TESTIMONIALS

What people say about the MEA

Words used to describe the ME Association

Why join the ME Association? Top Reasons:

  • I wanted a continuing source of reliable support and information.
  • I agreed with what I felt was the ME Association ethos i.e., that M.E. is a real and physical disease.
  • 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.

What do people like about the ME Association?

  • Friendly and responsive to enquiries and to sharing the latest news and research.
  • Providing kind, considerate, and sensible advice and a haven from isolation.
  • Punching above its’ weight in terms of quality output compared to its size.
  • 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.
  • Leading the fight against the psycho-social view and advocating the need for more biomedical research.
  • Doing exactly what it said it would by providing support, actively lobbying for recognition, improvements to health and social care, and funding biomedical research.

What makes the ME Association 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.
  • Dr Shepherd. He has consistently been at the forefront of the ME scene and has held his own, without hysterics, against negative thinkers and charlatans.
  • 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!

General comments from the community

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

Comments relating to the Covid-19 pandemic and campaigns

  • 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.
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