Inclusion would be NICE

An update on my recent busyness with NICE guidelines and the Chronic Illness Inclusion Project Continue reading

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Are you Disabled?

On Twitter there have been some interesting discussions this week about disability identity and ME. I think this is worth everyone with ME thinking about. For most of us ME is enduring, substantial & has a significant effect on our life. These are the very requirements of defining a disability. Continue reading

Paradoxical Research Funding

An argument has erupted this week between UK psychologists and funders that has relevance for the problems we face with ME research. Could a common purpose create a very unexpected alliance to improve appropriate allocation of research funding? Continue reading

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

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