Hi,

The Department of Health and Social Care, in all their email replies, have said that as the National Institutes of Health and Care Excellence no longer recommends Graded Exercise Therapy and Cognitive Behavioural Therapy as 'treatments' patients will no longer be harmed and there is no need for the reporting system we are campaigning for.

I beg to differ.

Some medical professionals across the UK are continuing to recommend GET (under a range of new rebranded terms) and CBT as 'treatments'. Some are also rebranding Pacing to mean a steady increase of activity and raising the 'baseline' rather than what the M.E/C.F.S patient community knows it to be - how we manage our energy levels to stay within our 'energy envelope' to avoid over exertion. This is now yet another non-pharmaceutical activity that causes harm to ME/CFS patients.

The harm continues.

If you have ME/CFS, live in the UK, and have been recommended GET (under any name) or CBT as 'treatments' or 'a cure' since the NICE guideline was changed on 29 October 2021, please do email me with the details. I want to 'prove' that the potential harm from these 'treatments still remains. I need your help to prove this. 

Email me (Sally) via mefoggydog@gmail.com.

I'll need:

Your name (I can use initials if necessary or make it anonymous)

What 'treatment' you were offered?

Date

Location (County is sufficient if you do not want to identify yourself)

Did you participate?

What happened? Did it cause you to deteriorate? 

Thank you.