In this podcast, we talk to 3 members of the M.E/C.F.S community about the need for a new reporting mechanism to report harms from non-pharmaceutical 'treatments'.
Listen here - 'Shake It Up'
This new system will benefit many patient groups including M.E/C.F.S and Long Covid.
#ShakeItUp - Please take part and #BePartofChange.
We are campaigning for a new system to report harms from non-pharmaceutical 'treatments'.
Anyone, anywhere, can sign the petition and we are also asking UK residents to 'Shake It UP a bit more' by emailing MPs and Lord Kamall.
All info and links -
Shake It Up
A few of the comments that have been added to the campaign petition by those who have signed-
'I am signing because I was out through GET and got worse. I got blamed for this. Not the treatment. The GET issue affect ME/CFS patients worldwide where currently in Australia we need to do this treatment to access government income and disability support.'
'This is so important. For ME patients becoming bedbound from GET, for autistic children being scarred from ABA. For everyone, just on principle. Anything that has the potential to help (not that either of those examples do in the long run...) can also harm. Both need to be acknowledged.'
'I have M.E and I need to move forward with treatments that work and not to be offered physical treatments that do harm.'
'People, especially women, have suffered enough from punitive treatments by doctors who dismiss, minimise or refuse to understand the severity of their symptoms and prescribe inappropriately. Treatment other than tablets needs equal scrutiny.'
'Complacency amongst decision-makers is causing significant distress to sufferers.
Please sit up & take notice of the harm being done.'
'Being 'prescribed' graded exercise therapy destroyed the little independence I had left. I now need a carer and cannot leave the bedroom with out help. At 35 my life stopped.
There is literally no where to go to complain about the 'treatment'. We need a yellow card system for holistic therapies.'
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