Help Eliza Access New Critical Apheresis Treatment

Eliza Charley suffers from Myalgic Encephalomyelitis (ME): a devastating, serious and disabling disease that has no known cure.

Since the last treatment: In 2022, thanks to the support of her community, Eliza underwent H.E.L.P. Apheresis treatment in Germany (a specialised blood filtering procedure, more below) that has shown promising results for ME patients. This treatment significantly improved her baseline, enabled her to sit up for longer periods, walk short distances, and enhanced her cognitive function.

Now, Eliza faces a new, urgent hurdle: after diligently avoiding Covid-19 for five years, Eliza recently contracted the virus, setting her health back and increasing her ME symptoms. After specialised consultations and renewed testing, Eliza has been prescribed an urgent round of Apheresis to tackle the severe impact of Covid-19.

Apheresis treatment has long waiting lists and the clinic in Germany is one of only a handful of highly specialised clinics worldwide. It's crucial we act quickly.

Fundaising Goal

We aim to raise a minimum of $AUD 60,200 (approximately $USD 40,000 or €EUR 37,000) to cover the expected costs of the initial treatment, testing and some travel costs for her stay in Germany from her home in Italy. This will increase after the first test results come in.

We ask for your generosity to help Eliza in this crucial time. Please note donation amounts are listed in Australian Dollars.

For more on Eliza’s story, how the funds will be spent or to learn more about ME and H.E.L.P. Apheresis, read on below.

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Eliza's Story

In 2009, Eliza caught a virus and never fully recovered. She contracted Myalgic Encephalomyelitis (ME), a serious and disabling disease, often first triggered by viral onset.

In October 2020 she suffered a sudden major relapse following chronic infections and surgery. After rapid decline, by the end of 2021 she was often bedbound in a dark room, managing convulsions, immune surges, cellular crashes and a suite of debilitating impacts of this disease. She was almost completely housebound, required full time care, and could only have occasional outings with the aid of a wheelchair.

As a consequence of this disease-based disability and her partner David become her carer, their ability to work for income has been extremely limited.

Since Apheresis in 2022

Since Eliza's first Apheresis treatment in Germany in 2022, her baseline has improved. Importantly, it halted her decline. Initially bedridden, by the end of 2022, Eliza was able to move around her home with the help of a wheelchair and walker, and her cognitive functions improved enough for her to engage in advocacy and enhance her Italian language skills.

Eliza undergoing H.E.L.P Apheresis treatment in Germany in 2022

Throughout 2023, despite fluctuations, her health continued to improve and her improved baseline enabled her to access additional medications, tests, and treatments, with specialist guidance in Italy, in Australia, and remotely from the UK. This regimen included in-clinic and at-home IV treatments. Ultimately, this allowed her to return to Australia in 2023 for the first time in two and a half years.

With improvements to her baseline, Eliza was less house-bound and able to engage in occasional activities.

By 2024, Eliza had made slow and painful gains enough to start walking for up to 6 minutes once a week without worsening the disease, and being well enough to make a cup of tea whenever she wanted and drink it immediately without needing to rest after making it. She was also able to return to some semblance of engagement with life, albeit while still facing debilitating daily symptoms.

By 2024, Eliza made slow gains and was able to engage with some social activities.

In August and September this year, she was able to re-introduce a small amount of sporadic remote work, for the first time in four years. David and Eliza were so happy to finally be able to begin to make some plans for the future.

That hope ended with a COVID-19 infection in October 2024, which erased many of their hard won gains, with an indefinite threat of severe relapse unless she can access specific, appropriate and substantial treatment as soon as possible.

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What is Myalgic Encephalomyelitis (ME)?

Myalgic Encephalomyelitis (ME) is “a chronic, complex, multi-system biological illness with often devastating consequences” (Doctors with ME 2022 ). It is a multi-system, multi-organ disease supported by extensive biomedical research across three decades which has documented a complex picture of debilitating damage, including severely impacting the immune, nervous, musculoskeletal and cardiovascular systems, spine and spinal cord abnormalities, and, critically, cellular metabolism and energy production systems.

In addition, there are a range of other conditions and diseases that can occur alongside ME (such as POTS, MCAS, and CCI which specialists have confirmed are all complicating factors in Eliza’s case).

A worse quality of life score than Cancer or MS

ME patients have a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. About 75% of sufferers are female. 25% of patients are housebound or bed bound. Severely affected patients can struggle to perform ALL activities of daily living, and extreme cases may even need tube feeding.

An extensive body of biomedical research

Biomedical research across more than three decades into this disease has revealed a complex picture of debilitating damage. Repeatedly in studies, ME patients show abnormalities:

Learn more about ME using the links and references included below.

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What is H.E.L.P. Apheresis?

Heparin-induced extracorporeal LDL/fibrinogen precipitation (H.E.L.P.) Apheresis is an intensive blood-filtering treatment that sees a patient hooked up to a machine for several hours to have their blood filtered of certain abnormal and dangerous particles - removing viral debris, spike protein, inflammatory substances and microclots from the bloodstream, improving system-wide function.

This is an existing therapy. Apheresis has been studied and used in range neurological and neurodegenerative diseases (Journal of Clinical Medicine 2020) , and is now being studied as a treatment in eligible patients with ME.

Testing in 2022 at the German clinic, revealed Eliza’s blood to be positive for key markers including microclots, hyperactivated platelets, and endothelial damage.

Fluorescence microscopy of Eliza’a blood after her recent COVID infection show that some of this altered function is now worse than ever.

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How your donation will help

Your donation will help Eliza access a new round of Apheresis in Germany after COVID infection - including specialist consultations, treatments, tests, and travel costs.

This Crowdfunding Campaign will help Eliza to access the following:

These are new costs, separate to the previously completed treatment and ongoing medication (average €1500 per month), and also excludes other travel to and medical treatment in Australia.

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Can’t Help Financially?

That’s ok, not everyone is in a position to assist financially. If you can’t, here’s some things you can do to show your support.

Get informed about ME.

After many decades of published biomedical research and clinical trials for ME, a lot is known but few people know it. You can be part of the change to support patients by learning from reputable researchers and patient-informed sources (included below).

Share Eliza’s crowdfunding page via email or on social media

Invite others in your network to join this opportunity to help Eliza and learn more about ME. If you’d like sample templates for email or social media posts and tiles please reach out using the contact form below.

Send a note of encouragement

Share a note of support and encouragement to Eliza (@elizacharley) on Instagram or Whatsapp. As you can imagine she has very limited capacity while undergoing treatment so she is slow to respond, but it still means a lot.

Other questions

Please reach out to Elilza’s sister Lucinda Hartley [email redacted] or David Shackelford [email redacted] if you have any questions about this crowdfunding campaign, or have other questions.

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Research and References

Medical guidance and research summaries:

Helpful ME Websites:

Italian language:

Watch a documentary and researcher interviews:

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