I would love to be able to sail again so I could teach my darling wife; return to our re-enactment group and watch the kids grow and learn with great friends all around; take the kids to the cinema for a flick and some pop corn, or down to the beach to go rock-pooling; finish repairing, painting and decorating our house so it looks like any normal, decent house; most of all go back to work as the skilled tradesman I was for 25 years - and be able to stand on my own two bloody feet.
I've shared (and will keep sharing) this video with every new friend I make online who suffers CFS or Fibromyalgia for that matter. It's more of a help than you'll ever know xoxo.
The day I dream of. I would take my dogs to the beach. We would walk along the water and return for a swim. Picnic in the sand. Lay down and rest and soak up the sun. Hit a local restaurant and order salmon and hushpuppies. Drive back home with the top down and the music blaring and my dogs ears flapping. This is the day that I hope and fight for.
This made me cry so hard.... I have a friend who has this condition and I'm not a religious person but I pray for the day she can dance again. I really do.
Thank you. I am one of those people. I gave up doing those things so long ago, that I rarely even think of wanting to do them anymore. So, thanks, this is very moving. May we all find a cure soon.
I love this video...I know i would run!!!! Before i got CFS I loved to exercise and run. I would also love to spend time with family and friends and be able to make plans a head of time without having to cancell them. I miss me.
thank-you for making this video. hopefully with the new info that has been found on xmrv cfs/me will be given more attention for research. sometimes i forget that i'm not the only one who gets a bit sad at not being able to ride a bike or jog or have to plan my days so much. bless you
Thank you for all your faithful work all these years, CFIDS Association! :-)
I would have gotten my pilot's license and helped medical missions organizations. I would have married and had children, lots of children. I would thank God for allowing me to do more for others rather than just focusing on my own little world. I pray for a Ceiling And Visibility Unlimited (aka: CAVU) day for all of you who are suffering with CFS/ME!!!
I think this video speaks volumes to how it feels to fight this thing invisible to everyone else but so real to you ... If I were free of this tomorrow my first wish would be to play outdoors with my 10 yr old little girl for as long as she wanted me to.
Well intentioned, but this is sappy and under-represents the reality of the disease. In addition to the "fatigue" - too mild and misleading a word, it's more like having your blood drain out - the disease is associated with brain and organ damage, increased risk of cancer, accelerated aging and on.
Anyone out there who wants to help -- please take five mintues and write your Senate + House reps requesting effective research. Research started >10 yrs ago but was blocked by the CDC.
Well, hopefully mine is a minority opinion. Let me take back the word 'sappy', that was rude.
CFIDS is not understood by the general population, physicians or friends and families of many people who contract it and any honest attempt to change that is a plus
I should probably have added a thanks to SolveCFS for making a sincere first step... so let me say that now.
Wishing recovery to all -- with a fight for research, respect and knowledge it there could be a road out of CF/ME
Bravo to the CFIDS Association and the other organizations and individuals dedicated to the mission and may we all benefit from their various areas of expertise.
This video is very good, but the CFIDS Association of America is definitely not working to "solve CFS". They waste loads of money on expensive and mostly useless studies, while the actually groundbreaking research is done/funded by completely different institutions (e.g. the National CFIDS Foundation and the Whittemore Peterson Institute.)
I think what the CFIDS Association does well is to compile, explain & educate about research findings, which is huge. There are so many studies being done, it is hard to keep up with individual institutions' findings. I rely on the CFIDS Association not to DO the research, but certainly to tell me and more importantly, the medical community about it. Putting together the pieces of the puzzle, analyzing & communicating about them is indeed part of the big picture when it comes to "solving" CFS.
Well said. I was thinking of contacting the Wittmore Peterson Institute tomorrow. Please feel free to remind me next week, in case I forget. I do not want this opportunity to go by. Thanks for your help....Highest Personal Regards, Dr M
This should really help non-suffers to understand better that this is real,we are not lazy or just depressed......we all would love our life back........and that we have dreams just like everyone else......Diane
I would love to be able to sail again so I could teach my darling wife; return to our re-enactment group and watch the kids grow and learn with great friends all around; take the kids to the cinema for a flick and some pop corn, or down to the beach to go rock-pooling; finish repairing, painting and decorating our house so it looks like any normal, decent house; most of all go back to work as the skilled tradesman I was for 25 years - and be able to stand on my own two bloody feet.
Shawoddynoddy4000 2 days ago
Beautiful- I'd love to dance with joy :)
brightredpoppy1 3 days ago
I've shared (and will keep sharing) this video with every new friend I make online who suffers CFS or Fibromyalgia for that matter. It's more of a help than you'll ever know xoxo.
brisbanette 6 months ago
The day I dream of. I would take my dogs to the beach. We would walk along the water and return for a swim. Picnic in the sand. Lay down and rest and soak up the sun. Hit a local restaurant and order salmon and hushpuppies. Drive back home with the top down and the music blaring and my dogs ears flapping. This is the day that I hope and fight for.
TheFletch827 9 months ago
This made me cry so hard.... I have a friend who has this condition and I'm not a religious person but I pray for the day she can dance again. I really do.
MikaMad14 10 months ago
WOW, you just reminded me of all the things i want to do, : )
theonlyfluffyone 1 year ago
Thank you. I am one of those people. I gave up doing those things so long ago, that I rarely even think of wanting to do them anymore. So, thanks, this is very moving. May we all find a cure soon.
Raina430 1 year ago 2
I love this video...I know i would run!!!! Before i got CFS I loved to exercise and run. I would also love to spend time with family and friends and be able to make plans a head of time without having to cancell them. I miss me.
Katnet1 1 year ago
thank-you for making this video. hopefully with the new info that has been found on xmrv cfs/me will be given more attention for research. sometimes i forget that i'm not the only one who gets a bit sad at not being able to ride a bike or jog or have to plan my days so much. bless you
gloweverlasting 1 year ago
This Pop Superhero simply wants to get back to mentoring musicians...
and making a difference in her world! BUT...
I sure would LOVE to do a LOT of the other goals listed here too. *smile*
lynnjulian 1 year ago
i feel SEEN & AFFIRMED as i watch this.
bless you.
this is one of the most succint videos i've ever seen "explain" what it is to face this.
crawltoWALK 1 year ago 3
low dose naltrexone! ;)
nese67 2 years ago
Thank you for all your faithful work all these years, CFIDS Association! :-)
I would have gotten my pilot's license and helped medical missions organizations. I would have married and had children, lots of children. I would thank God for allowing me to do more for others rather than just focusing on my own little world. I pray for a Ceiling And Visibility Unlimited (aka: CAVU) day for all of you who are suffering with CFS/ME!!!
cavugirl 2 years ago
Finally...someone can bring this disease to life. I would like my life BACK!
therealcrazyjane 2 years ago 2
I think this video speaks volumes to how it feels to fight this thing invisible to everyone else but so real to you ... If I were free of this tomorrow my first wish would be to play outdoors with my 10 yr old little girl for as long as she wanted me to.
sweetlollipopshop 2 years ago
Well intentioned, but this is sappy and under-represents the reality of the disease. In addition to the "fatigue" - too mild and misleading a word, it's more like having your blood drain out - the disease is associated with brain and organ damage, increased risk of cancer, accelerated aging and on.
Anyone out there who wants to help -- please take five mintues and write your Senate + House reps requesting effective research. Research started >10 yrs ago but was blocked by the CDC.
34randomAA 2 years ago
"sappy" no it's not. I think it is a good representation of CFIDS. It's out there to help and inform.
janydeee 2 years ago 2
Well, hopefully mine is a minority opinion. Let me take back the word 'sappy', that was rude.
CFIDS is not understood by the general population, physicians or friends and families of many people who contract it and any honest attempt to change that is a plus
I should probably have added a thanks to SolveCFS for making a sincere first step... so let me say that now.
Wishing recovery to all -- with a fight for research, respect and knowledge it there could be a road out of CF/ME
34randomAA 2 years ago
Its a great video but when will this begin to resolve. I see many attempts only to have hopes dashed.
wingssoblue 2 years ago
Totally perfect in every way!
petemora2008 2 years ago
Bravo to the CFIDS Association and the other organizations and individuals dedicated to the mission and may we all benefit from their various areas of expertise.
GRGirl 2 years ago
WOW! this will hopefully at last enable others to understand what we have been trying to tell them over and over again. Thanks!
elecia100 2 years ago
Nicely done video! (comment by someone with CFS since I was 13)
janicehouser 2 years ago 2
This video is very good, but the CFIDS Association of America is definitely not working to "solve CFS". They waste loads of money on expensive and mostly useless studies, while the actually groundbreaking research is done/funded by completely different institutions (e.g. the National CFIDS Foundation and the Whittemore Peterson Institute.)
DiamonDie 2 years ago 2
I think what the CFIDS Association does well is to compile, explain & educate about research findings, which is huge. There are so many studies being done, it is hard to keep up with individual institutions' findings. I rely on the CFIDS Association not to DO the research, but certainly to tell me and more importantly, the medical community about it. Putting together the pieces of the puzzle, analyzing & communicating about them is indeed part of the big picture when it comes to "solving" CFS.
GRGirl 2 years ago 2
Well said. I was thinking of contacting the Wittmore Peterson Institute tomorrow. Please feel free to remind me next week, in case I forget. I do not want this opportunity to go by. Thanks for your help....Highest Personal Regards, Dr M
DysautonomiaMD 2 years ago 2
Thank you, CFIDS Association, for this video!
cfidsalyson 2 years ago 13
well done! I hope ppl will realize just how bad this illness is through this video.
somethingsgoneamuck 2 years ago 6
This should really help non-suffers to understand better that this is real,we are not lazy or just depressed......we all would love our life back........and that we have dreams just like everyone else......Diane
cfssurvivor 2 years ago 24