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 113: Diabetes and MECFS – The Results, GP Advice, The Barriers To Change

Yesterday I Googled “MECFS and Type 2 Diabetes.” There were various links on the 1st page of search results. The link is in that sentence. Included in the list was this blog’s category “MECFS and Type 2 Diabetes.” You can find all my posts on this subject by clicking on that link to the right of […]

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 106: Boundaries Abt CFSME, GET, Friendship, Learning.

This week’s been ‘one of those weeks.’  It started with a day on Monday that knocked me sideways, or should that be, laid me flat. From early in the morning as I got up to get ready to see my counsellor I could tell something was wrong, really quite different and wrong. My back and head […]

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 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 94: Refocussing From MECFS Via Spoon Theory, Improving Quality Of Life.

Happy New Year readers! A bit late, I know, but recently I’ve been attempting something. I’ve been using Spoon Theory to try to give myself a bit more of something kind of special – a better quality of life (QOL). Before I carry on, aside for some life and health related basics measured for all, my QOL is […]