ME Awareness Week: Links for charites and information

This post is a work in progress, there will be updates when I get new links

This is the last of my MEAW posts, I think it continues for two more days but I don’t blog on the weekends and I only had the five ideas really so this is the last of them. I hope someone has found them informative or helpful in some way 🙂

I have to admit that before I did my research about charities this week I didn’t know of that many, I think there were three that I could have named. I thought that adding links to some sites for ME charities might help if you have any questions about it or might consider donating to an ME charity in the future.

Most of these links are charities, there are a couple down the bottom of the list I included because I was either not sure if they were actually charities but were interesting anyway or because it has a link to international ME sites. I didn’t link the actual international sites purely because I can’t tell what most are saying as I don’t speak the language and don’t want to include something here that I’m not sure of. If anyone can read them and say what the site is about then I’ll happily add them to the list.

Charities in the UK

AYME (Association of Young People with ME): The charity I know the most about, I first heard about them from the ME/CFS clinic I was first referred to years ago. It is a young people’s charity and members can only be up to 26 years old, though the charity is run by people with ME, all the volunteers have ME themselves and they have a phone line for if you need support or help with your life with ME It is free to become a member and have access to everything on the site including the forums and online magazine. After you turn 26 they do have an AYME Grads charity which anyone can join but it is £20 a year as they don’t have the same funding for a charity with members who are alder as you get with young people’s charities.

ME Association: A site with some really good links with information on them about research and links to helpful services that are used to talking to people with ME. These include some local groups and online sites I hadn’t heard of before for people with ME that I will be checking out including one for creative projects by people with ME. This is a charity for all ages and, although it’s based in the UK, you can join from other countries. They have a subscription/membership fee of £18 in the UK, £24 for mainland Europe and £30.00 for the rest of the world.

ME Research UK: As the name suggests this seems to be mainly aimed at the research about ME and the symptoms of it. They have links about completed research projects and those that are ongoing. It has a free biannual magazine which has information about ME research. This isn’t a charity with membership as such from what I can see, it’s more like parallel research charities for other illnesses but you can donate or become an ambassador.

Action for ME: This is the big charity I knew about as an all ages charity in the UK though they do link to AYME for people under 18 as it’s free to join so they seem to have some sort of link. You can view the forum and take part in it for free as long as you register on their forum and there seems to be quite a few discussions going on in there. To become a supporting member it says it costs from £1.75 a month of £21 a year or there’s the option of a lifetime membership at £350. They do advertise vacancies, both paying and voluntary, though they’re past the deadline of the ones up at the moment.

Charities in Ireland

Irish M.E. TrustA long running charity, as old as me, which has a lot of useful information for anyone with ME as well as those living in Ireland. I found the history part of the site especially interesting, which may sound weird, but I’ve read a few ‘history of ME’ things and this is nice and short and to the point and explains about the name itself as well. They also have a good page full of links, both national in international, under the Snippets page which is up to date, the latest being April 21 2015 (as I type this). You can donate to them but I don’t think there’s a membership.

Irish ME/CFS Association – The website seems to be mainly information about the charity and what they do, though it does mention something about members being able to loan magazines so I think there’s a membership, if you’re interested then emailing them on their contact page might be the way to do it. They have some links to other sites as well which may be interesting, I’ve added a couple to my list

Charities in the USA

National CFIDS Foundation – I have to say of all the names I have heard used for ME CFIDS is not one I recognise. This charity is based in America but there is a lot of articles and research on there that may be interesting to anyone with ME. They also have a newsletter and you can read archived older copies as well as the current one if you have a membership, there are many different levels depending on where you are and if you’re a member or sponsor so I won’t list them all here but it’s $30 a year for and individual member I the USA

Solve ME/CFS Initiative – (I was redirected from cfids.org so not sure if that’s still going as well or this is their new name) This is one I found linked on the Irish ME/CFS Association website and it looks like it’s got a lot of information. There are some good information sheets under the media section. Apparently they’re the biggest ME charity in the world and they’ve got a lot of information on there and it all seems pretty up to date, the blog pages have updates and articles in chronological order, might be a good place to start for the latest information and ideas. If you live in the USA this seems like it’s the largest charity so might be worth looking at.

Other Links

Invest in ME: This is a small charity that has a lot of information on ME and has a lot of links in the right hand side of the screen to articles and news stories. They have links to campaigns, a free newsletter via email and requests for help with research. I haven’t heard of this charity before but they appear to be part of a network of charities throughout Europe.

European ME Alliance: This page is mainly to link to other ME charity and information pages throughout Europe. On the left of the screen there is a list of countries, clicking on them brings up a page with the websites of relevant charities for that country. I can’t comment on most of these as I don’t speak the language but if anyone does and knows anything about those sites I will be happy to add them to this list. These countries are: Belgium, Denmark, Germany, Holland, Ireland, Italy, Norway, Spain, Sweden, Switzerland, UK (Invest in ME)

M.E. Support: I’m not sure if this is actually a charity but it came up showing as a charity on google and seems like it’s a good site for information on ME and has lots of articles on it. I can’t see a donation page or any charity information on the website but wanted to include it as it’s been running since 2001 and seems to have a nice amount of information even if it isn’t technically a charity.

A lot of these sites have their own shops which sell merchandise such as awareness badges and magnets as well as some selling things like cards and donations in the name of someone else to give as a gift. I was surprised at the different versions of the ME ribbon though they seem to all have blue in, I’d always though that it was just the blue one side and yellow the other as that was the version I’d been aware of.

If you know of any other ME charities or information sites you think I should add to the list please leave a comment below or send me an email at thoughtfulpigeon@hotmail.com I will add any that you send to the list and it would be nice to find some for people outside of the UK as so far those are the ones coming up for me. I guess I don’t know what ME is called (besides CFS) in other countries so that may be part of the problem.

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