Are you Disabled?

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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

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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

Review: Can Post-Exertional Malaise make a Placebo Effect seem like a Nocebo?

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Does Post-Exertional Malaise lead to unusual Placebo Effects in ME that seem more like Nocebo? This post explores my experience of a Placebo controlled experiment. Continue reading

Is it About Getting Better or NOT Getting Worse?

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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

Resource: Walking Problems

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This post includes tips that may help you with walking and muscle problems. Topics covered include mitochondrial function (MitoQ, D-Ribose, AMPK activation), lactic acid, electrolyte balance, autonomic function, pacing and adapting. Please comment on what I’ve missed out. Continue reading

Shouting About POTS

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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

How to Read a Newspaper

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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

Review: Mendus and a Quantified ME

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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

Resource: Tips for Living with Illness

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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