Thursday, November 11, 2010

Notify the NIH about including MTrPs in the proposed FM diagnostics

I won't give up on this most important issue. You an find the original letter from me to the NAIMS/NIH, American College of Rheumatology, and the editors of Arthritis Care and Research in my October blogs.

Dear FM friends,

Please take a moment to send the National Institute of health (NAIMS) a two sentence note (below) asking why they are not responding to the new research regarding assessment of myofascial trigger points in the new proposed criteria for FM. They have been resistant beyond belief to fund the research we so desperately need, and while contributions from our community to those who advocate and support research is appreciated, it is not enough. Our government should support us in ways other than supporting research of pharmaceuticals that are either too costly, ineffective, or interact with our other medications.

There are treatments that are more helpful for myofascial trigger point pain, (myofascial trigger point therapy, acupressure, active release therapy and acupuncture) yet they are not being considered. Why? I would like to think otherwise, but my suspicion is that the government doesn’t want to reimburse for these treatments. There is no way for them to make money, and we don’t have lobbyist or government committees’ that will force their hand for the FM patient. We need further research for treatments of FM pain from myofascial trigger points to validate the cost savings and improve our function, and we need research for the cause. Once physicians assess for myofascial trigger points, their existence will be taken more seriously and the research regarding this peripheral input that keeps the FM brain in constant sensitization will have more support.

Shouldn’t our tax dollars support research that considers the cause of FM rather research that only provides a Band-Aid©? These newer medications are proving not to be as effective as the pharmaceuticals would like our doctors to believe. Then they have the gall to police use of pain medications that are affordable. While I appreciate some are receiving a benefit of these newer medications, it should be a choice for those of us who do not have the financial means to access them or cannot tolerate them, and a choice to have expenses of effective alternative therapies reimbursed, which currently are too expensive for the average FM patient.

The original letter can be found at my blog or in the discussion area of our page (links below) If you have the energy I encourage you to include how this impacts you personally, but that is not necessary if your energy reserve is low. This is so important to us and future generations of FM patients. Here is the addy for this letter so you can let us all know if you receive any comments from the NIH.

I hope you will copy and paste the following and send it to the National Institute of Arthritis and Musculoskeletal and Skin diseases (NIAMS)/National Institute of Health (NIH).

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Celeste Cooper, patient advocate for our group, has not received a response from you regarding her letter written October 20, 2010, “Proposed Criteria for Diagnosing Fibromyalgia”

You can refer to the letter at either link provided here.


(Provide your contact information if you like, and I hope you will post your note and any replies in the discussion area of the page so we can hear your voice. Please share this among your other groups.)

"Never doubt that a small group of thoughtful, concerned citizens can change world. Indeed it is the only thing that ever has."
--Margaret Mead

Harmony and Hope, Celeste

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