ME/CFS/Fibro & PIP

Hi All

A few years ago I was awarded indefinite DLA and then a few weeks ago I got the letter about having to change to PIP. Suffice it to say my heart dropped and is currently somewhere in Australia.

I got diagnosed with ME and fibromyalgia last year after several years of tests and now have my PIP assessment on Wednesday (September 20th). My ME consultant was on holiday when my form arrived and so I couldn't get a letter from her in time and I've had several different GPs in a year as they keep leaving (not my fault) so I haven't got a letter from my GP, but I did send one confirming the fibro which I sent. I did end up getting a good letter from my ME consultant when she returned after the forms were posted and so I sent a copy belatedly (not heard back) and will take the other copy with me.

Has anyone had any ME PIP assessments and if so do you have any tips please? I can walk slowly, but it's painful in my whole body and obviously there's the heavy fatigue to say nothing of the myriad other symptoms including migraines that last for days.

And finally thank you for being there!

Peace

Seb

Hey Gordon

Thank you for taking the time to reply. I'll do the negative response as opposed to the positive.

I think the worst part is how they try to make you feel like a total criminal, so I'm doing my best to remember I'm not one!

Yep just had one. Posted today. Look at that one-PIP assess. notes of warning.

Follow Gordon's advice. Look at the advice in guides for f2f assessments and your application to remind yourself of the descriptors and how they affect you.
: Take your time answering. Think about the activity and how difficult it is for you to do it. Don't overstate your abilities-it happens. Tell it like it is.
: have someone with you to take notes and as witness.
: regarding the movements at the end: Even though the HCP will state clearly to not do anything that causes pain, they then go on and ask you to do things you may not be able to in a manner that encourages you to do it. I felt pressured once I said I couldn't do one of the movements (the first one), to then try to do the other movements and suffered afterwards. Don't feel pressured. And tell them if you are in pain or breathless.
: Don't worry! It sounds like you have good support. You have an ME Consultant and you've had tests that show results for your diagnosis, so looks like you have it covered on that front. It may not feel like it with everything you have to deal with, but you are lucky you have that type of support in your area.

Peace out

Hey Buddha

Thank you for responding. Yeah I'm lucky I have a good ME consultant. I don't actually have anyone to go with me and to be honest I think I'd just feel more vulnerable in a way.

With the fibro on top of the ME every movement is painful so it should be interesting! And thank you for being positive. I think there have been so many negative reports from people on social media, but there does seem to be a lot of positive outcomes too. I also think you're right about just being honest and not stepping too far over the mark.

I wish you total success with yours...
Peace Out!
Seb

Hi.

Yes, if I am successful, then I will be getting better support than I currently have. It may be that I will need to have a MR and appeal, but that may lead to me being much better off, in every way. So, the process will be v. challenging, energy wise (my health is suffering going through all this), but potentially fruitful in the end. I've not had the right support for a long time.

Re: assessment. It isn't easy having someone with you listening to the difficulties you have with everyday life, but they are a witness to the assessment and can take notes on everything you say during it. A family member, partner, would be best as they tend to know what you experience, but only you can decide that. Do what feels right for you. Good luck.