At the end of October, the CFS Advisory Committee will once again meet to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning.
It has long frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we are too sick to attend them. In hoping to tell my story and perhaps be a voice for the voiceless, I decided I would attempt to create a video testimony (with assistance) which could hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.
In the meantime, I've included a link to the video below. A non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) has also already featured the testimony on their youtube channel.
Since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me, so it is her voice that you hear in the video. I am extremely grateful to her for all her help!
Thanks for watching and for hearing my story.
*Update: I just got word my video testimony
has been accepted, and will be viewed at the upcoming CFSAC meeting
(along with other patient testimonies) on October 30th around 9:15 a.m. I am very excited and happy to receive this news! The two day meeting will be
videocast live, if anyone wants to watch it online. For more info,
visit: http://www.hhs.gov/advcomcfs/
Much thanks to all who left me such kind comments and words of support!!
This is really good.
ReplyDeleteI suspect that the CDC won't listen, even if they watch. The only way they'll respond is if they're made to.
But other people will listen. I can see sufferers sending the link to your video to skeptical friends and family members.
BTW, I didn't hear music in the nonvoiceover version. Are you going to be adding that later?
Yep, excellent. You are very articulate. I think it really comes over how much you have lost through this illness.
ReplyDeleteThis is such an amazing site you've created. I am awed by you Laurel, and miss you terribly. - Allison
ReplyDeleteThis is wonderful, Laurel. Thank you so much for doing this. It brought tears to my eyes. You convey so much in such a short amount of time. I was touched by your love story as well. I hope they do play your video at the meeting -- it needs to be seen/heard.
ReplyDeleteI was able to hear the music in your second video and thought it a moving accompaniment. There is a pause/silence as you do the introductions, then it starts.
Both videos are great. All of it is very well done.
Hi Laurel,
ReplyDeleteYour video is amazing and effective. It brought tears to my eyes, and I really hope it is viewed at the meeting. I think any human with a conscience and a heart would be moved by your story.
(Personally, I thought the voiceover version was perfect without any music BTW.)
Beautiful site, too!
Thank you, thank you, thank you for using your precious energy to make this video. It was incredibly moving and it deserves to be shown: They need to see what this disease can REALLY do, and that being "tired" is the least of our worries. ♥
ReplyDeleteWhat a moving and well presented video.
ReplyDeleteI know we have spoken before but I still think you should have another tackle of your lyme issues perhaps with a different LLMD have you tried Dr Sam Shor not sure if I sent you this before or not.
http://www.publichealthalert.org/Articles/scottforsgren/Dr%20Sam%20Shor.htm
Just for information I found Clarythromycin worked wonders for my throat/swallowing difficulties and hoarse voice/ constant cough choking. I was on it for nearly a year along with Amoxycillin which I have been on 2 1/2 years. I am virtually 100% but still deteriorate when I come off antibiotics.
I realise this is only part of your problem but Lyme can have a major role.
Take care and hugs.
Hey Laurel,
ReplyDeleteWell done!!!!!
You are a TRUE inspiration. I really hope the CDC takes notice of this video.
That's a nice little sparkler you have on your left hand!! Your husband to be looks lovely.
I think the video is great and informative in all the right ways. I am going to put it on my blog for a while and link it to yours. I hope this is ok.
Keep up the good work girl. xx
Treya : )
Wonderful, Laurel. You are an inspiration.
ReplyDeleteLaurel
ReplyDeleteThe video of your story is so amazing and sad at the same time, and reaching so many people. Each time we present to the CDC and the rest of the world evidence of the devastation of CFIDS, we are taking a step forward. You are part of the journey towards the help we all need. Bless you, Laurel.
You're such a warrior, Laurel. Thanks for this. Hang in there; we'll get better one day.
ReplyDeleteLaurel,
ReplyDeleteYou have done a wonderful job with your site and videos. Thank you for your great contribution to the CFS Community.
Kathy Houghton
Alaska CFS-MCS Assn.
The Thief of Many Lives
The reality of living with CFS
http://tinyurl.com/yf2v9qc
Thanks to everyone for all the wonderful comments! Means a lot to me, and is so appreciated.
ReplyDeleteThank you so much for this Laurel. I too got CFS when I was 24. I was bedridden for a few months, but am semi-functional now. I think one of the things that helped me was that my doc diagnosed me correctly pretty early on.
ReplyDeleteYoga has rly helped me deal with the CFS. I know that you are probably too sick to do yoga postures, but have you tried breathing, relaxation techniques or meditation? It may just help a little bit.
Wishing you health and happiness!
Please keep blogging as much as you are able! I have FM (fibromyalgia) and am struggling. My family doesn't understand. I tried to work full-time this year, and I can't do it.
ReplyDeleteThankfully, I have a wonderful, supportive husband.
But, I miss my potential.
Like you, I was high achiever with high goals.
I teach junior high. I love touching lives.
But I can't do it full time. It's killing me.
I fear if I push through, I'll end up very debilitated.
It's so hard to explain that to people who don't understand.
I've just spent years climbing out of my deficit. I had two great kids, but childbirth set me back so far.
I fear complete debilitation.
Please keep telling your stories. I need to hear that it's not all in my head. That I'm not lazy. That it's not my fault.
Thank you.
Laurel, the video is extraordinary, and I believe that the committee will listen because it is so poignant and beautifully done. It is unfair that someone as beautiful as you, both inside and out, has had to suffer for so many years. I pray each and every day for a cure for this dreadful disease that afflicts so many vibrant and intelligent people who have so much to offer in this world. Laurel, you should be so proud of what you've accomplished. Folks who are not half as sick as you are could never produce such a moving and inspirational work. Love and hugs, Linda S.
ReplyDeleteHi Laurel,
ReplyDeleteThat was a wonderful! I was interested to see you went to Tufts. I am from Mass and lived in Davis Sq. for a bit.
Wishing you the best!
Andrew
Love Davis Square! Thanks for your kind comments, Andrew :)
ReplyDelete