Diary Day 114: How To Have A Life and CFSME – A Spoonie’s Progress

It’s been a couple of months since I last blogged and that’s because I’ve been grasping the nettle of life!  It’s almost my 5 year anniversary of being diagnosed with CFSME. To some that’s a newbie, to me it represents 5 of the hardest years I’ve ever been through, period. But I’m 5 years into […]

Diary Day 112: CFSME Makes You Diabetic, Discuss.

A year ago I had a series of blood tests at my GP’s.  The blood tests were standard screening for, amongst other things, how my body reacts to glucose. This is known as a fasting insulin test. When I was diagnosed with ME in 2010, the gateway blood tests that are done to confirm the […]

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 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 […]

Diary Day 100: Reading Postive Press About The MECFS PACE Trial Upsets Me Again

I’ve been focussing my attention on other things recently – well, focussing what attention I have towards other things recently – I should say. Occasionally though, something has popped up in my timeline through stories that are circulating in the news, or via the ME charities and they pull my attention back towards CFSME and […]

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 90: Pace Trial 5. Using Likert Scales Postively Skew Research Results. Anyone Got Copies Of PACE Case Report Forms?

(Screen capture from Measurement In Health Behaviour: Methods For Research and Evaluation by C K Dilorio)  I’m keeping today’s post short as the last 2 have been long and at times technical and my brain hurts, I didn’t rest enough yesterday and felt awful because of it. I don’t know about you!! Yesterday I re-read the […]

Diary Day 89: PACE Trial 4. Confounding Variables, CBT And Desperation By The Time You Accept NHS Treatment

On a roll about the PACE trial, aren’t I 😉  It’s first thing in the morning, I’m still in bed and I’ve started to write. This is the only time of the day when my brain works well. Usually I wouldn’t do anything right now, except having a bath and getting dressed, saving energy for […]

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 […]