1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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You and M.E. Together - a Carer's Story

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 30, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
    ahimsa, Sparrowhawk, Nielk and 6 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thank you Charlotte, you are an inspiration. That was beautiful. It is so encouraging to hear the voice of someone who is committed to support a loved one, no matter what.

    You are a hero too. :thumbsup:

    Best wishes to you all,
    Sushi
  3. Sasha

    Sasha Fine, thank you

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    Excellent article, Charlotte - very moving and insightful.

    You're right about the poor public - they can't help what they're fed via the media. We've really got a public relations job on our hands.
    ahimsa, CharlieGirl and beaker like this.
  4. Judy R

    Judy R

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    Charlotte, I so understand your journey. I am the care giver for our son who came down with ME/ CFS after having mono in the Fall of 2005. I have found the besides family and friends, doctors that understand the disease are hard to find. I cannot tell you how many we have seen that have treated us so poorly that we have left their office in tears and depression! That is such a setback for someone so ill and their caregiver:( We have searched for answers for years. We will continue, but I no longer allow anyone to talk down to us. I just cannot allow it, it is so devastating to both our health.
  5. Kina

    Kina Moderation Team Lead

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    Fantastic article, Charlotte. :)

    Beautiful words!

    CharlieGirl, beaker and Sushi like this.
  6. concepcion

    concepcion

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    Thanks so much for sharing your story Charlotte. As a carer for my 22 year-old daughter my hat's off to you for being able to articulate this life and love you and your family have, with challenges unrecognised by so many. I cannot imagine how you and your husband cope with everything while raising an infant, who can bring so much joy but requires so much work!
    Valentijn, beaker and Firestormm like this.
  7. CharlieGirl

    CharlieGirl

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    Thank you Judy. I am so sorry to hear you have struggled to get the help you and your son deserve from the doctors. Unfortunately it's a common problem for people with ME/CFS we too have experienced some some very negative reactions when all we want is to be heard and taken seriously. It sounds like your doing a fantastic job looking out for your son and standing up for yourself, I know how hard that can be. Hang in there!
    Valentijn and beaker like this.
  8. CharlieGirl

    CharlieGirl

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    Thank you for your kind message, I was very anxious as this is my first attempt at an article but I have had some lovely messages. I can only imagine how difficult it is for you looking after your daughter. Since having our daughter Joel and I often wonder how parents cope, it is so difficult to see your child suffer even with normal day to day illness let alone something like ME. I'm sure you give each other a lot of love and support. I believe struggles like this sometimes bind us closer together.
  9. beaker

    beaker CFS/ME 1986

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    Your husband is very lucky to have you.
    Firestormm, Valentijn and snowathlete like this.
  10. CharlieGirl

    CharlieGirl

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    Thank you. I think we are very lucky to have each other!
    beaker likes this.
  11. Shell

    Shell Senior Member

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    Nice one Charlotte. Thank you.
    CharlieGirl likes this.
  12. Simon

    Simon

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    Very good article, Charlotte, thank you. I particularly liked this:
    CharlieGirl likes this.
  13. deboruth

    deboruth

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    A sad but eminently readable article. Have you considered trying to publish it elsewhere? Women-oriented magazines?
  14. Erik Johnson

    Erik Johnson Senior Member

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    20/20

    If it were imagination, my imagination could do a lot more fun things than this.
    -Chris Guthrie aka "Snow White" formerly of Disneyland
    CharlieGirl likes this.
  15. concepcion

    concepcion

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    I have always loved and admired my daughter as she is both "mine" and so different from me. She has always had strengths I don't have, and I've been amazed throughout our lives how this other human, who has been in my life all these years, can teach me so much. However, this illness has brought us together in a way I could never have imagined. We have found a shared humanity in this hole, giving me strength and joy and an intimate connection with her. And I know it is so important to her too, especially given how isolating this illness is. This epidermis of ours separates us in more ways than we realise, but a shared struggle forces us to reveal much more of ourselves. This is a beautiful thing.
    CharlieGirl and Mark like this.
  16. CharlieGirl

    CharlieGirl

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    Thank you. I haven't thought of sending this anywhere else. In honesty I was very anxious about it as it is my first article, my husband convinced me send it in. Phoenix Rising has been a fantastic help to us. Reading other people's stories and articles has helped us come to terms with his illness and feel less alone. so I thought maybe someone out there might want to read ours. I am completely amazed at all the lovely messages!
    Firestormm, Valentijn and Sasha like this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Charlotte, Thank you for supporting your husband and sticking by him. That is all too rare and is heroic imo. Good luck.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree that it is the scum who knowingly deceive other doctors about ME who are to blame (and, to a lesser extent the bodies that should be looking into the deception such as journals and physician associations) ,not the laypeople or even really general practitioners who are relying on the supposed experts to tell them the truth.

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