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Should chronic fatigue syndrome be classified as a disability? – Expert Reaction

petition to reclassify myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a disability is expected to be read at Parliament tomorrow.

25,000 New Zealanders are thought to suffer from this poorly understood yet debilitating disease, which can have similar symptoms to long Covid, like fatigue and brain fog.

The SMC asked experts to comment on ME/CFS, and how our welfare system works for people with long-term or disabling conditions.

Emeritus Professor Warren Tate, Department of Biochemistry, University of Otago, comments:

“ME/CFS is a debilitating disease arising from a severe stress event like a viral infection in susceptible people that is ongoing and lifelong for the large majority of those affected.

“In the acute phase, which can last for several years, the affected person is house bound and some are even bedbound. Of the estimated up to 45,000 people affected in New Zealand with ME/CFS 25% remain in this severely affected state. Many of these require significant help both socially and financially. But ME/CFS being listed as a chronic illness and not a disability means it is very difficult for them to get adequate access to social services and financial support. When compulsory assessments were instituted for disability allowances by Work and Income with a designated doctor, ME/CFS patients who had been restricted with severe disease for many years were pronounced fit for fulltime work after just a 7 minute consultation.

“Those with ME/CFS who move to a chronic phase (~75%) live fragile lives with frequent relapses and are most are not able to work, but they can have limited interactions with their communities. They still need financial support, and sometimes support from social services. Reclassifying ME/CFS as a disability rather than a chronic illness will give due recognition to ME/CFS as a serious disabling illness.

“The need is perhaps best expressed by a recent poignant poem from Ffion, a Welsh poet whose life is highly affected by ME (reproduced with permission).”

To All My Dear M.E. Friends 
by Ffion

Life blighted by worsening Dysautonomia …
A life lived …At home …Couldn’t be more  … Well …Home-ier …😐
I was always a Life-livin’  Life-lovin’ Girl …
Now, doctors’ appointments …Are my “social whirl” 😳…
Disability fells …In the wink of an eye …
We blink …And catch sight of …Life …Passing us by 😢 ….

Conflict of interest statement: “I have been part of an ME/CFS family for over 30 years, and a researcher of the illness for the last 10 years. I have observed these problems of lack of medical, social and financial support, not only from my own family experience, but from extensive contact with patients and their histories particularly since the start of the pandemic.”

Dr Tanisha Jowsey, Senior Lecturer in Medical Education, Centre for Medical and Health Sciences Education, University of Auckland, comments:

“There are three key terms that need consideration here: chronic illness, impairment, and disability. Chronic illness requires management in the long term. Impairment is the loss of function (in this case, caused by chronic illness). Disability is the experience of that impairment. Not everyone who has chronic illness will identify as a person living with chronic illness. But increasingly, over time people’s experiences of chronic illness can increase and become so significant that they are disabled by the illness. Impairment is the main thing that financial support policies assess. The reclassification of ME/CFS as a disability would be functionally significant in terms of the Ministry of Health’s policies because it would recognise patient experiences.

“ME/CFS is significantly under-diagnosed and this is more a reflection of inequity in healthcare than ME/CFS prevalence. Healthcare professionals and policy makers are well aware of the (seemingly endless) red-tape that patients must somehow navigate and overcome despite their illnesses and disabilities. People do not seek support because they are trying to get an easy dollar out of the system. They do it because living with chronic illnesses and experiencing disability is hard. It is hard most days and in ways that those of us who are lucky enough to be well and living without disability will not fully comprehend. It is stressful and exhausting. In the case of ME/CFS, the symptoms can make it impossible for some people to keep a job or function in ways they previously did. ME/CFS can totally disrupt a person’s sense of identity and the future their imagined for themselves.

“It seems to me that the petition to reclassify ME/CFS as a disability is a no-brainer for a compassionate and equity-focused society. New Zealand should make the change, and by so doing, enable people living with ME/CFS to get the support that they need to increase their daily quality of life. Ideally, making this change should be coupled with increased awareness to doctors of ME/CFS so that correct and early diagnosis can be increased.”

No conflict of interest declared.

Kate Waterworth, Lecturer, School of Clinical Sciences, Auckland University of Technology, comments:

“New Zealanders with long-term or disabling conditions often experience significant challenges navigating our complex health and disability system.

“There are significant inequities in terms of supports or accommodations available to people or their whānau depending on where they live in New Zealand; whether that is an urban, rural or remote location, and whether the condition is considered the consequence of an ‘accident’ and therefore qualifies for ACC or not, and if not, whether it is considered a personal health condition or a long term ‘disability’.

“The Ministry of Health has defined/ understood disability as: a physical, intellectual or sensory impairment (or combination) that is likely to last more than six months and ‘needs ongoing support to live independently, to the extent that ongoing support is required.’ I believe this petition hopes to provide those with ME/CFS better access to disability support services – now managed by Whaikaha, the new Ministry for Disabled People.

“I would hope that attention to this issue also encourages discussion on improving experiences of healthcare for those with ME/CFS. Historically the medical profession has paid limited attention to conditions such as ME/ CFS which often have a complex presentation that can be difficult to categorise and diagnose in a black and white manner. If we look at healthcare practice in this area, people who experience ME/CFS often have poor experiences of seeking and using healthcare – they highlight issues such as being misunderstood or dismissed by practitioners and significant challenges accessing support. Our health system response to people who experience long covid or related conditions needs to take these lessons around into account otherwise we risk repeating similar mistakes.”

No conflict of interest declared.