Community Action

I returned from Hawaii to requests to post these powerful statements of our efforts to get help and to help ourselves:

  • The WPI’s response to the Singh study. link
  • Angel Mac’s notes from her wonderful, authentic CFSAC testimony. link
  • Mindy Kitei’s moving testimony before the CFSAC. YouTube
  • Demonstration before the Department of Health and Human Services. YouTube   link to Rivka’s write-up
  • Updated healKick social networking for young adults. link

I got called on my description of myself as being at 90% by a number of people. I was foolish to attempt to quantify it. I certainly didn’t mean that I felt recovered to 90% of my baseline when I got sick in 1995; I meant that I was feeling pretty close to what I might expect of this body now, which has definitely been through the mill. I am still doing very well since returning home, even after the red eye and missing a night of sleep. I expected to feel the altitude by now and I do feel a little weaker, but I don’t feel particularly sick. More like I’ve been sick for a long time and need rehab. I can get up at will and do what I need to. I’m not short of breath, though I haven’t exerted myself like I did in Hawaii. Still sleeping well. No real physical suffering at all. Ali however continues to struggle. Nothing fair about this disease.

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    8 thoughts on “Community Action

    1. >That map of the people who have viewed the HealKick group is interesting.

      Jamie, are you be able to share the map of people who read your blog as well?

    2. >Thanks for posting about our new site Jamie! I hope Ali feels well enough to participate again. She certainly brought a lot to the table and I feel that she benefited as well from interaction with other intelligent & ambitious young adults going through the same dynamics. That is such a sore spot for many of us, myself included in the past.

      For those that are visiting our site for the first time, you are seeing the Visitor's Map which spots all the people viewing our site, whether or not they're signed up.

      The Member Map, which is only viewable to signed up members, is IMO what will be the most vital tool to connect patients. It shows the location of our members worldwides. I don't believe I've come across this tool on other health-related sites. I surely would have benefited from a map to find other young patients near me 5 years ago when I was literally on the cusp of depression from isolation and losing touch with friends from my past life.

    3. >I'm glad you are doing so well, Jamie. To me, your recovery sounds like a miracle. Thank you for sharing.

      Patricia Carter

    4. >So glad you could make the trip and enjoy it too. That is the goal of me and my husband, to take a trip to Hawaii if I ever get better.

      Thanks for giving me the hope that some how, some day, it will happen. Hoping Ali will start to improve soon too.


    5. >SO Happy you felt well enough to let alone "consider" taking a trip to Hawaii, but to actually accomplish IT, is INDEED Inspirational to all of us
      Hope you had a Great time !!

      Thank you for Sharing the Community Action Links… with this illness we miss so much of what is happening t is wonderful to have things covered in different places so it increases our chances of finding out about them..

      I think I was MOST moved by your comment about not being out of breathe.. I wonder if the ARVs also help do something to help get rid of OI/POTS cuz that would definitely be a HUGE improvement in quality of Life for SO Many..

      *Cheers* on an actual trip to Hawaii ~
      what a dream ! and to your continued improvement and may it trickle down to
      others sooner than later..

    6. >It is very difficult to try and quantify improvement with this illness. Firstly because even when improvement comes, the state of health is still variable from day to day and secondly because if you have been ill for a long time, you forget ( to a certain extent), what it felt like to be healthy.
      It is obvious from all that you are achieving, that your health has improved significantly over the past months and this gives hope to many of us others out there.
      It saddens me that your daughter hasn't (as yet), enjoyed the same degree of improvement as you have BUT that is exactly the reason why the research MUST continue.
      It makes sense to me that a number of retroviral infections are playing a part in this and we will all need treatment specific to the individual and their particular combination of infections.
      I hope I live long enough to see that day come.

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