The post Back to Basics: 2026 is the Year of Focus For M.E. Foggy Dog first appeared on ME Foggy Dog.

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.

The latest part of this campaign has been to see if our reports of harm could be logged as ‘Patient Safety Incidents’ because there is a place to report those and generate data. I advised pwME who have been harmed by GET or CBT recently to log these harms here. When I made the suggestion it was with my troublemaker head on and I figured, if nothing else, the change in data logged would spark someone’s interest at the other end of the reporting system! I had zero idea if any reports made here would be taken seriously or just deleted. This remains a work in progress and I am waiting for email responses from various relevant agencies.  Here are two videos I have recorded on this subject :

‘National Reporting and Learning System (NRLS)( October 2023)

The LFPSE is the new NRLS!! (Too many letters!!) (Sept 2024)

At the exact same time that I am raising this issue, I am also a member of my local hospital’s patient, carer and family group and attend meetings virtually. I am grateful that inclusion in this group has lead to participation in a number of Hampshire-based initiatives. I used this membership as an opportunity to ask a question of the person who deals with ‘Patient Safety Incidents’ in this hospital via the lead of the group.

I asked –

‘I’ve looked through the XXX with interest as it may link up with work I have been doing on a national scale since November 2021. Would ‘patient safety incidents’ include patients with energy impaired illnesses (such as M.E/C.F.S and Long COVID) being told to increase their activity levels by staff/hospital literature. NICE states not to recommend increased activity/exercise as a ‘treatment’ as it is potentially harmful for people living with M.E./C.F.S and it is known, scientifically, that half of Long COVID cases meet the diagnostic criteria for M.E/C.F.S. Yet patients around the UK are being told to increase their activity levels by NHS hospital staff. When they are harmed (symptoms deteriorate for a long period of time – months, years) they complain to the NHS trust but the complaint goes nowhere and isn’t collated centrally. This happened to me personally 3 years ago.

Would participating in increased activity under the instruction of hospital staff or literature/website content be classed as an ‘incident’? I would argue that it puts patient safety at risk’

I received a response this week –

‘As far as any physical activity advice for patients with ME/CFS the expectation would be that the clinical team would provide advice and guidance and would take an individualised approach for patients who choose to undertake physical activity or an exercise programme. This would be for patients who would like to  try and increase their physical activity as they are finding this very limiting It is recommended that physios who have specialist training in this area are available.

I understand that in order to do any graded exercise therapy ,establishing an individuals baseline of achievable exercise or physical activity is key. To do this there will be a degree of trial and error guided by the patient feedback on their fatigue levels so that changes can be made. This would not count as a patient safety incident, much the same as titrating medication doses to get the desired symptom control. If there are concerns regarding the therapy received or advice and guidance received then the correct route is via PALS/Complaints

I am very sorry about your experience when you complained as  there should be a formal review process with the clinical team involved to provide you with answers. (I replied and said I had gone down this route and it was resolved)

This is my key takeaway –

‘This would not count as a patient safety incident, much the same as titrating medication doses to get the desired symptom control.’

The more I work on the issue of the lack of a system to report harms from non-pharmaceutical incidents the more I seem to go down a rabbit hole. Every department seems to have a completely unique response!

I’m still persevering with this because pwME are STILL being told to increase exertion as a ‘treatment’ by some in healthcare.  The need is still alive and kicking.

Love

Sally

and Foggy (OBVIOUSLY) xx

Reminder – I closed the Shake It UP petition a few weeks ago and am now concentrating efforts on ‘behind the scenes’ work with this campaign. Thank you to all who signed, commented and shared the petition since November 2021.

The post Shake It Up : ‘Patient Safety Incidents’? 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.

Sorry I haven’t posted an update for a while but other than emailing Steve Barclay MP, Secretary of State for Health and Social Care, and sharing information about the petition left, right, and centre, I haven’t had anything to report.

Until now.

I wrote to the Care Quality Commission (ENGLAND) on the 15th November 2021 about ME Foggy Dog’s Shake It UP campaign and received a generic ‘we’ll get back in touch with you’ email a month later. I realised I hadn’t received a further reply in September this year (brain fog = I forgot!) and so chased them up.

This is their response (received 22nd November 2022)

Dear Ms Callow,

Firstly, please accept my sincere apologies for the long delay in responding to your query. I understand from initial enquiries that this was due to an administrative error, but please rest assured that we are continuing to try to understand how this happened in order to prevent it from reoccurring in future.

As the independent regulator for health and social care, CQC’s purpose is to make sure health and social care services provide people with safe, effective, compassionate, high-quality care and we encourage these services to improve. We do this by fulfilling our role to register, monitor, inspect and rate providers delivering one or more of the regulated activities as set out in the Health and Social Care Act 2008.

In regulating providers delivering services for people with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and/or Long Covid, CQC would seek assurance that the service is following all relevant guidelines. Whilst we do not set standards or publish guidance ourselves, we do check that providers are meeting required standards and guidance. This includes NICE guidelines.

Where guidelines are not being adhered to, providers would be required to clearly explain the reasoning behind this and demonstrate that this decision does not affect the safety of the service. Where providers are not able to assure us that a service is safe and/or the risk of harm has been minimised, we may seek to take enforcement action against them.

Unfortunately, it is not within CQC’s remit to monitor specific treatments. However, we would encourage everyone who wants to share their experiences of health or social care in England with us to do so via our Give Feedback on Care mechanism.

With best wishes,

CQC Enquiries Team

RALLYING CRY

I know this is an extra thing for people living with M.E to think about but it is important.

If YOU, or someone you know, have been recommended ‘increasing exertion/activity’ under any name (Graded Exercise Therapy or other) or been told to take part in Cognitive Behavioural Therapy as a ‘treatment’ – please contact the CQC via the link in their email above. The CQC need to know that clinics and healthcare professionals are not adhering to the NICE guideline, as you read for yourself, the CQC can take action.

This is in addition to emailing me (Sally via mefoggydog@gmail.com) with details of who has recommended this to you so I can include it in my correspondence with Steve Barclay MP and Amanda Pritchard to PROVE that NICE guidelines are not being adhered to and patients are still being harmed.

I know this latest development doesn’t get us any closer to having a reporting system for non pharmaceutical ‘treatments’ but it is one more place to complain and subsequently create data.

I’m having to tackle this issue in multiple ways as I keep hitting brick walls.

But – SHAKE IT UP continues!

Love Sally

and Foggy (Obviously)

xx

ps. Please sign the international Shake It Up petition (8697 signatures so far) and take part in the wider campaign if you have not done so already. Thank you.

The post Shake It Up Latest – Care Quality Commission first appeared on ME Foggy Dog.

I don’t know about you but, for me, 2021 flew by!

I’ve not kept track of what month we are in throughout the entire year! It’s all been very same-y and seasons have all blended from one to the other. I haven’t had the usual Foggy ‘milestones’ to judge where I’m at. This is mostly due to shielding 98% of the time, my life has been devoid of social cues – other than those seen on social media or in private Whatsapp messages.

2021 has been a pretty rubbish year all-round but I’m going to squeeze my memory bank to come up with some positives.

My first post of 2021 (1st January 2021 at 08.15)

Did our dreams come true?

Here are the highlights of 2021 for Team Foggy.

Awareness

‘What is M.E? (January 2021)

Watch   What is M.E?

Video recorded during lockdown, completely a DIY effort and from a very dodgy camera angle but….with the help of a ‘video-editor’ this video was produced. A combination of worsening illness and software no longer being available = my brain can’t cope with complicated video editing like it used to in 2014-2018! Long term Foggy Followers will know that my content has changed over recent years….in fact, since my Windows 7 died. RIP. You are missed!

Press Nonsense

There has been a LOT of reactive negative, but necessary, stuff that has had to be addressed over the past year. PG being on BBC Breakfast and being unchallenged after erroneous claims were made, inaccurate and downright offensive rubbish has been printed in the UK press ALL YEAR. My advocacy has reflected that. I started an ‘Online Journalist Resource’ but stopped my efforts when it became clear that other orgs were doing the same. As with all people with M.E, I have such limited energy, I don’t waste it on duplication. It’s wasted effort and energy.

Legal Fund

Then came the ‘Legal Fund’.

Blog post – M.E/C.F.S Patients’ Legal Fund. (Explainer video) I thought this was such a good idea but I found many M.E patients couldn’t understand what the money would be used for. I did as much as I could to increase understanding but this was another idea, start of a campaign, that came to nothing. Thank you to the MANY advocates and pwME that privately messaged me with support during these stressful weeks. There have been a few instances since where this legal fund would have been a great asset for our community to have but, that idea has now been and gone.

Fundraising

Watch this – How we fundraise  THIS is the case whether Team Foggy are actively campaigning or not. You can donate all-year round via Paypal – link/button is on our home page –  mefoggydog.org .  Cure ME are currently requesting donations, they need funding. If you donate via Paypal through ME Foggy Dog please make it clear it is for Cure ME and we will allocate accordingly.

Team Foggy’s AWESOME friend Ryn and her husband John displayed fantastic entrepreneurial spirit during the summer and raised £488 to be split 50/50 between   Cure ME and ME Foggy Dog. They had a flower stall outside their home for months and neighbours, family, and friends donated plants, pots, and other items to sell. Fantastic community spirit!! Ryn is already planning on repeating this mini-enterprise next year. All money raised for ME Foggy Dog will be put towards our future fundraising events for Cure ME.  Ryn and John’s ‘flower stall’ fundraising featured in a LSHTM blog post! ME Fundraiser  – Ryn Stevens.

Long Covid and M.E/C.F.S overlap

This is something that has been making my head hurt for over 18 months.  Watch – My recommendations for managing Long Covid. It’s been tough, HARD work trying to get local/central Government to listen. They are all stuck on the ‘it’s a completely new phenomenon’. Uh….nope. Extra frustrating given that we KNOW that many Long Covid cases are being diagnosed as M.E/C.F.S.

M.E Awareness Week 2021

Ha! The plan was to ‘cut back’ on my activities during our awareness week. I raise awareness all-year round so any increase wipes me out. I ended up doing more work than ever within a shorter period of time. As I said at the time, M.E patients were not my target audience (though I was grateful to all who tuned in) and so the length of the ‘talk’ was appropriate for ‘healthy’ people not M.E patients. As I’ve said a million times since 2014, we should always reach outside of our bubble with our awareness efforts. So, you can imagine how surprised I was to be criticised, by people within our community, for holding an awareness event that was 1 hr 15 minutes in length. Particularly given that most business webinars and online events I tune in to every week are the same length of time. It caused a significant crash but I was happy with the turnout and feedback from ‘healthies’.  Watch it here – in chunks if you have M.E! Read about how it went!

The NICE ‘Pause’

Blog  – This was written BEFORE the nonsense started. So, this blog is a positive highlight!

Team Foggy had T-shirts  and a strong opinion about the delay!

Read our article in Posability Magazine (Pgs 48-49)  ‘An Unprecedented Pause’

The NICE Publication!

29th October 2021, not as all-changing as we would have liked and it is increasingly clear that many medics/NHS/Department of Health and Social Care simply will not budge with their false beliefs re. exercise and CBT for M.E.

So…..

ME Foggy Dog launched a petition…..and then a wider campaign.

Shake It Up!

This has kept me busy and out of trouble for the past 4 months, the petition was launched on 2nd November and the wider campaign, with the help of Kat Gower, went ‘live’ on 25th November 2021. I’m in no doubt that this will be a hard slog and may well be ongoing over Summer 2022 and beyond. It will involve a complete 180 degree turn in mindset.

Podcast – ‘Shake It Up’! (available for 90 days) I was joined by Kat Gower, Linda Hending, and Steve Topple for a chat about the need for this new system. Also available in our Patreon channel podcast ‘archive’.

‘Transcript – FogPod ‘Shake It Up”

Please do sign the petition and take part in the ‘Shake It UP’ campaign. Every signature (anyone, anywhere, can sign) and/or email to your MP and Lord Kamall (UK residents only) counts and matter to me personally (Thank you).

Steve Topple (The Canary) wrote this article about the issue we are tackling with ‘Shake It Up’. Thanks again Steve.

There are more ‘phases’ of this campaign to come in 2022, please do keep your eyes peeled for the latest developments on whatever social media channel you use.

ME Foggy Dog has a presence online in a lot of different places!

Our website – mefoggydog.org

E-newsletter (sign up in  the footer of the website)

Twitter – @mefoggydog

Facebook – @FoggyDog

Instagram – @mefoggydog

Spotify

Buzzsprout

Google My Business – If you are a fan of Team Foggy, could you leave us a review? Let people know how awesome we are? Review us

We Are A Social Enterprise!

ME Foggy Dog has been a social enterprise since September 2018, it became one at the same time that I launched Stripy Lightbulb CIC. ME Foggy Dog has won awards as a social enterprise. But…..I forgot to become a member of Social Enterprise UK until this week. MY M.E brain thought that I did this years ago as I have participated in SEUK campaigns and won an ‘award’ from them…doh. So, Foggy now has a couple of shiny new badges on his website. Social Enterprise UK has been very supportive of all of my M.E work for a few years now…I can’t believe (I have M.E – it’s easy to believe!)  I forgot to join their membership.

Shiny new badges –

Anyone unsure of what a social enterprise is?

It’s a not-for-profit business that works for the benefit of a cause or community. There are different business models within the term ‘social enterprise’, ME Foggy Dog is a sole trader model.  I run it like a normal ‘sole trader’ business but 50% of our surplus (AKA profit), when we make some, will go to Cure ME for biomedical research. We are continuing with our fun fundraising campaigns too so from the outside it doesn’t look like we’ve changed much over the years but….we have! It doesn’t help that one year into becoming a business,  I had put ME Foggy Dog to one side while I concentrated on Stripy Lightbulb CIC for the first year, the pandemic hit and most of our revenue streams were not possible. That’s why we haven’t made a surplus (profit) YET. It’ll happen…..one day!

In our case, we work for the benefit of the M.E/C.F.S community.

Always have, always will.

2022….here we come!

We are reeeeeeeeally looking forward to injecting a bit of fun and globetrotting back into our lives. Hopefully, that will be possible in 2022. As I have said a number of times during the pandemic, our usual ‘World Tour’ activities are simply too risky given that ‘Foggy-sitting’ involves trips out and taking Foggy to the ‘Departure Lounge’ (Post Office). That’s simply not possible when so many countries are intermittently in lockdown and I wouldn’t ask an M.E patient or their family to put themselves at risk of catching COVID19 so Foggy can get home.

If you have any ideas re. fundraising during the pandemic please let me know!! It’s frustrating as in February 2020 I had MANY plans afoot in terms of face-to-face fundraising events. All scrapped/on hold.

That’s it.

That’s our 2021 wrapped up in blog form.

We hope you have enjoyed following us this year, it’s certainly been a rollercoaster!!

I’ll be stepping away from ME Foggy Dog between 21st December 2021 and 2nd January 2022. I need to recharge and reset ready to tackle whatever 2022 throws at us!

Wishing you all a Happy Christmas and, whatever you are able to manage, we hope that you are able to take some joy from the Christmas period. Please know that if you do find you are struggling in terms of your mental health there will be organisations available 24/7 to help and support you. You are not alone.

Ho ho ho!!

Love

Sally

and Foggy (OBVIOUSLY)

xxxxxxx

The post ME Foggy Dog’s Highlights of 2021 first appeared on ME Foggy Dog.

As I said in this video, the responses received from Lord Kamall and NHS CEO Amanda Pritchard have so far not addressed my concerns about the need for this new system to report harms from non-pharmaceutical ‘treatments’. I have not yet received a reply from Sajid Javid MP – Secretary of State for Health and Social Care.

Signatures Are Going Up! – Video update

Link to the ‘Shake It Up’ campaign page on mefoggydog.org – everything you need to know is in one place.

Journalist Steve Topple, included Lord Kamall’s response to my first email within his article ‘The government faces pressure over ‘harmful’ NHS treatments’  in The Canary, thank you Steve for your ongoing support.

Here is the response email I sent to Lord Kamall last night.

Dear Lord Kamall,

Thank you for your letter dated 23rd November 2021 that was forwarded to me by Penny Mordaunt MP’s office.

Can I please respectfully point out that you did not answer my question? I was asking about the possibility of the creation of a new system to report harms from non-pharmaceutical ‘treatments’.

Extract from the email sent to Penny Mordaunt MP on 18th August 2021 (then forwarded to Department of Health and Social Care/your Westminster office).

‘As the pause is indefinite, I feel the only course of action left for M.E/C.F.S patients is to lobby for a process to report harms as a result of this ‘treatment’. There are ‘no reported harms’ from Graded Exercise Therapy because there is no process available to patients to report harms from this specific ‘treatment’ as it is not a drug or device. 

However, Graded Exercise Therapy is being recommended as a ‘treatment’ and falsely hailed as ‘curative’ and so should be reportable if it causes a deterioration of symptoms in my opinion.

 Can I please ask for your support in asking the Department of Health and Social Care for a new process to be implemented thus giving patients the opportunity to report harms from this ‘treatment’?’

As we now know, the ME/CFS guideline was published on 29th October 2021 and GET and CBT are no longer to be recommended as ‘treatments’. However, in practice, today, this is still happening within GP surgeries and ‘CFS clinics’. In many cases, GET has simply been rebranded and uses different terminology. As you will be aware, a few Royal Colleges have publicly stated that they will not support the updated guideline.

A month ago, with my social enterprise ME Foggy Dog, I launched the ‘Shake It Up‘ campaign in which I am petitioning Savid Javid MP and NHS CEO Amanda Pritchard for the creation of a new mechanism to report harms from non-pharmaceutical ‘treatments’. I have also asked supporters to email their MP and you, yourself, in relation to this issue (following your response to Baroness Finlay of Llandaff in the House of Lords on the 12th October 2021 relating to this issue).

As you can see from the comments below from a few of those who have signed the petition, non-pharmaceutical ‘treatments’ have historically harmed patients in many different patient groups including M.E/C.F.S.

‘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.

‘A friend of mine suffers from deep-vein thrombosis, and fourteen years ago when the DVT was so severe that he could barely walk, his doctor kept urging him to exercise more. It was only when I accompanied him to an appointment that the doctor actually deigned to examine him – and, seeing his lumpy blocked veins for the first time, exclaimed in horror, ‘Good God, you don’t mean to tell me you WALKED here?’ It is terrifying how easily doctors will prescribe something that is usually helpful, like exercise, without taking into account the patient’s condition or even examining them.’

‘I’m signing this as GET set my pacing back several years’.

‘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.’

‘In support of the ME/CFS community whose members suffered harm from GET but were unable to report it officially.’

‘I’ve had ME for 48 years. Like others, I’ve been ridiculed, gaslighted, had my medical concerns brushed aside and generally been at the receiving end of medical abuse for all that time. Doctors have prescribed exercise, CBT, physio, weight loss. Just attending it all to prove them wrong was harmful.’

Given that one of the objections to the NICE scientific review by the Royal Colleges was their perceived lack of quantitative data, surely the creation of this new system would resolve that issue for future reviews, policy, and research? I’m particularly concerned for Long Covid patients who are also, in some areas of the UK, being asked to participate in GET and CBT despite 46% meeting the diagnostic criteria for M.E/C.F.S. I appreciate that the M.E/C.F.S guideline is not to be used for Long Covid however, tens of thousands of new M.E/C.F.S patients are caught up under the umbrella of Long Covid. These patients need somewhere central and official to report harms.

Are you aware that gym instructors are now becoming accredited to accept GP referrals to offer ‘exercise-based rehab’ to Long Covid patients? I contacted the company who is training and accrediting these gym instructors and asked if they were educating them about Post-Exertional Malaise and the answer was no. M.E/C.F.S patients, in some areas of the UK, are now also being sent to these gym instructors for ‘exercise-based rehab’ in direct opposition to what was recommended by NICE. These gym instructors could never be described as ‘M.E/C.F.S specialists’ and in these instances ‘exercise-based rehab’ is being recommended as a ‘treatment’.

For well over a decade, M.E/C.F.S patients have been complaining to their NHS trust, GP surgery, PALS, or ‘CFS clinic’ but these complaints are not logged or collated centrally and no positive action is taken. This needs to change.

In recent days, I have been very concerned to see that some Royal Colleges and NHS England tried to derail the NICE review process by text message ‘lobbying’. Please read – https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/  You wrote in your email of the importance of the NICE guideline review in terms of improving patient care, I found this ‘lobbying’ shocking given that NICE is supposed to be an independent body.

Finally, if GET and CBT do not harm, as Royal Colleges and NHS England keep insisting, why is there a reluctance to have somewhere central and official for patients to report harms? There are copious amounts of anecdotal evidence of harms that have been submitted to UK charities, as reviewed by NICE, we now need to quantify it.

I look forward to hearing from you.

Yours respectfully,

Sally Callow

Onwards and upwards

When I started this petition and ‘Shake It Up’ campaign, I was in no doubt that this would be a hard slog but one that I am very much ‘up for’. As I said in today’s video, we are fighting an ingrained, long standing FALSE belief that non-pharmaceutical ‘treatments’ cannot, and do not, harm patients. I have plans in place to keep building momentum and those plans extend into Spring/Summer 2022.

Thanks again for your support.

Love Sally (and Foggy OBVIOUSLY)

xx

The post ‘Shake It Up’ Campaign – Correspondence With Lord Kamall. first appeared on ME Foggy Dog.

I was joined by Kat Gower, Linda Hending, and Steve Topple to record a podcast about the need for a new reporting system to report harms from non-pharmaceutical ‘treatments’. In case you are unfamiliar with ME Foggy Dog’s campaign, you can read all information and find all relevant links here – Shake It Up

I’m well aware that many people are unable to listen to podcasts and so, because it is such an important issue, I have transcribed the podcast episode below (I usually don’t have the energy to transcribe podcasts but have made an exception – payback imminent!)

If you would like to listen to the podcast you can listen to it here –

Transcription

Sally 0:07
Welcome to Fog Pod. This episode is about the campaign I’m currently running called Shake It Up. The campaign is asking for a new reporting system to report harms from non pharmaceutical treatments. The campaign includes a petition.

Sally 0:26
We are asking Sajid Javid and Amanda Pritchard who is the CEO of the NHS, to implement a new reporting system. We’re also asking UK-based MECFS patients and other patient groups to contact their MP or equivalent, depending on where you are around the UK. Patient power, I believe will bring about this change. Because for too long, our complaints to the NHS CCGs and the PALS service have gone unheard. We need change. I recorded the conversation with a few people from the MECFS patient community earlier this week. Enjoy, you’ll hear that about the need for this reporting system through the lived experience of these people. Thank you for listening.

Sally 1:19
Okay, so I’m now joined by three members of the MECFS patient community in one form or another. I just want them to introduce themselves to you before we get on to the main topic of today.

Steve 1:31
Okay, hello, everyone. My name is Steve Topple. I’m a journalist and broadcaster. But my relationship with the M.E community began in 2018, when I started reading about the story of PACE trial, and then started writing about it. Ironically, my partner was then later diagnosed with M.E, and we’ve been trying to deal with the situation for really for nearly three years now. So I have both professional and personal interests in the subject. And, yeah, it’s, it’s been one of the most eye opening experiences, delving into the story behind M.E, and what’s gone on, but also living with someone who lives with it has been one of the most eye eye opening experiences of my life, I would have to say, so it’s, yeah, it’s a extremely personal and raw subject for me.

Kat 2:24
Hi, I’m Kat. I’ve had MECFS for seven years now. And over the seven years, the condition has fluctuated. Currently, I’m in a position where I can work part time, mainly from home. And I’ve recently had a reaction to the COVID vaccine. So I’m also going through that process as well, which has impacted my M.E somewhat.

Linda 2:49
Hi, I’m Linda Hending. I had first brush with post viral fatigue syndrome in 2001. And I recovered from that. But then with sepsis in 2013, it then made me relapse. And I’ve been an M.E patient since then. I do a lot of work with my local group and work on raising awareness on Twitter and social media.

Sally 3:24
Right. So today’s topic, for those who are unaware is the campaign that I’m running for the creation of a new system to report harms from non pharmaceutical treatments. It started out as a petition but has now broadened thanks to Kat’s help. And it’s now part of the Shake It Up campaign. It’s a combination of a petition and asking the MECFS long COVID and other patient communities to contact their MPs, or equivalent wherever they live around the UK, asking for support in their creation of this new system. Because having nowhere to report harms is a massive issue for our community. And when the only ‘treatments’ we’re offered, and I’m saying ‘treatments’ with bunny ears around it, the only ‘treatments’ we’re offered for MECFS, and at the moment long COVID, are non pharmaceutical. There seems to be this massive false belief that non pharmaceutical treatments cannot harm patients, which is simply untrue. You just have to look at the comments on the petition to see that there are other conditions outside of MECFS and long COVID that have experienced harms from non pharmaceutical treatments. So this is an issue that needs to be tackled. It’s something that came to the fore really from the nice guideline review. Because too often it was said that there are no reported harms from Graded Exercise Therapy or Cognitive Behavioural Therapy. The reason for that is patients, for more than a decade, have been complaining to the Patient Advice and Liaison Service (PALS), their complaint gets flagged to the medic concerned, they explain themselves and the complaint goes away. The fact that in 2020/2021, NICE saying that there were no reported harms, from Graded Exercise Therapy and Cognitive Behavioural Therapy shows that there is an issue with complaints to the Patient Advice and Liaison service, not being centralised. Complaints are not being collated or counted.

Sally 5:29
So that’s the starting point. And I would like these three lovely people to answer a couple of questions for me. The first one is have you ever had to report non pharmaceutical harms yourself? Where did you complain to and what were the outcomes?

Kat 5:44
I haven’t been officially offered anything. So I haven’t officially been told, you know, you need to go to this place to participate in GET or to have CBT. So whilst that isn’t right, you know, and there’s no pathway and I’m stuck in a position where there’s, there’s no how – I haven’t been prescribed, quote, unquote, any kind of damaging, non pharmaceutical treatments, I, there hasn’t been a need to complain.

Sally 6:15
Your GP has never said ‘you need to exercise’ or anything like that? Because mine has always been on an informal level. I’ve never had Graded Exercise Therapy recommended to me either. But I did have a M.E nerve issue. And the GP basically said, the talking therapies you’re having will help you with that pain, that kind of thing. But I knew that that was absolute claptrap. So I knew that that simply wasn’t the case. But if your GP had said ‘go and increase your activity levels’, would you have felt comfortable complaining about that or not?

Kat 6:51
Okay, so that’s interesting. So yes, I’ve had quite a few GPS that have said that go for more walks and eat a healthier diet and take extra vitamins has been said in the past, and a few other things, but I just turned around and said, I’m not doing that. And then the GPs gone ‘Okay, fine’.

Sally 7:10
If you think the exercise is bad, and you avoid, you can’t complain, because you haven’t done it. It hasn’t harmed you. But if you did it, many people that aren’t on social media and don’t know that it’s harmful, you’re screwed, because the messaging simply isn’t there. So this reporting system for non pharmaceutical harms, will help those people who are told to exercise by their GP, they will have a place to log that harm, which is what I’m hoping but unfortunately, it’s only people that take part in these treatments and get harmed that will be able to.

Kat 7:50
Yeah, and this is it. And I think because there’s been no kind of official… and nobody’s kind of really followed me up on that either. And when I said ‘no, I’m not doing that, because I know my my baseline and I know that this is going to do X y&z to me’ the GP or the medical professional at the time has never said anything or never kind of forced me into it. And never said ‘but this is what we’re telling you to do’. They’ve just kind of sat back and said ‘All right, well, I’ve recommended this to you if you’re not doing it that’s on your head’. So why I think that I’ve never felt that that’s a strong enough reason to, to report when maybe it should have been, I don’t know, maybe I’ve been just a bit too, kind of, I don’t know, uncomfortable and going ‘well actually, it’s just going to be too much of an effort to try and prove that that’s what they’ve said’ if that makes sense?

Sally 8:35
Yeah. Also, if you haven’t got a lot of energy, sort of having to advocate for other people because you know, well, I’m not doing that – it doesn’t affect me. You need amount of energy to advocate for other people. I think.

Kat 8:48
Yeah.

Steve 8:49
So, I I often speak on Nicola’s behalf amplifying her story. On this occasion though, the details are sketchy. It’s not something we’ve discussed at length. However, Nicola was prescribed Graded Exercise Therapy about a decade ago. I think however, it was in the context of Fibromyalgia, she didn’t have an M.E, or an Ehlers-Danlos Syndrome diagnosis at that time. So she was prescribed Graded Exercise Therapy for Fibromyalgia, which is I mean, that’s another whole podcast in itself. Sally, the way Graded Exercise Therapy has been utilised on chronic illnesses. But she was prescribed it and she knew, and has said ever since, that it made her worse. However, I’m not sure what, what she did about this, I’d have to reel through her medical records. But I think on that there’s a sort of very important point to be made that there was a study in 2011 which pulled all the research together on Graded Exercise Therapy, and it found that out of 4300-odd patients. 51% of them had reported harms. And at the time, in 2011, this paper said that hopefully this will bring about a new reporting mechanism for harms from non pharmaceutical treatments. And here we are 10 years later discussing this issue still, and nothing’s been moved forward. And I think you, you made a really important point, Sally, which was that it’s all very well, for those of us who either live with M.E or who care for someone with it, or who are advocates of it, to to have this knowledge, we are in the minority. Most people with an M.E diagnosis are not as engaged on social media as us lot. I mean, if you look at the size of some of the Facebook groups, I think the biggest one for M.E in the UK is around 14,000 people. We know, there’s, well if we believe official statistics, 250,000 people with M.E, which is of course a nonsense, therefore people won’t know. And, as you alluded to also, there’s this, there’s this conundrum, quite often, that people who are harmed by non pharmaceutical interventions, like Graded Exercise Therapy, won’t report it, because they just won’t go back to the practitioner. And so it’s it’s a myriad subject that we’re discussing here. But I think that, I think that there are several factors, which you picked up on very well, which need to be factored into this. But yeah, Nicola’s done it. It made her worse. And I don’t think she did, because as you say, there wasn’t a mechanism in place. And also, there’s an element of distrust for- certainly- people with the NHS and the systems as well. When you have been harmed by it, there’s the fear of the fact that if you do complain, then treatment is going to be withdrawn. There was a huge case, it was back in the late 90s, GPs were blacklisting patients who complained. And in the end, there’s, there’s so much to unpack with this with this issue. But um, yeah, I think it’s sorely needed.

Linda 12:10
In my own case, I didn’t realise that I had been harmed until a couple of years after the event. I had, what was in effect, I was offered, Graded Exercise Therapy, I didn’t do as I was told, because I’ve got too much common sense. I knew that going for a walk every day, and I kept trying to keep it at that pace of what I could manage. And then I did try to increase it. And sometimes it worked. But it wouldn’t necessarily be, I wouldn’t necessarily be able to do that for the next few days. So I’d go back to where I’d been originally. It wasn’t until a few years later that I realised that I had been going to a clinic for the treatments, at the same time as going through a 16 months worth of occupational health procedures, because obviously, I wasn’t working, that led to dismissal. And then I had a fight with the benefits to try and get contribution contribution based ESA. And that ended up going to tribunal. So I had about two years worth of increased pressure on myself at a time when I was very fragile. And it wasn’t until everything had finished and I wasn’t doing anything that I started to feel better, you know, sort of 6-12 months later, and I was thinking, you know, I was driving to clinic appointments. They were asking me to do things, but there was no accounting for real life, if you’ve got to make some dinner because there are children who need feeding, you know, that takes priority over some exercises that have been given. And there was also this thinking that every day is identical. Well, if you live in a busy family, then no, every day isn’t identical. And you have to do what you have to do not not what they’re prescribing.

Steve 14:27
So I’ll just jump in, sorry Sally, just think an important point to be made from this. The very fact that the three of us have no experience of complaining about harm from non pharmaceutical interventions really does sum up the problem.

Sally 14:43
Okay, so the campaign is petitioning Sajid Javid MP and Amanda Pritchard who, those of you who don’t know, is the CEO of the NHS, I’m doing both because the government has got a habit of ignoring petitions. So I thought if I do it two different places that will raise awareness for the CEO of the NHS of the issue, because she may not be aware. So they are the two people that we’re targeting with our petition and our campaign. Amanda Pritchard has responded to an email that I sent a couple of weeks ago now when I launched the campaign. One of the key things that ties into what we’ve just talked about is, I’ll read you a snippet of the email that she sent me. ‘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 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. That ties in to what Steve said two seconds ago. If a patient has been harmed by a non pharmaceutical treatment, there is no way on earth they are going to put themselves through it twice. So they can adjust the treatment, but it won’t benefit that particular patient. So the next patient won’t know that a complaint has just been made and they are offered exactly the same treatment in my mind anyway. So, with that in mind, why do you believe a new system is necessary when the NHS CEO seems to think the existing routes of complaint are sufficient?

Steve 16:45
Amanda Pritchard’s comments are mind blowing. I read it, because you, Sally, kindly forwarded me the email prior to recording this podcast, they’re absolutely mind blown. But they’re not actually surprising. For me, the main takeaway from what Amanda Pritchard said, was the comment where she said that ‘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.’ Unquote. That phrase is key. Because for me, it sums up everything and all the harm that has been done to M.E patients since, and before, PACE trial was published. Because essentially what Prichard is saying there is that, well, if it harms you, it’s kind of your own fault, or you’re the owner of that harm, because the therapy depends to a large degree on the individual’s own situation and tolerance. In other words, well, if it’s harms you, it’s kind of down to you really, it’s on your head. And this is this whole mantra and ethos and mindset, which has infected the NHS because of PACE trial and the psychologization of M.E and countless other conditions. Therefore, even with the updated NICE guidelines, which have explicitly removed Graded Exercise Therapy, this is from the CEO of the NHS, and that whole mindset, says that mindset still exists. And as I’ve repeatedly said about the NICE guidelines at the time, it changes very little, because you cannot get into these powerful people’s heads and tinker with the way they think. And so therefore, a reporting system, which isn’t just based around the patient, saying, ‘well, I feel like this and this has done this to me’, which can then be immediately batted back to the patient as ‘well really, it’s your fault for doing it wrong, or you or you did too much, or it’s your circumstances, etc, etc’. A reporting system that is robust and rigorous, like the current Yellow card system for pharmaceutical treatments, this reporting system is needed now, because it will play a part in changing that mindset which still pervades the NHS in the in the way it deals with M.E patients and other patient groups who are saying ‘we are not well and these things, these treatments, these interventions are making us worse.’

Sally 19:30
Yeah, just to drop this in another snippet from her email. She said ‘NHS England and Improvement supports the NHS to monitor patient outcomes locally to ensure high quality care is provided. The new NICE guidelines should help guide appropriate provision’ which is absolutely rubbish because since the 29th October, clinics are still offering Graded Exercise Therapy and Cognitive Behavioural Therapy, and now MECFS patients have been referred by GPs to independent gyms to do exercise-based rehab. How is that in accordance with the NICE guideline at all?

Steve 20:11
Exactly. And and as NICE admitted in the legal documentation from the person who was challenging, they’re delaying the guidelines with the judicial review, NICE explicitly stated that, and I’m paraphrasing here that ‘well, we do these guidelines, but medical professionals don’t have to follow them.’ So it there’s, it’s a nonsense from Pritchard to make make that kind of statement. And moreover, I mean, this is a separate issue, but it does intersect with this. If you look at the health care bill that’s currently going through Parliament, where the radical shake up of how the NHS is structured. The way the NHS organises itself is about to change anyway. CCGs are going and in their place are now the merging of health and social care. So the NHS is going, it’s coming down to a huge reorganisation anyway, how that’s going to affect what Pritchard is saying remains to be seen. But that that’s another factor in this entirely. There’s half a book on this, Sally, I think.

Sally 21:18
I know. I had hoped to keep it short, but I don’t think we can! Have you got any thoughts on this?

Kat 21:24
So I yeah, I think Steve’s kind of summed it up really well. I think like as an M.E patient, I think it’s really desperately needed to help empower the M.E community or any other community to actually start reporting harms in the first place. I think then, I think you’ll find that there’s a majority of us, like I said, earlier, I said that I never reported any non pharmaceutical harms when actually, I was probably in the right to. Because there was no, you know, I didn’t know what to do. I didn’t know where to go. I just kind of sat back and took it, it was almost like this gaslighting and ‘oh you know, M.E is, there’s nothing physiological with M.E, it’s all in your head’, but also now gaslighting with ‘you have to accept what I say because I’m a GP’ and if you don’t like it, you don’t do it. But at the same time, ‘you can’t say anything bad against me, because you’re refusing that treatment’ – if that makes sense. So I mean, like having some way, kind of an easy, simple way that people can actually report these harms will empower the community. So you know what, actually, that is not okay. The way you spoken to me is not okay. What you’re referring me to is not okay. And I will highlight that in a system because that shouldn’t be happening and that needs to stop.

Sally 22.34
I wonder, if they haven’t taken part in it, I wonder if it is reportable. That’s the only thing we’re going to come on to that. Linda, what are your thoughts?

Linda 22:49
I just wanted to bring out that the new NICE guidelines. On page one, it says your responsibility, all problems. Bracket adverse events, close bracket related to a medicine or medical device used for treatment or unapproved procedure should be reported to the Medicines and Healthcare Products Regulatory Agency using the yellow card scheme. Now, that is actually quoted on the first page of the new NICE guideline, despite the fact that obviously our treatments in inverted commas or previous treatments aren’t actually a medicine or medical device. But they’ve agreed that any problems or adverse events should be reported. Now that to me, says, well, that’s fine. Give us a yellow card scheme that we can actually report it to then please, it’s as you said before, it’s not just the M.E community, there are so many people with long COVID And with mental health issues, who have had various treatments in inverted commas, that have not been beneficial, and all these people need to have the opportunity to be able to, to report harms caused.

Sally 24:08
Yeah, you’ve just nicely moved over to long COVID. That’s what I was just about to mention. Also in Amanda Pritchard’s email, she said ‘the NICE MECFS guideline should not be used for long COVID. The guideline was created before COVID and most of it was created before COVID-19’ So it’s not to be used for long COVID. So in my email this morning, I said are you aware that 70% estimated 70% of long COVID now have post exertional malaise? Post Exertional Malaise is not included, as far as I know, in the long COVID NICE guideline. So that means when long COVID Patients are recommended exercise there is nothing written down to say that actually should be contraindicated and I know as a long COVID patient, that they are recommending exercise because, my very first referral, so I got COVID on the 23rd of March, my first referral anywhere was November. And that was to respiratory. When she checked that my lungs weren’t knackered. She said, ‘Oh, it’s deconditioning, you need to exercise 30 minutes, five times a week’. Now, if I hadn’t had M.E, if I wasn’t an M.E advocate, if I didn’t own an MECFS online training company, I would have done that exercise. God knows what I would be like now, if I’ve done it. I did complain about that to the respiratory consultant and she said ‘Well, obviously with M.E, you would use your own common sense and only increase your activity as appropriate. But you can’t assume that M.E patients know about Post Exertional Malaise. She didn’t know about it either. It was only after I sent her the Workwell Foundation, bits and bobs and all the other resources I could lay my hands on. But the fact that she’s now said, the NICE guideline should not be used for long COVID, when 70% have the key characteristic of M.E, whether they’ve got M.E or not, they’ve got the key characteristic. So surely she can see the recommending exercise to long COVID patients is not good. And that’s why the campaign is for MECFS, long COVID and many other patient groups, because I’m not an expert on every single patient group there is and I’ve learned about conditions that react badly to non pharmaceutical treatments. Across the board, if you’ve had a non pharmaceutical treatment recommended to you and you’ve deteriorated as a result, report it here, whatever illness you got. So, that leads me nicely onto the last bit, what do you think the new system should look like? So, in my mind is a very simple, easy to fill in database with dates, times, names, addresses, and outcomes that are relatively easy to fill in for patients. They aren’t overly technical, you don’t have to put too much information in and you put contact information for it to be followed up. That’s what it looks like in my mind. Steve, what would you want a new reporting system to look like?

Steve 27:12
Exactly that, I would say. Well, what I would also add is that, and obviously you’ve thought of that, but I think it just needs to be explicitly said that this information needs to be pooled centrally, by the relevant authorities. So we can start having a proper database on exactly the real number of people who are being harmed by non pharmaceutical interventions. Because while the 2011 study was all well and good, and it was very eye opening, it was just based on other research papers, that’s not the real world, we need real world data on how people are being harmed by non pharmaceutical interventions. Therefore, it will directly lead to us being able to start to break down the narratives and the mantra that still exists within the health service about that somehow, if people are harmed by these interventions, it’s their fault, which as I said earlier, maintains the notion that a lot of chronic illnesses are somehow partly or fully psychosomatic. So we’re everything you said, Sally, but with the caveat that this information has to be pooled, and there has to be someone has to step up and take responsibility and accountability for this somewhere within the divisions of the Department of Health and Social Care.

Sally 28:33
Yeah, I don’t care who runs it. I’ve contacted the Department of Health and Social Care, NHS, CQC Care Quality Commission, and other people. Loads of charities that aren’t M.E, just broader national charities that deal with health and policy, have said ‘Oh, we’ll create a database patients can can complain to us, and it’s like, no, we’ve got that already. We’ve got anecdotal, I guess, folders in an office somewhere with lots of stories in it. But we need somewhere central official attached to government and or healthcare.

Steve 29:10
You just made a very important point there. We have anecdotal evidence, which is the qualitative evidence. And this was something that NICE picked up on and as I wrote at the time, the draft version of the NICE guidelines from November 2020, very much focused on the qualitative evidence, the anecdotal evidence – it’s finalised guidelines changed and it explicitly stated about the quantitative, these researched and evidence and measurable facts and figures, on the harm that Graded Exercise Therapy caused. What this caused was a complete meltdown of the proponents of Exercise Therapy and the psychologization of illnesses, and I think that’s in part what provoked such a backlash from the Royal Colleges. Therefore, my point is that is extremely important that you highlighted the fact that we have qualitative evidence, we don’t need that. We need quantitative fact based pooling of data from patients which is, which is specific and measurable, which again, can be used to rebuke the narratives that are coming out from certain quarters in the medical establishment.

Sally 30:23
Now, I wonder what that could be? Is it things like heart rate?

Sally 30:26
Yeah, exactly. heart rate, blood pressure,

Steve 30:29
Glucose tolerance testing would be another important one, especially within M.E, it could be stuff like SPO2 and tidal co2, there’s so much that can be done. And a lot of this can be done at home by patients, if necessary. You can monitor your SPO2, you could monitor your own tidal co2, blood pressure, heart rate, all these things can be self monitoring. So there, you have, you only need to look at the research surrounding cardiopulmonary exercise testing and M.E to realise what you can actually show quantitatively about harm from Graded Exercise Therapy, all the information is there, as all three, or our four of us are aware. So it can be done, but whether people have the volition to do it within the Department of Health and Social Care in its independent agencies remains to be seen,

Linda 31:22
I had a fitness tracker for my birthday this year, I couldn’t understand why I’d had new symptoms. And within a couple of months of wearing the fitness tracker, I could see that my heart rate goes wild and whether that’s getting up to make a cup of tea, or particularly bad if I’m in the shower or climbing the stairs. So that’s really identified a lot of things for me. So, you know, I can use a stool in the bath to have a shower. You know, you can spot things and identify, oh, you know, I’ve been standing up for too long or I sit down to chop some vegetables. So, exactly what Steve said there are plenty of things that can be done quite simply to provide that evidence

Sally 32:18
Kat, what do you want the system to look like?

Kat 32:21
I think it’s genuinely all be covered in a really kind of clear and concise way. Yeah, just needs to be you know, easily accessible and easy to use, I think is, and then obviously everything else on top. Yes, that’s literally everybody said everything else that I was gonna say

Sally 32:36
Just thinking about the MHRA. Patients don’t actually have proof, do they, that they’ve been harmed by drugs? Or devices? Do they? When you reported your harm to the MHRA, Kat, what did it ask for? Because you haven’t gone to a doctor for specific tests or anything so you’re reporting your own personal experience and this is what happened.

Kat 32:58
Yeah, obviously, yeah, so it was like the vaccine batch number, where I lived, what symptoms I had, and how it affected me, and if I had a diagnosis, what was it? Essentially, is what it said.

Sally 33:11
Exactly, so if they are prepared to take that amount of information for a drug or a device. Why can’t they take a similar amount of information for a non pharmaceutical treatment?

Steve 33:22
I just thought I’d stay Sally. I think you’re doing great work on this. I find it frustrating that not not enough people are picking this up and I think also not enough people are seeing the intersections and the crossovers between M.E and other conditions and the reporting of harms. I think it’s extremely important, I know from not only Nicola’s experience with M.E, but also experience with Ehlers Danlos Syndrome. That’s a whole other area, on the NHS, Ehlers Danlos – most of the treatment options are non pharmaceutical interventions. So, and now I mean that’s without even going into the kind of the the frontline emerging treatments for EDS surrounding the cranial cervical and atlantoaxial instabilities and what can be done about them, so it’s it’s a really it is a really important topic Sally and it and it broadens out into so many other conditions and it, but it also addresses inadvertently the issues as I kept referring to around psychologization of illnesses, and I think it’s crucial in this so all power to your pen on this one.

Sally 34:30
Thank you, it is hard work, trying to get people to engage with it.

Steve 34:36
It’s ridiculous. You shouldn’t even be in this position in the first place. But that’s another podcast entirely.

Kat 34:43
I’d just like to say, I just echo what Steve said, I think you’re doing an amazing job. I think you’re doing a fantastic job and it is frustrating seeing people kind of shout that they want their experiences heard and shared. But at the same time they’re not engaging in something which could essentially make that happen.

Linda 35:01
Sharing everything and, and encouraging everybody you know, patient power and all that, just everybody try, do your little bit and sign a petition or write to an MP.

Sally 35:13
Yeah, I just think every signature and every letter to an MP or Lord Kemal, the better really, all in it together. Anyway, thank you to all three of you for talking to me today. Very interesting.

Steve 35:27
Thank you.

Linda 35:27
Nice to see you all.

Kat 35:29
Bye

Sally 35:30
Bye

Thank you for your ongoing support with this campaign.

Stay safe.

Love Sally and Foggy (OBVIOUSLY)

xxxx

The post FogPod Episode ‘Shake It Up’ – Transcript. first appeared on ME Foggy Dog.