Everyone has had the experience of finding song lyrics meaningful to their circumstances, despite this not being the original purpose of the lyrics. An ME Awareness Day playlist with some explanation could be a new angle to help you understand my experience. Continue reading
An update on my recent busyness with NICE guidelines and the Chronic Illness Inclusion Project Continue reading
What would Florence Nightingale do if she was alive today with ME? Continue reading
This post describes my recent ‘minor ailments’ and raises ideas about highlighting sick on Sick Continue reading
You know people the rest of us don’t know and we need their support. Continue reading
It is not about presenting logical argument. It is about values and emotions. Values trump facts. Every time. Continue reading
Email the NIH and get your voice heard in ME research strategy. This post is my input. Continue reading
I’ve tried to tell this story how it unfolded without too much meaning making. Hopefully the contrast is clear though. I would be surprised if the hospital doctor wasn’t influenced by PACE and it’s repercussions. Continue reading
10 insights: This ME Awareness Day #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards through ME, as opposed to turning the lens on ME itself. Continue reading
On Twitter there have been some interesting discussions this week about disability identity and ME. I think this is worth everyone with ME thinking about. For most of us ME is enduring, substantial & has a significant effect on our life. These are the very requirements of defining a disability. Continue reading
An argument has erupted this week between UK psychologists and funders that has relevance for the problems we face with ME research. Could a common purpose create a very unexpected alliance to improve appropriate allocation of research funding? Continue reading
A poem written for National Poetry Day with an explanation of why it is what it is.
A Twitter strategy for using trending hashtags for ME and Spoonie Awareness.
Planning a novel. Continue reading
A post for Dysautonomia Awareness Month to raise consciousness of the need for #pwme to check for POTS.
Around 1/3 of pwme have POTS and it is often undiagnosed. This post gives some suggestions for how to go about finding out if this applies to you and what you can do about it.
I also speculate about the recent Rituximab research, showing autoantibodies towards adrenergic and muscarinic receptors, as a possible explanation of POTS in ME. Continue reading
A May 12 Blog Bomb post. Continue reading
The Princess and ME a tale of the Paradoxical Curse…
Some people said “this is a potion to cure all ills” so she tried all their potions, but rather than breaking the curse each made her feel worse. “Such a Princess!” the people say who feel well everyday. Continue reading
Today is Severe ME Day. My plan was to write a post about the Pomodoro TechniqueTM (as a form of pacing) this week. However, my experience last night has led me to change tack. Yesterday evening I got deeply upset, … Continue reading
The Tale of the Princess and ME A visual tale of one princess’ journey through ME/CFS using illustrations from fairytales. “Do not be satisfied with the stories that come before you. Unfold your own myth.” Rumi. There are still princesses … Continue reading