What services are there available for CFS/ME sufferers?

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What services are there available for CFS/ME sufferers in the UK? Are they of good standard?

I am a college student currently focusing on this question for a research project though I assure all that I do have a personal interest in this subject as my mother suffers from this debilitating illness and therefore I am not going to take the illness lightly and I will take all answers seriously.

I would like to be able to quote some answers within my work however I will uphold the highest standard of confidentiality when doing so. The reason I am posting this on a support forum is that I would like a good range of different research and I feel that those who are suffering are more likely to give me a true picture of what is available and how good these services are.

I would be very grateful to anyone willing to contribute and I can either reference and quote or keep this source completely confidential depending on the individual willing to help.

thank you for taking the time to read this and thank you for any contributions smile

PookiePink95.

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12 Replies

  • Posted

    Hi  I'm not getting any special treatment ! I've been to chronic pain management  coarse which helped emensly  getting me to accept  this illness & stop  fighting because I use up all my energy  trying to get better !!!  Taking things at a slower pace stops me from running on empty !!!  I visit. A pain clinic that regulates my medication 

    that is it ! I'm not sure that will help you any ?  Hope your mum has better luck !!

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    • Posted

      Hi, 

      Thank you so much for responding!

      What was involved in the pain management course? 

      How do you feel about the clinic? 

      Thank you, she's still adjusting to life with the illness. 

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  • Posted

    Great question. I have been suffering for 6 months and haven't found much. The local support group meets once/month.
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    • Posted

      Thank you for responding. Have you attended the local support group yet? If so, how did you find it? Is this something run by a charity or fellow ME/CFS sufferers? 
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    • Posted

      No, as they only meet once/month at the local hospital and it is fellow ME sufferers. Not sure if i will go as i want to get well, if i am around alot of people surrendering to the illness ithat will not be good for me. At the moment anyway.
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    • Posted

      Okay, thank you. I can understand that mentality. Would you mind if I sent you a questionnaire to fill out about your experiences so far? I gaurantee you it is completely confidential but it would help my research greatly. I can send it to you as a private message on here or if you would rather not take part I understand completely. Again, thank you for responding smile 
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  • Posted

    Hi there sorry I've not answered you I've been away for a few days , I went one afternoon a week for 3 months to a village hall there were 20 ish of us all cope I g with pain for one reason or another , we were taught by a physio &  therapist ( for the head !!!)  we were taught how to pace our day not to burn out & be left in agony , we were given excercises ( very gentle !!)  & I personally learnt how to say no ! That was a tough on for me because I've always done everything for others ( nobody offered me help now though ?!?)  I've met some friends from there & in fact they were who I went away with ! They understand every thing about this illness & the partners get a chance to have a nice time & not worry about us !! 

    It was 8 yrs ago & I must admit I use some of the teachings at least daily ! Wether it's pacing not using all my energy at once or I remember noto give myself a hard time if I can't do somthing & praise myself for anything I achieve ! Even going away is an achievement  that maybe I wouldn't be doing now if I hadn't been taught how to cope !  Psychologically it's helped tremendously I still have an illness but I can enjoy my life dispite it !!!  Sorry if I've gone on a bit but it was such a big help to me I would recommend to any one with a chronic illness to try & get on these coarses ask the gp if there's one available in your area ! Good luck dawn x

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    • Posted

      No worries...lucky for some! haha :D 

      It sounds like despite the condition you have taken some very positive and helpful things from the experience. Would you mind if I sent you a questionnaire that I could use within my project? As I have said to another response I can gaurantee it will remain entirely confidential but it would really help smile I understand if you would rather not though. Thank you x

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