Founder's Corner preference/ideas?

Discussion in 'Fibromyalgia Main Forum' started by richcarson, Sep 28, 2006.

  1. richcarson

    richcarson Moderator

    I am trying to decide what to write about in next weeks Founder's Corner for the CFS newsletter and I am playing with several ideas. Can you give me feedback on which of the following topics our readers would find the most interesting? Bear in mind that the message needs to have broad appeal.

    1) To write about Campaign for a Fair Name. Obviously, the trivializing name ‘Chronic Fatigue Syndrome’ needs to be changed to something that does minimize the importance and severity of this disease and will not humiliate patients.

    2) People want to know how I was able to improve my health to the point that I was able to go back to work after over a decade of being totally disabled. I want to share my ‘secrets to my success’ (hint: mostly it involves hard work, perseverance, an open mind, and a willingness to take a few risks)

    3) The recent Reno fundraiser--a huge, gala event, with over 320 high society guests (including Joan Baez, many CFS reseachers and doctors, some very special patients...). The event also included a high level name change meeting that I was honored to co-chair with Dr. Nancy Klimas--which I would discussed as well.

    4) A summary of every pharmaceutical drug trial on CFS patients ever published. It would be fascinating reading and would provide numerous treatment ideas for many patients and their physicians.

    I am trying to get my arms around what readers would find most interesting; your ideas, feedback, and advice would be greatly appreciated. What do suggest I write about? How wouild you rate the four topics above as future Founder’s Corner topics.

    Thanks for helping me out!

    Rich Carson
    ProHealth Founder and, most importantly, CFS patient

    [This Message was Edited on 09/29/2006]
  2. suzetal

    suzetal New Member

    I would love to hear more about your story and I know others would.Also drug trials sounds really interesting.

  3. suzetal

    suzetal New Member

  4. webintrig

    webintrig New Member

    I think people would like to hear about how you have done it, the keys to what we would like to achieve and the drug trials that are going on.

    [This Message was Edited on 09/29/2006]
  5. rockgor

    rockgor Well-Known Member

    Thanks for this wonderful board.

    I think people would like to read your story.
  6. ilovecats94

    ilovecats94 New Member

    I would like to hear your story first and perhaps the research next.

    I am very interested in how a man as ill as you were/are could build such an empire and overcome the exhaustion/mental fatigue to make Pro Health the site that it is. Plus all the behind the scene things that most don't even have an inkling about.

    I have FMS and deal with many other illnesses.

    I love your newsletters and appreciate all you do for all of us.

  7. phoenixrising2

    phoenixrising2 New Member

    I want to read about them ALL, so will be looking forward to hearing about all of them in the future.

    The name change is of the most interest to me right now, though. I think this is an extremely important endeavor and we won't get much done until the name is changed.


  8. justlooking

    justlooking New Member

    All of the topics are ones I personally would love to see in the next edition, so it's hard to pick only one.

    Maybe you could have an end of year extended edition and you could cover all of them???

    Sorry guess I wasn't very decisive there LOL

  9. shar6710

    shar6710 New Member

    I think they all sound interesting but I would vote for your story first, and the drug trials second.

  10. victoria

    victoria New Member

    #2 &/or #4 . . .

  11. Lolalee

    Lolalee New Member

    Hi Rich,

    First of all, thanks for asking for our input. I immediately knew which topic I would like to read about first and when I saw the other responses I realized that most of us feel the same way. There are so many very sick people on this board and we all want to feel well.

    My vote is number 2. I would love to read about your story...your personality, how long were you ill, were you diagnosed with both FMS and CFIDS;a description of the course of your illness;how long were you ill before you became totally disabled;how was that for you (were you hopeful or hopeless;did you lose friendships;did you have family care for you, etc.?);at what point did things start turning around for you;did you get well because of your own research or did you eventually find a good medical team, etc.

    I realize the above sounds more like a book, but if you could include as much information about your story as you can, it would gives us all a lot of hope.

    The other 3 topics sound great for future issues. My choice would be..2,3,4,1.


  12. woofmom

    woofmom New Member

    I just talked online with David about the Alpha Stim. Their research doctors think it helps to promote neuroplasiticity or the creation of neuronic connections. It has helped with a variety of brain disorders such as asthma attacks, MS, and nervous tics. A Dr. Stephen Plotnick has ordered one for all 3 thousand of his fibro patients. He told me that there is no guarantee, but it is definitely worth a shot. What do you think?
  13. twerp

    twerp New Member

    I'd like to hear exactly what you did to improve your health.

  14. Pianowoman

    Pianowoman New Member

    I am torn between #2 and #4. I think your story would be helpful though. You have been ill for so long and now you are able to work again. That's a huge achievement.

  15. deliarose

    deliarose New Member

    People want hope more than anything else, then a roadmap.
  16. deliarose

    deliarose New Member

    Could you address the challenges of TF therapy? I have just started and it's v. tough physically. I can't seem to find much anecdotal feedback from others who have tried TFs so wld appreciate your input.

  17. Your story first , then all the others sound interesting also.
  18. TwinMa

    TwinMa New Member

    They all sound like great topics. I hope you tackle all of them in the future. For now, here is my vote for order of preference:

    1) The Rich Carson story
    2) Drug Trial summary
    3) Campaign for a Fair Name
    4) Reno fundraiser

    Thanks for all your awesome efforts!!
  19. cherylsue

    cherylsue Member

    People need hope and encouragement the most. Please share.

  20. crackerB

    crackerB New Member

    These chronic diseases are so complex that recognition, while good and necessary, is not enough. As an IT guy working in hospitals in the Bay Area (SF) in the late 80's and 90's, I saw the political mobilization it took from the AIDS community to get access to treatment and resources. It was a brawl, it was tough times for alot of very unwell people. Dedication and organization is responsible for the advances they made surrounding their disease. We are much more marginal than they, obviously easily ignored by individuals and institutions. Its still true, "the squeaky wheel gets the grease". Most of us have healthcare obstacle courses to run that just add to the confusion.. Time to sqeak. Cracker Bergman, redneck Swede

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