Carers Corner - Welcome to the Carers Corner! This thread is a special place for carers of people with ME/CFS to connect with other carers. Feel free to have general chit chat with other carers in the Carers Corner..

  • 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

  • This article that I discovered on the Open Medicine Foundation fb page is great for carers who are caring for people with sever ME/CFS. 'Caring for the Patient with Severe or Very Severe Myalgic
    Encephalomyelitis/Chronic Fatigue Syndrome'
    Jose G. Montoya 1
    , Theresa G. Dowell 2
    , Amy E. Mooney 3
    , Mary E. Dimmock 4,* and Lily Chu 5
    Unfortunately my tech skills come to an abrupt halt when trying to attach or link something in this forum! I have forwarded this article on to all of my sons health 'team' hoping they will read and digest it.

  • Thank you for sharing @Lynne. I'm sure others will benefit from reading them as well.
    I have attached the articles you mention above here.
    A comprehensive Examination of severely ill ME-CFS patients.pdf
    Caring for the Patient with Severe or Very Severe ME-CFS (2).pdf

  • After months of organising, phone calls , writing, form filling and tears of frustration we had first meeting with support coordinator yesterday! At last we feel like we will get some help to support us supporting our adult son with Very Severe ME/CFS. It made me wonder just how do people suffering with ME/CFS manage to access this help without crashing.

  • @Lynne how wonderful to hear your news! What a massive step forward for you all and what a relief it must be to finally see the benefit of all the hard work you've all put in. It has been a might effort and hopefully now you will start getting the support you all need. Congratulations!

  • @Lynne So glad to hear this news! A lovely step forward. 🐝

  • @Dot
    I wanted to share this with the forum community. These are words from a carer of a person who lives with very severe ME/CFS.

    *** shared with consent***
    Carers are really special and such an important part of our community. I hope as a community we can support everyone who is impacted by ME/CFS

    Telehealth Nurse:
    What are some of the biggest challenges you face as a carer of a person with severe ME/CFS?

    Caring for my son is extremely challenging, he is unable to communicate and suffers from extreme noise, light and smell sensitivities. All care for my son needs to be provided in a very low lit room, with minimal or no noise, making sure that all personal care products, cleaning products are fragrance free.

    Another challenge is making sure I can always see the buzzer so I know I will be able to hear if he needs me. Other challenges, knowing that if I make a mistake with his care it will cause consequences that impact his health, not just at that immediate time but can cause a crash that when he does ‘recover’ his baseline health is lower than before.

    More than anything, I find it incredibly stressful having to advocate for him at every step, whether it is with health services or social services (Centrelink etc). It is difficult and challenging as this illness is much misunderstood or maligned. I feel so sorry for people with this condition who don’t have supportive family or friends.

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