Just the other week, I spoke at the annual conference of the RME, the Swedish National Association for ME. In my lecture, I took another look at the new ME/CFS guideline as published by NICE about one year ago. While I covered ground that might be familiar to some, it was useful to consider how things look now as the guideline approaches its first anniversary.
Here is what I said:
As part of the conference, there was also a panel discussion, where I addressed some questions. You can see my responses here:
Finally, my lecture referenced this recent article in the Irish Times, which describes the lives of people with ME in Ireland, as well as the emerging (and quite promising) developments in how the illness is being treated here. It highlights the real potential for the new NICE guideline to exert a ripple of influence on treatment approaches around the world. Here, for example, is a key passage:
Although the underlying mechanism of ME is still poorly understood, the idea that it is a serious physical disorder is no longer controversial. In Ireland, the HSE is in the process of developing their first ever clinical guidelines on the disease. HSE national clinical adviser Dr Ciara Martin chairs a multidisciplinary group of clinicians and patient representatives devising these guidelines and she hopes to see it integrated into the training of medical professionals in time. It’s too early to get much detail on this but it will do one key thing, she says. “It will establish ME as a biological illness. That has always been the concern of people with ME, that old fashioned stigma that it was a psychological one.”
It is refreshing to see health authorities following the science like this.
Here’s hoping that ripple of influence becomes a tsunami.
* * *
With thanks to Kerstin Heiling and colleagues at RME, especially Henrik Fransson, for producing the videos.