Sunday, December 19, 2010

New Video: What is ME/CFS?


**Update:  In light of recent XMRV news, I've decided to remove the above video, as it contained information that has now been refuted.  An updated version, completed in August 2013, can be found by clicking here.

Due to my health, the above video took me a little over 4 months to complete. I created it in the hopes that it might help, even in just a small way, to increase awareness about ME/CFS. This is an important time in the history of the disease, and awareness and advocacy are essential in helping to ensure that funding and research move forward.

My fiance is in this video, as are some good friends and people I have long admired. I hope their photos help put a face to this illness. They each have a story to tell, as do the 17 million others who suffer from ME/CFS world-wide.

I have disabled comments on YouTube because I am simply too sick to monitor them on a regular basis. However, you are free to give the video a thumbs up or down as you see fit. :) Please also feel free to repost the video and share it with others.

In other ME/CFS news, as most here will already know, last week an advisory committee to the Food and Drug Administration recommended that patients with CFS be banned from donating blood (through a new, routine screening question). This, of course, is in light of the possible link between ME/CFS, XMRV and other MLV-related retroviruses. You can read more about this recommendation in the Wall Street Journal article, New Blood-Screening Advised.

The American Red Cross has also recently banned CFS patients from donating blood. This decision follows Canada, New Zealand, Australia and the UK -- countries which all banned blood donations from ME/CFS patients in the last year.

Here's hoping the new year brings even more promising developments, particularly in the form of well-designed research studies and clinical trials. Perhaps then we can finally have definitive answers, and thus a treatment or cure that allows each and every one of us to get our lives back.

Wishing everyone a healthy, happy holiday season!


30 comments:

  1. Thumbs WAYYY up, Laurel!

    God Bless You So Much!

    I will share this with my world!

    Love, Judy

    ReplyDelete
  2. This is such a fine video. Serene, powerful, beautifully paced, with a great song. This video carries such a strong attachment to the subject - deeply emotional, yet detached (in a good way) - and presenting the most important information without a lot of distractions. It packs a wallop - allowing also for contemplation. A very fine effort.

    Chris
    cfspatientadvocate

    ReplyDelete
  3. Very nice video Laurel, your effort is highly appreciated. I'm sharing it with my friends and family.

    Wishing you a peaceful and good holiday season.

    ReplyDelete
  4. Thank you Laurell for creating this fine piece of art in our struggle for improvement. I definitely consider making a version in Dutch!

    Happy Hollidays for you and your fiancé.

    Love,
    Esther

    ReplyDelete
  5. Thank you for this video. I have lived with CFS since 1992 and am hoping for a better understanding in the medical community in light of the new findings and info on giving blood.
    I will be sharing this video and again thank you for your hard work.

    ReplyDelete
  6. Powerful video, Laurel. I know how hard it must have been. I cried most of the way through it, especially when I saw Dominique in uniform.

    Thank you from my heart.
    Toni

    ReplyDelete
  7. Hey Laurel, Well done for your hard work. Again, very informative, moving, beautiful... I shared it on FB today.

    Well done again Xx

    ReplyDelete
  8. Love this video.
    Shared it.
    Well done, its great.
    x

    ReplyDelete
  9. This is excellent, Laurel. I plan to send it to as many people as I can think of....Bless you for taking the time and energy to create this as a voice for everyone who suffers with ME/CFS!

    ReplyDelete
  10. Simply brilliant, Laurel. Thanks so much for the effort you put into this worthwhile project. It is by far the best video I have found to share with family/friends as it provides a short and factual account of what the illness is really like.

    ReplyDelete
  11. Thank you, Laurel, for the photos of people, the background photo, the memorial, the music and the facts. I hope the video travels far and wide, so it can help people understand what a serious disease this is.

    ReplyDelete
  12. Amazing video laurel, thank you for putting this together, know how difficult this must have been for you. Loved seeing familiar faces & ur lovely jim! Shed a tear to see alwyin & others at the end. Never to be forgotten. Love to you laurel xxx

    ReplyDelete
  13. i've started this comment many times since this blog came out and have deleted all. some of them were quite long. i deleted all because none of them dealt with the sincere pleasure reading your blog gave me. I cried every single time i read or watched it. your determination and focus are phenomenal, and i have to reiterate others before me - well done you. you're my favorite hero.

    ReplyDelete
  14. Another wonderful video, Laurel! Thanks for using your energy to advocate for us. :)

    ReplyDelete
  15. A simple and well put together educational message. Well done, Laurel.

    ReplyDelete
  16. Awesome! Thank you so much! I've copied to both my blog and my FB page.

    ReplyDelete
  17. Laurel One more amazing gem. Thank you so much for all you do.

    ReplyDelete
  18. This is an amazing video. I'll be sharing it on Facebook and my husband will be sharing it with his co-workers. Thank you for your hard work and vision in creating this...it's both informative and deeply touching. The photos at the end make it so personal...I felt an instant kinship. (Kate-ME/CFS 20+ years)

    ReplyDelete
  19. Fantastically done. Not sure how you were able to do it, but it is a wonderful message. I am sharing it with everyone. Thank you for it.

    Best,
    Mikael (Alexis' partner)

    ReplyDelete
  20. Thanks for all the thumbs up and supportive comments. I so appreciate them!

    ReplyDelete
  21. Thank you for using your precious energy to create this video. It is very powerful and I have already shared it with friends and family.

    I hope that the new year will bring you and your fiance improved health. I think of you often and send good wishes your way,
    With tears still in my eyes,
    Joanne

    ReplyDelete
  22. Thanks so much for making this. It is really well done and very informative. As a sufferer for 7 years now I am always looking for ways to raise awareness and advocate for more funding for research. Thanks for spreading the message. I will be sure to post this on my blog http://cfsadayinthelife.blogspot.com/ as well in the hopes that even more people can see it! Happy new year to you and your fiance.

    ReplyDelete
  23. I've finally had the chance to watch your video, Laurel, & thought it was great - really informative and realistic without being too negative - I love the way you've managed to get some hope into it. I will add it to the links on my blog. Thank you for all the effort you put into making it.

    A happy - and healthier - new year to you and Jim. Let's hope it's the year when the ptb start researching ME properly ...

    ReplyDelete
  24. Hey there, new follower here.

    I deal with chronic pain/illness everyday.

    I hope when you get a chance, you'll stop by and follow me back.

    ~Steph
    http://fortheluvofsanity.blogspot.com
    http://thispainsux.blogspot.com

    ReplyDelete
  25. Dear Laurel,

    I just wanted to let you know that you have inspired me to make a Dutch version of your video. My youngest son helped me with the technical stuff and I'm grateful for the pictures I received of Dutch and Belgian patients.

    Thank you very much Laurel, you are my inspiration.

    Love,
    Esther

    http://www.onwilliglichaam.blogspot.com

    ReplyDelete
  26. Laurel, I posted your video on facebook a while back and forgot to comment that I'd done so. It got great feedback - several friends said that they learned things they hadn't known. I'm sure making it was challenging, but it's having a great impact.

    And thanks for the link love in the sidebar!

    Jocelyn

    ReplyDelete
  27. Who is the guy named Jack, mentioned among those who died? (I recognised all the others.)

    ReplyDelete
  28. Hi, Indigo Jo. Thanks for watching my video. I don't feel comfortable giving last names of anyone in the video at this time, as I only requested permission to use first names and photos. I feel I'd have to contact and ask the family additional permission to give last names, and I don't want to bother them again to do so. I didn't know him personally, but had ME/CFS friends who knew him.

    Thanks for your understanding.

    ReplyDelete
  29. My apologies - the others in that montage are all well-known to the ME activist community so I had assumed that the same was true of Jack, and that most people knew who he was but I didn't.

    You may be interested to know that I wrote an article for the "Blogging Against Disablism Day" event, regarding the tireless use of a certain derogatory phrase when reporting about ME (including very severe ME, e.g. Lynn Gilderdale's case) in the British media. The post is here.

    ReplyDelete
  30. No apology needed! You are right -- the other faces are more well-known. Thanks for the link; I will check it out!

    ReplyDelete