Carers of people with ME/CFS

  • Community Moderator

    We've seen a few parents and carers join the forum. Caring for a person with ME/CFS can be life changing! Finding support from people who "just understand" can also be challenging as ME/CFS remaining largely misunderstood, and the stigma attached is still a challenge for many. To all the wonderful carers we would like to recognise that the wonderful support you give is nothing short of amazing!
    WELCOME the Emerge Australia community

  • @Daffy_Dave said in New discussion category - Caring for people with ME/CFS:

    We've seen a few parents and carers join the forum. As discussions around caring for people with ME/CFS can be a bit different from discussions about having ME/CFS, this discussion category has been set up for parents/carers of people with ME/CFS - many thanks to all of you that do 🙂

    Yes I say Ditto to that! Thank you so much to all of you for what you do for us with ME/CFS. I am sure at times you may feel so helpless as in how to make it all better.... without you beautiful people and your very hard work, us with ME/CFS would be struggling even more. We know this impacts you in such a massive way as well.
    So Thank you.

  • Just wondering if there are any parents caring for a teen/young adult with ME/CFS as well as having the disease themselves? Would love to hear how you are managing.

  • @Daffy_Dave Thanks for introducing this discussion area for carers. There are so many of us out there very isolated and this may bring more of us together for much- needed support and info.

  • Community Moderator

    @Claudia We hope it helps - please don't hesitate to start new threads on topics that you'd like to talk about.

  • just wondering is there anybody caring for someone who i would classify as severe (non verbal, no external stimuli, no touch)?

  • @Lynne Hi Lynne, my daughter is very severe. She is verbal, but only short conversation and often its just a mumbled answer, or nothing at all. I can touch her, but very sensitive and doesnt have the energy or capacity to be washed etc. Noise is a really big issue for her and quite sensitive to light, especially on a bad day, she needs to be in the dark.

  • @msmac My son's girlfriend is just like your daughter. If you would like to chat, please feel free to get in touch.

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