Yesterday I wrote a fairly long post about how establishing research exploring the MECFS spectrum could change the context that the PACE Trial is viewed in. Overnight I woke up and thought about it again. “There’s something much more simple and obvious,” I thought. It’s to do with the oft-quoted adage in research, “correlation does […]
Yesterday I blogged about meeting a new friend for a cuppa. While we were talking she talked about the in’s and out’s of having a child who is Autistic. Then we talked about the in’s and out’s of having CFSME. It’s the first time I’ve had to explain my experience of CFSME with someone who […]
This week’s been ‘one of those weeks.’ It started with a day on Monday that knocked me sideways, or should that be, laid me flat. From early in the morning as I got up to get ready to see my counsellor I could tell something was wrong, really quite different and wrong. My back and head […]
Dear Mayoral Candidate, This letter is to set out what I see are the failings in policy that I am looking to you to address, in order for me to decide on who I vote for in the London Mayoral Elections. For many years I’ve been on the receiving end of the housing crisis in […]
This weekend is an anniversary. It’s the anniversary of 2 years since I went into a steep decline in my functioning and symptoms that people with ME call a ‘crash.’ I went from being a moderate ME patient to a severe ME patient in the space of about a month. In my case, the […]
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, […]
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 […]
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 […]
On Sunday afternoon, my family were visiting. It was the first time they’d seen me since Xmas, which, for a group of relatives who all live in London, and all regularly visit my silver surfer Dad, is an example of how much planning it takes for me to host a social event at my place. Honestly, […]
Hi everyone, When I started this blog in May 2015 it was high on the anger about the Tories winning the last election and it cost me money, money I don’t have to renew the domain name disabledintorybritain.com! So this is advance warning that over the next month I’ll be swapping to it’s free address […]
Disabled In Tory Britain 