Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> Your OUCH homework assignment!
        
(Message started by: Bob P on Aug 22^nd, 2002, 4:07pm)

Title: Your OUCH homework assignment!
Post by Bob P on Aug 22^nd, 2002, 4:07pm

This is this weeks work assignment for all of the OUCH Members. Visit one of the medical publication sites such as PubMed, Medscape or Headache Journal. Pick one of the CH research articles. Write the researcher a nice thankyou letter:

"I just finished reading your paper on ...... On behalf of OUCH, the world's only cluster headache support organization, I want to thank you for your fine research into cluster headaches.

OUCH has access to thousands of cluster sufferers and we would be delighted to assist in any future research projects or surveys.

Once again, thank you for your reseach into our condition.

Sincerely,
Joe Blow
Organization for Understanding Cluster Headaches
www.clusterheadaches.org

That should help the medical community recognize that OUCH is out here.

Report back to us on any responses you get from the doctors.

This is for all of you who wondered what you could do for OUCH.

Title: Re: Your OUCH homeowrk assignement!
Post by Slammy on Aug 22^nd, 2002, 4:22pm

Fantastic idea, Bob!

I'm all over it! ;D

Slammy 8)

Title: Re: Your OUCH homeowrk assignement!
Post by Bob P on Aug 22^nd, 2002, 4:54pm

Hey Slammer,

You're already working on Kudrow.

I'd really like to make him OUCH's mentor.

Tell us what we're doing right and wrong. What we could do better. What would make us more legitimate in the eyes of the medical world.

Tell us how we can get involved in the research going on.

Guess that should be enough to keep your conversation going during your next visit.

~~~~~~~~~~~~~~~

My home work report. I found on the AHS (American Headache Society) web site that Dr. Newman is giving a presentation on CH at their November Symposium.

I e-mailed him and thanked him for doing the presentation. Offered OUCH to help him in any way we could and asked him to remeber that we have a large resource of clusterheads to draw from for future research (do you realaize that the largest survey of clusterheads, ever, in the whole history of the world, is in the button to the left).

I haven't heard back form him yet. If I don't hear by the end of the week, I'll resend the e-mail.

Title: Re: Your OUCH homework assignment!
Post by maria on Aug 22^nd, 2002, 6:25pm

Hey BobP, do I get extra credit for an assignment turned in early? I emailed a thank you to Dr. Peres for an article he wrote in Cephalgia, reporting positive results in treating CH's with melatonin. Maria

Title: Re: Your OUCH homework assignment!
Post by Not4Hire on Aug 22^nd, 2002, 6:34pm

hey Bob/Slamguy:

now we're talkin' REAL effective motivation ...and I hope we CAN make a bit of difference.... this MOFO came back to me the other day...after a blessed 2 month respite... and the feeling that that *tap* on the shoulder filled me with was like the cold finger of Death ....... damn, clusterfolk, this may be the push to the frontier that gets us in the limelight of researchers who can help us ALL.... ya ain't got ONE hair on yer ass if ya don't take BobP's advice to heart..... take 15 minutes and DO IT !!!

thank you Slammy for your efforts with Dr. Kudrow..... we know you can charm 'im..... just pretend he's got .......those lips....those eyes....LOL ;D..... but DO NOT bend over .....them docs can see ya comin'..........

Really lookin' for some doctors to harangue ol' N4H.........

Title: Re: Your OUCH homework assignment!
Post by Drk^Angel on Aug 22^nd, 2002, 6:46pm

I've been doin' this all along anyways...

PFDAN..................... Drk^Angel

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 23^rd, 2002, 8:28am

OK. I'm not gonna let this one slip down the board.

Slammy, Maria and DA are on board. Good work gang.

Anyone else manage to find a researchers e-mail and send them a note in OUCH's name?

Step up and get your attaboy if ya did.

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 23^rd, 2002, 10:13am

Here's a little help. Some links to research article sites:

Headache Journal, dates of issues are in the upper right corner of the page, click on "Abstract" to view articles - http://ahsnet.org/journal/

PubMed - http://www.ncbi.nlm.nih.gov/cgi-bin/Entrez/referer?/htbin-post/Entrez/query%3fdb=m&form=6&uid=10214533&Dopt=m

The Lancet, type "cluster headache" in the search box - http://www.thelancet.com/

Medscape, I think one takes a free registration to access - http://www.medscape.com/px/urlinfo

Hope this helps some.

Title: Re: Your OUCH homework assignment!
Post by dannyboy on Aug 23^rd, 2002, 10:52am

I ain't found his e-mail yet but Karl Ekbom is mine!

He was the first to do research into the effects of digital compression of extra-cranial arteries in cluster headaches

Then again, I guess no one else would mail Ekbom anyhow because he Obviously didn't know what a clusterheadache was ... dream on cretans

He's mine ... and so are all of you .... mwahahahaha

Nice one Boob, you're the bomb, rock on

Danny

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 24^th, 2002, 11:10am

Antone else finished their homework yet?

I'm not letting this go! I'm gonna force all you people who want to do something to help OUCH into doing something to help OUCH!

Never mind the responses from the Doc's. Has anyone sent off an e-mail to a research doc yet?

Title: Re: Your OUCH homework assignment!
Post by catlind on Aug 24^th, 2002, 11:14am

I'll get right to it BobP, I subscribe to medscape and this last newsletter actually defined a new category of headaches. I'll prepare my letter on an article I liked and send it off ASAP.

I'm also taking in a full package from the OUCH and this site to my neuro when I go on the 30th of this month.

Cat

Come to think of it, as a military dependant, I will send a package and info off to the headache clinic at Walter Reed Army medical center and Wilford Hall AF Medical center.

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 24^th, 2002, 11:35am

Now yer talkin' Cat!

Be sure to mention the OUCH name in your correspondence. Multiple times if possible. Our goal is to stick the OUCH under thier noses so many times that it automatically comes to their minds when anyone mentions CH.

I can see them all at the next IHS or AHS symposium asking each other, have you been geting all those e-mails from those OUCH people too? Who the heck are they?

Title: SilbersteinRe: Your OUCH homework assignment!
Post by NancyMcFree on Aug 24^th, 2002, 1:09pm

:D ;) :) Did mine ... sent the email to StephenSilberstein. ;D :) ;) :D. Thanks BobP for getting pointing me in the right direction ... Damn my search button just never wants to work without a little help !!!!!

Title: Re: Your OUCH homework assignment!
Post by NancyMcFree on Aug 24^th, 2002, 1:11pm

Oh an thanks Drummer for coming up with the idea :) ;) :D ;D I was soooooo busy searching and reading I had no time to bitch !!!!!!!

Title: Re: Your OUCH homework assignment!
Post by catlind on Aug 25^th, 2002, 7:19am

Hey, get this back to the top of the list....can't we sticky it or something hehe.

Cat

Title: Re: Your OUCH homework assignment!
Post by gtar_man on Aug 25^th, 2002, 12:46pm

OK, BobP, so I decide to get off my dead arse and join OUCH; I clik on the website button; page comes up, says I need to download "java virtual machine"; I hit the download button and page comes up, says Windows XP won't let me do that. Sigh. Any 'puter wizards can help me out here?
I'm TRYIN', I'm TRYIN'...Gman

Title: Re: Your OUCH homework assignment!
Post by Drk^Angel on Aug 25^th, 2002, 6:20pm

WinXP sucks... Use linux...

PFDAN....................... Drk^Angel

Title: Re: Your OUCH homework assignment!
Post by maria on Aug 25^th, 2002, 10:51pm

BobP,
I have received a reply back and I will be forwarding you a copy. Didn't expect to see results. Maria

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 26^th, 2002, 8:52am

Gtar -
Microsoft and Sun had a little arguement about JAVA. Here is a link that explaines it:
http://www.microsoft.com/java/xp.htm
It should be available for XP shortly.
I'm running XP Pro at home and love it.

Maria - great work!

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 26^th, 2002, 9:19am

Just a note on why I run the JAVA navigation applet on the OUCH site. The site continues to grow and change at a rapid pace. With the JAVA navigation, when I add/delete/change a page's location, I only need to make a change to a single text file and the nav bar is changed universally accross the site. With a regular navigation bar I would have to change each individual page and upload them all. So it's really just a matter of maintenance convenience for me.

You can get to the 'Join OUCH' page via thia link:
http://www.clusterheadaches.org/membership/membership1.htm

Title: Re: Your OUCH homework assignment!
Post by nancyc on Aug 26^th, 2002, 9:45am

Homework assignment completed...but think i will read some more and send out more thankyous... :Dnancyc

Title: Re: Your OUCH homework assignment!
Post by Bob P on Aug 27^th, 2002, 10:15am

Good work Nancy.

Maria sent me a copy of Dr. Peres' response. He says that he would love to use the OUCH site to conduct surveys. He also reviewed the existing surveys there and asked if we were presenting the results at gaterings of headache organizations.

Maria, please post the docs e-mail reply here for everyone to see.

Now that's taking a giant step forward and all it took was a 5 sentence e-mail.

No excuses folks. Just find an article from the links in the post above. Copy and paste a doctor's name from an article to your search engine. See if you can find his e-mail address and send a note. That's all it takes.

Title: Re: Your OUCH homework assignment!
Post by maria on Aug 27^th, 2002, 5:15pm

Bob P, Here is the reply I received back from Dr. Peres:

Dear Maria,
Thanks for your contact.
I have special interest in the study of cluster
headache patients.
We are presenting a new study at the migraine trust
(London), on the effect of occipital nerve blocks in
cluster headache. It is also accepted for publication.
There are other ongoing projects.
I would love to post a survey on your website. I
checked the ones you have now.
Are you presenting this data in headache meetings?
Any other previous ones?
Are you interested in a Brazilian OUCH branch?
I look forward to your reply
Sincerely

Mario Peres
Director
Sao Paulo Headache Center
Al Joaquim E de Lima, 881, cj 708/709
01403-001 Sao Paulo
Brazil

I received Dr. Peres' reply about two days after I emailed him. I did not feel I could answer all of his questions and emailed him back that I would be forwarding his email to Bob P, the president of OUCH. Thanks Bob P, this little homework assignment may end up resulting in more work for you, but hopefully a very positive outcome for OUCH.

Maria

Title: Re: Your OUCH homework assignment!
Post by catlind on Aug 27^th, 2002, 9:29pm

My homework assignment is partially completely, sent off an email to Walter Reed Army Medical Center, and bringing info in and clock to Neuro appt on Friday. Still have to do Medscape and Wilford Hall.

Cat

Title: Re: Your OUCH homework assignment!
Post by catlind on Aug 30^th, 2002, 9:28am

Okay, emailed to Walter Reed, gonna call and follow up, printed brochure (and created new one for my neuro) to take to Neuro appt today, and I emailed Oprah and told her about CH sufferers and added in that many of the folks here are military and that it's called a suicide headache, and could she imagine a soldier trying to defend our freedoms against terrorism while suffering with a kip 10 cluster - that he'd be as likely to shoot himself as the enemy. Hoping that will get her attention this close to 9/11 Anniversary and she will pick up the thread on us.

Not4Hire maybe you can email her with ideas on a new show link with what you've come up with regarding military members and CH's.

Cat

Title: Re: Your OUCH homework assignment!
Post by Slammy on Aug 30^th, 2002, 10:20am

on 08/30/02 at 09:28:56, catlind wrote:

... and I emailed Oprah ....

Cat

Why am I not surprised!! You should have e-mailed Rosie too! ;D

Slammy 8)

Title: Re: Your OUCH homework assignment!
Post by catlind on Aug 30^th, 2002, 1:19pm

on 08/30/02 at 10:20:26, Slammy wrote:

Why am I not surprised!! You should have e-mailed Rosie too! ;D
Slammy 8)

Okay SLAMMY (Smart Lazy Ass Monkey Man You), what have you done for your homework? LOL :P

To update my homework, my neuro appt was a waste of time, I gave him the brochure, and he wanted nothing to do with it, kept saying Clusters are part of Migraines and there is no difference GRRRRRRR.

On the up side of a down side though, I got a cluster while in his office (not surprised with my stress level going to kip 10 as I wanted to rip his eyeball out of his head through his temple) I went to the urgent care clinic on Ft Drum to get some drugs for my kip 8 and the specialist I saw was very interested in Clusters because he's had migraines and didn't know there was even a type of headache called clusters, so I gave him OUCH's website and he's going to check it out so at least the military medical community at Ft. Drum will become educated - at least some of them will.

Next on my list is Wilford Hall, I'm going to make a follow up call to them and see what I can get them doing.

CAT (Confused Anal & Tenacious)

Title: Re: Your OUCH homework assignment!
Post by Slammy on Aug 30^th, 2002, 1:37pm

on 08/30/02 at 13:19:08, catlind wrote:

Okay SLAMMY (Smart Lazy Ass Monkey Man You)

ROTFLLMMFAO!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ;D

Monkey Man? Bahahaha!

CAT ( Confused Anal Twit)
but funny as shit! LOL!

Love ya! :-*

Slammy 8)

Title: Re: Your OUCH homework assignment!
Post by Drk^Angel on Aug 30^th, 2002, 1:44pm

Okay... Kiss and make up you two... And Slammy... try to refrain from too much tongue... She's married. (And it's said that he scored expert in his marksmenship test. He'd prolly shoot ya in your "Smart Lazy Ass" LOL)

PFDAN.............................. Drk^Angel

Title: Re: Your OUCH homework assignment!
Post by Not4Hire on Aug 31^st, 2002, 9:27am

Got this back from Senator Max Baucus (D) Montana:

To: carpe_diem49@yahoo.com
Subject: Re: www_email
Date: Tue, 27 Aug 2002 18:23:14 -0400

August 27, 2002

Dear Stephen:
Thank you for contacting me regarding the Rare Diseases Act of 2001. I appreciate hearing from you on this important issue.

I have long believed adequately funding the National Institutes of Health (NIH) so that further research might remedy some of the ailments gripping our nation. I strongly support the goal of doubling NIH funding in five years from its 1998 level of $13.6 billion. As you may know, I voted for another 14.7 percent increase in NIH funding in the 2002 HHS Appropriations bill.

As you may know, S. 1379, the Rare Diseases Act of 2001 would establish an Office of Rare Diseases at the National Institutes of Health and provide for rare disease regional centers to assist with disease research and educational. This legislation would also amend the Orphan Drug Act authorizing appropriations for the development of drugs for rare diseases and conditions. I am happy to share that I am a co-sponsor of this bill and that it is on the Senate legislation calendar.

Thanks again for getting in touch. Please feel free to contact me if I can be of any further assistance.

With best personal regards, I am
Senator Max Baucus

http://baucus.senate.gov

Title: Re: Your OUCH homework assignment!
Post by oringkid on Aug 31^st, 2002, 6:32pm

Hey Not4, could you post the letter you sent the senator so I can get an idea. (I know I should have done this awhile ago, back when Rick first posted about it. I think it was Rick) But now that I have been in this state almost a year, I figure I can email our governer and congressmen

Course, the only congressman I know of that is from here is John McCain. Our Governer is a woman!

Sherry

Title: Re: Your OUCH homework assignment!
Post by Not4Hire on Aug 31^st, 2002, 7:50pm

hey sher...I used the form letter BobP gave us...don't remember the exact language..... kind of a generic "whine" LOL

basically tell your Rep/Senator you got a Rare Disease....the Insurance comnpany is fuckin ya over.... yer Doctor got NO clue..... when you go to the ER.... they want to give you NARCOTICS... if they don't think you WANT narcotics....... Catch 22 in the worst sense..... and these political bastidges just want yer VOTE.... the only currency we have....... Tell'em...Tell'em TWICE... we be sufferin' and we aren't gonna take it NO FUCKIN' MORE.......

this rant brought to you by the forces of "The BackSide" (tm)

Kiss THIS.......

>:( >:( >:( >:(

Title: Re: Your OUCH homework assignment!
Post by Not4Hire on Sep 1^st, 2002, 11:02am

....found the letter:

[Sample letter asking your U.S. Representative to co-sponsor the Rare Diseases Act of 2002 (H.R. 4013) and the Rare Diseases Orphan Product Development Act of 2002 (H.R. 4014)]

The Honorable ________
United States Senate/House of Representatives
Washington, DC

Dear _______:

Two bills related to rare diseases were introduced in the House on March 20, 2002. The bills are companions to a Senate measure (the Rare Diseases Act of 2001 ? S. 1379) introduced on August 3, 2001 by Senators Orrin Hatch (R-UT) and Edward Kennedy (D-MA).

The Rare Diseases Act of 2002 (H.R. 4013) provides statutory authority to the existing Office of Rare Diseases at the National Institute of Health (NIH). The office is given authority to promote and coordinate research on rare disorders and to create academic centers for research on these conditions. The bill would authorize up to $24 million for the office. Congressman John Shimkus (R-IL) and Congressman Henry Waxman (D-CA) introduced the legislation.

The second bill is the Rare Diseases Orphan Product Development Act of 2002 (H.R. 4014). It was introduced by Congressman Mark Foley (R-FL) and Henry Waxman (D-CA). The bill would authorize $25 million per year for the FDA?s Orphan Products Research Grant Program, which supports clinical trials of orphan drugs, diagnostics, medical devices and medical foods. This existing program is currently spending only about $12 million per year.

H.R. 4013 and H.R. 4014 will help 200,000 Americans who are suffering from a disease known as Cluster Headaches. This disease, also known as Suicide Headaches, is described by some doctors as the most physically painful condition in modern medicine, and has been known to drive individuals to take there own lives. Cluster Headache sufferers can experience anywhere from 1-10 debilitating "attacks" per day, consisting of excruciating head pain. The level of pain has been compared to the equivalent of having a limb amputated without anesthetic. These attacks can persist for weeks, months, and even years for some chronic sufferers. For those who are not chronic, periods of remission will occur, only to be followed by another cycle of attacks. This process will continue throughout most of a sufferer's adult life. As you could imagine, being bombarded with such pain on a continual basis can make life quite challenging for an individual as well as for family and friends close to them.

Unfortunately, Cluster Headache sufferers have little help from the medical community as a whole. Very little research has been conducted, and no drugs have been designed specifically for this disease, as it is so rare. Sufferers of this disease are forced to rely on medications designed to treat other unrelated maladies. Success rates in treating and controlling this disease are extremely low.

I ask that you support the Rare Diseases Act of 2001 to ensure that the constituents in Montana and the 25 million Americans suffering with rare "orphan diseases" receive the care and treatment they so desperately need and deserve.

Thank you for your time.

Sincerely,

Title: Re: Your OUCH homework assignment!
Post by eyes_afire on Sep 1^st, 2002, 5:28pm

Mee too ;D

I sent out an email thanking P. Torelli for 2 recent articles.

Title: Re: Your OUCH homework assignment!
Post by TerryS on Sep 1^st, 2002, 9:19pm

My home work assignment is complete.

Thanks Bob for all your work in this matter. Hopefully this will give us the boost we need.

God bless, TerryS

Title: Re: Your OUCH homework assignment!
Post by oringkid on Sep 3^rd, 2002, 8:09am

Thanks N4H!

Sherry

Title: Re: Your OUCH homework assignment!
Post by Not4Hire on Sep 20^th, 2002, 5:18pm

Got another one back from Montana Senator Conrad Burns:

From: senator_burns@burns.senate.gov
To: carpe_diem49@yahoo.com
Subject: Medical Research
Date: Fri, 20 Sep 2002 13:13:18 -0600

September 20, 2002

Mr. Stephen Lichens
Hamilton, MT 59840

Dear Mr. Lichens:

Thank you for contacting me regarding funding for medical and scientific
research programs. It was good to hear from you.

I appreciate knowing your support for research. You might be interested
to know that I was a co-sponsor of legislation in the 105th Congress,
which would double funding for basic science and medical research. The
United States simply does not spend enough on basic research. This bill
would double the amount spent by the federal government on non-defense
research over ten years in a dozen agencies, programs, and activities,
from $32.5 billion in FY 1997 to $65 billion in FY 2007, making sure that
within that amount the funding for the National Institutes of Health would
double from $12.75 billion to $25.5 billion. I am happy to say that under
President Bush's leadership, this goal of doubling funding for the NIH
will be realized.

At the same time, in order to be sure the increase in funding is spent
wisely, the bill would give priority to investments in basic science and
medical research in order to develop new scientific knowledge to be
available in the public domain. Expanding the nation's commitment to
basic research in science and medicine is a critically important
investment in our future. My support for research remains unwavering and
you can be sure I'll have your comments in mind when a similar bill comes
before me in the Senate this session.

Thanks again for contacting me. Please don't hesitate to call or write
with any other questions or concerns you may have. If you have an
opportunity, please visit my web site at http://burns.senate.gov for
updates on issues of importance to Montana. When you visit my web site,
you can also view my most recent e-Newsletter, an e-mail report that I
regularly send from Washington, and you can add your name to the
subscription list if you wish.

Sincerely,
Conrad Burns
United States Senator

Title: Re: Your OUCH homework assignment!
Post by NancyMcFree on Sep 20^th, 2002, 6:30pm

Not4Hire ... you go !!!!!!! I would hire you any day. Making shit happen ........ I love it !!!!!!!!!!!

Title: Re: Your OUCH homework assignment!
Post by Jabeen on Sep 21^st, 2002, 1:55pm

I will do my part-I will check them out and respond!

Title: Re: Your OUCH homework assignment!
Post by 2late on Sep 21^st, 2002, 2:13pm

solutions & no whining! fuckeneh!! i'm all over it .............2late