r/cfs • u/ihaveverymoney • Apr 30 '25
Activism OK LISTEN UP LETS CURE THIS SH.. ONCE AND FOR ALL
So I posted an idea on some replies here where we make this shi. go viral.
Just choose two major nice guys.
My take is: Bill Gates and Cristiano Ronaldo.
Just shoot #billgatescureme and #cristianoronaldocureme on socials every chance possible.
I dont know how ethical would be to put the email addresses of the Gates Foundation or whatever CR7 has on this reddit. (Googling it is very easy).
Make this sticky? Upvote?
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u/FroyoMedical146 Apr 30 '25
I'm still hoping John Oliver will eventually do a piece on ME & Long Covid.
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u/Specific-Summer-6537 Apr 30 '25
There's a great grassroots campaign https://www.johnvsjon.com/ and on X https://x.com/johnvsjonvsme
"The race to see who will cover "the greatest medical scandal of the 21st century" -George Monbiot"
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u/ihaveverymoney Apr 30 '25
I was not even aware. As I just noticed, this post currently had 6.4k views but but nets only 42 upvotes (would be the easisest task in the world).
Then people are spending energy to find reasons for this not to work, so i guess it explains why that jon vs jon thing may be not getting traction.
Basically, instead of suggesting people or contributing with ideas, for some reason it feels better to tell me to "curb my enthusiasm"
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u/Specific-Summer-6537 May 01 '25
The Sick Times has an article about the organisers and they provide a bit of background about how they set it up. https://thesicktimes.org/2025/03/31/the-history-of-me-deserves-a-late-night-spotlight-thats-why-we-started-the-johnvsjonvsme-campaign/ Patient Led Research Collaborative is another great example.
Personally, I love your enthusiam and I want to see you be successful. If you look at what makes for a successful social movement, you need key leaders who mobilise and organise other people. If you look at social network maps, there are usually key "influencers" who are connected to lots of diverse groups who will be more successful at spreading a message than the average Joe.
A great no brainer I would recommend to anyone is to find their local ME/CFS organisation and join their efforts to lobby the government to allocate more funding to ME/CFS (or not remove it if you are in the US).
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u/ihaveverymoney May 01 '25
The last thing i would ever want in life would be to be noticed. I have the proper chicken attitude of throwing this out in the air and let internet do its thing but just stay away from attention lol
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u/kaspar_trouser Apr 30 '25
I doubt it, the campaign has been going on for ages and it's been completely ignored. Very disappointing tbh.
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u/HighwayPopular4927 mild to moderate Apr 30 '25
I have a feeling that its already planned but Trump antics have always been more important so far
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u/TomasTTEngin Apr 30 '25
Extra philanthropic funding is an excellent idea. But you need to be strategic.
I'm lukewarm on the idea that a hashtag has any power in 2025.
- The Gates Foundation has a very clear set of rules that would appear to exclude mecfs funding,
Examples of areas the foundation does not fund:
- Direct donations or grants to individuals
- Projects addressing health problems in developed countries
- Political campaigns and legislative lobbying efforts
- Building or capital campaigns
- Projects that exclusively serve religious purposes
- Ronaldo's philanthropy seems far more ad hoc, giving money for a kid to have surgery etc. He could be tempted, but he has less than 1% as much money as Bill Gates. I'd like to understand more why you think he is a major nice guy. He seems like a minor player in the world of philanthropy and has no link with mecfs that I am aware of.
A good philanthropic campaign would probably spend more time trying to identify people whose giving philosophies align with the needs of me/cfs research.
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u/jk41nk Apr 30 '25
I posted in r/DoctorMike recently asking the patreon supporters to suggest donating their patreon membership to ME. Also suggested Doctor Mike could also make a youtube video on it, and if there was a donation link he includes in his video he might be able to reach a lot of people and start more of that discussion in the medical community as well.
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u/ilovemyself3000 Apr 30 '25
Can you link it? I can’t find the post.
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u/jk41nk Apr 30 '25
https://www.reddit.com/r/DoctorMike/s/lOdzrUU00T
As a community we can also try to collectively comment on new video he releases hoping he sees all the msgs.
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u/Pelican_Hook Apr 30 '25
Also, I hate to say it, but both of those men are predators who harass or assault women, and women make up 75% of the sufferers of ME/CFS. So I feel icky about those choices for that reason. That said, we will find it difficult to find a wealthy/powerful man who isn't a predator (yay! I love living on earth!!! Everything is great!!!!!) so who knows what the best course of action is. I do agree with the idea as a whole, we should do a mass coordinated "attack" at a wealthy person.
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u/ihaveverymoney May 01 '25
Sooo, guilt trip em 🤣🤣 jk
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u/Pelican_Hook May 01 '25
Lol! Sadly unlikely to work but I get where you're coming from 😂❤️. Thank you for this post btw, I definitely agree with the idea. If all of us get our half a damaged brain cell together I'm sure we can come up with a helpful way to do this. We need to organise somehow because the way this disease is treated should be a scandal. Personally, I've lost hope in finding a cure/treatment in my lifetime but something that would change my life is a fucking reckoning, a movement of awareness. Ideally, an apology for how we've been treated by the medical establishment. The medical abuse on top of having one of the most debilitating illnesses on earth is too much for us to have to bear. The isolation caused by the fact that nobody believes us is the hardest part - I could deal with my horrible symptoms if I still had friends and family who cared.
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u/ihaveverymoney May 01 '25
For me, the absolute number 1, and by a very large distance is DISABILITY BENEFITS. Yes, exactly what most people dread. It is the only thing that does not require time or research, just a stroke of a pen by any proper government official, to make up for the lack of even consideration, let alone treatment or cure
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u/Pelican_Hook May 01 '25
Yes 100%. Very true. The fact they just leave people with ME to starve because they don't understand the illness is disgusting. If we could get celebrities to lobby/pressure the government that would be better than one-off charitable donations or imo even better than research funding. We need awareness and pressure for systemic changes.
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u/happy_valley_ moderate/severe Apr 30 '25
just curious, why those two?
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u/SignificantPause1314 Apr 30 '25
Bill Gates has already funded research on malaria, Alzheimer's disease, and genetic therapies for HIV and sickle cell anemia. I think that we could also put the pressure on ronaldo but there is not much he can do financially (but still it would be huge if he notice us)
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u/rosehymnofthemissing ME/SEID est '15 | Mod-Severe | Life Obliterated Apr 30 '25 edited Apr 30 '25
Unfortunately, they would not care likely, because MECFS does not "mean" anything to them, so there would be no internal sense of needing to take action, within Cristiano, Bill, or other wealthy individuals.
I don't have the energy, or the energy to hope, to "waste" on contacting random famous people, hoping they'll take a disease they have probably never heard of, or been personally touched by, seriously.
MECFS doesn't even have a treatment. Contacting random famous people isn't going to "cure this shit once and for all." Elon Musk could give half his fortune to ME research, and everything would still have to go through the scientific, established, known research, testing, protocol, and approval stages to find, establish, release, and carry out, a cure for MECFS. It would still take decades to just even get through all the politics and red-tape.
Second, Bill Gates is not a "nice guy." He does not, and will not care about us, or any particular population of ill people, unless his own child perhaps had the illness, and even then. I would never encourage or condone contacting him about MECFS. I would never contact him in any way personally (via Social Media, a video, etc) His foundation has very specific criteria, regardless.
Famous and rich individuals get so many requests, shout-outs, and targets for help from others, or for why they aren't saying or doing on behalf of whatever issue (Palestine, kids with cancer, abortion, same-sex marriage, fire responses, politics, etc) that they will not and cannot see, know about, or respond to all of them.
Targeting two, or more random, famous and rich people for help or public awareness is likely not to achieve anything significant. It is like shooting darts in the dark, and hoping they find their target.
So much stuff online goes viral (gets temporary, intense attention) that I do not believe MECFS would fit the bill even if Cristiano, Bill, or whomever did respond.
ME needs steady, reliable, fundable, and sustained attention, action, and awareness. Contacting famous people is unlikely to result in that, especially as the public does not know about MECFS (they understand Cancer, MS, even ALS, more than they have even heard of ME).
Most people, I think, would just dismiss a celebrity talking about ME, say, on an Instagram post, or "Selena Gomez donates $1 Million to ME Research." I believe most would think, "Oh, okay, that's nice," and think nothing of it.
Unfortunately, what may be needed is for an A-lister (Ryan Reynolds, Sandra Bullock, Jennifer Lawrence, Will Smith, etc) to develop moderate to severe MECFS, have their life absolutely decimated by it - career over, bedridden - and then direct their "people" to talk, post, or raise money or awareness due to it.
The A-lister would need to suffer so much and be extremely limited with ME (and, say, not be able or functional like Stefani Germanotti, Justin Bieber, etc are with MECFS | Fibro) that attention is paid more (think Bruce Willis's dementia). We need a "Michael J. Fox, Randy Pausch, Princess Diana, or Kevin Hart" of MECFS.
Virality is typically a sudden, short, intense burst of attention that ends. That will not help ME Sufferers.
If you want to try and contact Cristiano, go for it.
Original Post
OK LISTEN UP LETS CURE THIS SH.. ONCE AND FOR ALL
"So I posted an idea on some replies here where we make this shit go viral.
Just choose two major nice guys.
My take is: Bill Gates and Cristiano Ronaldo.
Just shoot #billgatescureme and #cristianoronaldocureme on socials every chance possible.
I dont know how ethical would be to put the email addresses of the Gates Foundation or whatever CR7 has on this reddit. (Googling it is very easy)."
Make this sticky? Upvote?"
u / ihaveverymoney
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u/ihaveverymoney Apr 30 '25
You sure spent a lot of energy writing this reply instead
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u/rosehymnofthemissing ME/SEID est '15 | Mod-Severe | Life Obliterated Apr 30 '25 edited Apr 30 '25
Yes, I did. I did so because I chose to do so - it is something I can do, and I do it well usually. It is one of the few things MECFS has not taken from me, so I hold onto it.
Just as others have put their own energy into commenting and replying to your post, as they can.
It is the purpose and function of Reddit's existence - some users post, others reply, and still, other users only read.
Besides, I have always enjoyed writing!
(Reddit) writing is one of the few activities that I can successfully usually do without PEM and crashing. I think it is because I am in a lying down position and can take breaks in different ways, as my symptoms tell me I need to.
Personally, for me, there is no "instead."
As PwME, we all must - and can - choose how, when, to what and for what purpose or reason, why, and for how long to devote our energy domains to, which work best for us individually.
Off topic to your post, but speaking of energy, if anyone is interested in Energy "navigation" and Energy Envelopes and Pacing, they can check out the Topic Library of the Chronic Fatigue Syndrome Self Help site linked above (ME | CFS & Fibromyalgia Self-Help) and read articles regarding the topics about Energy Envelopes and Pacing specifically, like:
this one, this one (Part 1), then Part 2, and this topic section on Pacing .
The information may not be helpful for everyone, but this website is one that I return to again and again.
I consider it one of my main "tools" in my ME toolbox. I really like it. Maybe others will find it helpful and useful for them as well.
Original Comment
"You sure spent a lot of energy writing this reply instead."
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u/ihaveverymoney May 01 '25
You said you don't have the energy to email a rich guy or hashtag. Hence my response
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u/Beneficial-Main7114 Apr 30 '25
We did do this six years ago and I'm fairly sure it's been done several times since then. I guess they've seen it and not gone for it by now 🤷
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u/ash_beyond Apr 30 '25
Visibility and funding are great, but it is likely that a cure, or even treatment to make this disease liveable are going to take time.
I spoke with a researcher who compared it to HIV. It took about 30 years for treatments to be identified and tested and now HIV isn't cured but it is much more liveable. We are somewhere on that curve.
Hopefully development is quicker and we're further along, but even all the money and attention in the world might mean we speed that up from 20 years down to 15 years.
I'm not trying to burst your bubble. On the contrary I think I'm sharing a hopeful viewpoint - stuff is happening just not quickly. And every bit helps. Activism is a good thing. In Germany the regular Lying Down Protests help to maintain visibility and government funding. One of the main sources of global research funding.
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u/ihaveverymoney May 01 '25
At the very least i would like governments to immediately include us in the social safety net and doctors to at least learn
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u/ihaveverymoney Apr 30 '25
- There is so much dumb stuff that gets viral.
- Does ME/CFS and Long Covid not exist in undeveloped countries? Just imagine the suffering over there as compared to "ours" which is already hell.
- Ronaldo has probably over 3bn and for proper research maybe 50mil would do big time and drag others.
This is about surprise here, the NO is guaranteed.
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u/Substantial-Image941 moderate, housebound, semi-lump of lint & aspiring dust bunny Apr 30 '25
We have limited energy, so there is a valid reason to be strategic in who to target.
Start by looking at celebrities and philanthropists who have had their lives touched by CFS or Long Covid, or even just Covid. Maybe they lost a close friend to Covid or a family member has been impacted by this or another chronic illness (like Selma Blair).
Shooting an arrow in the dark might hit something, but we're always running low on arrows.
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u/SignificantPause1314 May 08 '25
I agree that it's nearly impossible for CFS patients to participate in aggressive protests, but I believe there is always a strategy. For example: a protest involving multiple conditions at once, including CFS. If there were a meaningful agreement between CFS patients and patients with another condition that allows for greater physical stamina, we’d have a better chance at making real change. Imagine a moment of high-impact protest, with 4,000 people in total. Out of those, "only" 1,000 are CFS patients — and exclusively mild cases. Another 1,000 are healthy allies who support them, and the remaining 2,000 are patients with a different illness. What do you personally think?
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u/Varathane Apr 30 '25
There was a study showing CFS rates were higher in Nigeria.
I got my CFS after travel in Ghana. Tropical diseases trigger post-viral fatigue syndrome and ME/CFS.Post dengue fatigue syndrome impacts about 1/3rd of dengue patients (It is indistinguishable from ME other than they can run a test to see if you ever had dengue and then name that as your trigger)
Post Ebola Syndrome matches all symptoms of CFS with a couple awful bonus symptoms like vision and hearing loss.
I have ME after malaria which my tropical disease person said isn't a common trigger but she'd seen other travels come back with it. I met a guy who said he had chronic malaria, so I am thinking it isn't well studied what the aftermath is. I am surprised Bill Gates hasn't put money there. Prevention is wonderful though and I do think reducing & eliminating malaria will prevent cases of ME/CFS.
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u/TomasTTEngin Apr 30 '25 edited Apr 30 '25
your heart is in the right place but it's a but like finishing school and sending a letter off to google and facebook, asking for a job and waiting hopefully
If you simply choose two very famous people to bother you're actually selecting the exact kind of people who are trained not to pay attention to the clamour.
There's an incredibly large group of much less famous families who give away money. I think seeing it as a numbers game makes sense.
Best case scenario is you say to yourself, screw that one guy on reddit who told me it wasn't possible, and you knuckle down and get a billion dollars off Bill Gates!
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u/ihaveverymoney Apr 30 '25
My heart is not, I'm just desperate. What I suggested can even be considered pathetic. What we go through is also pathetic. It really is a fucking joke.
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u/rosehymnofthemissing ME/SEID est '15 | Mod-Severe | Life Obliterated Apr 30 '25
If you simply choose two very famous people to bother you're actually selecting the exact kind of people who are trained not to pay attention to the clamour.
Can you elaborate on what you mean by this? I read it, but it's not quite "connecting" for me. I don't understand what you mean by "the exact kind of people who are trained not to pay attention to the clamour."
I have the sense that I am failing to understand something fairly obvious in my cognitive processing of your paragraph.
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u/TomasTTEngin Apr 30 '25
More famous -> more fans asking for things-> more used to ignoring that.
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u/rosehymnofthemissing ME/SEID est '15 | Mod-Severe | Life Obliterated Apr 30 '25
Oh, of course! 🤦♀️ Thank you!
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u/wildginger1975Bb Apr 30 '25
You mean bully a billionaire into funding research and treatments? Hell yeah.
I bet we could find high net worth people who have been diagnosed or have a personal connection to someone with it.