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 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 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 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 […]

Tory Majority Day 87: PACE Trial 2 – Why Wasn’t My Experience Of Attending An NHS CFSME Clinic Evaluated?

This is a follow up post from yesterdays about the PACE trial.  It could end up being quite technical so I’ll keep it short for those of us with brain fog or who don’t come from a health care background or aren’t that interested in research full stop! Outcome research is carried out in health care […]

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 […]