<div>Miska Knapek is suffering a severe form of immune disease, leading similarly low immune cell counts as for HIV/AIDS, and disables and kills people similarly. Without an effective immune system, diseases develop with ease and overrun people.
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<div>Miska's already almost died twice from severe MECFS complications - massive sudden internal bleeding, and alter a lung blood clot - so he knows when the situation is bad, like now.
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<div>Alas, as with HIV/AIDS in the 80s, MECFS treatments are only available in experimental form from private practitioners. Costs range from a almost a thousand to six thousand euros per month, depending on severity.
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<div>Although Miska has had troubling MECFS problmems since 2010, since 18 months he's severely disabled and in severe pain from the MECFS. Miska wakes up feeling someone has beaten him up, kicked his chest, has bruises inside, and with a migraine making it difficult to write even a paragraph coherently.
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<div>Due to infections Miska's immune system can't handle, he's been shitting blood for eight of the last twelve months.
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<div>Miska has almost died twice from (1) sudden internal bleeding and (2) a lung blood clot in the last 5 years, and two of Miska's friends who got MECFS in similar circumstances developed cancer due to MECFS lowering their immune systems low enough for cancer to grow in an untreatable way.
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<div>So Miska's outlook is bleak at best, and totally dark without medical help.
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<div>Now Miska needs others' help to change the trajectory away from falling apart completely and potentially dying.
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<div>Miska need help to afford specialist private medical help, as there is no public medical help for MECFS, and to help fund everyday disabilities necessities like living somewhere that doesn't overwhelm his immune system.
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<div>Miska has almost died from sudden MECFS complications, twice, and wants to avoid more near death experiences. Two of Miska's near friends have died from MECFS complications. So likelihood of a bad outcome without help are almost guaranteed.
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<div>Due to the severity of Miska's MECFS, he's become unable to continue the work he so enjoys, designing and coding for NGOs, charities and research institution, to make the world a better place. Thus he's unable to afford private specialist medical help and basic needs like housing that doesn't make him more sick.
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<div>Most of all Miska would like to go back to helping improve society through his design/programming work and volunteering. Miska has worked for the public good and volunteered teaching refugees web design/development, and also volunteered furthering citizen digital democratic abilitils. But right now Miska needs others help to avoid falling apart and potentially dying.
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<div>Two of Miska's friends, developing MECFS in similar circumstances, developed incurable cancers, as their immune systems couldn't fight the cancer. Severe MECFS affected see a similar short life expectancy as AIDS affected without treatment, as the immune system is similarly weak. Many MECFS affected even die before they're 30. The median MECFS affected life expectancy is about 17 years shorter than healthy people.
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<div>Proven advanced medical therapies are needed to better Miska. However, proven therapies for MECFS are not available in public health, as there's not been the money to clinically test them. Medical help for MECFS is only available through private medical specialists. Help for severely affected is even too expensive for an average middle class worker - IVIG therapy costing 3000-5000 euros a month - let alone those so ill they can't keep a job.
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<div>The former German health minister Karl Lauterbach, <a href="https://drive.proton.me/urls/7ADX013EH4#gycyHCc0zVMj" target="_blank" rel="noreferrer noopener">confirms therapies for MECFS are unavailable in pu</a> blic health, but that private options exist.
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<div>Miska has seen private specialists over the years, and tried nutritional therapies costing ca 600 euros a month. Despite this his health has declined and is in severe form, in the last years. More advanced therapies supporting the immune system are needed. Moreover, unable to work, Miska can't even afford the lower cost therapies.
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<div>About MECFS
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<div>I've written a longer google doc about MECFS and me, complete with scientific and media references here : <a href="https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?pli=1&amp;tab=t.0" target="_blank" rel="noreferrer noopener"><a href="https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?pli=1&amp;tab=t.0" target="_blank" class="" rel="nofollow noopener noreferrer">https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?pli=1&amp;tab=t.0</a></a>
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<div>In short :
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<div>MECFS is characterised by three changes to the body. The immune system is damaged and the MECFS afflicted is left without sufficient immune defence to handle basic disease and detoxification of the body. The formation of cell organelles (Mitochondria) producing cell energy from food, is damaged, such that the body doesn't produce much energy from food. And lastly, MECFS also means damage to blood vessels and a tendency to hyper-coagulate.
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<div>This means :
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<li>Lacking immunity : MECFS affected pick up very disease easily, often can't get rid of heavier chemicals entering their bodies, letting these damage the affected. Severe MECFS see similarly low immune defence as AIDS affected, and suffer in similar ways.
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<li>Metabolism (mitochondria) damage : MECFS bodies are variously underpowered as the food-&gt;energy production of the bodies is damaged, eg muscles are weak and organs may not function enough to sustain the body propery.
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<li>Blood vessel and hypercoagulation : Blood ends up in the wrong places due to blood vessel damage, and blood often doesn't reach peripheral cells as MECFS often have micro-coagulations blocking blood vessels. Muscles may not even have very much power with hypercoagulation blocking oxygen and blood from reaching muscles appropriately.
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<div>In Miska's life :
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<div>One of Miska's largest problems is his immune system is so weak it can't remove very common heavier chemicals, often designed to kill bacteria but not people, before it starts damaging Miska.
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<div>Much abbreviated : Miska's immunity is so low he can hardly be indoors and needs be in forests or by the sea to even be in tolerable pain. The chemicals of most houses and built environments cause substantial pain or cause Miska's lungs to stop breathing, and potentially for the gut to start bleeding.
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<div>As such chemicals are most places, Miska gets immense lung pain, when encountering these, and then pain inside the body as they enter the blood stream. Oftentimes Miska's immune system shuts down the lungs to prevent Miska getting more of these chemicals inside him. Likewise, Miska often gets gut bleeding after heavier encounters with such chemicals. In the worst case Miska was shitting blood 24 times a day for 9 days, from a heavy encounter, until he made it to the hospital, where it took two weeks to settle things.
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<div>Chemicals entering the body can also trigger the immune system to coagulate the blood. In one unfortunate episode, Miska got a lung blood clot from inappropriate exposure.
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<div><a href="https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?pli=1&amp;tab=t.0#heading=h.ahglgw67ajab" target="_blank" rel="noreferrer noopener">In the MECFS document Miska wrote</a> , this is described in further detail, complete with scientific references, here :
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<div>Lacking public healthcare for MECFS
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<div>Although there is important medical studies, research and some helpful therapies, for MECFS, due to lacking political priorities, there's hardly been any research money in public healthcare, to research or test existing MECFS therapies for inclusion in public healthcare. This means that although helpful treatments exist for MECFS - even ones approved for use in other immune diseases in public health - they're not available for free in the public health sector.
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<div>The former German health minister Karl Lauterbach, <a href="https://drive.proton.me/urls/7ADX013EH4#gycyHCc0zVMj" target="_blank" rel="noreferrer noopener">confirms therapies for MECFS are unavailable</a> in public health, but that private options exist.
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<div>Moreover, the head of the MECFS unit at the Berlin Charité public hospital, <a href="https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?tab=t.0#heading=h.v8zfqj8mifne" target="_blank" rel="noreferrer noopener">Dr Carmen Scheibenbogen details the problems for g</a> :
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<div>Miska has compiled a list of newspaper articles <a href="https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?tab=t.0#heading=h.shvbw0rpcoja" target="_blank" rel="noreferrer noopener">detailing lacking care for MECFS affected here</a> :
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<div>Finding MECFS in Miska's blood tests - what are the traces?
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<div>The MECFS characteristic Immune, metabolism and blood vessel damage leaves traces in blood tests. ( Note : one needs a MECFS specialist to order the right blood tests, as MECFS education is rare amongst non-specialists, and thus they don't order the right blood tests).
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<div>Each biomarker might not suggest MECFS, but seen together, they form a clear pattern.
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<div>Miska's blood tests values and explanation of the values are in his <a href="https://docs.google.com/document/d/1m1njq_5vnvcC2VHiJAkaK1xvk9xsuEFNFEY3n1GRlYM/edit?pli=1&amp;tab=t.0#heading=h.pvp49oddmcy3" target="_blank" rel="noreferrer noopener">MECFS google doc</a> :
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<div>Immune system :
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<li>Immune cells : a significant lack of main immune cells (eg Neutrophils make up ca 70% of the body's immune cells) is a characterisitc of MECFS.
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<li>Immune signalling : excessive amounts of signalling agents telling the immune system to attack (effectively everything) is characteristic of MECFS. Specifically high values of Immune Globulins IGM and IGG suggest excess immune reactions.
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<div>Energy metabolism:
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<div>If Mitochondrial DNA is found to be damaged, that's characteristic of MECFS.
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<div>The downstream effect, of poorly formed, and thus ill functioning, mitochondria organelles, is a clear effect of MECFS damaging Mitochondrial DNA.
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<div>Blood vessels and blood clotting :
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<div>Excessive clotting cells : excessive amounts of Thrombocytes. Thrombocytes are immune cells triggering blood clotting. With more of these there's more blood clotting.
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<div>Secondary signs in blood tests, of MECFS:
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<li>Low vitamin D values are often an indication the immune system is doing a lot of fighting with itself. This is what MECFS causes the immune system to do, and thus vitamin D levels are often found in MECFS affected.
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<li>Low levels of the natural antioxidant Glutathione are also common in MECFS affected, as the body uses up all its resources to fight off problems the immune system can't fight or eject.
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<li>The gut commonly sees damage with MECFS, so the Zonulin - a biomarker about leaky gut - is often bad.
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<li>To repair itself from damage, the body often uses Calcium, Iron and vitamin B. When these are low, one can fell the body has done much repair work, as is needed with MECFS.
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<div>What will gathered funds will be used for
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<div>Depending on how much money can be gathered, there are different scenarios.
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<div>Importantly, without meeting some basic needs, Miska's health will deteriorate very quickly. Miska needs continue living somewhere that doesn't overwhelm his body with chemicals or mold his weak immune system can't handle. Miska's immune system is so weak most houses make his lungs stop breathing, from being overwhelmed by chemistry or mould. This costs ca 1000-1200 euros a month in the Nordic region.
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<div>Basic nutritional therapy, costing up to 600 euros a month, is a helpful base layer of support.
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<div>Ideally, there's money to try IVIG therapy, which has proven helpful for many MECFS affected.
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<div>IVIG therapy requires immune profiling, costing 2000-3000 euros. Then each monthly treatment costs 3000-5000 euros.
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<div>Besides this, Miska's needs help to adapt physically to MECFS problems. Due to his immune system being overwhelmed by chemistry it can't handle indoors and in most built environments, he currently needs spend as much time as possible, except for sleeping, in nature. So outdoor gear and portable computing equipment would make his outdoor existence easier.
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Help Miska recover from a severely damaging immune disease

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