. The letter’s deadline is 8/31.

Thank you so very much for your support on this critical action. I look forward to your reply on this request at your earliest convenience.

Warmest Regards,
[Your Name]
[Your Contact Info, Including address and +4 zip]

Text of Letter to NIH Director Francis Collins


Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001


Dear Dr. Collins:


We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.


As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.


A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.


We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.


Thank you for your attention to these critical issues. We look forward to your response.


Sincerely,


Zoe Lofgren Anna G. Eshoo
Member of Congress Member of Congress



#MEAction Fact Sheet
congress@meaction.net


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)


Request
  • Sign on to the letter being circulated by Reps. Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) to NIH Director Collins in support of ME patients and research. Due date 8/31.
  • Support the NIH to establish an intramural and extramural ME/CFS program, funded at levels comparable to illnesses with similar prevalence and economic cost to society.

Rationale
  • NIH Director Francis Collins has announced the launch of new research and an ME/CFS working group to encourage external research, but the budget has yet to be developed.[2]
  • There are no FDA-approved treatments and no diagnostic tools for ME/CFS.
  • Between 836,000 and 2.5 million U.S. residents are afflicted with ME/CFS, with 84 to 91 percent not yet diagnosed.
  • ME/CFS-related medical expenses and lost productivity cost the U.S. $17 to $24 billion annually.[3]
  • The Institute of Medicine, a special HHS advisory committee[4], and a recent NIH-appointed expert panel all agree: It is imperative to increase research funding for ME/CFS.[5]
  • In research funding, ME/CFS receives about the same money for research as hay fever, and ranks far below similarly disabling illnesses:

ME/CFS: About $2 per patient per year in NIH funding ($6 million in FY2015)
Multiple sclerosis: About $235 per patient ($94 million in FY2015)
HIV/AIDS: About $2500 per patient ($3 billion in FY2015)

  • Myalgic encephalomyelitis is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.[6]
  • Patients with ME/CFS score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.[7]

[1] If you have called your representative previously, please keep your name consistent. For example, if you have used a nickname in the past, continue to do so.
[2] Bernstein, L. (2015, Oct. 29). NIH announces new effort to tackle chronic fatigue syndrome. The Washington Post. https://www.washingtonpost.com/news/to-your-health/wp/2015/10/29/nih-announces-new-effort-to-tackle-chronic-fatigue-syndrome/
[3] Institute of Medicine “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” 2015. Available: http://tinyurl.com/ljt9p96
[4] HHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) “Recommendations” June 2014. Available: http://tinyurl.com/ozv3eqd
[5] NIH Pathways to Prevention, “Advancing the Research on ME/CFS” June 2015. Available: http://preview.tinyurl.com/pqcptnl
[6] Dimmock, M, “Thirty Years of Disdain: How HHS Buried ME”, May 2015. Available: http://tinyurl.com/owonsn7
[7] “Health-Related Quality of Life for Patients with ME/CFS,” PLoS One, 2015
Done.
 

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