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 49: The Tipping Point For My MECFS, Antibiotic Prescriptions Perhaps?

[I’d like to precede this post by saying that I’m not a medical doctor. Even if I was, what I am about to say is termed as ‘opinion’. In a nutshell that means I’m allowed to write about whatever I want to write about, because it’s my opinion only. Please don’t rely on what I’m […]

Tory Majority Day 46: Heatwave & Inner Temperature Problems In People With MECFS

Yesterday was the hottest July day on record. Many people with ME or CFS will have suffered acutely. This is because our inner temperature controls are broken, like a thermostat that has gone on the blink. I have to have hot weather or a hot environment to feel well and since it’s become summer my […]

Tory Majority Day 43: MECFS and High Hemoglobin Can Anyone Explain?

The crook of my left arm is filled with holes from the blood tests I’ve had done in the last week.  My weeks used to be punctuated by weekends and working weeks, weekend, week, weekend, week. Since last September they’ve been punctuated with diets and blood tests. Diet, blood test. Diet, blood test. I saw […]

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 […]

Tory Majority Day 27: I Don’t Know What More I Can Do, Council Home Application, PsychoSocial Model Is A Fallacy

I don’t know what more I can do. I thought about phoning the Council today to chase up my council flat application, again. It’s been forever since I submitted the medical evidence – 2 months ago now. Every day I’ve gone to the front door and picked up a collection of letters in brown and […]