Friday, April 29, 2011

THE ADVOCACY PACKAGE

"If the creator had a purpose in equipping us with a neck,
he surely meant us to stick it out."
-Arthur Koestler


How to be an advocate.

For people who suffer chronic disorders, advocating can be therapeutic. It is about using your voice to help others by supporting a common goal.


TEN TOP TIPS

1) Pick a topic you are personally riled up about. For instance, the proposed criteria for diagnosing fibromyalgia or the criteria you want to see used from diagnosing ME/CFS, the lack of insurance reimbursement for therapies considered alternative, a name change, the right to have pain managed reasonably or the politics of getting the “right” research funded.

2) Share, share, share. May our spirit fill us with understanding of victory and defeat, the gift of collaboration, the wisdom to choose the right path, and inspire us to hope.

3) Respect your limits. I set a timer, which keeps the respect for my limits in check.

4) Set achievable goals, avoiding the pitfalls of burnout. Do not set out to change the world, set out to express your personal thoughts, and then change the world. It is the common thoughts of many that make us a community, the stream.

5) Accept your right to be heard. Do not let others intimidate you. Whether it is time, talent or treasure, all are important. A rock pitched into a stream changes its course for eternity, be a rock. It is the common thoughts of many that make us a community, the stream.

6) Accept that you might not always get a reply, but believe that somebody is listening. We never know how far or how wide we are received.

7) Stay organized. There will be days when your brain works in tandem with the keyboard and others when everything is foreign. Important for a fogged brain is to stay on task, decide on key points and make a check list so you can leave and come back.

8) Carry your advocacy into your own healthcare. Let your healthcare providers know what you are doing and if there is anything they might like to contribute. Granted you need the right healthcare provider, if you don’t have one, try to find one.

9) Provide a mechanism for follow up by journaling your advocacy efforts. I fie every advocacy piece I write with the contact information. If I get a response, I copy and paste it into that same word file with the date and time.

10) Remember you are on a team. You are not alone, many choose advocacy as a way of coping with change. Besides the obvious, extend your realm; reach out to co-workers, friends, spiritual groups, or immediate and extended family. Enrich your relationships by sharing the recent research, you might change the way others see us.

All it takes is the will to be an advocate. We speak out and vent our discontent every day to each other. All the advocate is doing is reaching out to a larger perimeter of people. People who may be in a position to have an impact on fibromyalgia, chronic fatigue syndrome or chronic myofascial pain, finding the cause, education for the “right” treatments or fundraising for research. Advocates need to know they have backing from the community they are trying to help. Share what you do and support each other.

Being an advocate give a sense of having some control. Every motivational speaker will tell you, “if you want to be successful, surround yourself with successful people.” I say, “If you want to be an advocate surround yourself with people of like goals.”

"If I have seen further it is by standing on the shoulders of giants."
--Isaac Newton


Finding others with common goals

So, now we know you want to be an advocate, you want to have your voice heard. How do you go about it?

• Web search links to personal stories others are willing to tell, see who they support and do some research on them.

• If you are interested in medical research, go to www.pubmed.com and do a search for articles on fibromyalgia, chronic fatigue syndrome, or chronic myofascial pain from trigger points. Contact the author, usually there is an email for at least the lead author. Note who is supporting the recent research and look for people with a common interest.

• Be suspicious of any web pages that do not list resources. There is no gatekeeper for the internet.

• Avoid those asking for money without giving you valid reasons for wanting it, such as supporting research, providing education, speaking out politically. If they are using the money for the right reasons, believe me, they will make sure you know it.

• Reach outside your home base. In other words, look at what others outside the community are doing for you and contact them. This might include a chiropractor, physical therapist or massage therapist that specializes in trigger point therapy, an organization that specializes in pain advocacy or a group that works with neuroimmune or rare disorders. Network with them.

• Recruit people from your own local support group, or buddy up with someone from an online support group.

• Give credit where credit is due. Once you get yourself out there, you will be amazed at the amount of networking that goes on, people putting people in touch. Of course there are some who are very territorial; personally, I steer clear of these folks. You want to align yourself with people of like philosophy. Mine is that collaboration is the key to success. Why try to reinvent the wheel when there is so much to be learned from others who have walked the path before you?

• Be aware that there are people who take exception to anything you do. We are all tired, many of us in a fog, sleep deprived, and in pain so we don't always come off right either. Those who continue to rebuff you are not worth the waste of your energy. They for their own reasons are not likely to come around to your way of thinking, and there are plenty of people out there that are ready to hear what you have to say.

• Staying positively focused as an advocate is important. I still boo hoo to my close friends, but I keep it to a minimum in the community I serve.

Here is a copy of my latest advocacy letter to over 50 people (personalized of course) It is due to hit the air waves for the month of May. Feel free to copy any of it or all of it and use it for yourself. The only thing I ask is that you personalize it in some way so it will have a greater impact. All you have to do is send it to the contacts listed and you will be your own best advocate. Don’t be the person standing waiting for help to arrive assuming someone else has already called 9-1-1.

This is my 9-1-1 to you.


You may also find the letter at http://fmcfstriggerpoints.blogspot.com/2011/04/may-letter-on-proposed-fm-diagnostics.html

RE: Diagnostic Criteria for Fibromyalgia

Dear Ladies and Gentlemen, (Personalize unless it is being sent to multiple recipients)

First Gear “The hook” – A statement that will engage the reader

You probably already know that fibromyalgia is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But did you know that currently the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, even though the study by Bazzichi L et al) shows Hashimoto’s patients may have a link to fibromyalgia? Did you know there is a higher incidence of restless leg syndrome in the fibromyalgia patient than the general public? Did you know that scientists believe what were once thought to be specific diagramed “tender points,” used to diagnose fibromyalgia, are now thought to be knotted up pieces of muscle fiber called trigger points? Or that these trigger points, which are easily felt by a trained examiner unless the muscle is too taut, or the trigger point is deep beneath other muscle or behind bone, can radiate pain to other parts of the body? While it is possible that more research is needed to include the presence of Hashimoto’s or restless leg syndrome as part of the diagnostics, it should be considered in assessing the FM patient, and the research on the association of myofascial trigger points (resulting from excessive release of acetylcholine across the neuro-muscular junction) as peripheral pain generators to FM is staggering. (See the citations in the copies of letters attached).

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Second Gear “Personalization”

Fibromyalgia is a biological disorder. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep. See what you come up with and then try to tell me it is all in my head.

Third Gear “History” (What is your relationship with this piece. Are you outraged? Have you taken this issue up with someone else? Are you in agreement with something someone else has had to say? You are welcome to make reference to my letters stating it is the correspondence from Celeste Cooper)

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

Fourth Gear “State your case”

While the authors of the preliminary proposed criteria for diagnosing fibromyalgia have done a good job defining the central and autonomic effects of FM, it is not complete without the assessment of the body-wide myofascial trigger points (MTrPs) fibromyalgia patients deal with. Restless leg syndrome and its counterpart periodic limb movement, found at greater rates in FM which may be a factor in sleep quality, may also be related to the dysfunction caused by peripheral MTrPs. And it is a patient’s right to have their metabolism restored in the face of thyroid disease and not overlooked as a symptom of fibromyalgia.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Full Speed Ahead “Provide for follow up”

Can we, the fibromyalgia community, and most likely someone you know personally, count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. I don’t expect that assessing and addressing these additional issues will cure fibromyalgia, however we need a scientifically based protocol that is consistent among all those treating, researching, and educating this disabling disorder.

One cannot or should not ignore the science set before us. We need to move the science in the right direction until a cause and a cure is found. We need validation so that our government and others will help support the research necessary to help fibromyalgia patients get back to work, and lead productive lives. We need to be able to count on someone. If you are unable to facilitate, would you share information here with someone who is in that position, so that we maintain forward momentum.

Sincerely,
Signature [Type or sign your name here.]

Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)

You may contact me at ….
For more information visit, www.TheseThree.com

Attachments: [Name any attachments that support your letter and its content.]

October 20, 2011 letter
Letter to Mr. Clark, Public Liaison, NIAMS (NIH)


Copy: [List anyone you feel would benefit from knowing you have sent out your letter]

Resources: [If you have made reference to a particular article or research be sure to list the full citation].

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.

Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

Ge HY, Wang Y, Danneskiold-Sams√łe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

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