Friday, May 20, 2011

CFSAC Testimony From Two Mothers

OK, you better get the box of Kleenex out for this one.  Here are two more videos of testimony from last week's CFSAC meeting in Washington, DC.  Both of them are mothers, talking about their sons (one has two sons with ME/CFS; the other has three sons who are ill).  I found both of these very, very moving and powerful, and I think the committee members did also.

This is Denise, a good friend of mine, whose two sons, ages 18 and 20, have both been severely disabled by ME/CFS for the past 5-6 years.  She is also the person who coordinated the whole Speak Up for ME event to bring attention to kids, teens, and young people with ME/CFS:

And this is Katie, a mom I met for the first time in Washington, but with whom I immediately felt a connection.  She has three sons who have been severely affected by ME/CFS for many years; her sons are now almost all grown up.  Her story of her oldest son, Bill, brought me a glimmer of hope for my own sons' futures:

I just listened to these both again before posting them, and they both again brought me to tears.  I think you will see why these moving testimonies led the CFSAC to focus on pediatric ME/CFS in their next meeting.

These two moms - and me as well - sincerely hope that by telling our stories, we were also representing the many thousands of kids across the US and all over the world who weren't able to be there to speak for themselves.  We know you are out there, and you are not alone.


  1. These are sooo hard to watch. One hopes for a cure.

    Love Leanne

  2. These are harder to watch than "Bambi".

  3. Bambi AND Terms of Endearment together!

  4. Hi Sue and everyone,

    I'm posting this on every CFS blog I read. It is a declaration and a call for action!

    Most of us probably know that both the WPI Institute and the CFIDS association are in the running to win hundreds of thousands of dollars in grant money from Chase Community Giving. We know this, and we're voting, right, because we're an incredibly strong, vital internet community. But...only about 5,000 people have voted. We are getting beaten by a drum corps! Am I really supposed to believe that more people out there care about a drum corps than about doing research that could potentially save our lives? I can't believe it! We have to do something.

    Because this issue is so important, I swallowed my pride (I usually think mass Cause Emails are annoying) and emailed all my friends asking them to vote for WPI, and although they love me, only like 3 voted. So here's my idea and suggestion: I'm going to email or facebook message each of my friends individually, and not care how annoying I am, and ask them again to vote. I could probably get over 100 votes that way, depending on how many of my friends are flakes. I'm not talking about just my good friends, I mean even just random Facebook acquaintances, too. It's annoying, but my friends will forgive me, and who cares what my acquaintances think?

    Anyway, like the nature of voting itself, one person doing it alone doesn't make much of a dent, but if a lot of us do it, even if just a few of us harass everyone we electronically know, we could get hundreds, maybe thousands of votes. Let's do it, and encourage all our sick Internet-addicted friends to do it, and even our healthy friends. Lets get organized, people! I'm going to post this on my blog and every blog I read, and them I'm going to spend the rest of the day harassing people, and its going to be awesome. Please join me!

    STEP-BY-STEP Instructions:

    1. From your Facebook page, go to Chase Community Giving:

    2. "Like" Chase Community Giving by clicking on the "Like" button.

    3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

    4. Cast your vote for WPI by clicking the "Vote Now!" button.



  5. Anonymous1:54 PM

    There's currently a vote ending in less than 2 days time (11:59am EST Nov 22).

    Some details below from latest leaderboard (2 days 6 hours before end)

    As nobody was doing this (that I know of), for recent leaderboards I have been following the votes being got by the leading 9 ME/CFS groups along with how much 100th position has gone up by (101st would be slightly more interesting but one can't see that).

    For the last 7 12-hour periods, 100th position has gone up by
    (chronologically): +39, +44, +53, +40, +61, +75, +50. At the last leaderboard 100th was at 882 votes. That's with 2 days, 6 hours to go.

    Looking at the last two jumps (i.e. +75 and +50) (it would be extra work for me to calculate too many periods) apart from the IACFS/ME, the groups have been losing ground.

    It is going to be touch-and-go for lots of groups whether they get the $25,000 or not.


    #34 CFSKNOWLEDGECENTER INC Wellington, FL (+50)
    1,194 (+37) 1,231

    #56 MASSACHUSETTS CFIDS/ME & FM ASSOCIATION Quincy, MA (+52) 1,016 (+50) 1,066

    #72 ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION Denver, CO (+38) 931 (+36) 967

    Sun Prairie, WI (+42) 906 (+39) 945

    (+47) 862 (+36) 896

    #93 NJCFSA Florham Park, NJ (+54) 850 (+43) 893

    #158 CFOG, INC Kennesaw, GA (+47) 481 (+31) 512


    In previous CCG contests, there has been a charge towards the end of the contest from other groups. As is clear, the ME/CFS are generally just hanging in there - not keeping up with how much 100th is jumping up by but perhaps able to hold on if things go right. 4 groups are within 85 votes of 100th position.

    A few votes could make all the difference ...