New multimedia tool enlightens on 'misunderstood' chronic illness ME

April 27, 2023

New multimedia tool enlightens on  'misunderstood' chronic illness ME

Otago University emeritus professor Warren Tate is one of the country’s leading ME researchers who wants to see the condition get formally classified as a disability. Photo: Supplied.

Warning: this story contains mentions of suicide. 

The launch of a new multimedia tool will improve medical professionals' knowledge about one of the world’s most misunderstood complex chronic illnesses.

While myalgic encephalomyelitis (ME) is the focus, the resource will also include information about long covid, fibromyalgia, dysautonomia, and other post-viral illnesses.

Wendy Matthews is all too familiar with the devastating impact of living with ME and the consequences that can result from receiving harmful medical treatments or advice.

She is now bed-bound with severe ME and lives with a nasogastric tube for nutritional supplementation, which she says is partly due to being declined from receiving much-needed home help care when she was younger.

Matthews says she has also faced resistance from healthcare providers in accessing a wheelchair to conserve some of her limited energy and help her to regain some physical ability as she recovers from a severe decline in her condition.

She says this is due to the misconception she will become too reliant on mobility aides, based on outdated knowledge that exercise is essential for recovery from all chronic illnesses.

However, this creates harm to ME patients, who experience an extremely energy-limiting illness, and undergoing exercise can trigger an irreversible decline in their condition.

“If I had been able to get the help at that time, my condition probably wouldn’t have gotten so severe as it is now, I’m quite sure of it,” says Matthews, who is chair of Rest Assured Respite Trust.

Fiona Charlton, president of the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES), says the new tool aims to provide healthcare professionals with easily-accessible reliable information and evidence-based research to further their ME knowledge, while enabling them to better support ME patients and those with other post-viral illnesses.

ANZMES developed the resource, which will feature evidence-based podcasts, videos, case studies, newsletters with links to research, potential treatment options, and quizzes to test a practitioner’s learning and feedback consultation.

Myalgic encephalomyelitis is a debilitating, incurable complex chronic illness that affects energy metabolisation and multiple other systems of the body.

Symptoms include extreme fatigue, significantly reduced physical ability, cognitive or neurological impairments, chronic pain, dysautonomia and hypersensitivity to various stimuli.

The condition ranges in severity, but the hallmark symptom is "post-exertional malaise" (sometimes referred to as post-exertional neuroimmune exhaustion).

According to the International Consensus Criteria for ME, this is the inability to produce sufficient energy and a significant worsening of symptoms after cognitive, physical, or emotional exertion when completing tasks.

Charlton says a lot of outdated information about ME circulating throughout the medical community results in many patients facing ongoing stigma or poor healthcare outcomes.

Matthews has also witnessed tragic consequences when fellow ME patients have followed harmful medical advice in a desperate attempt to get better.

She says she has seen people experience irreversible decline where their ME has worsened to the most severe levels and they do not regain their original illness baseline, patients who have experienced medical gaslighting from doctors who are misinformed, and the expectation that patients should exercise or just “push through when they crash,” says Matthews.

Matthews has also lost people with ME to suicide because they are completely devastated by the relentless impact it has on their life, and they don’t want to be a burden on their loved ones anymore.

She is concerned that more patients could be struggling with suicidal ideation, due to the significant lack of available support, the profound emotional and physical toll of the illness, and the pervasive negativity surrounding the condition.

Charlton says that it is vital that the government recognise how important it is to provide comprehensive services that better support patients, who are currently struggling with the significant lack of appropriate healthcare, home care, and physical, emotional or financial support.

“The quality of life of people with ME is so poor, the burden of the disease and the symptom severity is higher than multiple sclerosis, certain cancers, and HIV.

“Yet, all of those conditions have a lot more funding, more resource management, more access to disability services, and ME keeps getting forgotten.” says Charlton.

Last year, ANZMES launched a petition to have ME reclassified as a disability, which is currently before the Health Select Committee for review.

ME is still classified as a chronic illness despite meeting several definitions of disability, says an ANZMES report.

This is fundamentally problematic, as it prohibits patients from accessing a lot of health-related funding and disability support.

Both Matthews and one of her daughters have lived with ME for a combined total of 50 years between them, which has left both women bed-bound or mostly housebound and unable to work or manage personal care tasks.

However, she says it is only as she has grown older that she has been able to access some home help. This was partly because her husband, who managed a lot of her care, became bed-bound himself with severe illness.

Charlton says that “it’s ridiculous” that many people with ME are declined for help services despite being unable to work and struggling to maintain personal hygiene or manage household chores.

Matthews says this makes people with ME feel extremely unworthy and that all they are asking for is a chance to live a better life where their basic needs are met.

“If the government came and spent a week with us (ME patients), then surely they would change things.

“It’s too easy to make a decision from far away if you don’t have to witness the impact of that decision,” says Matthews.

ANZMES estimates that based on illness prevalence, there are between twenty-thousand and forty-four thousand individuals living with myalgic encephalomyelitis in New Zealand.
Ahead of the international awareness month in May, Otago University emeritus professor and molecular biologist Warren Tate briefly spoke on how ME develops and the profound impacts that the condition has on a person’s life. Listen here

For more information about myalgic encephalomyelitis or if you need support, visit:

ME Support NZ – 0800 632 553 https://www.mesupport.org.nz

Associated New Zealand Myalgic Encephalomyelitis Society – (09) 269 6374 https://anzmes.org.nz

Rest Assured Respite Trust - https://restassuredrespitetrust.org

Open Medicine Foundation - https://www.omf.ngo/what-is-mecfs

If you have been affected by the themes of this story, please reach out to one of these for support: 

Phone or text 1737 to speak with a trained counsellor.

Lifeline – 0800 543 354 or free text 4357

Suicide Crisis Helpline – 0508 828 865

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