PIP awarded at Enhanced Rates for CFS

Once again, I want to convey my thanks to Benefits and Work and the Forum. I've been awarded Enhanced rates for mobility and care until Dec 2020. I have severe ME and chronic migraine so feel this is a real result. If you have this illness, follow the PIP guide on this site to the T and use the CFS diary as that enabled me to identify the truth about my needs and be firm when giving my answers on the form and at assessment, which can be difficult when you're trying to talk succinctly about ME/CFS.

Congratulations. I also have ME but moderate to severe with a private diagnosis of Chronic Lyme Disease. I was on DLA higher mobility for many years but lost it last year due to change to PIP. I got as far as the appeal but bottled out at the last minute. Regret it now but I the process made me so ill last year as you would understand I'm sure. Nobody knows unless they have the disease what it feels like. Anyway, your testimony on the newsletter has encouraged me to renew my subscription to Benefits at Work and try again somehow. What I found was I got very angry with a system that was forcing me to engage in a level of activity that my doctors would advise me not to engage in! I felt suicidal because of this. My head just kept getting into a muddle I was fearful this would lead to inconsistencies in my defence and I would be deemed an unreliable witness. That hopeless feeling of damned if I do, and damned if I don't. Now where to start again?

I too have severe CFS and am applying for PIP. Do you mind me asking whether it was a home assesment that you had? Oh, and congratulations on obtaining the enanced rates until 2020 by the way.

Hello Maninthemoon, I know just what you mean. I am currently being forced beyond my capacity again by the ESA and it makes me feel incredibly angry, and then suicidal. I also worried about being an inconsistent witness and unable to advocate for myself and this was why it was so helpful to keep a CFS diary like the one Benefits and Work suggest. It enabled me to work out an average for how often I could or couldn’t do things eg 20% of the time I can’t cook a simple meal, 60% of the time I use a microwave and the rest of the time I’m able to use the cooker. I hadn’t realised before keeping the diary that I was unable to cook that often. I memorised all the percentages for each activity (quite a challenge with such a poor memory) and when my assessor asked me about cooking a meal, 3 times in a row, I was able to stick to my guns, sure that I was telling the accurate truth. The assessment got easier after that as she only asked the rest of the questions once. I hope you did go ahead and apply again, I’ll keep an eye on this post in case you reply.

Hello Twinkle, no, it wasn’t a home assessment but I use a wheelchair so it was obvious how bad my fatigue is. I hope your PIP claim was successful.