An attempt to pull apart my POTS, ME and post Covid symptoms
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.
I will try to frame this in the sense of exploring how we process fear of death
Email the NIH and get your voice heard in ME research strategy. This post is my input.
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.
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?
My home version of a study into blood glucose and personalised nutrition
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.
I'm writing more for other places, as well as my blog. This week was my 1st #MEaction post
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.
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.
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.
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.
Quick Tips for Pacing. These may be new ideas to you or simply a reminder.
A post discussing different forms of Pacing and the difficulties involved.
Is CFS "Real"?
Tongue-in-Cheek contemplation of the un/reality of CFS.
Using quirky symptoms to get to the bottom of what's going on.
Update on my POTS diagnosis.
TH2 dominance?
Tips for ME 