Shake It Up: Email to Steve Barclay MP – Secretary of State for Health and Social Care

As I have said a few times on social media this week, the article in The Times and Action for M.E reinforced what I have been saying for 18 months with my Shake It UP campaign. I have had too many conversations with M.E patients and their carers in which I have been told that ‘increased activity’ and CBT as ‘treatments’ is no longer an issue due to the NICE guideline. I have pushed back and stated that minimal has changed, in terms of patient experience, due to non-implementation.

This reporting system is still necessary.

This morning, I sent Steve Barclay MP an email –
Dear Secretary of State, 
I am writing to you again regarding my campaign for a reporting system to report harms from non-pharmaceutical ‘treatments’. I have previously been told by your Department multiple times that the need for this system no longer exists due to the NICE guideline.
However, I have myself provided proof that recommendations to ‘increase activity’ and participate in CBT are continuing post-guideline publication.
To reinforce what I have been telling your department for the past 18 months, last week The Times wrote this article the sub-heading of which states ‘National treatment guidelines published two years ago are still not widely implemented, says charity’. The charity in question was Action for M.E who have just published this research.
As you can see, non-adherence to the NICE guideline is rife.
This matters because ‘increased activity’ and CBT as ‘treatments’ harms ME/CFS patients. COVID19 has triggered 100s of 1000s of new cases of ME/CFS. I estimate there to be around 1 million cases of ME/CFS in the UK now (half of Long COVID meet ME/CFS diagnostic criteria). When these treatments remain the ‘go to’ treatments for the NHS, that is a lot of people who will be deteriorating as a direct result of non-pharmaceutical ‘treatments’. These are the people you want to get back to work, not becoming permanently disabled due to non-adherence to the NICE guideline.
I recently attended a UK third sector meeting, in which a representative of NHS England stated that it would be ‘impossible to implement NICE guidelines due to the pushback’ (from RCGP etc) – for a range of diseases including ME/CFS. If this is the case, we need a system to report harms if the Government has no intention of implementing the guideline.
I look forward to hearing from you.

I suggested the the NHS England representative that if there was no intention to implement the NICE guideline then they could, as alternatives, push forward with education or tackle the stigma that is rampant within the NHS about our disease. I could see nodding heads in this online meeting, ours is not the only community facing this problem.

My thoughts on the subject –

Please engage with Shake It Up if you haven’t done so already, there is an international petition and wider campaign for UK residents.

Check it out here! 

Take care of yourselves M.Eeps.
Love Sally
and Foggy (OBVIOUSLY)