As sufferers and supporters of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome present a petition to Parliament asking to reclassify the condition from a chronic illness to a disability, Warren Tate explains why this needs to happen now - especially given the effects of Long Covid.
Comment: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating and, for most of those affected, lifelong disease that does not allow them to be in employment or participate in community activities other than in a very restricted manner.
The Ministry of Health Disability survey of 2013 defined disability as “any self-perceived limitation in activity resulting from a long-term condition or health problem lasting or expected to last six months or more and not completely eliminated by an assistive device”. ME/CFS certainly fits that definition.
A chronic condition by contrast is persistent and long-lasting in its effects or a disease that comes on with time, and includes diseases like diabetes, cancer, arthritis, asthma. These diseases are not necessarily through their course limiting for employment or community participation like ME/CFS.
A petition by Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) to reclassify ME/CFS to a disability - which has garnered 6444 signatures – is being read in Parliament today.
According to ANZMES, increasing numbers of people with Long Covid are being diagnosed with ME/CFS and the existing support through non-profit organisations is set to become unmanageable.
Despite this, the Ministry of Health says it is not currently looking into reclassifying ME/CFS.
The disability with ME/CFS arises from the core symptoms of severe pervasive fatigue, cognitive dysfunction, post exertional malaise (relapse after any exertion), pain, among many others. Classifying ME/CFS as a chronic condition understates hugely the debilitating effects of the post-viral/severe stressor syndrome.
It has had the unfortunate effect of making access to financial and social support services difficult for this vulnerable group. They endured, for example, seven-minute consultations with a designated doctor that overturned disability allowances by declaring ME/CFS patients fit for full-time work, despite their ongoing history of inability to work from their debilitating symptoms often of many years in duration.
It is well established that viral infections can lead to debilitating post-viral syndromes that can be much worse than the original infection and, devastatingly, can be life-long. The 75 reports of such outbreak infections leading to these syndromes since the 1930s have been generally geographically isolated or endemic at a relatively low level and thereby have involved onset of a post viral-syndrome in a relatively small number of people at any one point in time.
While invoking curiosity, these conditions have not received widespread attention or impetus to understand their destructive nature. New Zealand had Tapanui Flu back in 1984, affecting 100 or so people that is now in our medical folklore.
In 1955, London had an outbreak at the Royal Free Hospital that was given the name Myalgic Encephalomyelitis (ME), and in Incline Village, Nevada, a strange fatigue illness affecting hundreds of people in the village was called Chronic Fatigue Syndrome (CFS).
It was only five years ago that the composite name of ME/CFS has been used to describe the collective of these ongoing diseases.
Although involving small numbers of people having onset of the condition at any one time, the cumulative effect, because of the ongoing nature of the conditions, has meant today there is a global burden of 40 million people with ME/CFS, and an estimated 25,000-45,000 affected in New Zealand.
Globally they have been referred to as the ‘missing millions’ as their plight has largely been hidden or ignored. Those affected have not had close attention medically, or socially, and no effective therapies are yet available to ameliorate their distressing symptoms.
New Zealand has been no exception. Although most of those affected are too incapacitated with their diverse symptoms to be able to work, access to financial support and social services have been limited.
Perhaps the compelling need to reclassify ME/CFS as a disability is best expressed by Welsh poet and ME sufferer Ffion (with permission):
To all my dear ME friends
Crushed ...And "crashed"...
By medical appointments ...
Enervated ...Exhausted ...
I've had my fill ..
"M.E.? Incredibly disabling" ...
Sajid Javid* said ...Yes ..
For me, there's nothing more life-draining ...
Than being disabled and chronically ill ....
* Sajid Javid, recent British Secretary of State for Health and Social Care, a staunch advocate for people with M.E.
In the United States a 2015 report was a first turning point for ME/CFS recognition for their 2 million sufferers. A major Academy of Medicine investigation concluded ME/CFS was a serious illness, and that patients had not been receiving proper medical care or social support.
By 2019 the US senate passed a bill declaring ME/CFS to be a serious illness and promising investment and social support. And then came the Covid-19 pandemic with its over 600 million viral infections to date. From the size of the pandemic it has resulted uniquely in the onset at the same time of many millions of people worldwide with a post-viral disease syndrome, called Long Covid.
The global medical community and governments alike have been confronted in a way that none of the other boutique ME/CFS post-viral syndromes achieved. With New Zealand infections approaching half of our population, Long Covid could affect hundreds of thousands projecting from world figures to add to the burden of ME/CFS.
We have the opportunity now to ensure these affected people get appropriate recognition of their post-viral conditions with umbrella support structures, but also it is an opportunity to redress the neglect of the community of ME/CFS with national strategies that acknowledge the disabling nature of these post-viral diseases.
These strategies should involve appropriate best evidence-based teaching in our medical schools, and universal advice to clinicians throughout the country of the best practice treatment strategies so affected patients get consistent treatment and understanding from all clinicians.
A great start would be the reclassification of ME/CFS from a chronic condition to a disability as requested by ANZMES in its petition to the Government.
