Diary Day 103: Keep Writing, Do I Know Someone With Undiagnosed ME, Language Is Our Barrier, Canary In The Coalmine.

It’s been a while, again, since I’ve written. It seems these days that every day that goes past there’s some new news that affects me, you, our community. Originally this week I wanted to sit down and write about how difficult I find it explaining to anyone what ME is actually like. I mean, words, […]

Diary Day 103: An Open letter To Stephen Crabb – I’m Disabled According To ESA But Not Entitled According To DLA and PIP

An open letter to Stephen Crabb… With the shock resignation of IDS this weekend and all the spin that’s happened I think it’s important to set out my experience of Employment and Support Allowance, applying for the old benefit for Disabled People called DLA and my decision NOT to apply for the new benefit for […]

Diary Day 102: The Care Plan For CFSME Patients, What, No Prognosis?

It’s never happened. What? I hear you ask. Oh, being told what I can expect from this illness, my illness, CFSME. What do you mean? I’ve never been told by anyone I’ve seen in the medical profession, including GPs, Clinical Psychologists, Occupational Therapists, Nurses or Physiotherapists – i.e. all the people I’ve seen for CFSME […]