Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Queensland, Australia study in patients meeting alternative definitions for cfs -disability-M.E.

Discussion in 'Latest ME/CFS Research' started by Goodness to M.E., Jul 18, 2014.

  1. Goodness to M.E.

    Goodness to M.E. Senior Member

    Messages:
    100
    Likes:
    155
    Adelaide
    Study:
    http://www.hqlo.com/content/12/1/64

    WHODAS 2.0 (Disability Assessment Schedule 2.0 - 36 item questionnaire - self assessment)
    http://www.who.int/classifications/icf/WHODAS2.0_36itemsSELF.pdf?ua=1

    I found the above one of the most latest, helpful and current insights into this dis-ease, diagnosis and separating CFS from M.E.
    It is also interesting regarding women with M.E. and the severity and wonder if this is because of the traditional roles women play in employment through, health, welfare, education and public service delivery etc. and wonder if women are more susceptible because of their greater exposure to the public?

    Looking forward to your views!
     
  2. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    I looked at the chart and I found it difficult to read because of my cognitive issues. It's very hard for me to track across the page and by the time I find the boxes with the answers I forgot the question! LOL

    The longer I look at it the more my brain starts to go nuts.
     
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,843
    WA, USA
    Last edited: Jul 18, 2014
    Simon and Jerry S like this.
  4. Goodness to M.E.

    Goodness to M.E. Senior Member

    Messages:
    100
    Likes:
    155
    Adelaide
    I understand exactly what you mean, most of these type of things requires several days to plod through, complete and absorb.

    Same with reading books, takes me months to read a book because I need to keep reading the same page several times to follow the tread! It has taken me several years to work out how to manage the complexities of M.E. symptoms in order not to significantly regress in my capabilities.

    The only strategy I have found useful is the micro-management of the basic tasks that allow me a level of independence is to list only priorities that I need doing, note and step-out on a weekly calendar with big gaps for total rest either side of appointments including basic food/household shopping.

    Most of my time is spend resting and being mostly housebound outside of these 2 main functions.

    The other aspect that has helped me enormously is to accept there is no cure or magic bullet, I have stopped wasting energy searching for such or getting frustrated with the 'system' as we have no M.E. specialists in Adelaide and focus my limited energy on this process.

    Things like showering are done on a stool twice a week and nothing else is achieved or undertaken on these days except rest.

    I only cook my evening meals twice a week and make enough for several days. Breakfast is usually simple as is lunch. Toasted or not toasted sandwiches with clean foods or porridge with dried fruit and LSA, these foods work for me others dont.

    I have had a massive amount of tests done over the 2 years and taken a massive amount of supplements and compound products with little benefit and unable to take pharmaceutical drugs very often because of chemical sensitivities. Sufficient night sleep eludes me and nothing has worked so I just rest at these times and accept it.

    Now I only take basic vitamin/mineral supplement and have found the above strategies is what gives me the best level of continuity in managing my symptoms on a day to day basis.

    Acceptance and gratitude for what I can do and for the little support I receive is what I focus on when resting.

    Take care, stay brave and be your own 'personal carer of kindness' when the tougher days present.
     
    Last edited: Jul 18, 2014

See more popular forum discussions.

Share This Page