How to tackle the Long Covid threat, and how not to

By Patrick Hadfield*

Opinion - There is an illness going around New Zealand causing profound fatigue, brain fog and weakness; it develops after a viral infection; approximately 80 percent of those it strikes are female; and it can upend of the lives of people who get it. What is it?

If you're thinking Long Covid, you'd be right. But you might not be aware this also describes an illness called Myalgic Encephalomyelitis, commonly known as chronic fatigue syndrome (ME/CFS).

Around 20,000 to 40,000 New Zealanders live with ME/CFS.

I would like to share what we have learned from ME/CFS, as I believe a lot could help people who are battling long Covid.

Comparing Long Covid and ME/CFS

Post-infectious illnesses are not new. In fact, I'm writing this because 12 May is ME/CFS Awareness Day - a day chosen as it marks Florence Nightingale's birthday. The famous nurse was thought to have developed ME/CFS from a flu-like infection following the Crimean War.

Researchers were documenting viruses associated with ongoing fatigue long before Covid-19; glandular fever is a common example.

You'd be forgiven for thinking fatigue is a symptom so vague that it could describe almost any illness. But there's a lot more to Long Covid and ME/CFS than just fatigue, and the two illnesses share an uncanny list of similarities.

A recent study revealed that 25 out of 29 ME/CFS symptoms were also reported in Long Covid. Such symptoms include post-exertional malaise, orthostatic intolerance, thermostatic instability, sensory sensitivities and other specific autonomic and neurological manifestations.

Both ME/CFS and Long Covid even feature insomnia. It's a tragic irony that an illness can cause both fatigue and the inability to sleep.

Up to 10 percent of people who get Covid-19 may develop Long Covid.

Already one million Americans no longer work due to the condition.

Long Covid poses a threat to New Zealand that we must address.

Fortunately, there is a lot we already know about post-infectious illnesses like ME/CFS and Long Covid.

Unfortunately, much recent commentary proclaims that Long Covid is new and therefore there is a lack of research and solutions for people afflicted by it.

I disagree. Having run a local ME/CFS charity, I have seen the difference that a symptom-based management regime can make. I'd like to provide one such example:

Learn from ME: Symptom Management

Google-ing "Long Covid symptoms" will return a long list of symptoms including cardiac afflictions such as palpitations, fluttering heart rate, arrhythmia and others.

Over the years I've seen many ME/CFS patients misdiagnosed with this. A good cardiologist will often find they in fact have something called postural orthostatic tachycardia syndrome (POTS), orthostatic intolerance (OI) or another variant of dysautonomia.

Please bear with the medical jargon here. But correctly identifying a symptom matters.

There are proven management strategies for POTS/OI. However, these can only be used if we identify it first. Sadly, POTS/OI are rarely even identified.

Have you ever stood up too quickly and felt faint? This is what happens to people with POTS/OI all the time - even if they stand slowly. It occurs because basic autonomic functions around blood vessel dilation, regulating blood pressure and heart rate aren't functioning correctly.

Incidentally, POTS/OI is also related to that Long Covid symptom many are calling 'brain fog', since not enough blood is being pumped to the brain.

There is a lot that someone with Long Covid can do if they are diagnosed with POTS.

Management strategies such as wearing compression stockings, increasing fluid and electrolyte intake, avoiding hot temperatures, and medications like florinef and midodrine all work to either expand blood volume or constrict blood vessels. In doing so, they mitigate blood pressure drops so patients are no longer confined to their beds.

The correct management programme can truly make a difference. I've seen people with ME/CFS start participating in the things they love once again. (Though these management strategies aren't always a silver-bullet, and it's strongly advised to consult a knowledgeable doctor. Don't self-diagnose or treat).

A New Zealand cardiologist recently commented that he was seeing POTS in Long Covid patients, so I hope others will start to recognise it too.

This is just one in a long list of symptoms that can be clinically managed. I could write more about strategies for insomnia, cognitive impairment and other symptoms.

Learn from ME: What not to do

While we can learn a lot from ME/CFS that could help people with long Covid, unfortunately, ME/CFS is also a stark lesson in what not to do.

Firstly, what not to do in research. ME/CFS is one of the most neglected and lowest funded human diseases.

To put this in perspective, the USA's National Institute of Health (NIH) allocated six times more research funding to male pattern baldness.

If ME/CFS wasn't so tragically underfunded, we may have many more answers for long Covid.

In December 2020 the NIH pledged $US1.15 billion of funding for Long Covid research. This is an eye-watering amount, even by medical research standards, which hopefully means answers for Long Covid are on the way.

Secondly, ME/CFS shows us what not to do in clinical practice. It takes five years on average for someone with ME/CFS to even receive a diagnosis. This is a problem since early diagnosis and management are thought to improve long-term outcomes for patients.

Although Long Covid shouldn't have the same diagnostic lag, we still need to equip our healthcare professionals with the skills to diagnose Long Covid and support patients battling it.

Unlike ME/CFS, Long Covid needs to be assessed in medical schools, in admission to primary practice and needs to fall under a dedicated medical specialisation.

Finally, ME/CFS shows us how not to manage data. Current ME/CFS cases are not measured. Some research suggests 90 percent of people are undiagnosed, meaning the problem may be much larger than we realise.

The daily 'Unite Against Covid-19' statistics report Covid-19 cases (by active, hospitalised and deceased) but not Long Covid cases.

Reporting Long Covid cases would likely present challenges. But it would validate those who are battling this illness and shine a light on the magnitude of the problem. In turn, this should spark more commentary, awareness and ultimately more action.

At the outset of this article, I mentioned Florence Nightingale. You may not be aware that the celebrated nurse was not only a pioneer in healthcare, but also a pioneer in statistics.

Like Nightingale, New Zealand needs to be a pioneer in both.

Let's start reporting Long Covid statistics and start providing the best symptom-based support for our whānau affected by this illness.

Don't forget ME

It's great to see new support initiatives being proposed for New Zealanders with Long Covid.

But we need to ask why offer new support to those who develop post-infectious illness from Covid-19, but not to those who develop post-infectious illness from other origins?

Excluding ME/CFS would need to be carefully considered from an equity and ethical standpoint; especially given many with ME/CFS have been battling a very similar illness for decades.

Our charity, ME/CFS Support (Auckland) Incorporated has been helping people with ME/CFS for around 10 years, and I could not be prouder of the work our team does. However, our small organisation is receiving more referrals than we can currently assist with. We are fundraising to provide more services, including to those with Long Covid, via our Givealittle page.

Currently no other charity in Auckland is providing support to people with Long Covid. Given the charity's experience in ME/CFS, I believe it has something valuable to offer.

However, we need support from the broader healthcare system to truly address the need.

New Zealand was once the world leader in its Covid-19 response. There is no reason we cannot lead once again.

In a world where elimination is no longer pursued, leadership will be defined by how safe we keep New Zealanders who are exposed to Covid-19. Vaccination and hospital treatment are at the core of this, but so is the support we provide to those living with the long-term effects of Covid-19.

Although Long Covid is yet to be studied extensively, the symptoms surrounding it have. A quality symptoms-based management approach can truly make a difference.

As a country, we need to draw on already-available research and international practice to provide the best care for people with Long Covid now. This means learning from ME/CFS.

* Patrick Hadfield is the president of ME/CFS Support (Auckland) Incorporated.