Maybe we should all tweet at Elon?

[GlassCannonLife]

I was just thinking, Elon Musk is generally up to twitter shenanigans and does wild things occasionally.

Perhaps on #millionsmissing 12th May, we should all @ him in tweets asking him to end the suffering and help solve ME/CFS and LC?

Obviously a long shot but even just getting him or his friends (?) to think about it might help somewhat.. Thoughts?

 

[VisualEffect]

100% good idea, this disease is a riddle that needs to be solved
Because when it's solved, there will be a major breakthrough in medicine and SO many people will benefit.
This fact must raise interest for people like Elon

 

[Treeman]

Start the campaign now!

 

[Alvin2]

Go for it.

 

[GlassCannonLife]

Thanks @VisualEffect!

Yes this is the campaign haha @Treeman

@Alvin2 I will! Are you with me?

We should try and spread the word to our friends/family that have twitter. If we each get a few people then there could be hundreds or thousands doing it.

I'm too ill at the moment but perhaps someone could make a (or multiple) posts on reddit about it?

I feel like the only way we will get more funding is if we secure a celebrity/highly influential person, or a highly influential group (eg woke crowd, lgbtq+ crowd, hiv/aids crowd, etc).

It would essentially have to be:

1. Influential person/crowd draws a bunch of attention to the topic (or helps directly eg Elon..)

2. Less prominent influencers, minor celebrities, minor groups etc pick up on the hype and spread the word

3. The public finally gets into it

4. Politicians see the demand coming from all of the above, and include the illness in their campaigns and priorities

5. Funding bodies see the political and social demand, and increase funding


I don't think we'll be able to get anywhere without this type of hype train evolving - it seems to be what is needed for this type of change to happen.

@frozenborderline thoughts? Or @Martin aka paused||M.E. , you're a very active community advocate.

 

[Alvin2]

I don't do social media so you have my moral support but not tweets by Alvin.

 

[godlovesatrier]

The issue for me is it has to come from governments really. Donations to individual charities aren't usually worthwhile. I am not sure who he'd give the money to for it to have real impact.

 

[Nuno]

That is an insane idea!! Let’s Share on the Discord and on twitter already so that everyone knows that the goal is to get Elon’s attention

 

[Alvin2]

The issue for me is it has to come from governments really. Donations to individual charities aren't usually worthwhile. I am not sure who he'd give the money to for it to have real impact.

My suggestion would be to put together a team of us to accept requests for funding and the team decides who gets how much money.
I wish i could say its likely Elon would give us something, but if a pot of cash did become available we should be very careful about who gets it and how much.

 

[Rufous McKinney]

I'd expect Musk to solve our carbon problem, rather than a medical issue.

But there are very rich folks who like to fund medical issues.

 

[GlassCannonLife]

Indeed, the idea isn't necessarily to get a pot of money from Elon, while that would also be useful, but to stir up the media and get him to maybe respond/retweet things and get some momentum in the global community.



ME is very much a hidden illness. Eg despite working in the same building and on the same floor as Prof Marshall-Gradinsik for a while before I became ill, and also working in medical research, I barely knew anything about ME/CFS at all.. I knew the name "chronic fatigue syndrome" but nothing about how bad or underfunded etc it all was.

 

[Marylib]

Long Covid may get more traction these days - but why not? As for the money, I'd say put it towards something people have tried to raise money for and have never succeeded: Practical help for people - housing for those who do not have family support, spouse or caregivers. AMMES - the American ME and CFS Society does its best to raise funds for homeless patients or those on the verge of being homeless, but it's not easy going. Elon can build a place in a suitable climate, with accommodations, hire caregivers - in several countries. He seems more interested in space travel but I think he did basically buy up a town in Texas. Living in Texas where medical care is slim to none unless you have money - is a chilling thought, but respite for caregivers is also an unmet need.

 

[godlovesatrier]

I still think it needs to be government lead, I mean I can't think of any philanthropist or charity that's conquered an issue as big as ME's gas lighting, medical negligence and total lack of accessible treatments (especially outside of the states or good areas of the states). I mean Richard Attenborough was a philanthropist who setup the Citizens Advice Beurua in the 1970s with entirely his own money. At it's height it had 150 offices throughout the entire country. It's a shadow of it's zenith because he died in the noughties. But truthfully he's one of a kind, as is Bob Geldof, I think after that you're hard pressed to think of anyone who's had real impact.

Honestly I think we stand to gain a lot more from long covid, it's a bell weather moment. If things don't change for LC patients we've got not a cat in hells chance. I also think we could see the next fifty years dedicated to the dissection of virology and immunology in a way we've never seen before. Which means new understandings, new treatments. It won't be rapid sadly and too late for many, possibly even myself.

Prob a rather depressing response but when you have this avalanche of people (just normal people) who are thick as shit and can't accept the science, we have a existential issue, much like climate change denial. I believe we have no hope in hell of traveling to and colonising other planets until we understand the body and immune system specifically in excellent detail. So I see this as vital to humanitys survival.

 

[Viala]

I was just thinking, Elon Musk is generally up to twitter shenanigans and does wild things occasionally.

Perhaps on #millionsmissing 12th May, we should all @ him in tweets asking him to end the suffering and help solve ME/CFS and LC?

Obviously a long shot but even just getting him or his friends (?) to think about it might help somewhat.. Thoughts?

This is a great idea! Let us know how it goes. It would be so sweet if we got Elon into it.

I suppose one clever twit could bring loads of good attention to ME, public awareness and funding, but I think best without mentioning long covid. It would be great especially when linked to some short documentary about ME, so that anyone could find out right away what it is.

That would be for us, because we are censored by our illness and unaware doctors, kinda like twitter censorship that Elon is focusing on lately? Just thinking out loud. We don't have much voice. Bring us voice on twitter. Voice to those who are not heard loud enough.

 

[lenora]

I think we'd get more mileage if we contacted someone like McKenzie Scott and hew new husband. (Former wife of Jeff Bezos). She has recently donated another $2B for education and some medical assistance.

Elon has a one track mind and is zeroing in on Twitter for other reasons at present. He has done a lot for humanity and expect he'll do more in the future....but he's an engineer at heart and that must be remembered.

It must get very confusing and tiring to be an ongoing philanthropist. So many orphan diseases, so much need and a person who thinks of such things will feel this great responsibility. It's a worthy though to contact her and I support it. Yours, Lenora.

 

[Alvin2]

I still think it needs to be government lead

I would be ecstatic if the NIH put $100 million dollars into ME/CFS research but its not happening. One avenue is to convince governments to invest in ME research.

I think we'd get more mileage if we contacted someone like McKenzie Scott and hew new husband. (Former wife of Jeff Bezos). She has recently donated another $2B for education and some medical assistance.

This is also a good idea.
In the past i had started a thread on approaching the Bill Gates foundation.
In the end we need to approach every entity with money and fundraise as a coordinated outreach and get money where we can and even more important making sure the money gets to where it will have the most effect.
This last part is crucial, i have seen good money wasted which could have done a lot of good if it was allocated better.

As for approaching all the various entities who of us has the experience or more importantly stamina/cognitive function to do it.

Most charities spend 5-20% on advertising. We should not clone this but it does show that raising money costs money.
If i had the functioning/was able to fundraise and had some seed money i would put together a paid team (you do need paid people who will work on this 40 hours a week) whose jobs it would be to approach every targeted entity and just as importantly when money is donated setting up a competitive grant process where researchers could apply to us for money and we decide who to give how much money to.

 

[Alvin2]

I'm crossposting form this thread
https://forums.phoenixrising.me/thr...on-the-risk-of-post-exertional-malaise.87553/

Has anyone told David that he should advertise his work among covid fundraising drives, being very well known and very prevalent he would hopefully get far more fundraising money form long coviders than he could from us.