The Shake It UP next step is here! I ‘went live’ on YouTube earlier. You can watch the recording below (don’t forget to subscribe too so you don’t miss future content!).

As I explained during the ‘live’, my own M.E. is currently causing me to not be able to function as well as I usually do. With that in mind, because the 11th April deadline is looming, I am simply going to provide the basic info you need to be able to participate in this campaign ‘push’.

This is the text from the document I read through in the video. It contains info and suggestions that you might find useful.

Social Media Campaign

Here’s a social media campaign plan to pressure the UK Government to create a reporting system for harms from non-pharmaceutical “treatments,” with a focus on the 11th April deadline:

Campaign Goal:

• To generate significant public awareness and pressure on the UK Government to establish a formal reporting system for adverse effects from non-pharmaceutical ‘treatments’.
• To ensure the government addresses this issue before the 11th April deadline.

Campaign Elements:

• Hashtag: Please make sure you use these #s on related social media posts with #ShakeItUp
  • #ReportNonPharmaHarms
  • #PatientSafetyUK
• Key Messages: Feel free to copy and paste these sentences into your posts
  • People experiencing harm from non-pharmaceutical ‘treatments’ need a way to report it
  • Lack of reporting means a lack of data, and that puts people at risk.
  • The UK government must act now to create a reporting system from non pharmaceutical harms
  • We need transparency and accountability in all forms of healthcare.
  • 11th April deadline: the UK government must respond!

• Visuals: A few suggestions – Unfortunately, this time I don’t have the energy required to make these for the community to use. You can also download the Shake It UP image and use it on your posts if necessary (at the bottom of this blog).
  • Create shareable images with key statistics or impactful quotes.
  • Post photographs of yourself/loved one (consent needed) and explain how you/they have been harmed.
  • A countdown graphic showing the time remaining until the 11th of April.
  • A graphic that shows a broken medical symbol, or a question mark inside of a medical symbol, to visually represent the issue.
• Social Media Platforms:
  • X (formerly Twitter): For quick updates, engaging with politicians (Wes Streeting MP and possibly your own MP too)
  • Facebook: For sharing in-depth stories, creating community groups, and reaching a wider audience. You can tag politicians on FB too.
  • Instagram: For visual content, sharing personal stories, and utilizing relevant hashtags. Tag, tag, tag!
• Campaign Actions: A few suggestions of how you can help to reach a wider audience
  • Share personal stories: Encourage individuals who have experienced harm to share their stories (anonymously if preferred).
  • Tag relevant government accounts: Consistently tag the Department of Health and Social Care and relevant ministers.
  • Organize virtual events: Host online discussions with experts and individuals affected by harm.
  • Media outreach: Send press releases to national and local media outlets.
  • Countdown posts: Daily posts counting down to the 11th April deadline, emphasising the urgency.
• Timeline:
  • Immediate launch: Begin the campaign immediately to maximise impact.
  • Daily activity: Consistent posting across all platforms.
  • Final push: Intensify activity in the days leading up to the 11th April deadline.

Important Considerations:

• Accuracy: Ensure all information shared is accurate and evidence-based.
• Sensitivity: Handle personal stories with sensitivity and respect.
• Inclusivity: Ensure the campaign is inclusive and represents the diverse range of people affected.

By implementing these strategies, the campaign can effectively raise awareness and put pressure on the UK Government to take action.

Let’s do this!

You can download this image:

The post Shake It UP, Next Steps and How To Get Involved: Social Media Campaign first appeared on ME Foggy Dog.

As many of you already know, M.E. Foggy Dog had been campaigning since November 2021 with Shake It UP demanding the creation of a reporting system to report adverse events from non-pharmaceutical ‘treatments. The associated petition, which had 9011 signatures and was accompanied by many hundreds of personal anecdotes of harm, was closed in September 2024 due to us having reached a dead end. I stated at the time that I would be pursuing a ‘Plan B’ as and when an opportunity arose.

Yesterday, it was announced that Amanda Pritchard has resigned from her position as CEO of NHS England.

I believe the change in NHS senior management and the rumoured change of direction now being sought by Secretary of State for Health and Social Care, Wes Streeting MP, could be the ‘opportunity’ we’ve been waiting for.

You can see the work that has already been done on this campaign via this link.

The next phase has now started.

The following was sent in the post yesterday 25th February 2025 –

Formal Complaint: Negligence in Patient Safety Regarding Non-Pharmaceutical Treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Dear Secretary of State,

This constitutes a formal complaint regarding the ongoing failure to implement a robust reporting system for adverse events related to non-pharmaceutical treatments (NPTs) offered to patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) within the National Health Service (NHS). This lack of a reporting mechanism represents a serious and unacceptable negligence in patient safety.

For over three years, we have been campaigning for the establishment of such a system. Our efforts, including a petition signed by over 9,000 individuals, have been consistently disregarded. We believe this inaction demonstrates a deliberate attempt to avoid collecting data on potential harms arising from these treatments, thereby preventing proper scrutiny and accountability.

Specifically, we are deeply concerned about the lack of reporting mechanisms for adverse events associated with commonly prescribed NPTs for ME/CFS, such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT). The continued failure to establish a reporting mechanism is a violation of fundamental patient safety principles. The NHS has reporting systems for pharmaceutical interventions and medical procedures, yet no comparable system exists for therapies that have been widely documented as causing harm to ME/CFS patients. This discrepancy is unacceptable and discriminatory.

Furthermore, the 2021 NICE guideline update explicitly recommended against the use of GET due to evidence of harm. However, despite this, many NHS services continue to offer GET (in many forms) and CBT in ways that contradict the updated guidance. Without a formal reporting structure, patients are left without recourse when they suffer worsening health due to inappropriate treatment recommendations.

The absence of a reporting system contravenes fundamental principles of patient safety and clinical governance. It prevents healthcare professionals from learning from adverse events, impedes research into the long-term effects of these treatments, and denies patients the right to informed consent based on a comprehensive understanding of potential risks. Furthermore, it undermines the ability of patients and clinicians to make shared decisions about care based on the best available evidence.

We believe this failure to act is a clear breach of the NHS’s duty of care to patients with ME/CFS. We request an immediate and thorough investigation into this matter, including:

• The reasons for the continued failure to implement a reporting system for adverse events related to NPTs for ME/CFS.
• The number of patients who have potentially experienced harm from these treatments.
• The steps that will be taken to establish a robust and independent reporting system without further delay.
• How accountability will be ensured for those responsible for this negligence.

We expect a formal response to this complaint within 6 weeks outlining the actions that will be taken to address our concerns. We are prepared to escalate this matter to the Parliamentary and Health Service Ombudsman and other relevant authorities if a satisfactory response is not received.

We urge you to treat this matter with the seriousness it deserves and take immediate action to protect the safety of patients with ME/CFS.

Sincerely,

Sally Callow, Manager –  ME Foggy Dog

Week ending 11th April 2025

As you have just read, the Department for Health and Social Care/West Streeting MP/Ashley Dalton MP have been given 6 weeks to respond/take action. This means they have until Friday 11th April 2025. Then we go to the next step, as detailed in the letter.

In the coming days, I will be creating a wider campaign for the community to get involved in to apply pressure over the next 6 weeks.

Stay tuned!

ps. I could do with a hand with creating content and admin for this campaign so please let me know if you are able to give me an hour or two of your energy per week. Get in touch! 

The post Shake It UP – Formal Complaint re Negligence in Patient Safety first appeared on ME Foggy Dog.

This blog is a follow on from everything I said in this video 3 weeks ago.

National Reporting and Learning System

I contacted NICE to make sure that I wasn’t going to be pursuing this issue like a dog with a bone unnecessarily. I wanted to know –

• Do they consider NRLS data within guideline reviews?
• Is it the ‘right sort’ of data
• Would submissions by the public on this type of system hold any weight within a guideline review?

This is what I emailed to NICE on 31st October 2023 –

I am writing to you now regarding the National Learning and Reporting System (NRLS) in relation to reporting harms from non-pharmaceutical treatments.

As you know, I’ve been campaigning for a reporting system for non-pharmaceutical treatments since November 2021 due to NICE saying there were no records of harms being reported relating to CBT/GET for M.E/C.F.S. I’d been an advocate for 7 years at this point and knew that hundreds, if not thousands, of people had reported harms to their NHS Trust, CCG, Healthwatch, PALS etc.

I did not know until 2 weeks ago that the NRLS existed, neither do the thousands of M.E/C.F.S patients who follow me on social media. Is data from the NRLS included in the work/remit of a NICE guideline review?

I have taken a look at the NRLS and it is exactly the type of system I have been campaigning for and I do not understand why harms from CBT/GET have not been logged onto this system by healthcare staff and patients (other than patients not knowing it exists) and why data was not available to you in 2021 as this system has been active since 2003, if not before.

Would NICE support this system being used to report harms from non-pharmaceutical treatments? Given the NRLS is currently being ‘updated’, I can see no reason why its scope cannot be widened (if it is exclusive of non-pharmaceutical treatments currently).

I’d be grateful to know your thoughts.

Best wishes,

Their reply, received 9th November 2023 – (bold text applied by me)

Dear Sally,

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NG206).

I have spoken to colleagues within the guideline development team, and they have confirmed that the NRLS wasn’t used in the development of the guideline. The data wasn’t highlighted when we undertook the call for evidence as part of the guideline development and we cannot confirm whether this data would be used in the future.

As part of our 5-year strategy we are currently developing our approach to updating our recommendations. To ensure that our guidelines stay up to date and reflect significant shifts in the evidence base, we will develop a methodology that is quicker and more flexible. Moving away from producing full guidelines to a more modular, living approach, our recommendations will incorporate the latest evidence and newly-recommended technologies to maximise uptake and access for patients. The process for how this will work is evolving. We are moving towards a more flexible and reactive process, which means that we are no longer following a fixed schedule for reviews. Currently there no plans to update the guideline.

I hope this information is useful for you.

Kind regards

Thoughts

Whilst the reply didn’t fully answer my questions, it has shed light on a few things.

‘Confirmed that the NRLS wasn’t used in the development of the guideline’ – OK, but why not? I’ll contact the NRLS team and ask them again whether harms from non-pharmaceutical treatments can be logged by healthcare staff and patients in the absence of another appropriate system and/or if a specific non-pharmaceutical harms question could be added to their template.

‘We cannot confirm whether this data would be used in future’ – Future NICE guidelines are not the only reason we need this reporting system. Data will also help to inform future policy and fill a knowledge gap once and for all.

‘The process for how this will work is evolving’ – I believe this makes the need for this data greater than before as we do not know what data will be essential the next time NICE updates their guideline. We should be prepared. Surely the quickest way to see if a ‘treatment’ is harmful is to look at a database where harms from that ‘treatment’ have been logged?

From Warm and Fuzzy Prevention of Harms to Data, Data, Data

I campaign from the patient perspective (because I am one!) and always centre the patient experience in my work. However, politicians and the NHS are not as warm and fuzzy as me. They don’t want the equivalent of Miss World’s ‘world peace’ for people living with M.E. After 2 years of campaigning with Shake It UP, I am changing tack. I am now going to be leading with ‘data, data, data’ and what data SHOULD be collected by organisations responsible for patient safety.

I will be emailing a range of organisations asking if current data collection is legal and up to the required standard.

Wish me luck!

Love Sally

and Foggy OBVIOUSLY!!

ps. Foggy is now in Kent and will be off on a Caribbean cruise with Ryn and John at the end of the week!

Please don’t forget to donate  – donate here

Foggy’s total currently stands at £284.

The post Shake It UP, NICE and the National Reporting and Learning System (NRLS) first appeared on ME Foggy Dog.

This reporting system is still necessary.

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! 

The post Shake It Up: Email to Steve Barclay MP – Secretary of State for Health and Social Care first appeared on ME Foggy Dog.