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 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 104: Talking About ME Symptoms, Gap in NHS Care, Grief, Cancer, Carer, What An ME Crash Feels Like Post 1

This weekend is an anniversary. It’s the anniversary of 2 years since I went into a steep decline in my functioning and symptoms that people with ME call a ‘crash.’   I went from being a moderate ME patient to a severe ME patient in the space of about a month.  In my case, the […]

Diary Day 102: The Care Plan For CFSME Patients, What, No Prognosis?

It’s never happened. What? I hear you ask. Oh, being told what I can expect from this illness, my illness, CFSME. What do you mean? I’ve never been told by anyone I’ve seen in the medical profession, including GPs, Clinical Psychologists, Occupational Therapists, Nurses or Physiotherapists – i.e. all the people I’ve seen for CFSME […]

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 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 96: On Mirtazapine That Helps My CFSME, Plus SSRI Antidepressants and Amitriptyline

So, yesterday I blogged about  how I’m taking control of the things I know affect my ME symptoms in an attempt to gain more quality of life. I signed off saying that I would be more silent here – on the blog front-  in order to finish other writing I’m doing. Famous last words! It’s me, […]

Diary Day 93: Having A Nasty Winter Cold Makes Me Look Back On Journey With MECFS

It was inevitable: it’s winter, I am running central heating for the first time in 2 years and I’ve just been through a house move, which for someone without ME would be stressful, but for someone with CFSME is doubley so. Yup, I’ve got a nasty horrible cold. My nose has been blown constantly since […]

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 […]