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Ask Uncle Jack

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Tess Bohne

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Khloe

<div>TW: caregiver abuse, s*icidal ideation 

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<div>Mari has Severe Myalgic Encephalomyelitis, and is trapped in a dangerous situation with a highly abusive “caregiver” who she is completely physically dependent on. 

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<div>The ongoing abuse is keeping Mari in a Severe state with no chance of recovery. 

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<div>Severe ME is a devastating disabling multisystemic neuroimmune disease often described as a ‘living death’. Despite this grave level of illness, many housebound patients like Mari lack the care and symptom-relieving treatment necessary to reduce preventable suffering.

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<div>There is no cure or licensed treatments for ME. Patients with severe ME require aggressive rest, assistance with daily needs, and a safe, stress free home environment to give their health a chance at stabilising. 

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<div>Mari is completely reliant on daily care to meet her survival needs, but she’s been experiencing ongoing neglect, a lack of adequate care, and extreme abuse from her partner/caregiver. She has been isolated in this abuse ever since the onset of her ME, which rapidly deteriorated her into a Severe state which she’s been suffering in ever since. Without her caregiver she wouldn’t be able to access her daily survival needs and would immediately begin to deteriorate further from the added exertion, but staying with this caregiver she is unable to improve her health along with experiencing daily suicidal ideation due to the ongoing abuse, therefore she ultimately also will not survive unless she manages to escape this horrific situation soon.

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<div>Mari does not have any other friends or family who are able to help care for her, and adequate government funded care is no longer an option for the majority of disabled Canadians due to the entire medical field being severely understaffed. There are also no shelters that can provide safe accommodations for a Severe ME patient. 

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<div><strong>Mari has been trapped and suffering in this dangerous situation for over half a decade without any realistic way out. </strong>

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<div>The intensity of this abuse is rapidly increasing, and Mari is in PHYSICAL DANGER. Mari has been physically attacked and seriously injured by her abuser several times. 

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<div>Police involvement has only caused further trauma for Mari and has also caused her to contract illness as they do not mask. Emergency services cannot intervene and should not be contacted. 

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<div>Community support is our last hope for Mari!

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<div><strong>— If we can successfully reach HALF of this fundraising goal by the end of MARCH 2026, Mari will finally have the opportunity to escape. </strong>

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<div><strong>— The other half must be raised by the end of SEPTEMBER 2026 so that Mari has access to care and medical needs once she moves out.</strong>

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<div>Mari desperately needs ongoing funds for secure housing, moving expenses, healthy and accessible food, household items, medical supplies and paid care. 

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<div>The goal is to get Mari to safety within the next year, and reduce the extreme mental and physical strains of this ongoing trauma in the meantime. 

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<div>The target fundraising goal is what is needed for Mari to escape, successfully live alone and maintain her health and nutrition both before and after. All costs in CAD:

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<li><strong>$33.8K for 12 months of paid care (this equates to 2.5 hours of care/day at $38 per hour) so that Mari can survive on her own.</strong>

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<li>$7.7K for specialised accessible moving services.

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<li>$3.6K for 6 months meal delivery service.

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<li>$6K for 12 months basic needs including groceries and household items.

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<li>$3K for 6 months prescriptions and medical supplies. 

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<li>$10.4K for a year of essential medical appointments including transportation. 

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<div>The total goal is $64,500 CAD ($46,789 USD/£34,690)

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<div>Adequate financial support would give her a chance to find a new living situation and become independent from her abuser so she can finally have a chance to stabilize and improve her health. 

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<div>Mari is deeply appreciative of all the support she has received and continues to receive, and is holding onto hope that our community will continue to support her and make this goal a reality.

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<div>Thank you so much for taking the time to hear Mari’s story and for contributing to her recovery.

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<div>NB it is essential Mari stays anonymous for their own safety hence why there are no photos of Mari and we aren’t using her real name. Numerous people who are helping with these fundraising efforts know Mari personally and can vouch for her and the reality of her situation. 

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<div><strong>More information on myalgic encephalomyelitis:</strong>

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<div>Severe ME is often described as a living death and despite this extreme level of illness many housebound patients like Mari still lack the homecare, support and symptom relieving treatment necessary to reduce preventable suffering. To learn more about ME please check out <a href="https://www.meaction.net" target="_blank" rel="noreferrer noopener"></a><a href="https://www.meaction.net/" target="_blank" rel="noreferrer noopener"><a href="https://www.meaction.net/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.meaction.net/</a></a> 

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Help a Severe ME patient safely escape her abuser

<div>Hi, I’m Anna and I’m 28 years old.
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<div>I suffer from Myalgic Encephalomyelitis (ME/CFS) and have drastically declined in the last few months.
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<div>I’m largely bedbound now as a result and my electric chair that I have can’t be used in my flat as it’s to big.
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<div>Having a lightweight, more compact manual chair would be ideal and would allow me to get to the toilet or kitchen a lot easier than I can currently do!
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<div>Sadly, they’re very expensive - the one that occupational therapy think will suit me best is roughly £2400 so I’ve got a lot of saving to do! (Unfortunately I do not meet my local NHS service criteria for help with this.) But it will be worth it if it gives me a little mobility back.
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<div>If you’re in a position to help me out it would mean so much to me. If you can’t donate, please consider sharing the go fund me page so it can reach others too!
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<div>Thanks again,
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<div>Anna x
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Donate to help me buy a lightweight wheelchair!

<div>Hello everyone 
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<div>My name is Sydney, and I'm reaching out to you from Washington state. I'm here to rally support for Esam Bannar, his wife, and their three children, who are facing a dire situation in Palestine. 
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<div>Esam's family home was tragically destroyed in the recent attacks on Palestine, leaving them with nothing. Esam himself sustained injuries from shrapnel to his chest during these harrowing events. They are now in desperate need of assistance to evacuate to safety, but they lack the necessary funds to do so.
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<div>We initially set our fundraising goal at $10,000, but the urgency of their situation demands more. Therefore, we've increased our goal by an additional $10,000. This will cover not only the costs of their evacuation but also essential supplies such as food and water for the Deir Al-Bala camp where they are currently seeking refuge.
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<div>Just today, a water truck arrived to provide much-needed relief to Esam, his family, and others in the camp. Now, our focus is on securing funds to purchase food from local markets for the entire camp community.
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<div>Your generous donations will make a direct and immediate impact on Esam's family, enabling them to access the safety and security they urgently need. 
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<div>I'll be updating this campaign with videos and photos documenting the distribution of water and food, so you can see the tangible difference your support is making.
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<div>Thank you from the bottom of our hearts for your kindness, generosity, and unwavering support during this challenging time.
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Help Esam and his family evacuate Palestine

Help Markéta survive life with Long Covid

<div>Anonymous is a wife and mother of two suffering from Severe ME/CFS, POTS &amp; other conditions which have left her bedbound. Severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome) are both debilitating, chronic conditions that profoundly affect daily life.
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<div>Severe ME/CFS is a life-shattering, multisystemic neuroimmune disease causing extreme ‘fatigue’, pain and cognitive dysfunction. Even small physical or mental exertions can lead to “post-exertional malaise” or “crashes” that worsen symptoms.
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<div>POTS disrupts how the body controls blood flow, causing a racing heart, dizziness, fainting and many other symptoms. The combination of anonymous’s conditions, have left her housebound, often bed-bound and have made the simplest tasks like showering or standing to cook nearly impossible.
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<div>However, due to family and financial pressure she is finding herself in situations where she needs to overexert, leading to a concerning deterioration in her health. She falls through the cracks in the UK care and benefits system since her husband is still working.
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<div>Ideally, she urgently needs to leave her home temporarily and have care in order to rest and stabilise. However, this is not possible financially or practically, and any government funding options will take several months to organise.
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<div>Right now, attempting to prepare meals for her household is leading to her overexerting and crashing.
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<div>We aim to raise £500 to go towards meal prep services and cleaners to help her get some stability while a more long-term solution is reached.
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Mutual aid for a community member with severe ME

<div><strong>*** UPDATE*** </strong>
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<div>Week 18 - Millie continues to deteriorate and struggle in the hospital environment.
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<div>A mediation meeting has been held via solicitors with the hospital Trust and family. 
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<div>Millie now has an official diagnosis of ME/CFS accepted by the hospital.
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<div>Unfortunately, getting NG tube feeding at home no longer appears to be viable option and a PEG tube procedure is being offered as a route to get Millie discharged home with a suitable feeding solution. 
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<div>Millie and family are worried about Millie’s extra fragile state to have this done but see it as her only viable route home.
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<div>Millie’s family have found a wonderful local care company with some understanding of ME/CFS to come into hospital for a few hours a day to meet Millie’s ME/CFS care needs in the mornings.
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<div>Some of the money already raised will cover this for a few weeks but if more can be raised this can cover more hours and more days for Millie to receive this support, which would really help her at this difficult time.
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<div>We would also like to use this care company plus maybe another nursing one once she is discharged home to provide her with ME/CFS sensitive care.
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<div>We are looking into council funding but we aren't sure if we will get it or get it fully.
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<div>As we have said we also want to use ME/CFS Drs to support Millie at home who are often mostly private so will also incur costs.
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<div>So your donations will really help Millie get the care she needs with her very severe ME/CFS.
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<div>**************************************
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<div>This fundraiser is being set up to cover legal costs (a solicitor), private ME/CFS specialists and private care after hospital for Millie McAinsh.
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<div>Millie (age 18) has very severe ME/CFS and has been in struggling in hospital for nearly 12 weeks to receive the care she needs and to return to the safety of her home environment with a feeding tube which is necessary due to the level of exhaustion and pain she is experiencing with her condition.
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<div>Her and her family thought the hospital stay would be a week or less to get a feeding tube and return home to the best environment for the management and treatment of her symptoms which include extreme pain and sensitivity to sensory stimulation (light, sound, touch, pain, movement), fatigue and post exertional malaise (PEM) following any exertion.
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<div>●The situation with Millie has got to the point where there is a total breakdown of trust between the hospital and Millie/family. Because of this they have made the decision to involve a solicitor to try and get matters resolved.
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<div>●Once Millie is out of hospital family wish to engage with the best Dr's and other healthcare providers available to help manage Millie’s MECFS symptoms and also to move along the road to a full recovery as far as possible; all this will be costly as most of these providers are private.
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<div>●Top ME/CFS specialists in the UK state that "Some patients with very severe ME will require tube feeding, either enterally or parenterally." (see <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/)." target="_blank" rel="noreferrer noopener"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070213/</a>).</a>
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<div>Millie is one of these unfortunate patients and family wish to use a private care company to help with NG tube feeding at home due to a lack of NHS services in Millie’s postcode area for this and alongside support from the hospital and NHS community nurses; this will incur costs of travel and care.
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<div>Funds are going to Lucy Montgomery (Millie's Mum), to manage on behalf of Millie.
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Help Millie and her family with legal and medical costs

Rachel Spalding

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