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    Cev

    I heard yesterday that the official government Covoid department doesn't consider me to be CEV. 😒x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    I don't know what that means πŸ€”

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      #3
      Is it..Clinically Extremely Vulnerable πŸ€”

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        #4
        If Phil's right then I don't see how you can't be. πŸ€”

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          #5
          Matthew is correct in that the official view is MND is not included. Whilst this is ridiculous you can ask your GP to add you to the vulnerable group. This is how I got my vaccine early.
          I’m going to do this even if it kills me!

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            #6
            Hate to think what you need to have to be vulnerable. πŸ€”

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              #7
              Originally posted by matthew55 View Post
              I heard yesterday that the official government Covoid department doesn't consider me to be CEV. 😒x
              I think I’m right in saying they only class you as CEV with MND when you have breathing problems and use a ventilator please correct me if I’m wrong x but I agree that that shouldn’t matter x
              Janette x

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                #8
                Funnily enough I probably will be on NIV by the end of the month. I do have a doctor on the case. 😁x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  I'm not on a ventilator, but got a letter (from government?) saying I was CEV, and to let my GP know, and then got emails from supermarkets saying I was priority. If I am CEV, you definitely should be Matthew. x
                  Diagnosed July 2020, ALS bulbar onset.

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                    #10
                    CEV definition has change quite a few times since last year, if you remember at the start , mnd was on the list for discussion, but was never actually acknowledged, but MS was included, big campaign led by MNDA to get on the list, so it was agreed we could ask to be considered CEV, which we all did,. When they brought out the NHS track and trace app, MND was included on the list, on the same line as MS, then when the 2nd wave started the list was redone and basically only cancer was included, MND & MS was removed.
                    so anybody who had a diagnosis after the track and Trace app were deemed as CEV, but after the 2nd wave weren’t ,
                    Those who have been diagnosed since the summer can apply through the govt website or their GP, it’s not automatic.

                    Anyway, I have some good news I eventually applied for PIP in September and after 6 months of waiting , ive been awarded the full monty, and backdated to September ,
                    s
                    As long as there’s golf and beer I’m happy

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                      #11
                      Shaun your round then 😁

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                        #12
                        Just heard that someone is being sent round to give me a vacation. I don't think it's voluntary? 😁x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          Originally posted by matthew55 View Post
                          Just heard that someone is being sent round to give me a vacation.
                          Ooh, lucky you. Can you choose where? And can you bring a + 1 (me, me, me) 😍😍😍

                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

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                            #14
                            If I could I would in a heartbeat 😁😍xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              #15
                              Do you mean vacation or vaccination? Thinking about if you could have both it would be very tempting πŸ˜„πŸ˜ŠπŸ˜‰

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