Diary Day 107: Research Needed, MECFS Is A Spectrum Disorder, Energy Finite Though?

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 […]

Diary Day 106: Boundaries Abt CFSME, GET, Friendship, Learning.

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 […]

Diary Day 104: Talking About ME Symptoms, Gap in NHS Care, Grief, Cancer, Carer, What An ME Crash Feels Like Post 1

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 […]

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 97: Clinical Depression And MECFS – Post 1

This is a follow up post from yesterday, which was about how I manage my sleep problems using a prescribed drug from my GP called Mirtazapine (MTZ.) MTZ is an anti-depressant and with the history of ME being mistaken for, or treated as a primary mental health condition, I wrote yesterday’s post knowing it is […]

Diary Day 96: On Mirtazapine That Helps My CFSME, Plus SSRI Antidepressants and Amitriptyline

So, yesterday I blogged about  how I’m taking control of the things I know affect my ME symptoms in an attempt to gain more quality of life. I signed off saying that I would be more silent here – on the blog front-  in order to finish other writing I’m doing. Famous last words! It’s me, […]

Diary Day 93: Having A Nasty Winter Cold Makes Me Look Back On Journey With MECFS

It was inevitable: it’s winter, I am running central heating for the first time in 2 years and I’ve just been through a house move, which for someone without ME would be stressful, but for someone with CFSME is doubley so. Yup, I’ve got a nasty horrible cold. My nose has been blown constantly since […]

Tory Majority Day 85: What’s Also Wrong With The MECFS PACE Trial – The NHS Should Have Done The Critical Analysis So Tom Kindlon Didn’t Have To

I’ve said beforehand in this blog that I come from a varied professional background and that includes working in the UK NHS. That was before I got MECFS, that is. I’m not now fit to work in any capacity, so rapacious is this illness for which in the UK there is only one treatment option within […]

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 82: Renting on Housing Benefit In London, The Flat Is Secured, A Welcomed Break Beforehand.

” I hope you don’t mind me saying this, but you’d have never get better unless you moved on from your old flat, Lindy,” said CB, my friend who also has CFSME.  “It’s OK to say that, I really do know how true that is,” came my reply. She and I were sitting outside in […]