PIP benefit For CFS/ME how many got his after first applying for PIP

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Still undecided as to whether to apply for PIP, it would seem that CFS/ME are two of the hardest to get it for. Ive no recent proof or back up, No longer got the original letter from hospital consultant. It was like over 20 yrs ago, would gp still have a copy? take no medication so is it even worth bothering. i take herbs and use oils for relief, I dont drive and have no one who can take me unless very local as hubby has rheumatoid arthritis himself..Should i mention this on the form if i go ahead that is? I cant handle making my own way there either using public transport due to anxiety.

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  • Posted

    Hello. I'm not sure what it is you really want or what your needs are?

    But to answer your question - 'Has anyone applied for PIP?' - Yes I applied and got it.

    I have M.E/CFS: I was diagnosed 5yrs ago at 55 and was forced to retire early.

    I was given the maximum PIP award for 6yrs and a 3 yr award for ESA, they re-assess you every 3 yrs.

    You are correct in that, it is a difficult illness to prove however, not impossible!

    The form you need to fill in is complex, detailed and laborious - energy consuming: I gave myself 4 weeks to fill it in and then photo copied everything! THINGS GO MISSING AT THE DWP!

    You do not need consultants letters etc, nor do you need to be taking medication but . . . ANY EVIDENCE you do have will help the process. The DWP is big on STUFF it seems!

    I photocopied my perscription, an oesteopaths letter, doctor's letter, anything and everything you have that is reasonably up to the mark of how you are NOW, they will need to see.

    Even a letter from a family member or friend is helpful. It needs to say, how your illness affects you day to day.

    As for not being able to get to an assessment because you don't drive:

    They will reimburse you for public transport.

    In order to be reimbursed for a Taxi, you must obtain a doctor's letter stating why you cannot get there by public transport.

    If you can obtain a lift, then that person can be reimbursed for their petrol.

    If however, you feel that you cannot possibly go to an assessment centre for what ever reason, then you must produce a Doctor's letter stating why. Then, and only then, will you be able to request an assessment at home.

    This process can take months or longer. Be prepared to be patient!

    Your initial assessment could take up to 12 or 18 months depending on their continuous - backlog - mine did!

    Decide what it is you really want and go for it.

    Good Luck!

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  • Posted


    There is an excellent organization's on the web which helps with PIP. If I give you a URL or recommend a clinic my reply will be taken down. But you can google.

    All information on PIP is available to sufferers and I get a monthly newsletter too. They show you how the points system works and the kind of answers that if are true for you, will ensure you get the required number of points.

    You really do need to join an M.E. clinic, because an up to date consultant report is invaluable. The system is rigged against GPs. I travel into central london by taxi twice a year from Chelmsford. The expense is well worth it.

    In the end it has everything to do

    with benefits and work, whether you are on benefits or work. I hope this will provide benefits and work for you.

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    • Posted


      can you email me the name of the group.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • Posted


    Just to confirm you can apply and get PIP for CFS, I too have been awarded both daily living and mobility standard rate components for my CFS and Fibromyalgia (both of which go hand in hand). I did have to appeal to the first tier tribunal stage to get it following decisions not to award it after my assessment and mandatory reconsideration , but my argument was that my sister in law was awarded PIP for CFS alone, yet I was not awarded it even though I had confirmed diagnosis' of CFS, Fibromyalgia and IBS!! I then rant and raved on my appeal paperwork about how unfair the whole system is if two different results can be achieved even though the diagnosis' are the same! I even managed to get the decision overturned without having to attend my tribunal hearing, which apparently is quite hard to do.

    As has been mentioned to you there are a number of services out there to help you through the claim process, but I would apply, as long as you have a confirmed diagnosis then it seems silly not to try! I do sometimes feel quite guilty for having to claim these benefits, but then I think that I have worked hard for a long period of my life, paid my taxes, I didnt ask to become ill, so why shouldn't I get the financial help and support I need. Go for it and I wish you all the best with your application.

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    • Posted

      Thanks Paul and as you say we dont ask to get ill and no one should be put on a guilt trip for claiming after working for years. You worked hard and paid your taxes. I dont blame you for ranting about your sister in law getting it and you refused . Hubby will have to reapply again next year and he said if he doesn't get it then he wont fight it, i say no you will because if you answer the questions the same as last time then you should come out with same points and therefore get same award, the only difference will be the assessor nothing else. Last one was nice and understanding.

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  • Posted

    If you have no evidence then you really have no chance.

    You can get access to your medical records but I expect they will want to charge you admin fee which is awful really DWP are suppose to pay that but wont.

    I would say apply what is the harm if you get turned down it has wasted some of your time with form filling etc but there is always a chance you may get it the system is very area based.

    Do you receive anything like ESA?

    No do not mention your partner unless they are aiding you

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    • Posted

      Thanks and as you say ive a very weak case but may as well fill out the form anyway. Strange i could fill in hubbys easily, it was me who got him his DLA all them years ago because our GP was of no help what so ever, one of them who didn't believe anyone should get it! Yet im struggling to fill in my own form? Sadly it is my partner who has to help me even though his struggling himself so a very awkward situation really. I need the help but don't get much as he has arthritis himself. I stupidly asked at doctors for a copy f my original diagnoses letter from all them years ago only to read on form don't do this, so ill probably now be charged for a useless letter any way. As true it only proves diagnoses and not the way it makes me feel. I don't receive anything else like ESA, im 68 so will still have my lower rate state pension, missed the increase on that because was born in 1951, Hubby missed keeping his DLA and having to apply for PIP because he was born in 1949 and not 1948, if he had then he would have been left alone and kept his indefinite DLA.. So much for the word indefinite a!

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