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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Best ME charity to get involved with in the U.K.

Ambrosia_angel

Senior Member
Messages
544
Location
England
I'm looking for a charity. Ideally I'd like a charity which would allow me to volunteer with teens and children with ME. It would include supporting young people with ME to remain active in their community and avoid isolation. Something like befriending.

Does this exist?

Are there any charities to do this with without compromising my morals.

I can only think of AFME (previously AYME) but firstly I'm unsure of whether they actually do this.

And secondly they've indirectly harmed patients for so long. I wouldn't mind getting involved if I knew they were attempting to get their act together though.

Advice?
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
TYMES Trust without a doubt http://www.tymestrust.org

Whether they can offer the exact opportunities you're after I'm not sure but in terms of their ethical stance towards dealing with children with ME they are the ones to recommend.
Thank you! I checked out their site. It seems that they do more work with educating professionals rather than volunteering directly with children and their families. I would like to get involved but I'm not exactly qualified for that :/
I will message them anyway to see what they say. I know that not all charities put everything that they do on their site.

Do you know if AFME is worth a shot? I've researched them up but I'm a bit confused about their current stance on the ME. They say that they do home-based volunteering on their site so that's why I'm considering them. Have they actually done anything sincere to oppose the damage they caused by supporting the pace trial.
 
Messages
15,786
Do you know if AFME is worth a shot? I've researched them up but I'm a bit confused about their current stance on the ME. They say that they do home-based volunteering on their site so that's why I'm considering them. Have they actually done anything sincere to oppose the damage they caused by supporting the pace trial.
They still seem fairly committed to being a fatigue charity, with little interest in protecting ME patients from bad science and bad treatments. Sometimes they show potential for change, but it never seems to pan out.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
They still seem fairly committed to being a fatigue charity, with little interest in protecting ME patients from bad science and bad treatments. Sometimes they show potential for change, but it never seems to pan out.
I'd stay away from AfME. I think many on PR will agree they are part of the problem, not least because they support Esther Crawley.

Maybe you could look into an ME support group for your area?
aww that's a shame. I'd love to be able to do something like that. I'll just have to look at other ways to get involved.

I feel like this service is so needed. Thanks for responding
 

Cinders66

Senior Member
Messages
494
AFME/AYME aren't getting their act together but they do offer what they call peer mentoring or peer support (they support anything DIY) so if that's what you can help with it would seem a waste not to do so just because of the charitys poor record.
 
Messages
2,125
the charitys poor record.
I think it goes a bit deeper than that.
The best help would be to get them to look elsewhere (eg TYMES trust) for help rather than rely on and fund a charity that actively promotes the very people who are perpetuating the situation; the lack of real treatment (ie EC and Co).

@Ambrosia_angel there is now a carers/parents forum; maybe someone there can give you some ideas.