Chronic Pain Campaign website

[jspotila]

If anyone is interested, the Campaign to End Chronic Pain in Women website is now live. There is a short film, in which CFS is described as one of the conditions most likely to be dismissed as psychological. There is also a 40 page report with analysis and policy recommendations.

The launch event this morning was emceed by Ms. McCleary from the CFIDS Association, and was expected to get press attention from the AP and other outlets. A variety of meetings with Congressional offices were also scheduled for yesterday and today. Video from the launch event should be available within a couple of days.

 

[MEKoan]

As a woman, and a woman who has had both severe endometriosis and TMJ, I am very happy to see such a well made, effective and coherent video re the issues faced by women who suffer from chronic pain.

As a woman with ME, I can only wish there existed such a good tool for ME awareness.

ETA I was going to add that perhaps the CAA could tap into whatever source of funding created this campaign and video but I'm really confused as to the CAA's role in this so I will leave that to someone else.

 

[jspotila]

The CFIDS Association is one of the patient organizations that helped shape this campaign. The campaign itself was funded by Pfizer, and the various organizations provided extensive input into the elements of the campaign.

Ms. McCleary has, by participating in the campaign, gained access to members of Congress and the press that we have not been able to access before. Her participation (both in shaping the campaign and in the presentations today) has raised the profile of CFS. The Association's intention for joining the campaign is to leverage the pooled resources and patients affected by all the conditions in order to make more progress for research and education.

 

[MEKoan]

Hey Jennie,

Ok, good! So, that means that Ms McCleary can access new sources of support and funding and has made new linkages that could benefit ME/CFS!

I must say that I don't see how this particular campaign raises the profile of CFS beyond the players involved but, given the aforesaid linkages, that may be a moot observation.

The video was excellent! You can see that they put some money into it. I hope Pfizer develops an interest in ME!

Peace out,
Koan

 

[jspotila]

The report available on the campaign website is long, but worth a read if you have the energy. Chronic Pain in Women: Neglect, Dismissal and Discrimination can be downloaded here: http://www.endwomenspain.org/about

The report makes the case for investment in research, education and awareness. Something we've discussed in many threads on this forum is the disparity between the impact of CFS on the economy vs. NIH investment. The report highlights this in a table showing per patient NIH investment in MS ($463), Diabetes ($53), Fibromyalgia ($2.16), CFS ($1.25) and other illnesses, based on NIH's 2009 funding numbers. The report also hooks into the health care reform act and initiatives it included for chronic pain.

The meetings on the Hill yesterday and day have given us the opportunity to put these numbers in front of key members of the appropriations committees.

 

[Kati]

Thank you Jennie, great explanation, and what an eye opener!

I would also add the comment that it is not only male doctors dicounting women's pain- female doctors do it too.

 

[starryeyes]

I like how they made it look like we were wandering in a maze with the writing on the walls.

 

[justinreilly]

Jennie,

The video was great! (although ME was called "chronic fatigue" once)

This coalition seems very promising!

 

[Ever Hopeful]

Pfizer has an indication for Lyrica for fibromyalgia - I would assume behind the scenes they are very interested in what role Lyrica could play with ME/XMRVers at some point. It's all about the dollar and stock price! But hey- if it gets them pumping research money our way - more power to "em!

 

[jspotila]

At the end of today's webinar with Dr. Charles Lapp on his Stepwise approach to treating CFS and FM, Ms. McCleary offered a little recap of yesterday's Congressional briefing and meetings on this campaign.

The Congressional briefing was attended by 80 people - well over the capacity of the room - and was held in cooperation with the Congressional Caucaus for Women's Issues. After the 1 hour briefing, there were about one dozen meetings with members of Congress and/or their staff including the offices of Senator Harry Reid, Representative Pelosi, and Representative Waxman. It was a productive day, and the Association will provide updates on the Campaign and its progress. Overall, enthusiasm was very high for this cross-diagnosis approach to the very serious issues facing women and how they interface with the health care system.