The NIH, Funding Problems, and Advocacy Blunders

 

The National Institure of Health in Bethesda, MD

The National Institure of Health in Bethesda, MD

The National Institute of Health or as many know it the infamous NIH supposedly spends over $30 billion dollars a year on research of health issues in the United States. (http://report.nih.gov/categorical_spending.aspx)Where is it all going? Vasculitis isn’t even on that list and neuropathy gets more research than migraines which are far more disabling in my opinion. What have we found a cure for lately? Why aren’t the top most painful and chronic diseases in the world being pushed aside for causes toted by the media and big celebrities.   As I’ve repeated many times actors get paid more for a single starring role or an episode of a show like “friends” than migraineurs and Cluster Headache sufferers do each year. Never mind the incurable and unknowns about neuropathy and especially the incurable vasculitis. Instead they invest large amounts in research that is never intended to find a cure like all these studies for cancer, come on with the amount spent on it you’d think they’d have built an island nation with it’s own medical system just for cancer patients alone. You don’t see the media wearing any other ribbon than the pink awareness ribbons and the Presidents of these well to do NON-PROFITS makes MILLIONS each year and often appoint all their family and friends as board members to siphon them money as well.   It just seems like the celebrities that suffer from chronic disease don’t want help, give me  a few million to invest and next year we’d have a chronic condition care center but not one exists….why when so many conditions are chronic? It’s a huge huge link missing from our medical system one that needs to be filled and fast before more people die. Celebrities need tto fight the neurological stigma and stigma of invisible illness and fight for us to gain some ground here. Dwayne Wade could easily make appearances explaining the need for more funding but i gueess he’s tied up in making more personal gains than helping his country   As for the people working on awareness they’re doing it but in an old fashioned slow moving way that clearly hasn’t worked the last decade and isn’t working today. We need younger doctors and younger advocates not room fulls of people in their sixties and over who barely have the energy to run these things and don’t want any change in strategy. What we need America is me, just put the spotlight on me for a minute and I turn that opportunity into several more I mean my WEGO Health Award has leed to several talks and appearances as well as chat housing opportunities and more. Imagine what a difference I could make on a nationwide audience like those watching Good Morning America  for example. I’m not saying I’m the only one who can but righ now it seems like I’m the only one with my rare disease willing to get off the couch and fight for all 4 of my disorders, and make a well educated argument at that.   Anyways as I feel better in the future I plan on doing many speaking tours especially to colleges around the nation as well as to medical facilities and pharmaceutical companies to try and push them in the right direction. I don’t care what chronic illness you have take this passion I have and learn from it, call me out on it often, use it as a tool to motivate me and yourself to spread the awareness!   Seriously every month you can say Michael what have you done for migraineurs, those with neuropathy, churg strauss, and cluster headache. My reply will likely be lengthy because regardless of my own health I put in the time and have the creativity to work around my conditions and to helps others in my position who aren’t as fortunate. I know not every migraineur or Churg Strauss survivor wants to spend their time advocating and that’s ok, I just ask that you spend some of your time educating others as that’s how we will slowly change this world through friendliness, word of mouth, amazing factoids, and the help of local media.   So I ask you all this month I’m feeling particularly ill what do you recommend I do to help our community: A) Work more on my Churg Strauss and Migraine Books finish gathering researcg and review the draft of/complete chapters 1-3 of each book.   B) Renew my local library card and get a chronic pain support group going soon in my area of 10-15 people for free to raise awareness and give a place to vent and/or learn   C) Work on renovating and adding features to the website, invest in customization and SEO   D) Write an ebook and work on flyers, pamphlets to raise awareness and hand out once I print it with donations I receive. I’d leave these in doctor’s offices and with psychologists as well. If you have additional ideas please feel free to pitch them to me I just want to remain active in advocacy whilst dealing with my terminal illness in a realistic manner. Being a former director of an NPO and doing this all at the same time was too much for me with daily chemo and monthly infusions of IVIG so I backed down for now hoping someday I can once again reinvolve myself with NPO’s though I prefer to lead myself. I think in the end I’ll be more of a patient advocate who coordinates with and help all NPO’s yet ties himself down to none so I can help anyone I’d like without being seen as the bad guy, because trust me there’s a lot of politics in this world of advocacy for any disease. It’s sad really but I suppose many are trying to defend a paycheck they deperately need so how can I blame them. Anyways that’s all I have to say for now I hope to write more throughout the day as it’s a nasty day outside and the searing pain all over my body won’t allow me to rest.

7 thoughts on “The NIH, Funding Problems, and Advocacy Blunders

  1. I’d say you do what you feel is important to you. Regardless of what you decide it will help someone. Even if it’s one person, you made a difference. That one person could make a difference and so on. Some days when I log on and read your post, it helps me. It helps me to keep my sanity. It helps me knowing that I’m not alone and other people really do understand how debilitating chronic pain is. It helps me to push on. It has helped me to jump back in the pool and search for another neurologist, to seek treatment, to not give in to these migraines, as I have for the past 25 years. You do great work, Michael, keeping it real! Thank you!

  2. Try to finish one book, do not spread your self too thin as nothing will be published and we all need to se a completed book, your followers will love it.

    • I am working on the vasculitis book first and foremost as that is most daunting to my health gpop but I have some of my migraine book written swept away for later to be used in that rough draft. I have much to record and a lot to remember to write the complete books. My memory has been worse and worse so I;m hoping I can struggle through this.

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