Signature numbers are creeping up slowly.

Rest assured I am doing as much as I can to make this petition and Shake It Up campaign successful. Today, I am recording a podcast with a range of people from the M.E and Long Covid communities and an article is due to be published later this week. I will post both as updates when available.

I received a reply from NHS CEO Amanda Pritchard a few days ago.

Here is an extract - 

'The NHS has a patient/public reporting route for patient safety incidents however, given the therapy will depend to a large degree on the individual’s own situation and tolerance, it may not be appropriate to use this for CFS/ME.  If a patient believes that a treatment they have received has not been effective or has had side effects, their normal first route to report this should be to the organisation that provided the treatment through the Patient Advice and Liaison Service (PALS).  This should enable adjustment of the treatment.  It also provides feedback to that organisation that may enable them to adjust the treatment they offer for other similar patients.'

Patients with M.E/C.F.S will know that we have been complaining about non-pharmaceutical 'treatment' harms to PALS for well over a decade. Yet, during the M.E/C.F.S NICE guideline review it was claimed that no patients have been harmed by Graded Exercise Therapy or Cognitive Behavioural Therapy (both non-pharmaceutical 'treatments'). This demonstrates that 'complaints' to PALS are not effective or centralised and counted. 

I have replied to Ms Pritchard and will update when a response is received.

Thank you for your support and please continue to spread the word about the Shake It Up campaign.