The National Advisory on ME (ANZMES) is calling on Kiwis
to come together for World ME Day as we battle a global
health crisis.
Already worldwide there are an
estimated 25 million people with Myalgic Encephalomyelitis
(ME) also known as Chronic Fatigue Syndrome
(CFS).
There has been a significant increase in cases
of ME with a shift to COVID-19 being the main trigger for
this disabling illness.
There are estimated to be 65
million cases of long COVID worldwide and 50% meet the
criteria for an ME diagnosis.[1]
This World ME Day, May 12, 2024,
marks the 55th anniversary since the World Health
Organization (WHO) officially acknowledged ME in their
International Classification of Diseases. Despite this,
there is still no universal cure or treatment.
To
highlight this global health crisis and demand that action
is taken now, ANZMES proudly stands alongside World ME
Alliance members across the globe calling Kiwis to get
involved and become a #GlobalVoiceForME to amplify our
efforts to be heard.
ANZMES is the National Advisory
on ME and is a founding member of the World ME Alliance,
supporting the ME community since 1980.
ANZMES
president, Fiona Charlton, says the government needs to
recognise that the pandemic is clearly not over and more
action is needed to protect and support people.
“The
convergence of ME and COVID-19 has created a perfect storm,
amplifying the challenges faced by patients and healthcare
providers.
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“Health protections have been removed but
cases keep rising and people are suffering,” she
says.
ME is a debilitating chronic illness that is
often misunderstood, characterised by post-exertional
malaise (an exacerbation of symptoms after minimal
exertion), and a range of other symptoms that significantly
impact daily functioning, such as pain, cognitive
impairment, and orthostatic intolerance (blood pressure and
volume dysregulation).
In 1969, the World Health
Organisation classified ME as a neurological disease and
included ME and CFS in 2019 under post viral syndrome. An
estimated 80% of people with ME/CFS develop it after a
virus.
Given the similarities in symptoms both ME and
long COVID benefit from a similar approach to support and
management.
Associate Professor Mona Jeffreys at Te
Herenga Waka / Victoria University of Wellington says “The
COVID-19 pandemic has resulted in large numbers of patients
with long COVID, many of whom meet diagnostic criteria for
ME. “ME is a debilitating condition, which cannot be
treated, but with compassion and evidence-based care, the
symptoms and their impact can be lessened.
“I call
on all health professionals treating someone with ME to
understand that this is a neurological, not psychological,
illness. “Encouraging your patient to exercise is likely
to worsen their fatigue and post-exertional malaise.
“Suggesting treatments such as graded exercise therapy and
cognitive behavioural therapy is outdated and is not
evidence-based. “Investigating symptoms of POTS, that can
respond to treatment, is important.
“The best thing
you can do is to familiarise yourself with the Best
Practice Guidelines, and treat patients accordingly.”
The National Advisory on ME released easy to follow best
practice in December 2023.
The hard facts
The
latest Health New Zealand data shows 3,873 COVID-19 cases
were reported in the last week and 21 deaths were attributed
to the virus (as at 23/04/2024)[1]. 78%
more sick leave was taken in 2022 (than 2020) and wait times
for emergency patients were exceeded by 95% of DHBs, in
2022.
Of 65 million long COVID cases, half may develop
ME.[2] Added to the existing estimated
numbers globally, that’s 57.5 million people worldwide
significantly ill with ME/CFS. In Aotearoa this equates to
416,350 people with this debilitating condition, up from an
estimated 25,000.
Global research shows reinfection
continues to pose a significant threat of post-viral
complications with implications for long-term socioeconomic
burden.[3],[4]
“Without appropriate
management, the window for recovery gets smaller and
smaller, and that is why international best practice must be
implemented” says Charlton.
Research also highlights
a disparity between government funding and level of disease
burden for ME, in comparison to other chronic illnesses.[5]
Emeritus Professor Warren Tate,
of the University of Otago says, “the major clinical
subgroup of Long COVID, the post viral syndrome arising from
the global pandemic, has brought a greater awareness of the
needs of the many ME/CFS patients suffering from a very
similar ongoing debilitating fatigue
illness.”
“Long COVID provides the opportunity for
there finally to be a focus on education, and standardised
best practice management and social support for the
significant numbers of patients of both
groups.
“Managing the burden on families and their
communities, and understanding how ME/CFS and Long COVID
affect our health and economic systems looms as an urgent
priority not only for New Zealand but for all countries.”
says Tate.
World ME Day serves as a catalyst for
action urging the government and public health authorities
to allocate more resources to develop strategies for early
identification, diagnosis, and management of post-viral
illness, including appropriate support for individuals with
ME.
Each national organisation around the globe has
the opportunity to foster change by building relationships
with local and national governments, encouraging them to
develop appropriate policies and programmes to deliver vital
services for care and intervention. Each Government has the
power to advocate for recognition of this global health
crisis, and ensure that the World Health Organisation
implements action to tackle this serious and significant
problem.
“There are many very sick people battling
for support and being ignored. There is no cure or universal
treatment for ME and no dedicated funding or efforts from
the government to try to fix this. As the National Advisory
on ME, we have delivered best practice guidance to the
government and all medical bodies in Aotearoa/NZ and believe
it must be adopted to deliver the standard of care
required.
We need world health leaders to step up and
take action but we also need the support of everyday
individuals in the community,” says
Charlton.
“When we unite as a Global Voice for ME we
are showing health and government officials that they must
listen, they must address needs, and they must bring vital
change now.” Charlton says.
Each year the ME/CFS
organisations throughout New Zealand join together as a
collective to participate in World ME Day and share the same
message. This year the collective joins the global voice for
ME and encourages everyone to get involved in the following
ways –
How to take action for World ME Day
2024:
Send – a letter
to your local MP or the Health Minister, Dr. Shane Reti
asking for them to take action on behalf of the ME and long
COVID community.
Share – be a #GlobalVoiceForME,
share your ME story on social media, share your lived
experience or make
a poster to educate others about ME. Use the hashtags
#GlobalVoiceForME #GlobalHealthCrisis
#NZCollectiveVoiceForME.
Participate – send ANZMES
your photo holding a piece of paper that says how many years
you’ve been unwell with ME, to be used in a video on
social media.
Learn – learn about ME and long
COVID so you can offer support to friends and family living
with the condition – visit anzmes.co.nz and
worldmealliance.org
Fundraise – host a ‘Blue Sunday’ Tea Party for ME to
raise funds see https://the-slow-lane.com/blue-sunday/
for more information.
Light it up – Councils and
business owners can light their place up in blue in
solidarity for ME.
Join us in acknowledging World ME
Day and taking meaningful steps toward a future where
individuals with ME receive the recognition, care, and
support they deserve.
Aotearoa/NZ ME/CFS Collective
includes:
ANZMES – National
Advisory on ME
Complex
Chronic Illness Support
Who are ANZMES?
We are
the National Advisory on ME in Aotearoa/New Zealand. With
four decades of knowledge and experience, we are the trusted
leaders in ME education, representation, and research. Our
expertise comes from a reputable medical team of advisors,
including a world renowned expert and MNZM recipient, a
fellow of the Royal NZ College of General Practitioners
(RNZCGP) and a network of academic researchers, clinicians,
and representatives from the ME community. The executive
committee comprises experts in their respective fields for
governance, policy, leadership, representation, and
education.
Always a trail-blazer, it was the first ME
charity of its kind in the world, established in 1980, as
ANZMES, to provide support, information dissemination, and
representation, achieving past outcomes through dedication,
passion, time, and knowledge of lived experience. Today, the
organisation leads as a Royal New Zealand College of General
Practitioners (RNZCGP) Continuing Medical Education (CME)
Registered Provider, proud funder of vital research, and
steward of the community voice.
We continue to
disseminate evidence-based information nationally, and
represent the ME voice globally as a founding member of the
World ME Alliance through advocacy and leadership. ANZMES
latest education programme – Know
M.E. – is a video podcast and news series featuring
up-to-date, evidence based research and information on ME
and Post COVID Conditions.
[1]
Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID:
major findings, mechanisms and recommendations. Nat Rev
Microbiol 21, 133–146 (2023).
https://doi.org/10.1038/s41579-022-00846-2
[2] https://www.tewhatuora.govt.nz/our-health-system/data-and-statistics/covid-19-data/covid-19-current-cases/
[3] Davis, H.E., McCorkell, L., Vogel,
J.M. et al. Long COVID: major findings, mechanisms and
recommendations. Nat Rev Microbiol 21, 133–146 (2023).
https://doi.org/10.1038/s41579-022-00846-2
[4] Mulu Woldegiorgis, Gemma Cadby,
Sera Ngeh, Rosemary Korda, Paul Armstrong, Jelena Maticevic,
Paul Knight, Andrew Jardine, Lauren Bloomfield, Paul Effler.
(2022).Long COVID in a highly vaccinated population infected
during a SARS-CoV-2 Omicron wave – Australia. medRxiv
2023.08.06.23293706; doi:
https://doi.org/10.1101/2023.08.06.23293706
[5] K. Bach. (2022). New data shows
long Covid is keeping as many as 4 million people out of
work.
https://www.brookings.edu/articles/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/
[6] Mirin, Arthur A., Dimmock, Mary E.,
and Jason, Leonard A. ‘Research Update: The Relation
Between ME/CFS Disease Burden and Research Funding in the
USA’. 1 Jan. 2020 : 277 –
282.
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