aimossy
Senior Member
- Messages
- 1,106
Had to post this I just saw this on FB its from the website, its an amazing letter.
A Mother’s Plea
Posted on August 13, 2014 by Simon — No Comments ↓
From a donor and mother of a patient:
“Seeing my daughter deteriorate from a bright, well-meaning teenager into what can only be described as a wreck of a human being breaks my heart.
“Speaking as a caregiver, I cannot argue about the merits of studying genetics in ME over the microbiome or the metabolome—after 14 years of neglect from the entire medical profession, I only wish for research to be done in ME and for it to be done now, period. From the view of a parent who has to worry about her child’s future as well as her own ability to take care of her daughter when she becomes too old to do so, ANY research being done is 100 times better than no research.
As any ME patient will know, time is something we cannot buy back and the more and the sooner any research is done into this illness, the better
“Perhaps it would be a bit of a change for anyone to read about the enormous toll that this disease takes on a caregiver as well as on a sufferer. Not only must I hold my daughter’s hand as she mourns the losses of losing the prime years of her life to being in bed; being unable to have a family or any life of her own; and having no career—I must also let go of the hopes and dreams I had for her as a child.
“I must re-think, every day, how to plan for the rest of my life as well as my grown-up daughter’s life. Because of ME, I am unable to settle into retirement with my husband as I had hoped to long ago and to visit the many places that I had hoped to see—and which I also hoped my daughter could see. I have to plan with my husband as to how to delay his retirement so that we can prepare for any urgent need in our daughter’s illness and to ensure that she would be able to pay for any medical treatment that she would need when I am no longer able to support her.
“The point of all this is that—as any ME patient should know—time is something we cannot buy back and the more and the sooner any research is done into this illness, the better. Yes, there are lots of politics involved in the monster that is ME and we do not have the energy to march on Congress or Parliament precisely because we are housebound—hence all the more reason to speed research up in other ways.
Image courtesy of FreeDigitalPhotos.net
Even if it means crowdfunding one dollar at a time.
“As a non-patient, I am perpetually impressed by the tenacity and collective strength of this patient community and it gives me even more reason not to see it flounder in underfunded research any longer.
“However you may personally feel about the microbiome, Dr. Lipkin is a world-class researcher of whom, simply, we have far too few in this disease.
“I may not know much about the science, but having research done is an infinitely preferable state of affairs than having no research done. And I do not even suffer from this disease—my daughter does. The urgency to do something now—to lose less time—should hit even closer to home to a patient than to a caregiver like myself.
A Mother’s Plea
Posted on August 13, 2014 by Simon — No Comments ↓
From a donor and mother of a patient:
“Seeing my daughter deteriorate from a bright, well-meaning teenager into what can only be described as a wreck of a human being breaks my heart.
“Speaking as a caregiver, I cannot argue about the merits of studying genetics in ME over the microbiome or the metabolome—after 14 years of neglect from the entire medical profession, I only wish for research to be done in ME and for it to be done now, period. From the view of a parent who has to worry about her child’s future as well as her own ability to take care of her daughter when she becomes too old to do so, ANY research being done is 100 times better than no research.
As any ME patient will know, time is something we cannot buy back and the more and the sooner any research is done into this illness, the better
“Perhaps it would be a bit of a change for anyone to read about the enormous toll that this disease takes on a caregiver as well as on a sufferer. Not only must I hold my daughter’s hand as she mourns the losses of losing the prime years of her life to being in bed; being unable to have a family or any life of her own; and having no career—I must also let go of the hopes and dreams I had for her as a child.
“I must re-think, every day, how to plan for the rest of my life as well as my grown-up daughter’s life. Because of ME, I am unable to settle into retirement with my husband as I had hoped to long ago and to visit the many places that I had hoped to see—and which I also hoped my daughter could see. I have to plan with my husband as to how to delay his retirement so that we can prepare for any urgent need in our daughter’s illness and to ensure that she would be able to pay for any medical treatment that she would need when I am no longer able to support her.
“The point of all this is that—as any ME patient should know—time is something we cannot buy back and the more and the sooner any research is done into this illness, the better. Yes, there are lots of politics involved in the monster that is ME and we do not have the energy to march on Congress or Parliament precisely because we are housebound—hence all the more reason to speed research up in other ways.
Image courtesy of FreeDigitalPhotos.net
Even if it means crowdfunding one dollar at a time.
“As a non-patient, I am perpetually impressed by the tenacity and collective strength of this patient community and it gives me even more reason not to see it flounder in underfunded research any longer.
“However you may personally feel about the microbiome, Dr. Lipkin is a world-class researcher of whom, simply, we have far too few in this disease.
“I may not know much about the science, but having research done is an infinitely preferable state of affairs than having no research done. And I do not even suffer from this disease—my daughter does. The urgency to do something now—to lose less time—should hit even closer to home to a patient than to a caregiver like myself.
