Contribute to NIH Research Strategy

Email the NIH and get your voice heard in ME research strategy. This post is my input.

Paralysis and PACE

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 …

10 insights on life: Awareness through ME

10 insights: This ME Awareness Day #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards through ME, as opposed to turning the lens on ME itself.

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.

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?

Resource: Home Hacking Blood Glucose

My home version of a study into blood glucose and personalised nutrition

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

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.

MEaction Post

I’m writing more for other places, as well as my blog. This week was my 1st #MEaction post

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.

Resource: Walking Problems

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.

Spoonie Poem

A poem written for National Poetry Day with an explanation of why it is what it is.
A Twitter strategy for using trending hashtags for ME and Spoonie Awareness.
Planning a novel.

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.

Unknowing-Knowing: Epistemological Crisis in ME

An exploration of the crisis of not knowing which sources of information to trust.

Resource: insomnia, what works best? Sleep 4

A list of sleep aids in the order of effectiveness for me. Includes links to relevant posts which may help insomnia.

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.

Review: Mendus and a Quantified ME

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.

Resource: Tips for Living with Illness

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.