Diary Day 109: 12th May ME Awareness Day, Milgram Experiment, PACE and The NHS

I missed writing something for 12th May, international ME awareness day this week but I read a lot of really good posts on people’s blogs that commemorate those lost and missing because of this disease.  I wondered what I wanted to write for ME Awareness Day. The thought: “write about what you know,” kept running […]

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 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 101: An Example Of How MECFS Really is. Yes Really.

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, […]

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 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 91: In My New Home, Housing Benefit, Patient Group Direction Flu Jab, Telling Pharmacist What MECFS Is

….and hello December!  It’s more like the end of February down here at the moment, the sun is shining in the way it does when the season is changing from winter to Spring and you feel that warmth is coming. Maybe it’s also my good mood warming me up because I’m firmly ensconced in my […]

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 […]