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 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 78: Why I Did Graded Exercise Therapy For MECFS And What It Was Like Plus CFSME and Diabetes

At the bottom of yesterday’s post, a reader posted a comment about why I’d written:  “None of them have helped my symptoms, except Graded Exercise Therapy. GET confirmed to me that I can do a bit of exercise and described exactly how much that is before I decline. It was useful in that way.” GET can […]

Tory Majority Day 48: Packing and Pacing, Spoon Theory, Dodgy Knee and The Day Before The Welfare Cuts

Before I write this, I want to give a big thank you to everyone who reads my diary and has sent me kind, supportive and thoughtful words over the last week.  One of the things that I’ve found about the ME community is that everyone knows how it is better than ANY medical professional or […]

Tory Majority Day 39: Type 2 Diabetes and MECFS, Graded Exercise Therapy, On Your Bike?

In September last year a set of routine blood tests carried out by my GP told me something that I literally did not see coming: I was at risk of developing Type 2 Diabetes.  Before ME diagnosis – A OK – blood glucose normal. 2 years in to having ME – this! The blood tests were […]

Tory Majority Day 22: ME Association Report And A Conversation About CBT

In the last 24 hours I had a conversation that has changed my outlook on CBT and CFSME. Hard on the heels of that chat, this morning I woke up and found that the ME Association had published a report into patient experiences of GET, CBT and Pacing therapies. I read it. In that report, […]

Tory Majority Day 18: Reading The Observer Article, Ian Duncan Smith, 12 Bn Welfare Cuts

It was bank holiday Sunday yesterday and I got out of my home to go out for the short walk I’m meant to do daily to maintain my fitness – this is a form of Graded Exercise Therapy and yes, it’s something I’ve been advised to do by the NHS CFSME clinic.  The sense of exhaustion that I […]

Tory Majority Day 9: Counselling, Pathways To Healing MECFS, Paying for Treatment, ESA

About a year ago I got to the point where I decided that I needed somewhere to go to work through all the changes that having MECFS has brought to my life.  Hmmm. Beginning to write this, I don’t know how best to explain this without giving the impression that MECFS might be a Psychiatric problem. God, […]