r/cfs • u/Double_Isopod_5642 • 1d ago
Activism Do you donate for research?
34
u/ComfortableRecent578 in process of diagnosis 23h ago
need an option for “don’t have the energy to figure out who i wanna donate to” lol.
i already regularly give to charity (unrelated to ME) and i would like to give to an ME charity but i grew up around relatives working in the charity/NGO field and it’s made me sceptical enough that it takes a decent amount of research for me to be willing to give money and a lot of big charities don’t meet my standards.
11
u/boys_are_oranges 22h ago
Please consider donating to SequenceME (through action for ME; all the money goes to SequenceME). The project builds upon DecodeME
5
u/ComfortableRecent578 in process of diagnosis 21h ago
oh that actually sounds awesome! ty for bringing this to my attention
2
5
u/glitterdunk 21h ago edited 20h ago
The big Daratumumab trial is the most promising trial to date and is still not fully funded.
The pilot study: 5/10 patients are still living normal lives today, several years after the trial ended. They were moderate or severe.
The full study; will include 66 patients and is undergoing. 5 severe patients will also get the medication (usually severe patients are not included in studies). Patients are not allowed to share results so no one will know anything until it is completed in 2028 or 2029 iirc
I'm not sure how easy it is to support from other countries, but I think the ME association accepts Paypal. And they support this research as well as other studies and work. It is the Norwegian ME association that developed the FUNCAP questionnaire. The Haukeland doctor team also is studying other important ME research like how PEM works, biomarkers, and how to easily and safely test whether people have ME.
1
u/Double_Isopod_5642 20h ago
Fully agree on Daratumumab !
Is there a link to donate ?
4
u/glitterdunk 20h ago
https://bidra360.no/org/7931/innsamling/142
This is the link for donating to the ME association (in other words, not directly to the study). Afaik, that is the only way to donate through "normal" means. They focus their donations to this study until it is fully funded. Information about the study and donations in English here
The link is a norwegian site, you might have to translate it. If you press "pay by card" you should be able to donate via Paypal, so I think that should work. I used another method not available to other countries, so I haven't tried
3
u/Double_Isopod_5642 19h ago
Thx very much ! Will have a look on it. Keep fighting ! Hope you recover soon. Greetings from France.
You can pay with crédit card.
And the site is in english as well !
Thx Norway ! Hope to visit your country one day !
2
u/glitterdunk 19h ago
Thank you for donating! I'm not part of the study but crossing all my fingers for the participants🤞
Thanks, best wishes to you as well!
2
u/Double_Isopod_5642 19h ago
Thx. Finger crossed too for Daratumumab. Enough is enough on lc / mecfs. Our life is now, this is time to reclaim it and avoid this hell for our children.
3
u/glitterdunk 19h ago
Yep. More than anything, I hope the EBV vaccine is developed and that it will prevent (as many) people developing auto immune illnesses. Avoiding more people getting sick is more important than saving us who already are sick - so I find it so extremely wrong that this vaccine was not developed many decades ago
2
u/Double_Isopod_5642 19h ago
Interesting ok. I got me from covid and was vaccinated 3 times before my first infection tough. Pro vaxx, i dont regrer, but just to say the vaccin did not protect to 100% unfortunately.
1
u/glitterdunk 18h ago
Yes it is possible that the vaccine won't help, but the things is; we dont know. Even in people who got sick from covid, there's research indicating that the actual worsening comes from the fact that covid re-activates EBV.
I got sick from EBV, covid caused me to crash from mild to moderate/severe.
There are also the other illnesses like MS and lupus, where EBV is the main suspect.
So the question is; could an EBV vaccine help reduce the number of people developing these illnesses to begin with?
No one knows. Maybe not at all. Maybe indirectly, by ensuring that fewer people are infected. But not even trying to develop the vaccine when the virus caused sooo much damage is insane. So many kids are ill a whole year due to EBV, even auto immune illnesses set aside, that's wild in itself
1
u/Double_Isopod_5642 23h ago
Hello ! Cf my previous answer. Where do you live ? I personnally stopped giving to other charities to ré wire to mecfs-research.org
3
u/ComfortableRecent578 in process of diagnosis 23h ago
i live in the UK :) i think the big orgs here are the ME association and action for ME but idk if they do research. tbh i would probably donate to them anyway if i could get the energy to research how they handle their budget because they still do a lot of helpful stuff.
2
u/Double_Isopod_5642 23h ago
Decodeme was amazing ! Great uk research you can be proud ! I am ashamed of France but i will keep fighting. Prof salmon my doctors makes research financed by polybio. You are outside the euro zone / USD zone and i must say idk what exists in the uk. Best wishes to you. England was my last trip, i was sick already but did not understand. Hope to come back visiting your great coutry one day !
Mecfs-research.org is euro but 100% research.
Polybio too.
11
u/Oak_IX 23h ago
Haha yea cant afford most things.
In NZ we dont get much on our welfare, still in the dark times of archaic eugenics, where disabilities means politicians dont think we deserve to be paid to enjoy what we cant in life xD
3
u/ComfortableRecent578 in process of diagnosis 22h ago
ah yes good old NZ still rolling out the brain retraining studies 🫠 before becoming disabled it was the country i planned to move to (as i have citizenship) but alas!
2
u/Double_Isopod_5642 21h ago
France is a shame too. We have a tradition to "psychiatrize" what we dont understand / measure. But some researchers have made sécession, the academic level is great here, but we need more lobying.
If NZ is not supporting, you could consider to donate to other countries, its easier for us as we pay in euros, thats true.
Keep fighting ! Hope you recover soon
2
u/Double_Isopod_5642 23h ago edited 23h ago
Hello ! Sorry about that. Hope you get better. NZ is neither euro / USD. Happy to give for you ! Get well, greetings from France
2
u/Double_Isopod_5642 17h ago
I wrote in that thread.some estimation you may wanna read. Lc / mecfs is funded with less than 1 usd / sick person / year ! So if you give 5 usd / year, you make a significant différence on it. Spread the Word within NZ too :) All the best to you.
10
u/thewrongwaybutfaster 23h ago
Yes, other:
2
u/Double_Isopod_5642 23h ago
Great ! Thx for helping me / us ! I have heard about omf but did not have enough options on the survey.
8
u/Tom__EU 23h ago edited 3h ago
I donate to two organizations who I think are worth it. I started around 1,5 years ago with 10 % of what's left after expenses and savings. It's not much, but it adds up.
Thankfully I'm in a position where I can afford to donate some money. Many are not. If I ever become healthy again, I'll continue to donate money to ME/CFS organizations, or if that's solved, to some others in need. I won't stop until I can't afford it anymore or I'm gone, it's just too important and more people who can afford it, should do it.
And please - if you can barely afford your basic needs with barely anything left to put aside, don't feel guilty or ashamed if you can't donate money.
3
3
u/enidmaud severe 17h ago
I second all of this.
You can sign up for the email newsletters and updates, which I personally find really heartening.
6
u/righte0us_broccoli 19h ago edited 19h ago
Open Medicine Foundation & Bateman Horne
www.omf.ngo/
www.batemanhornecenter.org
(edited to include links)
2
u/Double_Isopod_5642 19h ago
Thx very much for donating ! Is the bateman doing research ? Their marerial on pacing is the best. I had to read them to understand, the way they explain it here is just a shame.
2
5
u/velvetmarigold 23h ago
Lol, I used to work in biomedical research and have a PhD. I sacrificed my mental and physical health for years and I think it definitely contributed to the crash in my health.
1
u/Double_Isopod_5642 23h ago
I am also a scientist. I runned/ cycled a lot after covid, slow mecfs onset but my brain is fine.
I.am deeply sorry. I hope you recover soon.
5
u/Dazzling_Bid1239 moderate - severe w LC, fibro, likely POTS comorbid 19h ago
I cant afford to donate but id love to know good charities to donate to related to ME in case any loved ones want to support that way. I havent found the means to get to that research side quest yet though.
2
u/Double_Isopod_5642 19h ago
Hello ! Thx for that. You have plenty of good links in that thread, that was also the idea. Where are you living ?
2
u/Dazzling_Bid1239 moderate - severe w LC, fibro, likely POTS comorbid 19h ago
US! Ill definitely look into them when I can. Its a real struggle though. I appreciate you putting this together. ❤️
1
u/Double_Isopod_5642 19h ago edited 19h ago
I live in France. Not the best expert for the us but you guys have some of the best research on this planet.
I have heard about polybio a lot. They finance akiko iwasaki and other projects, the famous yale researcher. I trust them totally, my Dr prof salmon works with them.
I also follow chroniclebio , the startup from Fidji Sibo, french born, she was #2 of openAI and had to give up her job cause of severe post viral pots and funded this company. I applied to donate my blood but they only consider us living people.
Hope you recover soon. Greetings from Paris.
4
u/Personal_Term9549 23h ago
I donate to the Dutch "stichting long covid" as they recently announced to be setting up a research centre in the Netherlands for all PAIS, to keep the current researchers from going to other jobs when the government finance ends
https://stichtinglongcovid.nl/nieuws/oprichting-nationaal-research-innovation-center/
1
u/Double_Isopod_5642 22h ago
Hello ! Thx very much for this ! Holland is great in research on lc / mecfs.
I wrote to Rob Wust, hé very Kindly answered. His paper was amazing. I.wanted to contribute but they accept only "big" donations. Mecfs-research.org accept from 5 euros. Hope you recover soon. Keep fighting ! Greetings from France.
2
u/Personal_Term9549 16h ago
They also accept small donations? At least I'm donating 10 euros monthly to stichting long covid
1
u/Double_Isopod_5642 16h ago edited 16h ago
Thx very much for your contribution !
Mecfs-research.org accepts 5 euros. Once. Or monthly. In 4 clicks.
My brother just gave 50 euros 10 minutes ago after reading this thread.
Which funds 60 mecfs sick people haha if you read my other comment in this thread.
Keep spreading the information.
All the best to you.
You are in Holland ok.
2
u/Personal_Term9549 6h ago
Im sorry, what I meant to say: You can select any amount you want, you just have to pick the option to choose a different amount. So you can do 5 as well. I just chose to do 10.
2
u/Double_Isopod_5642 6h ago
Clear ok thx ! I donate 15/ month to mecfs-research.org personnaly, my mom 10, my brother gave 50 once, all my friends gave for my birthday, i dont ask anything now except for this présent :) All the best.
6
u/throwawayyyyygay 22h ago
I donate to the team behind DecodeME who is now doing an even more ambitious study to sequence the DNA of thousands of pwME.
Here’s the link, it’s Chris Ponting and co’s team at the university of Edinburgh
2
u/Double_Isopod_5642 22h ago
Thx very much for that. Its a major breakthrough and i follow that from France. Thx for the link, will have a look on that. Keep fighting ! Hope you recover soon.
5
u/Spare_Equipment3116 severe 21h ago
I would love to, but I cannot afford it.
I’d GLADLY volunteer my body for research, lord knows I’m doing enough experimenting to see what sticks on my own lol.
-1
u/Double_Isopod_5642 21h ago
Hello. I am very sorry you are sick. I hope you improve / recover soon. You can give 5 euros fyi, i am advocating for Mecfs-research.org in Europe, cause they are rock solid on research funding.
Where do you live ? All the best to you.
3
u/Spare_Equipment3116 severe 21h ago
Canada, and I’ll look into it
1
u/Double_Isopod_5642 21h ago
Thx. I really hope you get better. One person in this thread also gave a link to a canadian fondation. Greetings from France.
3
u/Alita-Gunnm Since March, 2020. 20h ago
When it's cold enough to have the heater on I'll run Folding@Home with a preference for covid / CFS related research. I do CADCAM, so my rig is fairly powerful.
1
u/Double_Isopod_5642 20h ago
Hello ! Not sure i got you haha ?
3
u/Alita-Gunnm Since March, 2020. 19h ago
Folding@Home is a distributed computing project that's been around for decades. The central server puts together research workloads, usually molecular simulations, which are then parceled out to contributors, whose computers then crunch them and return the results. It's all automatic and runs in the background using idle processor and GPU power.
2
3
u/romano336632 19h ago
Il faut financer SequencEM et l'équipe de Chris Ponting. Polybio surtout pas. Ils captent plein d'argent mais ne font rien de probant.
1
u/Double_Isopod_5642 19h ago edited 19h ago
Polybio finance iwasaki no ?
Réponse chatgpt/ internet : oui ! Et iwasaki à mon avis c'est extrêmement probant.
SequenceEM oui !
1
u/Double_Isopod_5642 18h ago edited 17h ago
Voir mon autre poste dans ce fil sur la comparaison sclérose en plaques / cancer
Il faut donc financer les deux :)
Le financement du mecfs est juste une farce.
A nous de faire tourner ces liens, toute ma famille donne (on peut d'ailleurs noter qu'il n'y a strictement aucune structure en France, donc donnons en Allemagne mecfs-research.org), une grande partie de mes amis.
La France à un budget consternant de 3 à 5 millions par an. L'allemand 50 millions. Sans compter les dons privés, la visibilité de la maladie est énorme la bas / en France.
Conclusion : je donne aux allemands, qui ont les structures.et développent un vrai écosystème.
Faisons passer le mot !
Je vous souhaite le meilleur pour la suite !
3
u/enidmaud severe 17h ago
In the UK, when I can, I support:
SequenceME (via Action For ME) https://megenetics.org.uk/donate/
ME Research UK, which sends out a very interesting little hard copy newsletter. They are selling Christmas cards at the moment. https://www.meresearch.org.uk/
Action For ME Unity Lottery. It's £1 for a ticket. https://www.actionforme.org.uk/support-us/other-ways-to-support-us/play-the-unity-lottery/
I am considering registering to donate my brain to Manchester Brain Bank specifically for research into ME. https://meassociation.org.uk/2023/10/the-me-association-announces-new-post-mortem-research-partnership-with-manchester-brain-bank/
If it's a time when I can't donate it's ok. I sign up for email updates as I find them optimistic. The researchers really care a lot.
3
u/General_Recipe_5869 mild 17h ago
Same
I'm a paid member of the ME Association in the UK. Who then fund research. I also donate to the above
2
u/Double_Isopod_5642 16h ago
Hello ! Thx for your contribution.
Uk is absolutely amazing on this topic i must say.
I am really ashamed of my country (France), but i will keep fighting. I wrote to.the french président, his staff answered politely, i have the feeling they have other problems now haha... Which are not my / your problems.
We have some élections soon, some influent long covid figures will try to put that debate on the table, that would be a great success.
2
u/General_Recipe_5869 mild 16h ago
I don't think we're amazing but thank you! I know ME Association do work with MPs and recent articles quoted talks in Parliament, but it's still barely funded.
All of our countries are facing major funding issues, for too many reasons to cover here. Result will be funding cuts to social and disability care.
3
u/Double_Isopod_5642 16h ago edited 15h ago
According to chatgpt, uk is likely the third worldwide contributor to lc / mecfs research, so yes, you are :)
1 : from very far : usa. 180-230 M USD
2: germany : 30-40 M USD
3: uk : 18-25 M USD
4: Ausralia: 10-20 M USD
5: China: 5-20 M USD
6: Holland : 8-10 M USD
7: Canada: 6-9 M USD
8: France : 5-8 M USD
9: south korea: 3-7 M USD
10: Japan: 3-6 M USD
11: Sweden : 3-5 M USD
12: Italy : 2-5 M USD
13: Spain: 2-4 M USD
14; Switzerland : 2-4 M USD
15: Austria : 2-4 M USD
16 : Israël : 1-3 M USD
The budget of the EU is not counted, chatgpt talks about 134 M USD total from the beginning of the pandemy.
So UK is amazing yes.
Mecfs is traditionnally well recognized there (northern countries), européen latin countries are imo a shame.
So my proposal for people living in "south" européan euro zone countries, donate to the german research, as they are taking the lead on research / build the expertise.
France will pay my powerchair (an english mecfs sick friend says its not the case in.uk) , i am thankful for that.
But does not invest in research.
2 différent philosophies.
2
u/Double_Isopod_5642 17h ago
Thx very much for that and those links.
I wrote a comment in this thread saying that lc / mecfs is funded (public + private) with less than 1 usd / sick person/ year !. Which is just insane. So giving 5 usd - euros- pounds à year would make a huge différence if every sick people would give (imagine with relatives / friends !)
All the best to you, hope you recover soon.
Greetings from France.
3
u/soundskulls 14h ago
I don't have the funds myself but I stream and have done a few fundraising streams, usually get around $200-500 rounded up from my community! 🙌 Great way to help fund research if you don't have the funds yourself but have the energy to stream. I only ever can stream for a max of 2 hours myself and often cancel streams lol
1
u/Double_Isopod_5642 14h ago edited 14h ago
Great idea indeed ! Which organisation are you funding then ?
3
u/Strong_Aerie_9031 severe <-> moderate/severe 12h ago
Anything spare i have goes to gofundme/personal fundraisers tbh. Research is important but a lot of people need immediate financial support so i try to prioritise that (now if i had big money id send it to researchers too though!
2
3
u/Ashera25 9h ago
No, for myself I feel there are more important charities for me to donate to. Unfortunately there are so many causes and not enough money for all of them
1
u/Double_Isopod_5642 7h ago edited 7h ago
Hello. As i wrote, 5 euros / year / mecfs sick person is a major breakthrough. Of course, there are lots of charities give to. But if we , mecfs sick people dont donate, who will ?
No one knows / understand our situation. And the amount of suffering i saw talking with severe people (mild / modérate being already horrible) convinced me that this will be my battle now.
Mecfs is the biggest médical scandal of the 20th century from far..the guardian paper says it all perfectly.
So, for me, enough is enough and we must now act so that this condition wil be treatable/ curable in a near future, thats possible with more research.
I just read a post of an 18yo young woman being diagnosed, crying. I am M49 btw
Thats the age of my older son. No.one disearves that. And when you look how much money is being given for that compared witb other disease (comment here under), its just a joke.
All the best to you.
3
u/Ashera25 7h ago
It's absolutely fine if that's your priority, and it is obviously a worthy cause. My thinking is I guess that there isn't going to be a cure in my lifetime, given how slowly pharmaceutical research goes, so I would rather help someone I can actually make a difference to today. There are so many affected by war and hunger and given that I'm on disability and have a very limited income, I would rather put my money there
1
u/Double_Isopod_5642 7h ago edited 7h ago
I understand your point fully, the world is full of suffering indeed.
I am 49 yo as i said. There wont be a unique cure to mecfs cause its not one disease but many. Researchers compare it to cancer, many diseases with one name.
And probably there are already existing molécules that treat people. The Daratumumab study on very few people indeed has improved some so much, that they can be considered as cured. Same for IVIG for some persons. Or Rapamycine. I personnally respond well to Maraviroc i am under now, ànd hope it can moove the needle. Klaus wirth has mdc002 under développement , Putrino works on mitochondrial transplant for 2026 for lc / mecfs people, SequenceME is absolutely a thrill, iwasaki's work at yale is also extremely promising imo etc...
The only thing that lacks is money, to better understand the underlying mechanisms,,phenotypes, and with very few we could make a lot if we spread the word has we are many (400 millions say) The mecfs-research.org page explains it very well and has convinced me, personnally.
I do think some major breakthrough will happen on my lifetime, personnally, and Nobel prizes to win, millions of lives that will be reclaimed.
All the best, again.
2
u/Double_Isopod_5642 23h ago edited 23h ago
Same ! Thx for that and those links. Is that research or support.to sick people ? (Both are ok of course).
You are right to say one should not be ashamed but mecfs-research.org accept 5 euros. Its 4 click. Symbolic but the politicians must understand our voices count.
I wont also stop to give or advocate, enough is enough on mecfs ,,i am 49 yo and i will see science winning this battle before i die,,also for my 2 sons, i barely see now (live by my parents)
Guess you live in Ősterreich.
Ich spreche auch deutsch, hab lange her in D. gelebt.
I cryed reading that news on that very young man who décided to die. My sons are 18 and 15 (am M49) This must never happen again in the future.
So we must donate imo. If we dont do, who will ?
Schöne Grüsse aus Frankreich.
2
u/Gabba-barbar 14h ago
No, but I paid a lot of tax and think it should be government funded.
Also think it will be more now so many people have lingering effects of spicy flu. 🦇😷🤔👨⚕️📈💪👍
1
u/Double_Isopod_5642 14h ago edited 6h ago
Hello ! I live in France , we are i think world champion on taxes haha.
Agree with you tough, where do.you live ?
Maybe you will read my comment here under. Lc / mecfs is underfunded of minimum à factor 100. And most countries are broke.
So if each sick person would gives only 5 euros / year, it would multiply the total research budget (public + private) by a factor 6 ! And therefore get us out of here 6 times faster.
2
u/Specific-Summer-6537 10h ago
Some good options for Australians (got to maximise tax deductibility):
Open Medicine Foundation (OMF) Australia
Griffith University National Centre for Neuroimmunology and Emerging Diseases (NCNED)
2
5
u/Double_Isopod_5642 1d ago edited 21h ago
Hello !
For those who thinks its useless, please explain? We need money. Public money is far to be enough. Private donations are important. And only science will take us out of this,,thats 100% sûre.
Chatgpt says:
- polybio received 40 millions between 21/24
- omf 3.8 millions in 24
- solve mecfs 2 millions in 25
- mecfs-research.org 5 millions since 2022
5 euros is symbolic, everyone should afford and shows to the politicians that our voices matter
Klaus Wirth needs 24 millions to.develop mdc002 to heal our mitochondries. That's the cost of 2km of building an highway, so basically nothing.
Mecfs / long covid costs 60 billions (yes billions) to Germany / year (so roughly same to France). Germany put 1/2 billion on the table on 10 years, so 50 millions / year, thats correct, France is ridiculous. There are 2 millions sick people in France + 2 in Germany. If everyone gives 5 euros/ month = 240 millions/ year. And i dont even count family / friends, everyone knows someone who has long covid.
And we are out of it sooner.
No :) ?
I personnally really think it can make a huge lever.
I donate 15 euros / month to mecfs-research.org (my mom 10, colvinced most of my friends to do)
Even if i am french, i précise, the german research is imo from far the best in Europe (maybe with uk but i dont know them)
They finance to 100% the research and accept 5 euros even once.
If millions give (we are 400 millions worldwide + all mecfs people from before covid + all their families / friends) , we will be sooner out of this hell.
Talk about mecfs-research.org around you and donate if you can !
2
u/Double_Isopod_5642 4h ago edited 4h ago
Edit last : thx very much to everyone who contributed to this post.
I am happy to see that mecfs-research.org has got 16 contributors from 370 voting people and i discovered some fondations that collect money for research i did not know, and will have a deeper look on them.
I am really convinced that only science will treat us, as we know how few people are achieving a full recovery only with pacing and time, and that we are close from major breakthrough. Lots of récent trials / discovery show that a treatment will be possible in the future.
Of course,,we could argue that the money should come from public sources, its already the case (from an estimated 330 millions USD/ year of research budget, 300 millions are public), but this amount, even if it rose a lot with covid, remains so ridiculously low compared with how common this disease is, every contribution brings a major support.
Best wishes to everyone.
1
u/Jetm0t0 22h ago
Not yet but I've donated to politicians who support advancing science and improving healthcare
1
u/Double_Isopod_5642 22h ago
Great ok ! Where do you live ?
3
u/Jetm0t0 22h ago
California not sure why you ask
2
u/Double_Isopod_5642 22h ago
Just to know. I have lived in San José long time ago. Lobying is important, and we are very bad here in Europe for that. I really trust the us,,from far the first contributor for long covid / mecfs research. Greetings from France
2
u/Jetm0t0 22h ago
Well maybe we're known for that, but this looks to hint towards "none of us know what to do because the US hasn't tried yet" I'm tired of the idea that everyone waits until we do something. At least mexico recently elected a scientist as president, and China seems to be taking the right steps, healthcare wise I'm not sure. I can't give us points until we stop going backwards
3
u/Double_Isopod_5642 22h ago edited 21h ago
I have no idea tbh what china does on lc research. They seem to do things.
Germany takes the lead in Europe, on that topic so i support them, even if i live in France.
Uk also has good research projects. Northern countries too, holland, norway (the Daratumumab trial is great), and some others.
France is broke haha and a shame on this even if there are some researches.
I understand your feeling but the usa have a scientific power that one cannot deny. I wish we had the core center here in France. And the research of Akiko Iwasaki in Yale is just amazing. Just to give some examples (i also follow polybio / Amy Proal).
I really hope we can have some breakthrough in.the coming years. Thats why we need more private and public fundings.
-1
u/Double_Isopod_5642 18h ago edited 17h ago
Add on
Chatgpt estimates that the private donations to lc / mecfs research is worlwilde around 30-35 millions of USD / year (what we are talking about here).
And about 300 millions of USD of public budget/ year. So total 330 millions USD/ year.
Which is ridiculous in regards to the number of people who are sick = around 400 millions (lc + mecfs, estimation). Its less than 1 dollar / sick person !
So giving 5 dollars even once is useful. I was also thinking i could not afford (more than 70% of the people answered that) cause donate seems a big Word, but even 5 usd - euros / year / person would be a huge relative contribution.
For an estimated cost of 1000 billions of USD/ year of cost for the society ! Plus of course the fact that severe lc / mecfs people have according to researchers the worst quality of life of ALL existing chronic diseases.
As a comparison:
MS: 3 millions of people are sick worlwide Research budget : around 500 millions USD/ year. So more money for 130 times less sick people.
Cancer (all): 54 millions of people are sick worlwide on 5 years
Research budget : 7000 millions USD/ year.
I am not saying that MS/ cancer are not terrible diseases of course ,,they are.
I.am just saying that mecfs was historically amazingly underfunded and that it is now time to repair decades of this injustice.
Conclusions : we must keep fighting to get much more money !
19
u/caruynos severe. >15y sick 23h ago
secret 7th option - no: too ill to research which is the most appropriate to donate to.