UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024

Seems more than a bit odd that there is no available information as to who is behind this, especially as they seem to be expecting to fund it all via crowdfunding, which essentially will mean the patient community. I look forward to learning more.
 
May be well intentioned but anyone dipping into the pockets of sick people and their families should set out who they are and aims clearly and in sufficient detail to be transparent than two lines on twitx and a PayPal account
 
And especially not a paypal account in the name of one individual who could simply take it all for themselves. I'm not suggesting this individual would do that, but I agree that asking for money requires proper protections.
 
A couple of more tweets from them.

"Have an idea that needs the spotlight? Here's your chance! Recommend a topic for a public session!

How ?

Post your own tweet, mention your topic, and use #UniteToFight2024.

The most mentioned topic takes the stage! at our global conference Let's shape the conversation together!"

and

"We are organizing the biggest #LongCOVID and #MECFS conference ever.

Scientists. Researchers. Politicians. Relatives. Those affected.

2 full days. 18 hours 100% online

From Finland to South Africa From the USA to Japan and New Zealand.

With accessibility, free access and a modern interactive model, we make the diseases "attractive" for the general public and thus promote discourse and progress!

This is the tweet!"
 
Andy said:
I have just asked
"Hi there. Do you have a website, or other source of information, with details on who is organising this, when and where it will be, how much will be needed, etc?"
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To which they responded
"Our website is currently under construction. There you will find more information and a registration form for the conference. In the meantime, you can contact us at mail@unitetofight2024.world"

I will wait to see what information they present to the public.
 
Trish said:
Can someone on Twitter ask them for more information, eg a website for the conference and who is behind the organisation.
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People have asked for further information. Thus far there haven't been responses that haven't been extremely vague. I believe this mainly has to do with this being run by patients who have no background in organising or attending scientific conferences and don't have a research background but are more Twitter oriented so might have primarily been interested in first gaining some traction there.

I'm guessing it might still take a while before they work out in what direction they want to be heading.

Apparently a website is being set-up right now. Looking forward to learning more.
 
Looks a lot like an internet grift right now. I hope it isn’t, but choosing PayPal over a fundraising platform like gofundme, and announcing a conference before setting up the website raises more red flags than a Swiss flag parade.
 
The link to Paypal has been removed from the Twitter account bio but so far nothing has replaced it. I'm surprised that so many researchers seem happy to put their name to something that, publicly at least, seems to have so little substance, other than an enthusiastic social media account.
 
NelliePledge said:
I wasn’t asking you specifically @Andy maybe others will have picked up
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This was posted, suggesting a team-effort: www.twitter.com/user/status/1754586147295019333. However going by other posts it seems these people don't really seem to be too involved: www.twitter.com/user/status/1755145756229378352.

Andy said:
I'm surprised that so many researchers seem happy to put their name to something that, publicly at least, seems to have so little substance, other than an enthusiastic social media account.
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I'm thinking that most of them were happy to just say yes to a patient organised event which will only take 20 minutes of their time attending a zoom call, especially since patient efforts have been emphasised a lot recently.

This will probably be end up being the problem, unless there is some cordinated effort to make this a research focused conference, i.e. a classical scientific conference, which I can't see. Researchers will present their work online for a couple of minutes, which they have already presented elsewhere and which they have already published, but since only patients are listening, there will be no scientific discourse or anything similar. This also won't educate doctors or the like, especially as no credits will be awarded. But perhaps the focus will then be on global advocacy? Who knows, as the goal and point of the conference hasn't been stated...
 
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