Diary Day 118: Standard Letter For MPs Green Paper Work Health and Disability Improving Lives

Here is the link to the documentation: Link to Government Green Papers  At the bottom of this blog post is a standard letter for you to copy and paste and send to either your MP or disability rights organisations.  Here is a link to a Consultation form which asks questions in order for them to […]

Diary Day 117: UK Government Work Health and Disability Green Paper Improving Lives

https://www.gov.uk/government/consultations/work-health-and-disability-improving-lives/work-health-and-disability-green-paper-improving-lives Over the last week I was aghast at the news yet again. The UK Government’s volte face regarding their approach to sick and disabled people in the benefit system is another assault in the arsenal of attacks meted on those too unwell or disabled to work. Remember when Theresa May took over as PM […]

Diary Day 116: Will Publishing The CFSME PACE Trial Data Topple The NHS?

I stand alongside many bloggers, clinicians, academics and interested parties who have been calling for the publication of the PACE trial data. I am delighted that the last few weeks has seen a legal ‘win’ for all those people and more. One question predominates: “Why all the fuss about releasing the data anyway? If it’s […]

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 108: PACE Trial and Yesterday’s Post About MECFS Spectrum

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 […]

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 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 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 […]