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

Ravn said:
Hmmm... curious timing. Two days ago ads from local LP (and derivatives) sellers started swamping my FB feed. Coincidence?

Have used the 'report this ad' function, unfortunately it doesn't allow for any text input to explain the reason for the complaint. I don't expect FB will take any notice but at least the annoying ads in my feed seem to have stopped for now.
Click to expand...
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.
 
Ravn said:
Hmmm... curious timing. Two days ago ads from local LP (and derivatives) sellers started swamping my FB feed. Coincidence?

Have used the 'report this ad' function, unfortunately it doesn't allow for any text input to explain the reason for the complaint. I don't expect FB will take any notice but at least the annoying ads in my feed seem to have stopped for now.
Click to expand...
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.
 
World ME Alliance calls on WHO Director General to recognise ME alongside long Covid

On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long Covid is causing around the world, and sets out five key elements of a plan to drive change.

It is vital that the impact of Long Covid is recognised at the highest levels, and the World ME Alliance congratulates Dr Ghebreyesus on this stance.

However, as more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.

The World ME Alliance has written to Dr Ghebreyesus calling on him to meet with representatives of our organisation.
Click to expand...
Letter at link.
https://worldmealliance.org/2022/10...general-to-recognise-me-alongside-long-covid/
 
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/
World ME Alliance said:
To mark World Health Day, and with just over one month to go until World ME Day, we are launching our next resource!

Are you interested in helping to raise awareness for myalgic encephalomyelitis (ME), a chronic and disabling disease that affects millions of people worldwide? If so, you’re invited to participate in the World ME Day 2023 global awareness campaign.

This year we are using the tagline “ME: the disease where pushing harder can make you sicker”.

For those who do not have ME, it may be difficult to understand how something as simple as chatting with a friend or making a drink can lead to a “crash” that lasts for days, weeks, or even permanently. But for people with ME, post-exertional malaise is a reality that severely limits their daily activities and quality of life.

And it is now estimated that roughly half of those with long COVID are experiencing PEM, which means that millions more people are living with this debilitating symptom.

To help you get involved this World ME Day, we’ve created a template press release that you can customize and send to your local news outlets, as well as a step-by-step guide on how to send a press release.

Our goal is to help you share your story and raise awareness about the hallmark symptom of ME: post-exertional malaise (PEM).
Click to expand...
 
Last edited:
Theme for World ME Day 2024: Become a #GlobalVoiceForME - Together, we are battling a global health crisis.
This year marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME, highlighting the urgency of addressing this global health crisis.

In recent times, the landscape of ME has evolved with COVID-19 triggering a surge in the numbers of individuals affected by ME. Today, we estimate that more than 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, member organisations of the World ME Alliance are actively joining forces, amplifying their support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

With your support, we will be a #GlobalVoiceForME
Click to expand...
https://worldmealliance.org/worldmeday/
 
Andy said:
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/
Click to expand...



Did they receive any response from the WHO regarding their February 2023 letter and their suggestion for forming a working group with the WHO?
 
https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/

New Clinician Resource Guide Published for Severe ME Day 2025


Ahead of this Severe ME Day — August 8th — the World ME Alliance is
proud to launch a vital new publication:

Supporting People with Severe and Very Severe ME/CFS:
A Resource Guide for Clinicians

All over the world, Severe ME patients struggle to get the medical
care they need. Too often they are recommended inappropriate
psychiatric hospitalisation and dangerous treatments such as Graded
Exercise Therapy, while at the same time being denied vital
interventions such as intravenous hydration or tube feeding.

This resource from the World ME Alliance, available in both English
and French, is intended for use in crisis situations — particularly
when hospitalisation is being considered — and can be handed to
clinicians and healthcare providers by patients or carers. It is
designed to support self-advocacy when people with Severe ME may be
too unwell to speak for themselves, and to guide healthcare
professionals toward safer, more appropriate care.

Through this concise and practical document our goal is to help give
voice and agency back to those who are often left unseen and
underserved by healthcare systems.
 
You must log in or register to reply here.
Back
Top Bottom