What people have said about the ME Association

Words used to describe the ME Association

“I would like to compliment the whole team at the ME Association especially Dr Shepherd. The information and guidance you share is comprehensive and really helps me cope with ME/CFS. The ‘Essential' magazine gets better and better; the presentation is very clear and the content easy to read. I am particularly interested in the research news, ‘ask the doctor', and management. It is informative and very encouraging. The frequent Facebook posts are also great! I also have the 2 Cook Books and am grateful to Sue Luscombe for helping compile them. I gave copies to a friend who also has ME/CFS and she is using them extensively as well!”

Letter from Member (January 2024)

“To all of the founders and staff of the ME Association, I just want to offer a sincere thanks for the incredible useful and well laid out information available on your website. I am from Ireland and I stumbled upon your website while researching my symptoms and trying to get to the bottom of what has happened to me. The information you have provided is so thorough, accessible and is laid out in such a user friendly way. You have given me a guidepost now to seek diagnosis and, hopefully, a way forward. Thank you, sincerely for your contribution.”

Email (January 2024).

“Thank you for everything the ME Association does. When I lost my job (I was a very busy teacher) it took me a few years, and several unsuccessful applications to get an Ill health pension. My GP was sympathetic and we were able to take some quotes from “The Purple Book” in my final successful application. So you helped make a big difference to me. The stress of uncertainty was hard, and I've stabilised much more now that I have a small pension income.”

Email (Dec. 2023).

“Please thank everyone at the MEA it would be a lonely journey without you.”

Email (Dec. 2023).

“Dear team. I'd just like to take a moment to wish you all a Merry Christmas. And hope you get a little time off during this busy season to do what helps you relax and makes you smile. I, and so many people, are so grateful for the service and information you provide. You really are making such a big difference in peoples lives. Once again, thank you!”

Facebook message (Dec. 2023).

“Since contracting M.E., reading and processing information is a real challenge. I deal with this by scanning and short periods of reading activity.

“You are to be congratulated on the way that you present and layout the information. It allows me as a reader to identify what I want to read without having to work my way through a lot of text which gives me a headache and I have to stop.

“So, thank you for presenting a lot of information in a manner which takes into account the disability needs of the reader, a rare event.

“Best wishes for Christmas and the New Year.”

Email re: ME Essential magazine (Dec. 2023).

“I just wanted to offer some congratulations to you on the current issue. I could feel how much effort had gone into the magazine to cater for the full spectrum of emotional experience of CFS/ME and the range of problems we all have. Yet still maintaining a light, positive and encouraging energy”
“May I say what a packed and interesting Autumn Issue, you did well getting all that medical stuff in and still find some space for lighter content. Congratulations!”
“I just received the Autumn 2023 edition of ME Essential, all extremely informative as always. Congratulations to the entire ME Essential magazine team.”
“I hope this finds you well. Enjoying another bumper edition of your magazine. I was particularly interested to read the article on ear plugs for ‘hyperacasis’ I too suffer from this. You always have diverse information as well as the general info, it’s a great magazine. Thank you.”

“First may I say, I LOVE the new look of the magazine, it’s really much clearer to follow and I like the text adjustments….”
“Today I recieved the new look magazine and think it is great, credit to the team…”
“Another belter of a magazine. I look forward to each and every issue. As well as being very useful it is incredible the amount of work that goes into every issue. I applaud all who put it together for us!”
“Thanks for your excellent new-look magazine. So much to read! I think the quiet stilling exercise suggested by Hilary Canto
makes sense…”

“Yesterday I became a member. Imagine my enchanted surprise to receive your new membership pack this very morning. I am so very happy and simply wish to thank you all. After nearly three years trying to get help, I had nearly given up. I look forward to finding out what I can do to help myself.”

“I have purchased the recommended guides and they are fantastic! Full of extremely helpful tips that I have used to complete my benefit applications.”

“Thanks so much for you excellent magazines which clearly take a lot of work and professionalism!”

“I have been a member for 18 years and just want to send you all a special thankyou for all your hard work and support which has meant a lot to me over the years, especially the hope you create that one day there will be a cure for this horrible illness. A very special thank you to Dr Shepherd and his colleagues for insisting NICE keep the revised guidelines.”

“Thanks for producing such a helpful magazine about ME. The standard is consistently high and each edition is interesting and varied. I am married to a long-term ME sufferer and I am still learning a lot about the illness and how to be a carer. I need all the help I can get and this magazine is consistently encouraging, realistic and helpful.”

“I'd just like to say thank you for the article in the Christmas Supplement ‘Surviving ME' which was so frank and resonates with me on many levels. I am new to the ME association and already feel more supported.”

“I want to thank you for sharing the brilliant piece you wrote for the Cabinet Office Disability Unit in the latest issue of ME Essential. You convey the ups and downs of living with this illness so eloquently.

“It’s also an excellent summary of a lot of the key issues we face. So much so that I plan to get copies made of the article to give to friends and family who are interested to know more – so I don’t have to use up precious energy trying to explain it as succinctly as you have done!

“Great to know you’re out there writing about M.E. and advocating for those of us living with the illness.”

A selection of compliments from 2022-2023.

“I have had ME for 20 years and am now living on my own. I find cooking and all the preparation daunting. Before being ill I was considered a good cook by friends, and loved to entertain – sadly, this is no longer the case.

“My good friend gave me the ME Cookbook. It is fantastic! I’m really enjoying the recipes. Simple to follow with few ingredients. Love the chocolate mousse, pea ginger soup, and fish stew. I look forward to cooking my way through the whole book!”

An ME Association Supporter – 2023.

Why become a member of the MEA?

“I wanted a continuing source of reliable support and information.”

“I think ME Essential magazine is simply the best. It keeps me informed and the stories it features make me feel that I am not alone.”

“I wanted to belong to a charity that provided support, lobbying and biomedical research.”

“I wanted to be part of a community which ensured I no longer felt isolated and alone.”

“I wanted to contribute financially to the work of the ME Association.”

“I like and trust that many people working for the MEA have first-hand knowledge and
experience of ME.”

What makes the MEA unique?

Support and speed of response. Knowledge.

The most established and the most credible. The least flaky!

It’s authoritative. Dr Shepherd should take a lot of credit for this on the medical side – he’s top notch!

It has a sense of really caring for individuals rather than just the disease.

It’s empowerment of members.

It listens to its members.

It bats above its weight and I would love it to have more funding to enable it to do even more.

It allows people to make up their own minds on anything in the press.

It’s the big one, the main one. The one I refer people to!

What do people like about the MEA?

Friendly and responsive to enquiries and to sharing the latest news and research.

Providing kind, considerate, and sensible advice and a haven from isolation.

Bold and robust yet professional in its criticism of the PACE Trial, the 2007 NICE guideline, and psychosocial theories of illness perpetuation.

Providing up-to-date, reliable, and relevant information on its website, in its publications, in ME Essential magazine, and on its social media.

Doing exactly what it said it would by providing support, actively lobbying for recognition, improvements to health and social care, and funding biomedical research.

Comments from 2020-21 about the Covid-19 pandemic

“Thank you so much for the Covid priority template letter for GPs. I  sent your template letter to my GP and got a call the next day to book my vaccination, and I'm due to have it next week.”

“I just wanted to let you know that I used your template letter to send to my GP. I sent it last Saturday and they agreed to me being in group 6. I received the vaccine this morning. Thank you very much for taking the time to write it and for all you are doing to help people with ME.”

“We wrote to our doctors, using Dr Shepherd's template letter and both now have vaccine appointments in Group 6. Thank you for everything your association and volunteers do, we'd be lost without you.”

“Thank you so much for the information you put together to help our case. This is the first battle I’ve ever won with the GP in the 8 years of having the illness and has restored my faith ever so slightly.”

“I've just had my GP confirm I'm eligible. I'm so relieved and happy (I was worried it would be a fight, which I don't have the energy for). Thank you so much to the ME Association for the template letter. I really appreciate all the work you're doing!”

“I can't thank you enough.  If I hadn't had your letter and support I in all honesty just wouldn't have had the strength to fight this one.”

“I'd just like to thank you and Dr Shepherd for all the advice and the template letter for the covid vaccination. After being told on the phone today by my doctors' receptionist that I would not be in group 6, I emailed them using your template. I have just picked up an email saying I will be included and to expect a phone call soon for my vaccination!”

“Just wanted to say thank you for all your advice regarding the Covid vaccine. My doctor's surgery has just phoned to say they have got me changed from group 9. I am now getting the Pfizer vaccine on Friday.”

“Thank you so much to Dr Shepherd and all at the ME Association for the template letter, and for all the support you offer.”

“I can’t thank the ME Association enough for all you’ve done to help. I’m 35 so it would be some time before I could get the vaccine if my GP hadn’t accepted that I need to be in group 6. Thank you!”

“THANK YOU for your leadership and advocacy re the vaccine disparities. I wouldn't have been able to make a good argument without your resources and I'm sure the publicity ME has generated enabled me to successfully get onto the vaccine list.”

General comments

“[Being a member of the MEA] stops me from feeling so alone. It is a very strong advocate for patients.”

“I really appreciate the extraordinary amount of work and effort that each of you dedicates to supporting our community.”

“I like that it has regular medical input from Dr Shepherd, who seems like a reliable doctor with a thorough knowledge of ME and ongoing interest in current research.”

“The ME Association makes me feel less isolated. I believe that ME is real and physical and I like that the MEA is wholeheartedly behind research to prove this.”

“I like most of all that you are consistent in your beliefs about this illness and vigilant on our behalf about negative media coverage…”

“The MEA does an amazing job. Very little research has been achieved compared to other illnesses but this is due to a lack of government investment as your efforts on our behalf are outstanding!”

“It sticks to its guns about ME being a physical illness, not psychological, and continually fights against the 2007 NICE guideline re: CBT and GET.”

“It is a wonderful community of people who care and understand. There is much support available, and ME Essential magazine is super!”

“Staff at the charity have been very quick to help me with problems and I am especially grateful to Dr Shepherd. He is so busy trying to do so much despite his own poor health. I’m very grateful to all the team.”

“ME/CFS is such a lonely illness and the magazine helps me to feel I am not alone, that there are others going through the same journey as I am.”

“If it weren’t for the ME Association I don’t think I would have been able to move from being very severely ill to where I am today.”

“I like and trust that many people working for the ME Association have first-hand knowledge and experience of M.E.”

“The ME Association has been there since I first became ill and given support when all else has failed. Its continuing presence is very important to me.”

“I found the information leaflets were excellent on dealing with work and benefit issues.”

“I was desperate for information that would give me good advice to help in any recovery I might make and found the magazine offered the best hope.”

“It stops me from feeling so alone. It is a very strong advocate for patients.”

“I really appreciate the extraordinary amount of work and effort that each of you dedicates to supporting our community.”

“I like most of all that you are consistent in your beliefs about this illness and vigilant on our behalf about negative media coverage…”

“It sticks to its guns about ME being a physical illness, not psychological, and continually fights against the prevailing NICE guideline re: CBT and GET.”

“I would like to thank Dr Shepherd and the association for all they are doing to support ME sufferers. I have benefited so much from my membership to the Association, I appreciate all that you do.”

“I found the information leaflets were excellent on dealing with work and benefit issues.”

“I was desperate for information that would give me good advice to help in any recovery I might make and found the magazine offered the best hope.”

Member and Non-Member Survey Responses
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