We need to shake up the status quo to create positive change
We need a new system to report harms from non-pharmaceutical ‘treatments’
Since August 2021, ME Foggy Dog has been working to bring about change for M.E. patients in the UK, this change will also benefit other patient groups including Long Covid. See what has been done so far and why this campaign is important!
This is a MASSIVE undertaking as for this campaign to be successful we have to tackle the widespread false belief that non-pharmaceutical ‘treatments’ cannot harm patients. We know this simply is not true.
Non-pharmaceutical ‘treatments’ are not regulated.
M.E. patients know that medical professionals and ‘CFS clinics’ are continuing to recommend Graded Exercise Therapy (rebranded) and Cognitive Behavioural Therapy to patients despite NICE advising that they should no longer be recommended as ‘treatments’ for M.E. NICE have said that clinicians can use their clinical judgement and only use their guideline for guidance but have to be prepared to justify their clinical decision to the General Medical Council (GMC).
By the time cases reach the GMC harm has already been done – it is too late.
How can patient groups prove that non-pharmaceutical ‘treatments’ harm us if we have nowhere to report harms to?
If successful, this campaign will lead to an official centralised reporting system. This reporting system will be the first step towards stopping harm from non-pharmaceutical ‘treatments’.
PATIENT POWER – SHAKE IT UP
We launched our petition on 2nd November 2021, we are petitioning the Secretary of State for Health and Social Care and the CEO of NHS England.
Anyone, anywhere, around the world can sign – please help UK M.E. patients, and other patient groups, by signing the petition today!
Please add your comments to the petition when you sign, we intend to send all comments to the Secretary of State for Health and Social Care and the CEO of NHS England separately.
SHARE SHARE SHARE – PLEASE HELP US TO REACH AS MANY PEOPLE AS POSSIBLE WITH THIS CAMPAIGN.
UK RESIDENTS – SHAKE IT UP A BIT MORE
If you live in the UK, you can email your MP to tell them that you support the creation of this new system.
If you live in Scotland, Wales or Northern Ireland, please also contact your MSP, MS or MLA to bring it to the attention of your local legislature. These contact details will appear on the same page as the contact details of your MP.
See our suggestions about what to write below.
TIPS AND SUGGESTIONS
What should you write in your email?
- Tell them that you support the creation of this new system to report harms and why.
- Tell them how non-pharmaceutical ‘treatments’ have harmed you or your family.
SHAKE IT UP ON SOCIAL MEDIA!
Help this campaign to build momentum by talking about it on social media. Please use the hashtags:
#BePartOfChange and #ShakeItUp
If you have M.E., Long Covid or any other energy-impaired illness, here are some snippets of text for you to copy and paste if necessary.
I support social enterprise ME Foggy Dog’s Shake It Up campaign for a reporting system for non-pharmaceutical harms because:
Non-pharmaceutical ‘treatments’ are prescribed for many diseases by the NHS. However, patients do not have anywhere to report harms to. There is a widespread false assumption that non-pharmaceutical ‘treatments’ cannot harm patients.
Patients have been harmed by non-pharmaceutical ‘treatments’ for decades, these patients have often complained to their NHS clinic, GP surgery, CCG, or PALS but the problem has not been resolved. The next patient through the door receives the exact same ‘treatment’. There is no nationwide joined-up thinking, that is why I support the creation of a central reporting system.
A central reporting system is needed NOW, these harms need to reported and collated officially.
EXAMPLE – During the NICE review of the M.E./C.F.S. guideline, it was claimed that there were no harms from Graded Exercise Therapy or Cognitive Behavioural Therapy as none had been reported. TRUE. This is because patients have nowhere central to report harms to. Anecdotal ‘evidence’ of harm sent to charities is not enough.
The harm to M.E. patients is not stopping. Many in the medical profession are stating publicly that the NICE guideline is ‘only for guidance’ and they will continue to recommend increased activity/exercise and CBT to M.E. patients as ‘treatments’. If the harm will not stop, a system to report harms from these ‘treatments’ is desperately needed.
Thank you for your support.