Get on the bandwagon with central pain activism

[dejerine]

Okay everyone. If it just as easy to email the Director of the National Institutes of Health as it is to post at this site. Here is the email and address of the Director. Write often, write with passion, write like you have central pain. Let's at least make sure he knows what CP is. If he really knows that, he will do something about it. We want BASIC research--not to have the money soaked up in clinical studies. We know what they already have doesn't work, so it does little good to waste money reanalyzing what is out there. We need NEW ways to treat pain, which requires NEW understanding. Perhaps you could say since more is spent on pain than ANY OTHER medical problem, we would like to have research dollars equivalent to the problem.

Here is where you start

Dr. Elias Zerhouni, Director National Institutes of Health
email: zerhoune@od.nih.gov
phone: 301-496-2433
address: 1 Center Drive, Bethesda, MD, 20892-0148

eg.

Dear Dr. Zerhouni

Thank you for the dedicated work being performed on basic pain mechanisms at NIDCR. However, the pitifully small amount being expended is completely inadequate for the needs of those with central pain.

It is time to stop messing around with anticonvulsants for nerve injury pain and begin a serious study of neuroinflammation which leads to central pain, the most severe pain state known to man. It is a scandal to allow central pain to exist in this country. It is so severe that Dr. William Willis Jr, one of the lead investigators ,questioned whether it was ethical to give it to rats in order to study the condition. What does that mean about me then?

Central pain has put me in utter agony, is far worse than my paralysis, and I feel the funding should be increased to meet the problem. Since more is spent on pain than ANY OTHER MEDICAL problem, I really think the number of BASIC scientists should be increased a thousand fold.

An American who needs you to take action,
Name



If you want to get a whole lot more snotty than this, also send him a copy of a letter you have already sent to your elected representatives. They all have websites.

[IMHopeful]

Great Post!

With all the issues my son has to deal with, this is #1.

Email sent!

[firesmurf]

thanks for the info D,we will be sending off "my life(such as it is) with central pain".and of course the other freaky wierd strange and bizzare syndromes and crap i now am dealing with.people really need to know about this hidious crap and how just about anyone with even slight neuro damage can end up this way.maybe we will place him in our posistion?driving home after work one day and he suffers a car accident with spinal cord damage and what will happen to him from there?i think that may help?again thanks for the opportunity D,i never would have found this on my own.Marcia

[dejerine]

Thank you to those who have sent letters. From small things large things are accomplished.

Please send an email to Elias Zerhouni at the email listed. If you put the word "CENTRAL PAIN' in the message indicator, I think it will attract attention. His secretary brings to his attention accumulations of contacts. Please, everyone, ask for more basic research into central pain. Let him know how severe central pain is, ie. worse than the paralysis.

thanks

[Lindox]

Did it.

[dejerine]

I have been made aware of note being taken of our as yet modest letter writing campaign to Elias Zerhouni, Director of NIH. Let us increase this thing markedly by asking family members, neighbors, those on email lists, our doctors, and anyone who will listen to send this simple message:

Please increase funding for basic research on nerve injury pain markedly to help relieve the terrible suffering of those with central pain.

Once again, send to:

zerhoune@od.nih.gov

[quadvet]

I meant to post this earlier, dejerine but got caught up in your awesome earlier posts > :thumb:

E-mail sent, thanks for it.

Matt

[Andrea Thomas]

HI.. I also sent a message to the Director of NIH with my plea. A. Thomas

I have been made aware of note being taken of our as yet modest letter writing campaign to Elias Zerhouni, Director of NIH. Let us increase this thing markedly by asking family members, neighbors, those on email lists, our doctors, and anyone who will listen to send this simple message:

Please increase funding for basic research on nerve injury pain markedly to help relieve the terrible suffering of those with central pain.

Once again, send to:

zerhoune@od.nih.gov

[Andrea Thomas]

I like your attitude, it's very uplifting. Thanks...

[dejerine]

I have written twice already. Let's see if we can get to 200 emails. I guarantee Dr. Zerhouni is getting these messages. Keep up the good work.

[Lindox]

I have written twice already. Let's see if we can get to 200 emails. I guarantee Dr. Zerhouni is getting these messages. Keep up the good work.

Maybe you could duplicate this over in Life.
That seems to be where everyone does visit once in awhile at least.

Those that don't have pain don't think about it..and if their pain is relatively under control they don't WANT to think about it. But surely they will help if they become aware of the email campaign.

[dejerine]

Thanks to those who wrote to Elias Zerhouni, Director of NIH.

For those who want to write to the House of Representatives (or the Senate below), these website will tell you who it is and allow you to email a request for basic research on central pain.

http://www.house.gov/writerep/

For the senate, it is:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

[dejerine]

Based on the response I got from Dr. Tabak at NIH, I believe it may be more effective to write your congressment and senators. Dr. Tabak indicated one half of the pain money is spent on basic research at private labs across the U.S. The amount was not indicated. I take this to mean they would not want to quote amounts and risk censure. Therefore, I am writing to my congresspeople again and hope many of you will do the same.

I plan to say the following.

I appreciate the great work NIDCR is doing to try to help central pain patients, but the pain is so severe it is inhuman. Central Pain, which follows spinal cord injury or other nerve injury is the worst pain state known and there is presently no satisfactory treatment. Please use your influence to send more money to NIH for basic pain research.

[quadvet]

I've had to be an aggressive activist, on my own behalf, issue after issue. This has been my experience (from the counter-activist site following):
Large organizations [and governments] have learned to stonewall and not empower activists.

Some of these rules are ruthless, but they work. Here are the rules to be aware of: <snip>

Saul Alinsky's "Rules for Radicals".
(http://www.geocities.com/WallStreet/8925/alinsky.htm)
Anyone acting at any level of activism can benefit greatly from knowing these rules, but mostly, how they are countered.

I hope this helps.

.