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
I will try to frame this in the sense of exploring how we process fear of death 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
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
My home version of a study into blood glucose and personalised nutrition Continue reading
Does Post-Exertional Malaise lead to unusual Placebo Effects in ME that seem more like Nocebo? This post explores my experience of a Placebo controlled experiment. Continue reading
I’m writing more for other places, as well as my blog. This week was my 1st #MEaction post Continue reading
Is it not so much what you do as what doesn’t happen that determines recovery from ME? Musings in light of the finding of little difference between treatment groups at the PACE follow up. Is relapse more important than improvement? Tips for preventing relapse. Continue reading
This post includes tips that may help you with walking and muscle problems. Topics covered include mitochondrial function (MitoQ, D-Ribose, AMPK activation), lactic acid, electrolyte balance, autonomic function, pacing and adapting. Please comment on what I’ve missed out. 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
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
Quick Tips for Pacing. These may be new ideas to you or simply a reminder. Continue reading
A post discussing different forms of Pacing and the difficulties involved. Continue reading
Is CFS “Real”?
Tongue-in-Cheek contemplation of the un/reality of CFS. Continue reading
A discussion about the ME community’s response to the Biopsychosocial Model and SEID.
Using quirky symptoms to get to the bottom of what’s going on.
Update on my POTS diagnosis.
TH2 dominance? Continue reading