While for most the COVID-19 pandemic is over, for those
with Long COVID the struggle continues. One of their biggest
challenges has been accessing medical support because
doctors are not trained to recognise, diagnose and treat
post viral illnesses like Long COVID and Myalgic
Encephalomyelitis, often referred to as Chronic Fatigue
Syndrome (ME/CFS).
Interviews with New Zealand
Experts and people with Long COVID lived experience that
have been released on Monday 19 highlight the need for Te
Whatu Ora to do more to train medical professionals about
post viral illnesses.
People with Long COVID
and ME/CFS have often experienced stigma and
misunderstanding, access to services has been very limited
which impacts their mental health and wellbeing and leads to
significant economic impacts. Hundreds of thousands of New
Zealanders are being left out in the cold without medical
support.
Earlier this year ME Support launched the
only comprehensive Long COVID
Online Support Tool to meet the growing need for support
for hundreds of thousands of New Zealanders. Twelve
interviews were conducted as part of the Support Tool and
both experts and those with lived experience believe that
more can be done by our health system.
Experts
interviewed include: Dr Anna Brooks, Immunologist and ME/CFS
and Long COVID researcher with Auckland University;
Professor Warren Tate, Emeritus Professor of Biochemistry
and ME/CFS and Long COVID Researcher at Otago University;
and Mona Jeffreys, Epidemiologist and Associate Professor of
Victoria University Health Services Research Centre, who
produced the publication Impacts
of COVID-19 in Aotearoa.
ME Support
receives no government funding and relies on grants and
donations to support their membership base of over 1000
people with ME/CFS or Long COVID. People can donate here:
https://www.mesupport.org.nz/donate
“We
would love to work with Te Whatu Ora to provide support
services to more people with these conditions and/or discuss
the possibility of developing more professional development
for both current and training medical professionals to learn
more about post viral illnesses” says Kate Duder
We
have been disappointed with Te Whatu Ora’s response to an
enquiry about their Long COVID clinics. Te Whatu Ora stated
that “people with Long COVID can access care as they
would for other chronic and ongoing conditions, through
their GP, who can refer them on to specialist care if
required” yet the majority of primary care providers
know very little or nothing about post viral illnesses.
There is even less knowledge within specialists and any
medical professionals with knowledge are under so much
demand that they often can’t take new patients. “We hear
these stories on a daily basis” says Duder
“It’s
November nearly December (2022) and so that’s ten months
since I was ill and I basically have had no help medically,
I’ve been really unseen and left to drift to try and work
it out for myself.” says Anna one of the Long COVID Lived
Experience interviewees.
Mona Jeffreys talks about
findings from the research publication Impacts
of COVID-19 in Aoteraoa “Very few people in the sample
had received a referral to secondary care. Even when people
did have a referral made on their behalf from their primary
care provider, we had lots of stories of people whose
referrals were not accepted. We also heard a lot of stories
where GPs were not believing, who said it was all in their
head and just felt they had been essentially gaslit and
their GP’s weren’t believing the range of symptoms they
were presenting. We also know that there are things that can
hurt and a lot of GP’s are still stuck in the era, I
guess, of ME treatment of trying to push through symptoms,
push through fatigue and get people out exercising and we
know that for a lot of people with Long COVID that’s not
what they need necessarily so it’s really important that GPs
are well educated on the optimal management of Long
COVID.”
“What is evident is that access to health
care is inequitable. While some report receiving appropriate
care others are left with inadequate or even outdated and
potentially harmful advice. Furthermore, the inability of
some individuals to afford ongoing attempts at seeking care,
combined with others giving up on their pursuit, is not
indicative of a lack of demand for care. Instead, it
highlights a systemic failure that is letting us down”
says Dr Anna Brooks
Janie one of the Long COVID Lived
Experience interviewees says “Challenges are with the
existing medical system – when we have got a health system
set up in giving answers rather than having curiosity, then
if you don’t fit the box and they don’t have an answer
it’s quite a difficult place to be. It’s a little bit like
having a mental illness or some other invisible
disability.”
Professor Warren Tate, states “The
system isn’t geared up for these types of illnesses. At
the moment one of the disappointments for me is that while
there is excitement in New Zealand Ministry of Health, about
doing something for Long COVID, when you quietly say but
ME/CFS patients need to be included in this because the
diseases are incredibly similar, there’s at most a
lukewarm response and we have to be quietly working on this,
I think.”
Te Whatu Ora also justified their lack of
national response saying that “the most of Long COVID
cases have come from the Delta variant”, which is
outdated and not relevant to the New Zealand context. It
dismisses the fact that hundreds of thousands of New
Zealanders are suffering with Long COVID symptoms, mostly
due to Omicron infections.
Dr Anna Brooks says
“While the Delta variant has been associated with a higher
risk of Long COVID, studies have indicated that Long COVID
can occur irrespective of the initial variant of infection
or vaccination status. Indeed, surviving one infection
unscathed does not mean you will be out of the woods with
getting Long COVID. It might be a 2nd or 3rd exposure that
triggers this illness. It is likely that Omicron and its
subvariants will cause the greatest burden of Long COVID
cases in our country”
“Urgent action is necessary
to address this oversight, comprehensively assess the scope
of the issue, and implement accessible healthcare pathways
to not only assist those living with Long COVID, but also
ME/CFS, given the significant similarities between these
conditions.” says Brooks
“It is estimated that
10-20% of everyone who had COVID-19 will experience Long
COVID symptoms, that’s over 250,000 New Zealanders, and
some are very severe leaving them unable to work or carry
out normal daily tasks.” explains Kate Duder, Vice
President of ME Support. “Most of these have had
challenges accessing support through the public health
system”
Since 2013, ME Support (formerly ME
Auckland) has been providing vital support services for New
Zealanders living with ME/CFS, and support for New
Zealanders living with Long COVID since 2020. Their
membership has over doubled in the past few years and the
organisation needs more resources to meet the
demand.
Long COVID, as a post-viral illness, has a
similar presentation of symptoms and very similar molecular
signatures for immune dysregulation, inflammation, and
energy production as
ME/CFS.
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