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. Continue reading

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. Continue reading

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. Continue reading

Resource: Tips for Living with Illness

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. Continue reading

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 Continue reading

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. Continue reading

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. Continue reading

The Princess and ME: a Paradoxical Curse

pic http://fc02.deviantart.net/fs71/i/2010/291/2/d/the_lady_of_shalott_by_rottenragamuffins-d311uip.jpg

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

Resource: Quick Tips for Pacing

Quick Tips for Pacing. These may be new ideas to you or simply a reminder. Continue reading