Inclusion would be NICE

In July I’ve been over busy so I don’t have a Tips post for you (except for saying  “don’t get over busy if you have ME!”) but this is an update about what I’ve been up to. I’m actually doing reasonably well ME wise, I expected much worse PEM.

I’m working on the new Chronic Illness Inclusion Project with Catherine Hale (Jenny Horner is my married name, I use Lyus for work and official stuff). We are at the very beginning of a three year participatory social research project funded by Disability Research on Independent Living and Learning (DRILL). The long term point of this is to build a stronger voice for the chronic illness community within the wider Disabled People’s Movement and potentially influence social policy. This is particularly important in the face of worrying developments such as the Medically Unexplained Symptoms agenda now relating to most Spoonie conditions, meaning that some of issues that were specific to ME politics extend to most of us with these energy limiting illnesses (not at all the direction I’d hoped things would go!).

Most of my recent effort on the project has been building the website, so please have a look at and let us know if anything doesn’t make sense or you spot any website glitches. To keep up to date with the project, click on the big Get Involved button on our website. You will sign up to our mailing list and be the first to know about new developments and blog posts, but you don’t commit to anything in particular by signing up. The first phase will be a small qualitative piece of research, so please bear with us as we organise that.


Catherine was recently interviewed for the Disability News Service (read here) IMG_2162

Catherine will also be on the BBC Ouch! disability podcast this week, which is quite exciting for me because I often listen to that show anyway.

My other busyness has been working on the #MEAction UK response to the provisional NICE conclusion that the ME guidelines don’t need to be updated. This is a scandal on top of scandal, as anyone familiar with UK ME politics will know.

You can read our response by clicking here.

There is also a good write up of all the ME charities’ responses here, in the LGBT magazine Vada.

If you’re interested in this topic, you’ll also be interested to know that a whole issue of the Journal of Health Psychology has been turned over to the debate over the PACE trial. From next week you can read for free at this link. This feels personally significant to me because I chose Health Psychology units at university in response to living with my sister who had ME (and having undiagnosed ME at the time). I read the Journal of Health Psychology at university, so I can vouch that it isn’t a flash in the pan and is seen as academically credible.

On top of all this busyness, I have some personal medical frustrations going on. Since my Paralysis episode last May (see this post), this and walking issues have been getting more problematic, at the same time as my general ME symptoms improving. Doctors have been thinking I may have a primary muscle disease (pattern of proximal muscle weakness and some abnormalities on the EMG test). A second opinion neuromuscular specialist ruled this out but then he created the admin error of discharging me back to my GP, when as a second opinion he was meant to refer me back to the previous neurologist to carry on investigations. The best case scenario now is I wait for months to go back to the neurologist. I’m used to being patient with the NHS but this is different as it feels progressive. I think I’m going to go private for the first time in my life.

For the next couple of weeks I’m taking some time off from advocacy and research activities, to have a proper rest and perhaps even some fun, if my health will permit such a thing.

3 thoughts on “Inclusion would be NICE”

  1. Heart rate based pacing …which inevitably means resting much much more than you were doing is being used by many patients to good effect. It is science based the physiology is sound, the science is basic exercise science and the metabolic abnormalities and abnormal heart rate patterns are objective and clear…Maybe patients could lead the research instead of reacting to the bps mob???

    Liked by 1 person

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