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 […]

Tory Majority Day 84: Why I Don’t Pick Up The Phone – MECFS and Noise Sensitivity or Hyperacusis

Yesterday my dodgy ex-landlord accused me of not picking up the phone when he called.  The day before, The Telegraph had published an article about GET and CBT, the UK NHS treatments for CFSME. I was vocal over Twitter about the bad news the publication of this article meant for the ME community. Yesterday The Telegraph […]

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 77: What Works – My Rule Of Thumb For Getting MECFS Symptoms Reigned In

I’m suffering from an increase in MECFS symptoms at the moment but if you follow my diary you’ll have read how it feels pretty much every time I post. There’s never a day that goes past where the unwelcome guest isn’t in my life, so what do I do that makes it possible to manage the symptoms […]

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 31: Rest. Noun. An Essential Part Of Coping With CFSME

Rest / noun / [rest] An essential component to coping with CFSME symptoms.  The opposite of rest to someone with CFSME is “activity.” Dictionary.com defines rest as:  refreshing ease or inactivity after exertion or labor: to allow an hour for rest. relief or freedom, especially from anything that wearies, troubles, or disturbs. a period or interval […]