Help Eliza get ME Treatment (Closed - Refer to new page)

UPDATE NOVEMBER 2024

Thank you for your kindness and support - please see the update below and visit Eliza's new campaign:

https://gofund.me/185bc98d

Dear Friends, Family and supporters of Eliza,

I hope this message finds you well. First of all - thank you for kindly supporting Eliza’s crowdfunding campaign in 2022 which was instrumental in enabling her to receive her first round of H.E.LP. Apheresis treatment in Germany. 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.

We are launching a new crowdfunding campaign to support her next round of Apheresis treatment in November 2024. Every bit of support will make a huge difference in Eliza’s health and continued recovery.

We’d be grateful if you’d consider supporting her again. We have set up a new GoFundMe page outlining everything that’s happened since 2022, more about Covid-19 impacts, about ME and H.E.L.P. Apheresis and what this round of fundraising will be used to support:

Help Eliza Access New Critical Round of Apheresis

Thank you for your continued support and kindness.

Thanks in advance,

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

THANK YOU!

We are so thankful to everyone who supported our initial crowd funding campaign in 2022 to help Eliza access specialised testing and intensive blood treatments (only available at a handful of clinics worldwide).

ONGOING SUPPORT

This page remainsis now closed but if you’d like to continue to support Eliza - please refer to her new campaign for an urgent new round of H.E.LP. Apheresis Treatment:

https://gofund.me/185bc98d

UPDATE DECEMBER 2023 - 18 MONTHS ON

There is good news overall, and we are grateful to each and every contributor, and the news is mixed:

As a result of this plus 18 months of ongoing treatment, Eliza has just managed to get to Australia for the first visit home in 2.5 years!

HOW YOU CAN CONTINUE TO HELP

1. Support

Her medications, IV treatments, and ongoing medical therapies continue to carry significant cost and constant adaptation. For this reason, the crowdfunding link will remain open to anyone is feels able to contribute to help with these ongoing costs as she continues to fight this disease.

2. Learn and Advocate

We also know that with advocacy for greater research funding & prioritisation in the healthcare sector there will likely be clearer pathways for more effective management and treatment in the future and for the next generation of sufferers. For now, we are doing the best we can with the tools we have, even as we continue to advocate for a better tomorrow for all patients.

To learn more about ME, and available treatment, read below:

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2022 CROWDFUNDING

WHY WE'RE HERE, IN A NUTSHELL

Eliza suffers from Myalgic Encephalomyelitis (ME): a devastating, serious and disabling disease that has no known cure. She has been in major relapse since 2020, leaving her house-bound, mostly bed-bound and unable to feed, cook, care or shop for herself. She requires the assistance of a wheelchair, oxygen, and full time care. Daily tasks such as brushing her teeth, taking a shower, or even going to the bathroom require more than second thought, because every physical movement and ounce of energy must be carefully managed.

Currently, while living in Europe, Eliza has a unique opportunity to access highly specialised testing and intensive blood treatments being used to treat this disease for the first time. She took a physical risk travelling to a research laboratory in Germany and tested positive for all biomarkers that make her a candidate for this unique cardiovascular and immunological care. While the treatments are promising and offer some hope of relief from her horrible condition, they are understandably expensive, especially when international travel and accommodation for long stints is required. 

And that’s why we’re here, to ask you, Eliza’s friends, family, colleagues and contacts to help her access these tests and treatments, which are only available at a handful of highly specialised locations worldwide.

We are hoping to raise at least Australian $75,000 AUD (that’s approximately US $54,150 or EUR €49,230).

THE STORY SO FAR

In March 2009, Eliza caught a virus and never fully recovered. She now suffers from Myalgic Encephalomyelitis (ME), a devastating, serious and disabling disease, often first triggered by viral onset. Over the past decade and a half, she's had bed-ridden years and some healthier years. If you’ve seen Eliza in healthier times you may not even be aware of the full extent of her condition or just how hard she has fought for so long, especially throughout her twenties.

In October 2020 she suffered a sudden major relapse following chronic infections and surgery. In her current condition, she is housebound and requires the assistance of a wheelchair and full time care. She has experienced a torturous existence, often bedbound in a dark room, managing convulsions, immune surges, cellular crashes and a suite of debilitating impacts of this disease throughout her whole body. Patients often must live within a small ‘energy envelope’, exerting beyond this has devastating consequences where the body can crash for weeks, months or even years.

This is awful for any person to experience. For Eliza, our vibrant, sharp, social, energetic, creative and passionate friend, it has indeed been awful. During this past winter she was not well enough to have a visitor for four months except for 60 minutes on Christmas Day, which resulted in a severe crash. Similarly, an attempt to relocate for a few days’ change of scenery in March led to one of the worst crashes yet in the past 13 years. (It was scary, ask David!)

Eliza has been unable to work for 2 years since this relapse, and had already reduced her hours due to the toll of chronic infections, plus, due to her fluctuating health, she has bravely managed many interruptions to her career and underemployment for more than a decade while dealing with flares. David has generously become her carer while she has worsened and this has also limited his capacity to work.

WHAT IS ME?

ME/CFS is “a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female. It has a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 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. ME/CFS is not psychosomatic, and psychological therapies will not cure the disease." (Reference: Doctors with ME 2022 )

Biomedical research across more than three decades into this disease has revealed a complex picture of debilitating damage and ongoing pathophysiology in the body. Repeatedly in studies, ME patients show abnormalities in the brain (including neuroinflammation, decreased cerebral blood flow, damage to grey matter, and brain lesions), in the immune system (abnormal cytokines and various immune cells, chronic bacterial infections, viral persistence and reactivations), in musculoskeletal and cardiovascular systems (hypercoagulation, hypoxia, endothelial damage, lactic acidosis), spine and spinal cord abnormalities, and, critically, in cellular metabolism (mitochondrial dysfunction, peroxisomal blockages, increased cell death).

There are many more symptoms impacting organs, tissues and systems throughout the body, and there are a range of other conditions and diseases that can occur alongside ME (such as POTS, EDS, and CCI). The disease can be relapsing-remitting and presents on a spectrum from Very Severe, Severe, Moderate and Mild, where even ‘mild’ usually inhibits a person’s physical & cognitive ability to fully work, socialise and live family life.

New and ongoing research into viral-onset diseases are providing important clues to painting the pathophysiological picture of ME. Some of these findings are leading researchers to consider known drug and therapeutic treatments that could be rapidly applies to people with ME. For example, specialist researchers have uncovered the presence and particular role of hypercoagulation, microclots, vasculitis and other abnormalities in the blood plasma. These harmful irregularities in the blood system cannot be observed using routine blood test techniques, but can be detected using fluorescent microscopy. Thus providing at least one new target for medical *interventions* using intensive, but known, techniques such as Apheresis (similar to blood dialysis)

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

WHAT IS THE SPECIALIST TREATMENT ELIZA IS ACCESSING?

1. Microclot testing and Apheresis Treatment in Germany 

Eliza will access a particular type of apheresis treatment known as H.E.L.P. Apheresis. This is an existing ‘blood washing’ therapy that sees a patient hooked up to a machine for several hours to have their blood filtered and ‘cleaned’ of certain abnormal and dangerous particles. 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 Myalgic Encephalomyelitis.

ME patients, including Eliza specifically, have been found to have microclots in their blood plasma, which limits oxygen transportation, blood functions and immune function. These clots can also be tackled with pharmaceutical treatment, known as “Triple Therapy”, which Eliza will also undertake. This is a stack of three key medicines including daily injections to help remove the clots from her blood stream.

With clinical expertise and the physical machines themselves in short supply, Eliza has managed to travel to a research laboratory in Mulheim, Germany to directly receive treatment from world-leading experts. It’s important to remember that apheresis offers a treatment, not a cure, and targets one piece of the puzzle of this complex disease. It is likely Eliza will need a range of ongoing support and treatments. However, this is a momentous opportunity to treat what we can see right in front of us, and help Eliza regain more of her life once more.

Watch a video of the H.E.L.P. Apheresis machines being used for similar viral-onset disease patients with Long Covid, at the same clinic as Eliza here .

2. Additional Specialist Testing in Barcelona, Spain

In addition to Germany, Eliza has been accepted into a highly specialised ME neurological clinic in Spain. ME is a complex puzzle. The Apheresis and microclots is one piece of the puzzle, the neck and the spinal cord provides another informative piece. 

Eliza has found and met with online a neurosurgery clinic in Barcelona, Spain who have already screened her for further investigation based on clinical history. This testing clinic provides a series of specialised scans and tests, for which expertise of the person conducting the tests can be critical, and is not available in other locations in Europe. Eliza will visit the clinic with a view to rule in or rule out a series of relevant comorbidities and diagnoses. This could unlock further treatment options, and although these are risky and would need to be considered carefully, simply to have a clear picture of any possible abnormalities in the spine and spinal cord will be vital to understand to inform her ongoing care.

If you’re interested in reading more about this emerging puzzle piece, you can follow a fellow patients story here: CCI & Tethered Cord series 2019

HOW YOUR DONATION WILL HELP

Your donation will help Eliza access Apheresis in Germany, at the epicentre of this treatment under the direct guidance and care of Dr Beate Jaegar, as well as the associated travel and accommodation costs to stay in Germany. Fortunately, Eliza is already living in Italy, however these Apheresis sessions can be grueling for ME patients, can take days to recover, and have cascade of impacts for a body that is trying to heal in the face of chronic infections. This is why she will need to stay in Germany while having the treatment and travel there on more than one occasion.

This Crowdfunding Campaign will help Eliza to access the following specialist care:

In Germany

- H.E.L.P. Apheresis Sessions in Germany (as many as 14 sessions may be required)

- Fluorescent microscopy to test for microclots, platelet abnormalities and endothelial damage - a new emerging diagnostic (Learn more: 2022 preprint link) 

- Additional immunology tests sent to a specialist pathology lab in Berlin

- Weekly consultation with world leading researcher and treating physician

- Pharmacy costs and supplies

- Transport and Accomodation for the multiple trips required to transport Eliza from Italy to Germany for multiple rounds of treatment.

- Cost of equipment and mobility aids, including wheelchair and oxygen concentrator

- Support for food and basic living costs with her and her caregiver unable to work during treatments 

In Spain

- Access to specialised spinal scans and neurological investigations for assessment of important comorbidities that could impact her ongoing care

- Consultation with specialist surgeon and a specialist physician 

- Transport and Accommodation from Italy - Barcelona

I CAN'T HELP FINANCIALLY RIGHT NOW, WHAT ELSE CAN I DO?

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.

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 by using the contact form below.

We ask that you please don’t contact Eliza directly. As you can imagine she has very limited capacity while undergoing treatment. We will collate messages from the email address provided and make sure they get to her. 

Other Questions

If you have any questions about this crowdfunding campaign, or a message for Eliza, please reach out to us Lucinda, Stewart, Sarah or Amy using the contact form below. 

FURTHER INFORMATION 

For those wanting to learn even more about ME 

Medical guidance and research summaries:

Myalgic Encephalomyelitis /Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clinic Proceedings (2021)

International Consensus Primer for Medical Practitioners - PDF available (2014)

Summary Guidance for GPs - Doctors with ME (2022)

Helpful ME Websites: 

Doctors with ME - Global professional association of specialists, clinicians and researchers

ME Action - patient-led action group founded in the USA

Emerge Australia - one of several ME charities in Australia, free GP training modules

Physios for ME - resources on post-exertional neuroimmune exhaustion (PENE/PEM)

Italian language:

ME/CFS: Un Manuale per la Pratica Clinica - PDF 

Watch a documentary:

“Unrest ” Sundance award-winning documentary on Netflix

ME/CFS “Dialogues ” film series online

More on Microclots

Leading researchers on Microclots - Long-Covid Podcast, Spotify

Persistent clotting protein pathology in Long COVID - 2021

Hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis - 2022 preprint