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Image: Getty Images / Archi Banal
Image: Getty Images / Archi Banal

SocietyOctober 25, 2022

If you get long Covid, who’s going to help?

Image: Getty Images / Archi Banal
Image: Getty Images / Archi Banal

Thousands of New Zealanders are having their lives upended by the ongoing effects of Covid-19. And yet government support just isn’t there, writes Tom Harris.

Suppose that you get long Covid – the “long-hauler” type that just doesn’t go away even after months. What support is there for you?

The answer is: not much, and it might be even less soon because the few charity services that take pressure off GPs dealing with long-haulers are at risk due to lack of funding and growing demand.

I have ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a multi-system neuroimmune disease that is similar to long Covid. The support I have found may well be the best model for people with long Covid. But that support needs to be funded.

The registered nurse service provided by community charity MECFS Canterbury is struggling to get adequate funding to support existing needs, let alone surging increases as long Covid adds strain to existing support services.

Our not-for-profit charity (of which I am a board member) currently receives $0 from either the Ministry of Health or Te Whatu Ora (HealthNZ), and instead has to rely on grants and fundraising. This is despite us being one of a few organisations nationwide with medical professionals specialised in providing on the ground support to long-haul sufferers.

Marissa, a member with ME/CFS, says that before receiving support from our nurse “my life was very simply a minimal existence” and that the support service “has had a huge impact on my quality of life”.

The signature long-haul symptom is post-exertional malaise. (Photo: Getty Images/Tina Tiller)

The long Covid / ME link

The signature long-haul symptom is post-exertional malaise, which patient-journalist-advocate Brian Vastag describes as “getting sicker after doing something, almost anything”. The other common symptom is brain fog, which journalist Ed Yong explains as “a disorder of executive function that makes basic cognitive tasks absurdly hard.”

This combination of brain fog, post-exertional malaise and inability to do anything effortful is extremely disabling. For me it meant being able to work only two hours a day and having to move back in and be cared for by my parents. Recently a short walk on the beach left me unable to walk for two days afterwards, and feeling wretched for a week.

Before I got sick I ran up hills and played in high energy dance bands across New Zealand. Now, even watching a fast-paced sitcom overwhelms me. This article took me months to write. So please don’t skip read too fast!

To hammer home how disabling this condition is, consider that international HIV and ME/CFS researcher Nancy Klimas said she would rather have HIV over ME/CFS any day. Imagine feeling lucky that you have HIV.

Persistent long Covid (>6-8 weeks) has increasingly been shown to overlap with ME/CFS, with researcher David Systrom describing them as “frighteningly similar, if not identical”. The three major criteria symptoms of ME/CFS have been found in multiple studies of persistent long Covid: fatigue, reduced daily activity, and post-exertional malaise (both diseases are also known for having many other symptoms that vary between patients).

Both diseases are associated with onset after viral infection, even mild cases, both share physiological issues like cardiac preload failure and abnormal nerves and blood vessels, and there is also preliminary evidence of key genes in common.

Long Covid has been called potentially the biggest disabling event in history, but one that is being widely ignored by governments. While US president Joe Biden has declared the pandemic “over”, many experts and advocates are calling for long Covid to be seen as a parallel, ongoing pandemic.

Why should you care? Because each time you re-catch Covid your chance of getting long Covid increases. And most of us can expect to re-catch Covid plenty of times over the next months and years. Young and fit? You are still very much at risk. This disease affects everyone – children, athletes, rich and poor.

So, suppose that the next time you catch Covid you become a long-hauler, someone who gets sicker after doing something, anything. There are currently no treatments. What support would you expect from the government?

Financially, you can expect the benefit (supported living payment) and not much else. In my case I don’t even qualify for that – working two and a half hours a day as a private tutor makes me ineligible. Currently ME/CFS is not classified as a disability by key services which limits access to benefits and services, although hopefully that may change thanks to a recent petition and reading in parliament, led by national advocacy group ANZMES. ACC does not support chronic health conditions. In comparison, the USA recognises long Covid as a disability under federal law. There are currently no official dedicated on-the-ground long Covid clinics in New Zealand.

While the Ministry of Health recently published excellent guidelines for clinicians to help them better support patients, a short GP appointment isn’t much time to hand you all the tools to deal with your new life of vastly reduced functioning. No wonder many long-haulers feel like they’ve been left to rot.

The new MOH guidelines do mean that GPs can refer patients to allied health professionals such as physios and psychologists. While long-haulers should hypothetically now get access to more support, there are still problems: for one, does the system have the capacity? Dr Bryan Betty the medical director of the College of GPs, is one who has voiced concern for how the current system will cope given that it is already at capacity.

An MOH update from April this year said that “there is currently no additional Covid funding for investigation and treatment of long Covid [in primary care]. It will be funded in the same way as other medical conditions and emergencies”. It is not clear whether the new guidelines mean more funding for long Covid patients, or just more pressure on existing GP referrals to allied health professionals.

Another problem is that long-haulers have extremely limited energy, and in the absence of a dedicated long Covid clinic they will probably benefit most from being treated by a single health professional with good knowledge and experience with ME/CFS, rather than narrow advice from several separate allied professionals.

In my and others’ experience, having a number of long-Covid specialised nurses would be much more sensible and efficient, both for the healthcare system and for patients with very limited energy (and income). For instance, our nurse at MECFS Canterbury is able to advise on pacing, mobility aids, advocacy, welfare access, community support and more, all with understanding of the unique challenges long-haulers face. Because there are no approved medications or clinical treatments for ME/CFS and long Covid, support, education and advice around management of the condition are the best chance to improve people’s outcomes.

In-home care is also much needed. “You don’t need research or a fancy clinic to provide help to patients now,” says long-hauler Lauren, who is part of my ME/CFS support group. “Funding able bodies for housework, cooking, getting around the home, errands… so we can rest … should be a very easy way to provide care now.” Like all long-haulers, Lauren often struggles with completing essential tasks of daily living, “and without that extra help you don’t always have the option to rest, even when you need to”. If ME/CFS was reclassified as a disability this would give access to home care, and reduce the frequency of debilitating relapses, or “crashes”.

Because GPs and allied health professionals are always overwhelmed, charities like MECFS Canterbury can fill a crucial gap in the support of patients with a community based registered nursing service. Our RN service takes the pressure off other professionals, is more affordable to the health system, and more suitable, effective and economically sensible in practical terms than a team of specialists, given a lack of clear treatment options for post-viral syndromes and short appointment times.

Most importantly, it offers real support, right now.

We have seen a big increase in long Covid referrals recently, and are very concerned that demand is much greater than we can cope with at current funding levels from grants and donations. We currently only have charitable funding for 20 hours a week for our registered nurse.

We are incredibly grateful to our funders, however due to Covid and economic pressures on availability of grants, our service is under pressure and unable to grow to meet the increased demand – in fact our nurse is swamped and we need to increase our nursing hours to 40 hours minimum even to meet existing demand.

But despite the size of the long Covid health crisis, not to mention an estimated 25,000 New Zealanders with ME/CFS, we receive nothing from the Ministry of Health. Something has to change. Why? Because this is a huge problem not just for individuals affected, but for families, communities and the economy.

Almost one in 10 Americans are estimated to experience some post-Covid symptoms (Image: Tina Tiller)

The hidden cost of long Covid

While most people with long Covid recover over three to six months, for those who don’t the symptoms are  devastating, and continue seemingly indefinitely at this stage

Nearly one in five Americans who have had Covid still had long Covid symptoms in June this year – that’s one in 10 people in America!  The cost at a societal level is huge – for instance a UK study showed that long Covid is shrinking the workforce, and another found it was responsible for about a third of unfilled jobs in the U.S.

That’s right – the Covid-era trends of the “Great Resignation” and “quiet quitting” may be partly accounted for by long Covid. This aligns with a huge reported rise in the UK in workers shifting from full-time to part-time and an increase in the number of people outside the labour force with a disability.

The cost to the NZ economy is potentially huge. According to ANZMES, the loss to each family with ME/CFS is around $35-45,000 per year (although this seems like a big under-estimation). With 25,000 sufferers, that totals around $1bn every year. That is before we even include Covid-induced ME/CFS.

How much is long Covid costing us? I’m not aware of a New Zealand estimate (over to you Statistics New Zealand?) so here’s my back of-the-envelope guesstimate:

There are approximately 2.8 million New Zealanders in the workforce according to Stats NZ. If 70% (a conservative estimate) of the population catch Covid (with or without symptoms), then 70% of those 2.8 million = 1.96m workers (people of working age are most at risk)

Long Covid affects an estimated 10-50% of people who catch Covid (it varies between studies), so that means 196-980,000 NZ workers.

Most will recover after a few months. But even if we take an average of the long Covid rate of 30% (580,000 workers) for the shortest illness duration of two months, times the average two-monthly NZ wage ($9332), we arrive at a loss of $5.4 billion.

However a massive new study published in Nature of 150,000 US veterans with Covid found that a disturbing 7 out of every 100 people still had neurological issues 12 months after catching Covid (although the sample probably actually underestimates the problem since it consisted of mostly white males, whereas women and other ethnicities are more vulnerable to long Covid). So the ongoing burden to individuals and the economy is much, much higher.

Needless to say, the burden will fall greater on groups already experiencing health inequities – Māori, Pasifika and people with existing disabilities.

A quick side note: Persistent long Covid actually takes many other forms besides ME/CFS (the focus of this article) including stroke, specific cognition and memory disorders, peripheral nervous system disorder, migraine and seizures, movement disorders, mental health disorders, musculoskeletal disorders and sensory disorders.

To reiterate: 7 out of 100 people experienced these neurological issues even a year after catching Covid. Young people were actually more at risk, and the authors stressed that “the effects of these disorders on younger lives are profound and cannot be overstated”.

According to researcher David Putrino, the largest group of long-haulers may be those whose brain fog has improved but not vanished, and who can “maintain a relatively normal life, but only after making serious accommodations”.

Many people with milder symptoms may not even know they have long Covid, downplay it to avoid stigma, or have symptoms dismissed by doctors. While this group is harder to measure and comparatively less vulnerable, it also highlights how much of an ongoing society-wide problem this is.

Long-haulers need the support that a registered nurse service offers, and they need it yesterday.

And we know it works – according to one of our members, “the nurse was instrumental in my situation completely changing for the better”.

Stop. Rest. Pace yourself.

While there is no treatment currently for ME/CFS or persistent long Covid, illness management makes a huge difference. Support in the form of symptom management and hard-won strategies of other long-haulers is crucial, as it can prevent permanent worsening of illness, encourage gradual recovery where possible, and validate the experiences of those struggling with these often misunderstood illnesses.

A majority of researchers agree that early intervention can change the course of post-viral syndrome – diseases like long Covid or ME/CFS. Decades of lived experience of ME/CFS and the work of experts such as the US-based Workwell Foundation has resulted in detailed protocols (and video explainers) on how best to manage symptoms. Workwell’s expertise was incorporated into WHO’s recent guidelines for post-Covid care.

According to Ed Yong, the US journalist who was awarded a Pulitzer Prize for his reporting on Covd-19, the single most important advice he’s received from experts on long Covid is “You. Have. To. Pace. Yourself.”

This sounds simple, but it is not always what patients are told, and requires reinforcement (doing nothing is much harder than it sounds). As one of our members with ME/CFS says, “I could have benefited greatly if I had been diagnosed 10 years ago and I had known not to exercise.”

Again, an adequately funded community based registered nurse service would be highly effective at teaching and supporting these best practices.

Another way of receiving support is through online groups. MECFS Canterbury has a Facebook group which anyone is welcome to join. There are also a national group and other regional groups. From my own experience, the long-hauler communities are some of the kindest, most compassionate groups that you will find online – the silver lining of suffering is compassion.

But beyond support groups, having someone in the system such as an experienced nurse specialised in managing these conditions and prepared to advocate for the patient makes a world of difference, as well as sharing the burden of GPs and the wider health system.

When I recently used the MECFS Canterbury nurse service it was the first time in eight years of post-viral illness that I spoke with a medical professional fluent in its management. While I have had several very good GPs, the quirks of these illnesses benefit immensely from familiarity and expertise.

It is said that a healthy person has a thousand wishes, and a sick person only has one. Let’s give long-haulers the support we have shown to people with HIV, multiple sclerosis and cancer. HIV for instance has benefited from years of funding and research, making it a manageable illness today.

ME/CFS is considered one of the most under-researched medical conditions. Because post-viral illnesses have been neglected by funders for decades, long Covid and ME/CFS remain devastating illnesses.

Post-viral syndromes like ME/CFS are finally getting the attention they deserve due to long Covid’s worldwide burden, and new emerging global research (including in New Zealand) is igniting hope.

But we need to ensure that those most in need get the basic support they need when they need it – and they need it now.

Thanks to Rose Camp, Nicola Stokes, Ben Harris and Jane Cowan-Harris for your help in writing this article, and all the long haulers who continue to share their stories and lived experience.

You can donate to MECFS Canterbury to help fund its community nurse service at its Givealittle page.
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