Thank you if you have already signed and supported this petition.

As I have said many times, a new mechanism to report harms from non-pharmaceutical treatments will benefit many patient groups, including M.E/C.F.S and Long Covid. That is visible in some of the comments on this petition, people from a range of patient groups have signed (Thank you). All patient groups and the public need to come together to make this campaign successful. If any patient groups (other than ME/CFS and Long Covid) want to write something for one of these updates please do get in touch with me (mefoggydog@gmailcom). Tell me what non-pharmaceutical treatments can harm your patient group and how patients are impacted.

My two social enterprises both work for the benefit of the ME/CFS patient community (mefoggydog.org and stripylightbulb.com), and this issue of a reporting mechanism has been on my radar for a long time, this years' NICE guideline update has brought the issue to the fore. 

Transparent M.E/C.F.S advocacy is what I do, and have been doing since 2014. I have 'mild' M.E/C.F.S myself. Take a look at the video to see how Post-Exertional Malaise affects me. In my case, I over-exerted cognitively and by dealing with a stressful situation - PEM doesn't always involve physical activity. The human body uses energy in a number of different ways! Post-Exertion Malaise can be much worse in a majority of M.E/C.F.S patients, sometimes something as 'simple' as cleaning our teeth or walking slowly to the bathroom can cause a 'crash'. This is why recommending exercise as a 'treatment' makes no sense! Patients need somewhere to report harms.

Brain fog = a few jumbled words.

(I hope this update makes sense!)