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?
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Thanks as always for posting this Sue, it's great to be kept up to date. :)
ReplyDeleteThat is very frustrating about the paediatric side of things not being addressed as there are so many kids out there that need help.
Glad you are feeling better again.
x Sarah.B
Thanks for the link to my summary and shout out, Sue! I am still a Board member until the end of this year when I hit my term limit.
ReplyDeleteThere was no discussion of pediatric issues. I think maybe one person mentioned it in passing during a discussion of clinical care, but I didn't even write it down it was so brief. I'm sure that's disappointing given how much effort you put into your excellent testimony last time. I wish I knew how much control the committee has over the agenda. I think the bylaws say it's up to the DFO and chairman.
Thanks for the clarification, Jennie. Sorry about the mix-up! For some reason, I thought your term had ended last year - I will fix that. Yes, I am really disappointed they didn't follow-up on their promise...and with Dr. Jason leaving CFSAC, I think it is even more unlikely they will address pediatric issues.
ReplyDeleteSue
Thanks for this post, Sue. I've not been good about keeping up with CFSAC meetings. I hope you're feeling better these days.
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