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…

View original post 2,981 more words

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s