recognise CFS as a DISABILITY

Chronic fatigue syndrome is one of the most debilitating disabilities out there yet the nz government refuses to acknowledge it as a disability. By recognising it as a disability it ensures that 20,000 people are getting the supports they need. 

Why the contribution is important

Many people with CFS will work full time before the diagnosis and then after the diagnosis/ a flare up, they have to reduce their hours and their pay, making life 10 times mote stressful (and cfs flare ups can be caused by stress)

 

allowing 20,000 the supports they need, it allows them to live a life that's more independent while also working with and alongside their limitations. 

by kaiadlv33 on March 22, 2023 at 09:08AM

Current Rating

Average rating: 5.0
Based on: 13 votes

Comments

  • Posted by Mschief118 March 24, 2023 at 13:22

    It isn't just the flare ups either, I have had glandular fever/Epstein Barr for 2 years which has been incredibly tough. No help or support available and I just have to keep going. There are many people with CFS who are vulnerable to other illnesses, particularly viruses and gastrointestinal problems which are debilitating. Without the opportunity to rest and recover the disease progress to a point where they become bed ridden and have to be tube fed. There needs to be not just recognition of the disease, but the severity and possible long term repercussion of not being given proper health care and support.

  • Posted by AceTimelord March 24, 2023 at 15:18

    Yes. Agree with all of this.
    In general, stop the lottery of what causes a disability determining what care and support you get.
    What people get should be based on what they need.
    At the moment, three people could have the exact same ability to do stuff, and the exact same support needs, and they will have three very different levels of care, which is rediculous.
    If it is a chronic illness like CFS, then basically nothing.
    If it is a disability that is recognised, then some care, and access to support funding, benefit, etc.
    If it is an injury, then lots of support, and equipment, etc, through ACC.
    It's so silly, and wrong, and just disgusting. It also makes no sense at all.

  • Posted by vision4ME April 12, 2023 at 16:25

    In an ideal world the call by kaiadlv33 for ME/CFS to be classified as a disability would be unnecessary because all support would be provided on the basis of need, irrespective of the cause of the disability. AceTimelord sums it up well.

    In real life, however, people with ME/CFS frequently do not get the support they need and deserve, partly because needs assessors don't understand the nature and severity of ME/CFS disability.
    A reclassification as disability would send a crystal clear message that ME/CFS really is disabling and affected people must be supported accordingly. A reclassification would be a pragmatic step towards improving the quality of life of people with ME/CFS.

    ANZMES has submitted a petition to this effect to Parliament and the petition is currently with the Health Committee. The Ministry of Health has commented on the petition - and demonstrated that the MoH lives in a hypothetical world of equal, needs-based access to support.

    Quote from the MoH: "The health system does not require conditions to be classified as a disability for people to access services. Within the health system, access to health services is based on clinical need and capacity to benefit."

    This bears little resemblance to the lived experience of people with ME/CFS.

    MoH, please have another look at the real picture on the ground - and then reconsider your stance.

    The source for the quote and all other documents relating to ANZMES' petition can be downloaded from the Parliament website. I will try to link to the petition below for anyone interested but in case links are not allowed you can try searching the Parliament website for "Petition of Associated Myalgic Encephalomyelitis Society Incorporated : Reclassification of ME/CFS to disability". The petition number is 125649.
    https://www.parliament.nz/[…]/all?custom=PET_125649

  • Posted by hesterbox April 17, 2023 at 13:18

    ME restricts my life. I have to choose every day what I can do with the limited energy I have.
    There are so many things I don’t do because I don’t have enough energy.
    I can only walk around the corner to the local shop and back, on a good day.
    Socialising is exhausting.
    I don’t go out much. It’s too tiring.
    As well as this I have varying degrees of muscle pain, digestive disturbances, heart irregularity and brain fog.
    This disables me. I am not able to function in society as I would wish. I am always in need of help,to keep up with routine daily tasks.
    It is insulting that we with ME are not recognised as disabled.

  • Posted by Manz April 27, 2023 at 10:43

    This is a significantly disabling condition - and as well as the devastating and life-changing impact for the person with CFS, this disability impacts families as the person with the CFS disability is often too unwell to work. This has further impact on the CFS-disabled person's wellbeing as the family's financial health is also impacted; meaning less available money for medical appointments. Not to mention because CFS isn't recognised as a disability those with CFS are often marginalised - too unwell to socialise with a disability too misunderstood for many to understand. We can and must do better.
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