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Summary of Latest CFSAC Meeting

Posted Nov 16 2011 6:01pm
I plan to write a lengthy post on school accommodations for kids with ME/CFS but am still pretty run-down and just not up to it yet.

In the meantime, I thought I would post a link to an excellent summary of the latest CFS Advisory Committee meeting (for the U.S. Department of Health and Human Services) that took place last week.  As you may recall, I had planned to go but with Ken traveling, me not feeling well, and being denied time for public testimony (they had more speakers than they could fit in), I did not go.  They didn't videocast the meeting this time due to budget cuts, so I really had no idea what happened at last' week's meeting.

Fortunately, Jennie Spotila, Board member of the CFIDS Association and ME/CFS patient (and friend), posted a clear and comprehensive summary of the meeting on the Research 1st website .  Jennie's summary is brief and easy to understand, so I encourage you to take a look.  While you're there, the blog has also posted several different people's testimony from the meeting.

I was highly disappointed to see that the CFSAC meeting did not address any issues related to pediatric ME/CFS.  As you may recall, our family - and many others - made a special effort in May to attend the CFSAC meeting in person to bring attention to this neglected and important issue.  By the end of that meeting, the committee said they'd been very impressed by all the testimony about the plight of sick kids and teens and that they would devote part of their next meeting to hearing from pediatric experts and learning more about it.  Now, I may be jumping to conclusions - perhaps it was briefly mentioned or tabled until the next meeting - but it appears that the topic was not discussed.  It required a lot of time, money, and precious energy  for all of us to attend that meeting, and it is discouraging that nothing seems to have changed.

OK, that's it for tonight.  I'm not badly crashed this week anymore (i.e. in bed) but am still feeling really run-down and achy.  Jamie is back to school this week (hurray!), but now Craig is home sick.  It seems like "just" a cold he picked up at school, but that tends to knock him out completely.  Always something with this exciting illness, isn't it?
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