Help Miska battle a severe immune damaging disease, MECFS
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Alas, as little as I like to beg - and it makes me sad to need to, every time - I could use some help for medications and daily expenses, battling a severe immune damaging disease, MECFS - which leaves half the affected dead before they’re 58 years old (2016 USA study), after many years of painful disease.
There’s no support from public health, and one’s left fighting it alone, with as much private medical help as one can afford… which is little, if one’s unemployed.
MECFS makes one sick from the smallest of things, feeling like I’m continually being beaten up. Half MECFS affected die before they’re 58, according to USA studies. I’ve already almost bled (internally) to death and had a lung blood clot from MECFS, and can attest to it being potentially fatal.
On a daily basis I feel like I’ve been beaten up and have a lung infection.
I even get bruises, a large part of the immune system is in the blood vessels, and you get damage there too.
(I’ve written about MECFS, costs and scientific research further below. I’ll keep things short here. )
It would be super great to be able to afford 100% of recommended medication for a few months (500 euros a month) and to repair or replace some clothes that have broken along the way, so I have at least one pair of trousers, a shirt and shoes that don’t have big holes in them.
Even better would be to afford longer term therapies, like that which immune damaged HIV/AIDS and Cancer patients get - IVIG treatement and stem cell replacement - but these cost 1000s of Euros a month.
200 euros for everything, is what I have left, a month, after I pay for 40% of basic medication, transport and telephony. Even with 40% medication, I feel pretty crap.
Meanwhile my clothes and other things have fallen into disrepair, and could, despite repairs, use replacing.
It’d be nice to have one pair of trousers, a shirt, and shoes that don’t have big holes in them. People really look at you funny with broken clothes.
The details - - - - -- - - - - -- - - -
MECFS
MECFS damages the immune system, blood vessels and body’s ability to get energy from food. You get ill from the smallest of things, and you feel like you’ve been beaten up.
Half people getting MECFS die before they’re 58, and have a similar life expectancy as those contracting HIV/AIDS, as the immune cell count is similarly low.
I’ve written about MECFS, with scientific research references - and my own blood tests - here :
https://docs.google.com/document/d/1LRkWYoOBK3bjnuEhyvcg5x_pEFg626WFhNImKpzU2D4/edit?tab=t.0#heading=h.ahglgw67ajab
About 60% of MECFs affected die from developing cancer, cardiovascular issues or inflammations, their immune system is unable to fend off.
(20% kill themselves, but you can imagine why, with huge pain and no public medical help)
There’s no public health help - the situation is a bit similar to HIV/AIDS in the 70s and 80s - although medical research and some therapies exist. Without sounding conspirational, much public medicine is politics, and there’s not been political support for MECFS in public health, although many of the mechanisms are understood.
Patient stories underly this :
https://docs.google.com/document/d/1LRkWYoOBK3bjnuEhyvcg5x_pEFg626WFhNImKpzU2D4/edit?tab=t.0#heading=h.shvbw0rpcoja
And even ChatGPT will corroborate this :
What can one do?
Specialist recommended medication can help the immune system, keep one going for longer, but the kind of immune support of HIV/AIDS and/or Cancer patients, is needed. That includes immune infusions (IVIG), stem cell treatment, and/or blood cleaning (apheresis).
These therapies cost thousands of Euros a month.
(Frustratingly, MECFS affected get similarly low immune cell counts as HIV/AIDS patients, and some cancer patients following cell toxin treatments, but get none of the immune support treatment. Even ChatGPT explains the problems - see below ).
I’ve detailed this below :
ChatGPT mirrors my own experiences with lack of public health, and the costs of private health, quite accurately. Have a look here :
My own receipts from doctors’ visits, blood testing, and suggested therapies, are here :
( A large frustration is that these treatments are offered to cancer patients, in public health. who get immune problems from cell poison treatment, but not for MECFS patients ).
Recommended medication and supplements
The supplements are mainly for boosting the immune system, helping mitochondria, and blood vessels integrity - key body organs damaged by MECFS. You can see from my blood tests, that I have problems in these areas.
https://docs.google.com/document/d/1IbUV6gKHlb0zes1sNV0q_KetidWG1RUfWYpSdRvK6T0/edit?tab=t.0#heading=h.pvp49oddmcy3
I’ve been recommended the supplements by two private specialists, who I can’t quite officially, but Dr. Leo Galland, who’s been active in the field for decades has made a guide for relevant supplements corresponding to what I’ve been recommended (page 8 specifically) :
( you can hear an interview with him here : https://www.tlcsessions.net/episodes/episode-61-dr-leo-galland-a-functional-approach )
Research links to effectiveness of said supplements, for MECFS :
Paper : Nutrient Therapy for the Improvement of Fatigue Symptoms
Paper : Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence
Paper : Mitochondrial Dysfunction and Coenzyme Q10 Supplementation in Post-Viral Fatigue Syndrome: An Overview
Paper :
Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related Quality of Life in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Randomized, Double-Blind, Placebo-Controlled Trial
Paper : Effects of nutrients (in food) on the structure and function of the nervous system: update on dietary requirements for brain. Part 1: micronutrients
Podcast interview with MECFS specialist, MD Dr Leo Galland (functional health specialist)
Nutrient recommendation from Dr Galland
Dr Galland’s nutrient recommendations on page 8 here :
Costs of supplements :
Here’s my list of supplements with a good balance of price and performance ( one can pay 2-3 times more for similar supplements, if one is not careful )
https://docs.google.com/spreadsheets/d/1jX_d6Z-QACBP33BTlFFtmbZJg_OljtjX2ImoRFbb-y0/edit?gid=0#gid=0
Cost of private specialist visits, blood testing, in Finland and Germany :
Receipts from buying supplements - to show I’ve actually been buying these things before
Organizer
michael miska knapek
Organizer
Berlin, Berlin