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 105: An Open Letter To London Mayoral Candidates About The Housing Crisis

Dear Mayoral Candidate, This letter is to set out what I see are the failings in policy that I am looking to you to address, in order for me to decide on who I vote for in the London Mayoral Elections. For many years I’ve been on the receiving end of the housing crisis in […]

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 […]