Hi from Bill

  • Hello, I’m Bill, a parent and carer. My 31 year old son has had MECFS since 16/17 years old, or 14-15 years. He is mostly housebound. Cannot work or study. We do what we can to help out, while trying to help out only when he asks. The most uplifting thing is to see how he and so many others keep their spirits up, in the face of such challenges. Still, as a parent it’s terrible to witness, and so sad and frustrating to experience second hand the isolation, lost opportunities, social and official stigma, medical and official ignorance. Although there are some absolutely wonderful and caring doctors and health professionals who try so hard to make a difference. How can the Australian medical authorities sit by and not update the 20 year old Australian clinical guidance, which is now outdated, wrong and harmful? How come the Doctors are not educated and
    up to date about MECFS? Tens and tens of thousands of Australians are suffering and in serious need, and so little seems to be done. The USA and UK are updating their clinical guidance and educating doctors. Why can’t we? Thanks to Emerge Australia for doing so much to change all that. It brings tears to me when I feel the care and commitment of Emerge and others to bring hope and help. Thank you for starting this up, Bill

  • Community Moderator

    @Bill hi bill, hope and help is a lovely way to put it. Its also uplifting for those of us with ME/CFS to hear from such caring and understanding loved ones.

  • Hi, Bill, please to meet you!

  • Hi @Bill, I too am a parent of a young adult with ME/CFS (20 year old daughter) and someone that has been living with the disease myself for 15 years. It's heartbreaking watching your child live with a disease that is so misunderstand and comes with so little support. I too mourn what she is missing out on in life.

  • Amen Bill.
    You've expressed the situation superbly.

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