Metaphors in ME

Woman inside a bubble

What metaphors or images would you use to describe your experience of ME? 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

Is it About Getting Better or NOT Getting Worse?

Is it not so much what you do as what doesn’t happen that determines recovery from ME? Musings in light of the finding of little difference between treatment groups at the PACE follow up. Is relapse more important than improvement? Tips for preventing relapse. 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

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