CFS treatment options

We have little to no treatment options for CFS/ME patients in this country. There are a lot of treatments offered in other countries that are not offered here. This syndrome affects a lot of people and is basically ignored. There are no funded supports available other than walking frames and mobility supports if needed. There is potential for recovery, but our health system doesn't support or recognise this. This is a severe, chronic illness that can lead to devastating deterioration, it's about time patients with this disease were treated fairly and offered care, treatment and support in line with other severe illnesses and conditions. 

Why the contribution is important

Proper care could potentially save lives, ease the burden on the welfare and health care sectors, and give people quality of life and potentially recovery from illness. It would benefit families and communities by allowing CFS sufferers the ability to parent well, to work, to be involved and to live their lives instead of just existing. 

by Mschief118 on March 24, 2023 at 01:36PM

Current Rating

Average rating: 4.8
Based on: 12 votes

Comments

  • Posted by Maree March 28, 2023 at 18:22

    I agree that people with CFS (better referred to as ME/CFS) desperately need treatment options. This is a debilitating disease, and a substantial number of people are meeting ME/CFS diagnostic criteria after Covid-19 infections.

    However, it should be noted that there are currently no treatments for the underlying disease that are supported by evidence. Yes, an empathetic doctor can help people get support to cope with and adapt to the consequences of their illness. Assistance can be given with applying for financial support; pain relief can be prescribed.

    But suggestions that ME/CFS can be cured are not correct. Much harm can be done by people who misguidedly and enthusiastically propose various treatments that have no evidence to support them. What is needed most is research to understand the causes of post-infection fatigue syndromes. And, until then, we need a medical system that provides supportive care.

  • Posted by vision4ME April 12, 2023 at 14:45

    I agree that people with ME/CFS in NZ encounter difficulties accessing treatment options. These difficulties fall into two quite separate categories.

    1) A number of symptomatic treatments exist which can reduce the burden of specific symptoms, for example there are a number of drugs to help with orthostatic intolerance, a common ME/CFS symptom. These drugs are available in NZ and can be prescribed.

    However, many patients find their doctors are unaware of them and/or reluctant to prescribe because they feel uncertain about a patient's diagnosis and/or the appropriateness of various treatment strategies, largely because NZ doctors haven't received relevant up-to-date education on ME/CFS.

    This effectively - but unnecessarily - leaves many patients with "little to no treatment options" as pointed out by Mschief118.

    My 'idea' titled "National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses" would help overcome this problem.

    2) A different matter is experimental treatments offered in some places overseas. For this, I refer to the excellent comment by Maree above.

    More and better research has to be the answer here but, understandably, patients who have been very ill for years or decades are running out of patience.

    A case can be made for NZ researchers to be funded - something that has been so badly lacking to date as to be insulting - to undertake more ME/CFS research both into the underlying causes and into promising treatment options, possibly in conjunction with international groups. This would allow more NZ ME/CFS patients to participate in research and in some cases to access experimental drugs as part of research. Participation in research can generate genuine hope and a sense of meaningful contribution, unlike the desperate roller-coaster ride of false hope from always chasing the latest anecdotal recovery story.

  • Posted by kstruwig April 14, 2023 at 22:19

    From experience, not a lot of doctors are even aware of ME/CFS. How can they even begin to look into treatment options for their patients if they cant diagnose them because they’re not aware of the condition. So firstly I’d be looking into awareness, the more doctors that know, the better.
    Then I’d be looking into a protocol of some sort, one that’s reviewed regularly. A guideline for doctors and patients to follow to help the patients receive fair, up to date treatment, and so that patients don’t feel they have to advocate for themselves constantly. The protocol could include tests/conditions to eliminate before diagnosing, treatments proven to help for certain symptoms as there’s no cure for ME/CFS so symptom elevation is all that can be done for now.
    From there doctors and patients will be able to move forward with a plan on addressing symptoms and may provide some comfort to patients by avoiding a lot of the common trauma a lot of ME/CFS patients suffer having to advocate for themselves.
    I hope this made sense, I am suffer from ME/CFS and brain fog gets the best of me.

  • Posted by hesterbox April 17, 2023 at 13:20

    Most things that help my ME symptoms are not funded and I have to pay for them myself.
    This is a burden for people who are mostly unable to be in the workforce.
    We need recognised treatments that are funded.
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