Interviews show those with Long COVID being left out in the cold

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 June 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.

Anna one of the Long COVID Lived Experience interviewees says: “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.”

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."

Dr Anna Brooks says: “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.”

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.

Kate Duder, Vice President of ME Support, explains: “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.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.

The interviews are available pre-release on a private playlist: https://www.youtube.com/playlist?list=PLvmUwKW2Xz4Prdb2BtuAhpkT6IfipeqRf:

Released Monday 19 June at: mesupport.org.nz/longcovidinterviews

For more information about ME Support visit: mesupport.org.nz