An attempt to pull apart my POTS, ME and post Covid symptoms
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.
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.
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.
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.
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.
We read about someone who's found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. This post unpacks some of our initial thoughts including:
They were never ill in the first place; They were ill but it's not true that they are now well; They can't have had what I have; It's true that they recovered but for a different reason; It's great that they found a way to get well; If I try that will it work for me? I've been ill much longer, I'd know if that works; Why have I been ill so long? It's not fair; The newspaper has got it wrong.
Join Mendus studies, data is considered more powerful if there’s more of it. If you join in with the Diet Study it will be become slightly more powerful than it is today in representing genuine effects in the ME/fibromyalgia population. With more participants these Mendus studies could also have greater power in a normal sense: they will make more noise and people will take more notice. This is your chance to get personally relevant answers to some niggling questions without having to wait years for university-based research to receive elusive funding.
This is a Guest Post by Sarah Caddick (who also wrote Capturing the Essence). It includes tips for carers and those with chronic illness on how to manage the caring relationship and also other tips for coping with day-to-day life with a chronic illness.
Some recommended products for a comfier Spoonie life. Tips for resting, light sensitivity, support clothes and bras.
A collection of free, guided meditations from around the web to help you cope with pain. Styles included: insight meditation, yoga nidra, seated T'ai Chi, and seated Qigong
Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition. This is a post which is more about asking for tips from you than offering tips. Please add POTS/ME based comments.
Recipes to create cheap, non-toxic beauty products including BB cream (tinted moisturiser with some sun protection factor), foundation, bronzer and facial oils.
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.