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 →
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 →
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 →
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 →
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 →
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 →
This is a Guest Post article by Sarah Caddick. Capturing the Essence How to make the most of life when faced with great restrictions due to severe ME? I have been living with severe ME for several years. The restrictions … Continue reading →
What do you think? If I write more for MEaction it will probably mean fewer posts here, but I will post the links as a mini-post.
I’m also attempting a patient piece for the British Medical Journal. I don’t know if this will be accepted or not. I’m writing about how cognitive difficulties in ME/CFS combines with GP time constraints to create a barrier to effective communication. Adjustments can be made to overcome this though. Do you have any suggestions?