Has anyone with ME/CFS won an appeal for PiP?

[HecticHedgehog]

My adult child was diagnosed with ME/CFS and has been recommended to only work part time by their OT. As it stands they aren't working at all atm.

Pip was rejected, MR did not achieve anything so now looking at having to appeal but was told it's very hard to get pip for ME/CFS?

It's hard to get PIP whatever your condition. This website has excellent resources to help with an appeal. It's worth becoming a member.

www.benefitsandwork.co.uk

Yes - I know of someone who appealed it at a tribunal and won, the judge said it should never have got that far. Worth fighting for.

Yes, I've had DLA / PIP for ME/CFS for years.

It's been stopped at renewal a few times.

Then I go through the stages up to appeal and so far it has always been reinstated. Once it took as far as the appeal to get it, other times it has been reinstated sooner in the process.

I'm a wheelchair user who can't string two words together when tired, so while I'm not at the "entirely bedbound" end of the spectrum (been close in the past), I'm also not at the "could possibly work a little" end of it, either.

The big issue is getting the evidence. Could you help your child produce an activity diary over a few weeks, showing how much they've done each day (include mental work eg reading), and the impact of any days where they've pushed over the limit? Spell out the connection to the ME/CFS.

Also phrasing can make a difference. Don't say: "I can do it, but..." Say: "I can't do it, unless..." Because the decision-maker is likely stop at the first part of the sentence.

And I second Benefits and Work. They're where I learnt how to fill in the forms properly, to make sure relevant information got across whether the question appeared to ask for it or not.