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Fantastic letter sent to microbe discovery project from a mother

Discussion in 'General ME/CFS News' started by aimossy, Aug 14, 2014.

  1. aimossy

    aimossy Senior Member

    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 SimonNo 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

    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.
    merylg, DanME, Gingergrrl and 7 others like this.
  2. goldberg


    So moving and so true....
    aimossy likes this.
  3. Daffodil

    Daffodil Senior Member

    I heard someone sent this sort of letter to Lipkin and he actually phoned them!
    aimossy, goldberg and Sasha like this.
  4. Daffodil

    Daffodil Senior Member

    lipkin is trying to help....i used to hear his team was testing ticks and there is the microbiome study.....but with the ebola situation, one has to wonder if we aren't on the (way) back burner now
  5. Snowdrop

    Snowdrop Rebel without a biscuit

    "I only wish for research to be done in ME and for it to be done now, period."

    I'm sure that we all appreciate this sentiment.
    What do we want: research
    When do we want it: NOW

    However, for myself I would like to add that it should not be too much to ask for research to be focussed on the physiological cause and treatment even as we plead for some research, any research to happen for ME.

    The whole point is that all of us are suffering (along with caregivers and family), many are deteriorating NOW. The time for 'talking us out of illness' has long past.

    No more diversion of funding to something that belongs more appropriately in the history of corporal punishment of the ill.
    Little Bluestem and Valentijn like this.
  6. Bob


    England (south coast)
    Yep, his team has been out hunting for, and gathering, ticks. They've now carried out a study to see what pathogens the ticks carry (including looking for unexpected/new pathogens.) And now they are in the process of testing Lyme patients to see if they've been co-infected with any of the new pathogens. (So these are existing Lyme patients, and he's seeing if they've been co-infected with more than the one tick-borne pathogen.)

    BTW, Dr Lipkin has a team of 60, and I imagine that the vast majority of them are not working on Ebola.
    Last edited: Aug 15, 2014
    merylg, SB_1108, Valentijn and 2 others like this.
  7. Daffodil

    Daffodil Senior Member

    Thanks a lot for that info, Bob.

    I was reading a little about Gulf War Illness and it looks like that could be a vaccine injury..they were given a vaccine to help protect against nerve agents.

    All of these diseases look like they are turning out to be autoimmune, but no one can find the auto-antigen!
    Bob likes this.
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Yes, I think it is understood that what we want is real research, not psychoblundering.

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