Tory Majority Day 88: Pace Trial Post 3. The Link Between That And My Experience Of CBT In An NHS CFSME Clinic

I’ve never read so much about a piece of clinical research as I have about the PACE trial. The storm – and that’s the right word because it IS a storm – of responses from across the globe and on social media has been simply breathtaking. WOW! I’ve also been taken by surprise by how […]

Tory Majority Day 84: Why I Don’t Pick Up The Phone – MECFS and Noise Sensitivity or Hyperacusis

Yesterday my dodgy ex-landlord accused me of not picking up the phone when he called.  The day before, The Telegraph had published an article about GET and CBT, the UK NHS treatments for CFSME. I was vocal over Twitter about the bad news the publication of this article meant for the ME community. Yesterday The Telegraph […]

Tory Majority Day 78: Why I Did Graded Exercise Therapy For MECFS And What It Was Like Plus CFSME and Diabetes

At the bottom of yesterday’s post, a reader posted a comment about why I’d written:  “None of them have helped my symptoms, except Graded Exercise Therapy. GET confirmed to me that I can do a bit of exercise and described exactly how much that is before I decline. It was useful in that way.” GET can […]

Tory Majority Day 77: What Works – My Rule Of Thumb For Getting MECFS Symptoms Reigned In

I’m suffering from an increase in MECFS symptoms at the moment but if you follow my diary you’ll have read how it feels pretty much every time I post. There’s never a day that goes past where the unwelcome guest isn’t in my life, so what do I do that makes it possible to manage the symptoms […]

Tory Majority Day 76: The Realisation Of The Limitations Of Having MECFS

It’s become obvious again: that this condition, this illness, this disability steals your life, your health and your choices. I’ve been having obvious spikes in symptoms over the last month. It’s not that I was well before the last month, honestly I wasn’t, but today I realised that before pressing the big red button to […]

Tory Majority Day 73: Voting in Labour Leadership, Decorating, Post Exertional Malaise, Flathunt Stalled.

I almost forgot to vote in the Labour Leadership, which is incredible as the volume of emails from Tessa, Sadiq, Jeremy, Ken – he supported Jeremy, David, Diane, erm all the others and then them all over again, and again, and again AND again was an avalanche. It certainly isn’t the case that I had […]

Tory Majority Day 57: The Stress Tornado Passing, Payback, Sleep, Light Appears

How long has life felt like this? Since June, when I started the ball rolling by asking my dodgy landlord to move. It’s been weeks at a much, far higher level of activity that I’ve experienced since the long-ago, beginning months of holding down a job with a new diagnosis of MECFS. The last weeks […]

Tory Majority Day 56: Eviction For Repairs, Lettings Agents Reaction To The Housing Benefit Question

Yesterday I wrote about how a series of circumstances had left me with one option: to contact my dodgy landlord and tell him I wasn’t moving after all. Good mental health and self care I did hang  over my email and phone all day on Tuesday waiting for an answer, yes, but I didn’t get […]

Tory Majority Day 54: Crash, Payback, Reason For The Gap In Writing, Thanks Tommy Walsh

I should have seen it coming – a crash, that is. Rather unsurprisingly after all the events of the last few weeks I had a crash which started last Thursday afternoon. For anyone reading who isn’t a spoonie or doesn’t know what a crash is, it’s a term that is used by people who have […]