Documentary Interview with 2 girls with CFS (chronic fatigue syndrome) by Dr Franky Dolan

[SuperMissblueeyes]

I've had CFS for 5.5yrs now. I understand what you're saying about using a shopping trolley to help you walk round the shop, people (even some doctors) not understanding what it really is like or the problems it causes, but I also understand about how it makes you appreciate the smallest things. I've always loved the winter, the cold has always refreshed me, but now I find that the cold on my face as I step out the door wakes me up. But my main concern at the moment is will it spoil Christmas?!

[justinreilly1]

RIP Amberlin. We will always remember you!

[1Agentforchange]

On Nov 8-9, 2011, The CFS Advisory Committee will meet in Washington,DC. This is the U.S. committee which reviews ME/CFS issues. We will be there. We will bring these two girls voices.They are no longer invisible! We are standing up for ME/CFS. And to you Amberlin -the beautiful young girl with glasses - We will miss your voice dearly! Thank you Franky for such a wonderful video! Marly Silverman, Founder, PANDORA.

[tracyannceecee]

That was a great video. I am having an especially bad day today and this gives me strength. When you have this disease, I swear you can recognize it in a person's eyes-unless you are wearing sunglasses as I often do too.

[myeyesropen40]

Most communities Christan or not are not aware of what is going on God is faithful and caring to be beyond peoples perceptions of what they thinking is. I am a Christain now my view is different about everything I use to be the most active person. Now I am thanking Him everyday in what I can do or not. One day at a time that what it takes. I am waiting for my doctor to send me to a specialist a Immune doctor. My IgG subclass is abnormal the CMV and EBV is active now. Hold on He cares for you all

[myeyesropen40]

I am so glad I ran into your testimony I want to have a support group too. Where can I start.? This speak so much like me. I am thankful I can do somethings yet I rely on medication to get me going for a short time. Now I am thankful for the little things.

[mrtuber88]

THIS IS REAL. The symptoms ARE real. NO condition of CFS is psychological. If it is psychological it is most likely depression, IT IS NOT CFS. CFS is entirely PHYSICAL. Do not make our lives harder than it has to be. This is debhilitationg and isolating for most of us. When we say something, listen... Listen to exactly what we have to say. Because our symptoms and ailments are very complex.

[mrtuber88]

Ladies and gentlemen this video is the real deal. I have been struggling with CFS since I was 16. I went from being always active, always playing sports, nearly straight A's to not being able to get out of bed or walk up the stairs. This occured within a matter of months. The offset is still unclear. For those of you who do not believe these girls or do not believe in this illness...I can't even say how many times I've wanted to hit people in the face for being entirely unsupportive.

[inkubatorius]

the end of " they were too tired to continue " sounds like a sick joke. Nice interview!

[NikkoYM]

thank you for posting this. the only suggestion I would make is to change "girls" to "women". I almost didn't want to watch it, because I thought it was going to be about Pediatric CFS patients. Thank you ladies, you did a great job....!!! I think it's always good to mention that different CFS people can have different symptoms. Thank you....

[ShadowxMaker]

I wish more people understood CFS..... 

[Claggy]

They don't look sick to me..... HA, only kidding. Bet you've all heard that one, 'cause I know I have. Very nice video.

[chefordonio]

This video speaks such TRUTH!

[smlovinglife]

I submitted to the igenix lab to see if I had lyme disease on a couple occasions. One time it was negative, and the other time, it was positive! The problem with Lyme disease is that the testing is not reliable. -Either way, the symptoms are EXACTLY the same as CFS/ME. Fibromyalgia and POTS and MCS are pretty much the same too. In the end, those diagnosed with them, probably have the same disease. WE NEED MORE RESEARCH!

Dr Dolan is all over the media! I saw him too. THANK YOU for eveyrthing!!!

[patsmithsmithpat]

Everyone needs to see this video! I saw Dr Dolan in a magazine recently, and he has the heart and soul of a true hero!

It is incredible that he is doing so much to help so many people, even through his own serious illness. an, the world needs more people like this.

These two girls are very brave too. I know how hard it must have been to push themselves just to be filmed like that. I know that it was a "good" day for them as well. Thank you all for sharing!

[JJB0891]

If only everyone really understood what sufferers go through with this illness, I think there would be a lot more support. even just from family and friends, those are the hardest to get on board, or so it has been for me. I gave up on trying to explain how it is to people a long time ago.

[094340]

This has LYME written all over it ladies. Igenex Lab in California. Give them your blood. I wanted to believe I had anything but Lyme for a long, long time but eventually I had to accept the possibility. At least I know what I'm dealing with and that is a starting point. Good luck.

[voguee2]

@094340 same here actually. I was told I had CFS for two years and I suffered like hell, then I found out I had Lyme and suffered like hell but at least im getting treatment finally. :)

[theonlyfluffyone]

this is so true, people dont see it, the more we share the better it will become : )

[muddipuppy]

If you ever feel you are alone in this disease, you are not. As much as you are able, please share your story, share it with the pride of the warrior that you are. We are all standing behind you. We can turn private pain into public purpose. With love, Amberlin (the girl in the sunglasses)

[MsCentrum04]

@muddipuppy You guys are great! I'm older a single blonde, "acting."I may have triggered

or made the CFS worse, working full-time, teaching my beloved night classes at college. Then? Three or four hours of sleep....Finally, it caught up to me.I'm on Disability

now,Thank God. Applied for it citing my Meniere's Syndrome,vertigo,etc.I have never revealed my CFS to others ! I'm "young" to have such a small life! I think:Enjoy tiny triumphs!

Parents are in their late 80's and Do more. 11/11

[LSecret]

I'm not alone :) anymore

[Claironess]

I am looking forward to when this recent relapse abates so I can hang out on my recliner when awake. That's my reprieve--the recliner. Even in full recline it can be too exhausting. The worst is waking up after 7 hrs of sleep short of breath from too much exertion, which, depending on how sick I am, can be getting a couple of snacks in a 12 hour period or can mean running a couple of errands. It's so variable, even though the days I can run a couple of errands are far and few in between.

[Claironess]

When I am my most fatigued, I have shortness of breath.  It sucks to wake up after 7 hours of sleep and find myself short of breath. My brain tells me I ought to be rested from whatever it was that I did. Yesterday, I got myself snacks and warmed up two meals and today I woke up short of breath. Resting in bed is getting really really old. Can't wait until my relapse ends and I am able to hang out in my recliner during my waking hours. (You see the recliner can be too tiring.)

[smlovinglife]

Truly a Invisible Disease.

This is important work. Thank you for sharing this interview!!!

[patsmithsmithpat]

This needs to be seen by everyone. Dr Dolan is seriously doing amazing work. Thaaaank youuuu! You have helped to save my life. Thank God I am not alone.

[ranhanpan]

Wow! More GREAT work by Dr Dolan.

I love these two girls, they do speak the truth of this invisible disease!

[SharkBateNait]

nicely done

[zanzan121]

You guys describe CFS perfectly. Your awareness of self is amazing. I am a young women who has dealt with this condition. Much LOVE to you guys :)

[pigeonsintheattic]

Please see a lyme disease specilist if you are diagnosed with chronic fatigue syndrome. Western Blot, or clinically monitored is the best way to diagnose Lyme. The ELISA test for lyme does not work.

[pilomaya2012]

i am sick of being told to cheer up, think possitive and pucker up. i wish i fking could. i am wishing for a cure. god i hate this illness. the only good thing about it is i am learning to take each moment as precious even if i am feeling so bad and my body aches.

[ecftube]

Hey guys....PLEASE register at the Oprah Winfrey website and let her know how much you would like to see her do a show on Lyme disease. Dr. Oz thinks the "UNDER OUR SKIN" documentary is wonderful but a show about Lyme won't be done unless she sees lots of interest. Request that LLMDS and patients be the guests so that we can be heard. Also, Daryl Hall would make a great guest. OPRAH needs to hear about YOUR experience with Lyme disease. WE ARE ALL IN THIS TOGETHER !

God Bless,

Elaine

[andibino]

I am personally glad that someone is bringing life to this illness. I am a mom of 2 children who take the gusto out of me. I can go a few days with no naps but then "crash" for several more. I am tired of people just calling me lazy. I want to be able to enjoy life, clean my house, run around with the kids and without needing a nap.

[DaveCares54]

Sure sounds alot like Lyme or the co-infection that often go with the tick bite. Was any blood work or brain imagining done to rule that out?

[BretagneShrew]

good idea to do a documentary.. whens it coming out? you should interview some of the 25%'ers, the ones who are completely bedridden.

[sashaandshelby]

Good job girls, so very true, the comment of

the more you try to make others "comfortable" enough to be around you, the more invisable you become.Just went thru that at xmas and came to the sad realization I was happier to

get home (alone) and just "be" than to try and

"be" around my family, who are ignorant to the

realities of my "life" on a daily basis and are more than happy to keep it that way so they won't have to make any changes to thiers

in order to love and care for me. So sad :(

[lc98007]

Great job! Good questions.

[ZziRf]

Dr Dolan - how about a video on the religious views of people with CFS or the other side ......a video on what religious people think is the matter with CFS people...go discover yet another source of suffering.

[BretagneShrew]

how is that relevent? we all have different religious and spiritual views, just like the rest of the population.

[stillwaterguy04]

It's relevant because Christian people tend to be very intolerant of CFS, possibly because the Bible says that men who do not work shouldn't eat. Christian people are also tremendously intolerant of gay people - they don't want to understand. They enjoy the misinformation because it allows them to persecute us with impunity. I am gay, and I have CFS, and I find tremendous parallels in the misunderstanding that accompanies both life situations.

[ZziRf]

Clueless (sometimes even abusive) people surround me too - I love this video. It is great to connect to the non-clueless. Thank you for this posting.

[hurliegirlie1911]

I was diagnosed with CFS at my doctors, but later tested positive for Lyme disease with the Igenex lyme test. I've got all the symptoms you have, and can completly relate to people not understanding especially when I look nice and put a smile on. take Lyme into consideration! feel better! <3

[justjoshfunk1]

Another great video. Nice interviews! Good job.

[girlpokerchamp]

These girls are beautiful and courageous

Thanks for sharing the interview.

[Suzanne42]

CFS should be called 'CFS cancer' because it is THAT debilitating, but people have no idea that it's actually that horrible. This is a great interview.

[HumanHorrorMovie]

As a fellow sufferer I feel for you both, best thing to do or at least the best thing I have found is to pace yourself and try not to let it get you down.

[thane17]

Great Video! I was diagnosed with CFS a few years ago so I feel your pain. I can't help but wonder if you both have done a reliable Lyme disease test...because that turned out to be the cause of my CFS. I wish you both the best of luck and way to go on the Support Group!