17 responses to “A Catalyst for Hope”

  1. Nancy

    Your message has been inspiring. I too have become very cynical and living without any hope at all as I am now 72. I became ill at the age of 44. I used to be very optimistic but overtime, that hope turned into frustration and ulitimately a kind of depression. My husband has cancer, is bipolar and has diabetes along with other health issues so I am not only chronically ill myself but a caregiver of sorts.

    But this message has deeply inspired me and I appreciate how you have put into words what I’ve not been able to focus on regarding the efforts by the CFIDS Assoc. of late. I have to admit that I’ve felt that they have forsaken the everyday issues of patients especially those who have been ill for decades. If you did the math, I’m coming up on 28 years (nearly 3 decades) with this and if not for moving to an area where we have one of the finest CFS/FM docs, I’m not sure how I’d be managing. There are so many of us who are in the same position of having been ill for nearly 3 decades or more.

    We have little financial resources to donate much at all but after reading about the lady who increased her donation has inspired me to determine how I can at least begin a monthly donation.

    I have a question regarding the new physician primer that reportedly is to be distributed sometime in May. This is an effort by the IACFSME. Was this discussed at all?

    Thank you so much.

    Reply
  2. cfsboston

    O.P.C. antioxidants (very specific kind) are one of the best treatments for illnesses of oxidative stress.

    Doubtful any clinical doctor will ever tell you that (not because they don’t already know it) but because doctors are paid by Big Pharma to write prescriptions; that’s how their job works. Boston has world-class clinical care, but I had to fly across the world (literally–>to Paris) for Montagnier and his colleagues to enlighten me.

    Oxidative stress to the body is what rust is to metal. It’s doesn’t matter the cause of the illness, the goal with any chronic illness is to get rid of the rust and to be as shiny (i.e., as healthy) as possible.

    Antioxidants, hence their name, ANTI—oxidants, get rid of oxidation caused by free radical damage to one’s cells.

    Simply google “oxidative stress and antioxidants,” or “oxidative stress CFS and antioxidants,” or “OPC antioxidants,” etc. to see if it’s a good fit for you.

    Take care.

    “The people who are crazy enough to think they can change the world are the ones who do.” ~ Steve Jobs

    Reply
  3. Marcy

    That is such an inspiring article. Very heartfelt and shed new light on CFS & FM.

    Reply
  4. PATRICIA L WHITE

    LISA, I RELATE TO YOUR PARAGRAPH UNDER “THE FLICKERING OF HOPE”
    ….ESPECIALLY THE “DRUMBEAT OF HOPELESSNESS……

    I HAVE “BEEN AT THIS ” FOR 25 YEARS ……….AND HAD WORKED VERY HARD FOR FOR 15 OF THOSE YEARS FOR MY LIFE TO RESEMBLE SOMEWHAT OF A NORMAL PERSONS LIFE ( only it wasn’t )…. AND I BRIEFLY GOT TO ENJOY LIFE AGAIN , BUT …..
    THEN “LIFE HAPPENED AGAIN” , AN INJURY HAS PUT ME INTO A PERMANET FIBRO FLARE FOR THE LAST 8 YEARS. ONE RE-INJURY HAS LEAD TO A SUCESSION OF INJURIES AND RELAPSES AND FLARES.
    I’M AFRAID MY “CANDLE ” HAS BEEN SNUFFED OUT AND THE DRUMBEAT OF HOPELESSNESS GROWS LOUDER WITH EACH DAY. IT IS TOO PAINFUL TO THINK OF WHAT ” COULD HAVE BEEN “, ALL DREAMS ARE ASHES KNOW.
    I AGREE WITH YOU THAT WITH THE EMPHASIS ON “RESEARCH” PATIENT SUPPORT HAS GONE DOWN HILL. ALSO LACKING IS THE ADVOCACY ROLE TO THE MEDIA AND PHYSICIANS. IN MY ” PART OF THE WORLD” , THE DR’S LIVE IN THE DARK AGES AND ARROGANCE AND IGNORANCE REINS SUPREME.
    IN THE LOCAL MEDIA THERE HAS NOT BEEN ONE PIECE OF NEWS ABOUT CFS FOR YEARS NOW. THE “LOCAL” UNIVERSITY AND MEDICAL COLLEGE SEEMS TO CONTROL WHAT APPEARS IN THE PRESS. IF THEY DON’T SANCTION IT , IT DOES NOT GET COVERED.
    GOOD LUCK WITH THE BLOG
    PAT

    Reply
  5. Irene Szczech

    Hey babes!

    Loved your article. Really fun to read after chatting with you at the event. And that woman who talked to Susanne about increasing her monthly donation from $5 to $6 is a wonderful friend of mine! She is quite an inspiring lady. I’ll pass on this link to her so she can read it herself. Also saw our lovely doctor today and passed on your cards to him.

    xooxo, irenie

    Reply
  6. Barbara Berger

    This was an incredible read and one I would love to share with those who read on my message board. I will not repost it unless you give me permission to do so. Please let me know.

    Reply
  7. Jennie Spotila

    I am so happy to hear about your renewed hope! I firmly believe that we will see progress towards diagnosis and treatment not just within our lifetimes, but within the next several years! I served on the Association’s Board from 2006-2011, and I have met many of the researchers and thinkers – and not just Association grantees, but members of the Scientific Advisory Board as well. The scientific rigor of their work, and the free exchange of ideas and information, is so exciting.

    In the 1970’s, childhood cancers had a fatality rate of over 90%. Today, that rate is at or below 10%. What changed? The researchers started communicating, sharing their data, picking apart each other’s ideas, and drawing on the collective expertise to chart next steps in research. Improvements in technology are not enough if people don’t apply them to the fullest.

    I believe that we are beginning to see that in CFS. What is most hopeful to me is the synergy I’ve seen at the NIH’s State of the Knowledge Workshop last year, and meetings of the Association’s advisers and researchers. When scientists start challenging each other and offering new ideas – THAT’S when the sparks start to fly and progress is made!

    Reply
  8. Janey D

    I really appreciate the richness and detail of this information (and it’s also inspiring). I’m really glad I found your blog 🙂

    P.S. I registered for “Catalysts in Action”

    Reply
    1. Caroline Seale

      Delighted to have found your blog. You have a gift with words Lisa and I now look forward to reading your site regularly.

      Reply

Leave a Reply