I really wanted to see this, but when I copied and pasted the link to my browser, it said the video had been taken down. Boo hoo (:. Any idea what's up? Love you loads.

try this http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?utm_source=%23MEAction+Newsletter&utm_campaign=5550d7fdb7-EMAIL_CAMPAIGN_2017_01_05&utm_medium=email&utm_term=0_c4e623c366-5550d7fdb7-351125117&mc_cid=5550d7fdb7&mc_eid=542901d956

this was a wonderful talk. I am trying to think of how to get my relatives to listen to this. Sigh. Probably not. For those who haven't listened yet, it is about 17 min long. And riveting and so true of all of us. Thank you Lupin1

I was able to see it with this link. Thank you so much. I am going to send it on to friends and family. It was really good. Much love.

Brilliant isn't it? Made me cry!

Oh, my gosh. I was blubbering like a baby over here. Somehow, seeing her express what I deal with every day, made it really real to me. I could have compassion for myself as I felt compassion for her. I don't know if that makes sense, but that's how I felt.

Very moving. So hard not to feel emotional. Good on you beautiful Jennifer. Thankyou dear Lupin for sharing this. It means a lot. Stronger in numbers. Never alone. Remaining hopeful. xo

She has a film on ME showing at the Sundance festival too!

I found this very interesting and helpful. God bless her for sharing with others. I don't know what we would do if we didn't have God to lean on. Her strength and positivity was so evident, like a light shining in the darkness. We have to keep on PRAYING that there will be a cure for this illness. I believe there are several different types of CFS, at least 3 or 4 types. A different type has a different cause. I believe there will be a different treatment or cure depending on which type you have. I think that is the reason for all the confusion in definition and why studies don't go the way researchers expect. A British researcher was able to break down the different types of CFS but had to end his research because of lack of funding. I just wish someone could carry on his research where he left off. I find the hardest thing is keeping up my spirits. Perhaps this is because I'm older (I'm 68). I also depended a lot on my husband for moral support but he passed away 15 years ago. My friends and my son are now so very important to me. Laughter and companionship are healing and so needed for our mental health's sake. I want to just stay home because it takes so much energy to go out but I know that I can't just do that. I thank God everyday for the energy that I do have. He miraculously provides for me every day and I am always surprised when I get something done or someone does something for me. I find the people on this site are so interesting and encouraging. Your courage and love is infectious and it makes me want to keep at it and not give in or give up. Thanks to all of you for sharing your lives with the rest of us. It means the world to me. Love and blessings to all, Cheryl xo

I definitely agree with you, goldengirl, that there are several conditions that are simply called CFS but actually have different causes. When I was first diagnosed, fibromyalgia was called CFS. In the early days of the internet, (the days when only the complete computer geeks had it) a friend did some research for me and gave me a printout of one study which plotted sufferers by symptom and showed 6 distinct clusters. That and the way what works for one person doesn't for another are why I believe it's actually more than one thing.

This video is amazing, it made me emotional to have what I struggle with everyday expressed in words so clearly. Its so rare to see any sort of discussion about Chronic Fatigue in the media and its very comforting to know that their are so many out there who understand the frustration that comes with the ignorance and dismissal many people show towards this disease. Thank you so much for sharing it :)

Excellent, had me in tears. She explains our illness so well and our experiences with the medical world.