Shortly after I was diagnosed with chronic fatigue syndrome (CFS), sometimes known as myalgic encephalomyelitis (ME), I visited the NHS website to try and find out more about the condition, and what it entailed for me in terms of symptoms and treatments. On one page, several charities and support groups for people with CFS were listed, among them the Association of Young People with ME (AYME). I admit that I am sometimes wary of support groups, as sitting in a small and exclusive group and bemoaning out trials is not going to integrate that group with the rest of society. However, when I followed the link to their website, I found lots of information available about campaigns, events, and medical research surrounding the condition, and the general feel of the charity was a somewhat optimistic one, without being unrealistic. I decided to sign up to the charity, and within the week I was a member of AYME.
AYME provided a free bimonthly magazine called Cheers for it’s members, but it’s main attraction was the chatroom provided for members under the age of 26 years old. A similar chatroom was available for those over the age of 26 years, and another for carers of CFS sufferers, with only a small subscription fee for each.
The chatrooms provided a place to talk to other CFS sufferers about their experiences of the condition, advising each other on medical issues, and sharing ideas about how to keep up with education or work while being so ill. While the main theme of the chatroom was the common factor that we all shared, it was not the sole subject discussed. The most refreshing aspect of the chatroom was that not all the discussions concerned CFS; some were little word games like anagrams and riddles, others addressed pop culture, TV, music, films, books, and arts and crafts.
I had been a member of AYME for five and a half years, and had made a great many friends, when I heard the news. AYME was to be closed down, and merged with another charity called Action for ME, where the chatroom was split into under 18’s who still had free access, and over 18’s who had to pay. Action for ME is a wonderful charity, and the merge was sensible in terms of logistics and finances, but without prior warning that the idea of such a course events was even in discussion, this news caught all the AYME members off guard. Many of the over 18’s like myself dropped the charity membership, and even those that stayed were upset at being cut off from our under 18 friends.
A prominent member of the chatroom set up a Facebook group, enabling us all to keep in contact, although it could not be structured or run in the same way as the AYME chatroom. Mere weeks after setting this up, she was asked to take it down as it was not moderated like the AYME chatroom, and those in charge felt that it left younger AYME members vulnerable, despite the fact that I am unaware of any instances of inappropriate language or behaviour occurring on the Facebook group.
The members of AYME were not going to let such a set-back destroy the tight-knit community established on the chatrooms, and set up another Facebook group, this time being extremely careful to distance itself from AYME. So far no one has been asked to remove the group, and the same community can continue relatively unperturbed.
AYME was a wonderful charity while it lasted, and provided emotional relief and support for many thousands of people, as well as educating others about the disease, and campaigning for disabled rights. Through it I have made many friends who I still keep in contact with; I have laughed and I have cried with them, and I relied on their support for a long time. I kept every single letter and card that I received through them, and am mightily glad to have done so, as this truly reflects the profoundly great effect AYME has had upon my life.