Differentiating Post-Covid PVFS, existing ME and POTS

An attempt to pull apart my POTS, ME and post Covid symptoms

Paralysis and PACE

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.

Resource: Walking Problems

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.

Shouting About POTS

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.

How to Read a Newspaper

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.

Review: Mendus and a Quantified ME

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.

ME Awareness Blog Bomb

A May 12 Blog Bomb post.

Resource: Guided Meditations for Alternative Pain Relief

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

I am POTS but what’s ME?

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.

Resource: Homemade BB Cream and Foundation

Recipes to create cheap, non-toxic beauty products including BB cream (tinted moisturiser with some sun protection factor), foundation, bronzer and facial oils.

Resource: Easy Haircare for the Chronically Ill

Blog post with tips on how to spend fewer spoons of energy on haircare, including a haircut in just one snip of the scissors. Also ideas on natural options which are good for people with multiple chemical sensitivity.

Resource: Homesharing for Pacing

Information about Homesharer Schemes - provide a free room and get around 10hrs a week support to stay in your own home.

Quirky Symptoms Detective Work

Using quirky symptoms to get to the bottom of what's going on.

Update on my POTS diagnosis.

TH2 dominance?

Am I PoTS or is it just ME?

Attempts to disentangle #PoTS and #MEcfs: Some observations from my experience of the diagnostic process.

Resource: Essential Oils List for ME

pic of valerian

A very brief summary of the reported properties of oils which may be useful for chronic illness.

Resource: Aromatherapy for Spoonies

pic of valerian

I have no expectation of being Cured through aromatherapy. However, I have found that some oils help with some some symptoms. Recipes can also have a synagistic effect and so I've written up a few that I use below. You may also want to read this review and this list of essential oil properties. It isn't free but some of the oils are £1 on ebay and last a long time (use this search to find them). You don't have to use every oil in the recipe. The first 5 oils I'd buy would be: grapefruit, rosemary, basil, clary sage and lavender (≅£7).