Jump to content

What would u say to Congress????

Recommended Posts

What would you say to your representatives?  I'd like to know!! 

If it's helpful, I've been posting updates about the Washington DC trip in this thread:

ClusterBusters Forum › General Category › Advocacy, Events and Conferences › Join Us In Washington DC for HOH 2013


There are links to the fundraiser, the Facebook Event page and the team map in that thread along with the "serious guidelines", but I'm hoping to hear from everyone...Rants included!!!!  I think it would be super helpful!!!  Share please :)



Link to comment
Share on other sites

Actually I have been running some things around the noggin. Maybe a short line on the lack of understanding we face on several levels, the level of pain, the condition , research and treatment , as well as the level of disability it causes, despite being just a headache. I think we all can agree that more infomation and mutual understanding is beneficial for everyone.... ;)

Link to comment
Share on other sites

  • 2 weeks later...

Hello From DC,

Just letting everyone here know that you have an incredible group of people here representing you all.

We've spent the day gettig ready to make our voices heard.

This is one motivated group....

And dont tell him I said so but......John Bebee is the star here. ;-)

I'm proud of this group and the turnout from the cluster community.

Give you all an update soon!!!


Link to comment
Share on other sites

There were many stars. So many so bright. Now comes the time for all to shine...call your representatives,  indicate your support for the AHDA. Blue book inclusion of headache disorders, NIH funding for headache research, PTSD and migraine treatment and research for our active duty troops abd veterans.....please.

Link to comment
Share on other sites

It seems like President Obama's recently-proposed BRAIN Initiative (Brain Research through Advancing Innovative Neurotechnologies)) would be very much in the interest of understanding more about CH mechanisms.

My thoughts exactly! 

A sociologist who was present during the training session led a sort of round table discussion on the subject.  She believed admission that "headaches" are in any way connected to the brain would be further stigmatizing!  Really??  How much more stigmatized can this patient group be?!! Go work for Colbert!  Cause to me, that's pure comedy! 

We say this to that!


Here are my take away thoughts on last week's Advocacy event at the Capitol.

Positively, one of the purest measurable advancements our patient group has known in years. It was possible because of a whole host of synergistic ideas, actions and commitment from initiation to follow through.

I have a huge respect for neurology, neurologists and neurosciences. What these guys see on a daily basis in their practices is not only our patient group, but every other primary

headache patient too. They firmly adhere to this; Headache pain is always a symptom.  Being able to identify the cause of the symptom (i.e., tumors, cysts, aneurisms or clots) or not does not change it from simply being a symptom.

The steady stream of patients they see are disabled by pain, overlooked by science, pharma and marginalized by our whole society. I learned how frustrating it's been for them as care givers to wait for science to "catch up" to the exploration of the brain (which includes seeing headache pain as a symptom). Doubly frustrating is the continued resistance from science to see the "headache patient group" as a group who belongs in this exploding area of research. We simply cannot be caught up in another "catch 22".


We must be crazy too!

Forcing every arena whose played a role in shaping and reinforcing the negative experiences of the primary headache patient into evolving away from what's comfortable & the accepted known norms is not going to be a cinch. LOL. To shift the thinking and connect the dots is just one of our many tasks. And it's upsetting. Not just to us, but to these organizations too. Change is difficult. Painstakingly difficult. It's as though it's easier to continue the fables regarding the headache patient and keep us neatly tucked "out of sight/out of mind" over embracing headache pain for what it is: a symptom of something yet unknown going on in the brain. And that's a scary thought but I think the "Aha moment" is about to materialize!

And connecting headaches to the brain, wow, that's just a astronomical step for many of these "old thinkers" to embrace. But we were ready. We overcame each objective and took the opportunity to replace old thoughts with new. During the SSA, VA, NIH meeting the biggest obstacle seen by the SSA in adding our patient group to the Blue Book was the lack of science to be able to perform a test whose outcome said definitively YES this is a CH patient or NO this is not a CH patient. Within hours of that meeting this article was published.....


This obviously isn't going to be in every GP's office or ER room next year, but hey, it's pretty much what the guy was asking for, in my mind. If we continue to make advances in becoming a cohesive patient group who stands to benefit from being a united voice, the old "catch 22" will not only be nonexistent but non sequitur.




Link to comment
Share on other sites

  • 3 weeks later...
  • 3 months later...

Researcher works to unlock mysteries of migraines

Vermont professor says research is far unfunded, allowing condition's invisibility.

As if migraine weren't bad enough (it can be disabling) or widespread enough (it afflicts nearly one in five Americans), it also comes with a stigma that often renders it invisible.

That's a social stigma that somehow even extends to the medical research community, which largely has overlooked this neurological disease for years — to the public detriment.

So goes the plaint of Robert Shapiro, professor of neurology at the University of Vermont, practicing neurologist and headache specialist.


"I know a lot of members of Congress have migraine," he said. "You cannot be very public about it." Why? Admitting you have a disabling condition can be "a career-killer." Rep. Michele Bachmann's campaign last year for the Republican presidential nomination, whatever its other challenges, was not enhanced by her acknowledgment that she suffered from migraine.

"I believe there will come a point, hopefully soon, when it will dawn on enough members of Congress where they will realize they can be a hero by pushing on an open door and saying, we have a problem that we can help fix."

Migraine isn't the only neglected condition, he said.

"Cluster headache is a good case in point," he said. "Cluster headache is widely regarded as the most severe pain a human can experience — that's not hyperbole. It has a population prevalence that's approximately the same as multiple sclerosis."


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Create New...