Myalgic encephalomyelitis or ME/CFS — Scope | Disability forum
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Myalgic encephalomyelitis or ME/CFS

Cazleep Member Posts: 11 Connected
Does anyone suffer from this?
I have the severe end and Fibromyalgia.
How do you deal with the isolation?
Is this as common as they say? I had never heard of either and I worked as a carer in the community I looked after all kinds of people in their own homes. 


  • itsmefee
    itsmefee Member Posts: 27 Connected
    I have Fybromyalgia and ME. I was diagnosed with it in 2010. My Son also has the same diagnosis. He is fifteen now and was diagnosed at a similar time to myself. You would be surprised at how many people have it. I am guessing that once they have had it for a while, it becomes their normal kind of life so they stop talking about it.

    Also people with these fluctuating conditions can be well so you may only see them on their well days but it is out there. The Isolation for me was something that I got used to as it became part of  my every day life. 

    Lady Gaga recently had to cancel her tour because of Fybro, so it is not just us mere mortal that suffer from it. 

  • Cazleep
    Cazleep Member Posts: 11 Connected
    Hi, itsmefee,
    I have lived with this now for 7 years I have read about it and googled but I haven't been in a talk group like this I was just wondering how many people on here suffer from this and is there much awareness.
    As this is for chronic pain I figured all pain is bad to each individual it doesn't matter what you suffer from really so how does anyone who is isolated, housebound, bed bound, alone because of pain, how do people deal with it? 
  • Cazleep
    Cazleep Member Posts: 11 Connected
    Itsmefee, I understand what you mean by it becoming normal, and it must be so much harder with both of you ill, this group has threads for everything and they are super friendly to talk to, we have this in common if ever you want to chat x
                           X Carol x
  • lisabrazil80
    lisabrazil80 Member Posts: 94 Connected
    For another mr look again at my decision about when I went for my assessment I only got six points and a letter came through the post saying I didn't get a nuff porit so I put in for a look again at the decision for my personality disorders I find it very hard to do anything concentrate Cooking I barn my self  can anyone shed any light do you think I will get my benefit back as just looking at it again or do you think I'll have to go to the tribunal can anyone shed any light this Are you really affects my life Some day I don't get out of bed or.  I've got my care and my friend is banging at the door for me to let me in but I'm in bed key to get in there can't even get up I'm so depressed that this is make me suicidal can anyone help me please anyone going for something 
  • markyboy
    markyboy Member Posts: 367 Pioneering
    I think you have posted this in the wrong place
  • Cazleep
    Cazleep Member Posts: 11 Connected
    LisaBrazil80, hi,
    The first step is go to the citizens advice bureau and ask for help they will help with everything and yes ask for a reconciliation which will be ignored and you will get a no, but don't give up find as much evidence to support your claim like hospital letters, consultants you have seen, diary's if you keep them which mention how your illness affects your daily living. The citizens advice will be their to help with everything every step of the way but it will have to go to tribunal, I have just received the date for mine, just don't give up and best of luck to you x
                                  X Carol X


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