Win an Ease ME/CFS Helper App

Recently, I had the pleasure of getting to know a person with ME/CFS from down under with some big motivations-to help other ME/CFS sufferers find the improved health and vitality he's been able to find for himself-using his great new app for iphone and he was gracious enough to give me five codes to raffle … Continue reading Win an Ease ME/CFS Helper App

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Paralysis and PACE

I had to share this harrowing experience Jenny conveyed on her blog. I myself have never experienced full paralysis and hope I never do, but I have had more than my fair share of frustrating experiences with hospitals and doctors who are condescending and clueless, as well you know.

My heart goes out to Jenny and I hope this experience remains an isolated incident for her. These kinds of experiences are exactly why people with ME must stick together and share what works with the community at large. We need each other and the few treatments we find, either alone or with health care providers. We also need the emotional support we can provide one another, as no one understands quite like another person with ME, even if we all experience this disease somewhat differently.

Tips for ME

I’m dictating this to Google lying down so the grammar Mike be a bit off. that is an example of what I mean which I’ll leave in for the comedy value, comedy is probably much needed in this post. I want to get my experiences down from this week before I forget them though. In the circumstances I believe you’ll forgive a little rambling and bad grammar for now.

The reason I’m recording this  is that I feel the  experience illustrates the dark side of what the  PACE trial leads to when you’re in an emergency situation (a large poorly designed study into CBT and Graded Exercise which despite long term null results has been popularly interpreted as meaning positive thinking and getting moving are the best approach to ME). it’s not all doom and gloom though there are also glimpses of what Healthcare can be like beyond PACE when…

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Paroxysmal Dystonia

One of the things that has kept me away from my blog for so long are fits that I have self diagnosed as paroxysmal dystonia.  At this point, they are self diagnosed because my Neurologist-make that FORMER Neurologist-thought it was simply sufficient to put me through an EEG to verify that I wasn't having epileptic … Continue reading Paroxysmal Dystonia

Curcumin: The Spice of Life

I am a person with myalgic encephalomyelitis (chronic fatigue syndrome, or ME/CFS) and for the last six months or so I have been stuck in the severely ill category. What this category means is that I am confined to my bed the majority of the time, unable to care for myself or function normally due … Continue reading Curcumin: The Spice of Life

A Most Unreliable Woman

I apologize for my woeful absence of late. I would love to promise that it won’t happen again and that I’ll be the ever loyal, prompt and courteous host from here on out, but if you know anything about Myalgic Encephalomyelitis, you know I’d be lying, no matter my intentions. So instead, I’ll tell you … Continue reading A Most Unreliable Woman