World ME Alliance, was previously IAFME: International Alliance for ME

Actually I would strongly advise everyone seeing those ads to click on them. As often as possible. Costs them money and means that fewer people will see those ads.

If we were even 1% as organized as the people angry at our existence, we could end this nonsense with a solid coordinated campaign filling their forms and making them waste their time trying to market their quackery to people who have no intention of buying. Of course we're not, but this type of campaign works well.

 

Facebook is not so good at these things, especially if it's not a cookie-cutter type of example. Ads need to be preapproved for example and it is run by an algorithm/AI, people only check it if you disagree and appeal.

I agree it would be better to be able to include a short message when you report problematic ads. There is an ad I have reported a couple of times, because the product is a fake medicine from an infamous quack here and advertising his product was banned years ago. Yet it keeps popping up on Facebook. So after a while the competition authority specifically ordered FB (and YouTube) to remove these ads. Yet, even afterwards I saw the ad in my FB feed. They keep showing up because the AI that preapproves these really sucks.

The same thing happened when I reported a Facebook page that pretended to be Facebook (tech support or similar) and was scamming (mostly) FB pages of small businesses with phishing. Actually a lot of people reported it but everyone got a reply that the AI didn't find any problem with it. Then I appealed, hoping a person sees it but FB told me they are currently running low on available people so it was also the AI that rechecked the page and found everything was fine. So in the end I wrote to the "Supreme Court" of FB, which really doesn't deal with these kinds of issues at all, it is some kind of board of prominent educated people who only check a selected few really complicated cases to decide who is right. But I had no idea in what other way I was supposed to tell FB that their AI cannot even tell if someone is breaking the law pretending to be FB.

 

Letter at link.
https://worldmealliance.org/2022/10...general-to-recognise-me-alongside-long-covid/

 

Japan ME Association joins the World ME Alliance

https://worldmealliance.org/2023/01/japan-me-association-joins-the-world-me-alliance/

 

Engaging with the WHO over disability health equity

"Following our letter to the World Health Organization (WHO) highlighting critical gaps in their “Global report on health equity for persons with disabilities”, we have met with officials to discuss our recommendations.

This was a positive discussion on the importance of including those with energy limiting disabilities in global health responses. We discussed the range and severity of disability experienced by people with ME and other energy limiting disabilities, and the impact this can have on access to healthcare."

https://worldmealliance.org/2023/02/engaging-with-the-who-over-disability-health-equity/

 

Posted a few days ago, part of their campaign for May 12th (World ME Day):

Send a press release about World ME Day to your local news outlets

https://worldmealliance.org/2023/04...bout-world-me-day-to-your-local-news-outlets/

 

New Factsheet on ME: Available in Multiple Languages for World ME Day

https://worldmealliance.org/2023/04...lable-in-multiple-languages-for-world-me-day/

Might be a candidate for the resources part of the forum.

EDIT: Direct link to the English Language version of the fact sheet (PDF) -

https://worldmealliance.org/wp-content/uploads/2023/04/Myalgic-Encephalomyelitis-ME-FactSheet.pdf

 

Neúnavní joins the World ME Alliance to represent the Czech Republic
https://worldmealliance.org/2023/06...-me-alliance-to-represent-the-czech-republic/

Also posted here, News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

 

2022/23 annual report available, https://worldmealliance.org/2023/07/celebrating-growth-collaboration-and-impact/

 

Theme for World ME Day 2024: Become a #GlobalVoiceForME - Together, we are battling a global health crisis.

https://worldmealliance.org/worldmeday/

 

Did they receive any response from the WHO regarding their February 2023 letter and their suggestion for forming a working group with the WHO?

 

Just FYI here's a link showing the member groups for this alliance:

https://worldmealliance.org/about-us/our-members/

 

The World ME Alliance is asking for videos of pwME to be part of their campaign this year.

It's a short scripted video to be uploaded by 1st April

https://worldmealliance.org/2024/03...l&utm_source=linkedin.com&utm_campaign=buffer