Ending Neglect at the NIH: The ‘Campaign to End Chronic Pain in Women’ Get’s Its Chance

February 9, 2012

Posted by Cort Johnson

The statistics the Campaign to End Chronic Pain in Women cites are startling…$50 million women in the US suffer from six chronic pain conditions (ME/CFS, FM, Interstitial Cystitus, TMD, Endometriosus, Vulvodynia), one of which is ME/CFS, which cost the US economy 80 billion dollars a year…..yet the NIH devotes only $1.36 per woman a year to research these disorders.  (Is this the last great example of  discrimination against females in the medical community?)

Women with these disorders suffer from the same litany of problems as do people with ME/CFS…..they generally get  blank looks from physicians (and a quick call for anti-depressants), have difficulty simply getting diagnosed and once they are they are offered few treatment options.

The Campaign to End Chronic Pain in Women has only been around for about two years but they’ve made some real strides – people are listening.

  • Senate Budgetary Recommendations in 2011 called for increased research into these conditions
  • The NIH commissioned the  Institute of Medicine of the National Academy of Sciences to study the public health impact of chronic pain and develop recommendations to improve pain research, medical care and education.  In June 2011, the IMNAS released a 380 page recommending, among other things, that pain research be under the direction of one Institute.
  • The Agency for Healthcare Quality and Research (AHRQ) is doing an analysis of the economic impact these disorders have and the Army Surgeon General released a report that identified pain control as a critical need for the Dept of Defense.

The Campaign recommended that

“NIH-funded research on pain conditions that solely or disproportionately affect women, including chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia, should be substantially increased to be more commensurate with the collective toll these conditions take on individuals and the nation.”

The NIH responded by funding the Institute of Medicine Pain Study and the Pain Consortium focused its 2011 annual research  meeting on overlapping pain conditions. However, research funding levels remained unchanged.

Time For Action! – The Campaign has laid the groundwork and has already made an impact but  now it’s time for  real action. The only way to get funding increased is to get the Senate behind them and with that in mind, a Senate hearing on the inattention given to chronic pain conditions by the NIH is taking place on  Tues, Feb 14th at 2:30pm. The Pain in America: Exploring Challenges to Relief hearing will be simulcast live online at www.help.senate.gov.

What can you do? Compel your Senators to attend the hearing and get behind the campaign (see below).

It’s time to stop the neglect of women in pain – and remember – when you’re fighting for ‘chronic pain’ – you’re also fighting for more research for ME/CFS.  (The CFIDS Association of America is a founding member of the Campaign).  Read a letter from a Campaign to End Chronic Leader Ashley Rook  to find out how to support this vital cause.  (A sample letter  for a comment to your Senator is furnished below.)

Since the release of the June 2011 landmark Institute of Medicine report on chronic pain, the Campaign to End Chronic Pain in Women has been working diligently with other patient advocacy and medical professional groups to encourage the U.S. Senate Committee on Health, Education, Labor & Pensions (HELP) to convene the first hearing on this major public health epidemic that affects one-third of American adults at an annual cost of $635 billion.

The HELP Committee hearing, Pain in America: Exploring Challenges to Relief, has been scheduled for Tuesday, February 14, 2012 at 2:30 p.m. The Committee will be simulcast online at: www.help.senate.gov.

We need your help to encourage all of the HELP Committee Members to attend. The names (and associated states) of the Committee members are listed below.  If you live in one of these states, please send a brief note to your U.S. Senator by clicking on his/her name below and completing the online contact form. A template that you can copy/paste into the contact form and personalize is below.

We look forward to providing you with additional information as it becomes available.

Thank you in advance for your time and effort!

Members of the U.S. Senate HELP Committee

If you live in Iowa or Wyoming, please thank Senators Harkin and Enzi for calling this important hearing.

After sending your message please leave a comment on the blog stating you did so.

Comment Template to Copy/Paste into Contact Form and Personalize: 

Dear Senator [Last Name],

I am writing to thank you as a member of the HELP Committee for passing a bipartisan amendment calling upon the Institute of Medicine (IOM) to study our nation’s epidemic of chronic pain, and to urge you to attend the HELP Committee Hearing, Pain in America: Exploring Challenges to Relief, on Tuesday, February 14, 2012.

According to the June 2011 IOM study, 116 adult Americans suffers from chronic pain at an annual cost of $635 billion. I am one of them. Since [year], I have suffered from…  [In 1-3 sentences, summarize your experiences here, focusing on quality of life, medical care, lost productivity and associated costs.]

It is of utmost importance that our nation address this growing and costly public health concern.

Sincerely,

 

[Your Name]

3 comments

{ 2 comments… read them below or add one }

cort February 11, 2012 at 4:30 am

An interesting comment from the Forums
Hi Corinne,

I read your blog today for the first time and want to share my experience with Xifaxan with you. I was having gastro problems and was put on a treatment dose of it 3 times, always getting better in a couple of days on and worse after going off of it. So I looked up using it on a maintenance dose and discovered it is used for something on a maintenance dose. I asked my gastro doctor for the maintenance dose and was put on it. Treatment dose was 650 mg 3X day and maintenance is the same dose 2X day. I was diagnosed during this time with gastroparesis which slows emptying of the stomach and small intestine, causing rotting food to produce a build up or overgrowth of bacteria which sends toxins to the brain. I no longer feel sick after 25+ years of CFS and my energy and cognitive improvements are amazing! You might want to talk to Dr. P about a maintenance dose of xifaxan if you think it might help you. Could you please tell me what and where to get this strong probiotic you speak of? I’d much appreciate that. All the best, Esther

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cort February 11, 2012 at 4:31 am

A comment from Facebook

Cheryl wrote: “i liked reading this blog. and after having this disease at its most debilitating for 8 months , i have found much relief with similiar ideas.i drink gookinaids vitalyte electrolyte drink several times a day. and only eat whole foods (NO GMOs) with carefuls attention that there’s complete proteins at each meal. also use probiotics and avoid sugar. i got these ideas from reading about university studies. thank you so much for all who participate”

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