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.

Our stories are precious, vital chronicles of our experiences.

Too often, our voices echo only within the bounds of our community.

But the people who truly need to hear us – doctors, psychologists, NHS managers, and government officials – remain largely uninformed about the devastating impact of this illness.

If you would like your story to be included in our compendium, which will be presented to those people in righteous fury, then this is your opportunity.

Share your story, or even a snippet, whatever you can manage. Whether it’s 100 words or 2,500, every voice matters.

Feel free to express sadness, anger, hope, or optimism, but above all, be truthful.

Please avoid naming any medical professionals unless quoting from publicly available material.

Otherwise, anything goes. Tell us your story, and we’ll tell the world.

You can be named or anonymous – your choice.

Martin Lev, a child actor who played gangster Dandy Dan in the film Bugsy Malone, killed himself in 1992. He suffered from M.E.

Thirty years later, we are still seeing this happen. From suicides to assisted dying, this is unacceptable. Help us to bring an end to inaction, neglect and indifference.

Send your stories to Chris Ritchie: chrisritchie75@gmail.com

This is an expansion of the pandemic book project Chris and I have been co-producing since February 2024.

Reminders

• No one is being paid for contributions to/working on this project
• Any proceeds will go to M.E. organisations to benefit pwME
• International contributions are welcome

The post Compendium: We Want To Include YOUR M.E. Story first appeared on ME Foggy Dog.

Subject: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E)

To Secretary of State for Health and Social Care Victoria Atkins MP

I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to address the unique needs of this patient population.

M.E., also sometimes known as Chronic Fatigue Syndrome (CFS), is a debilitating complex neuro-immune condition characterized by post-exertional malaise, extreme neuro-exhaustion, cognitive impairment, and other symptoms that significantly impact daily functioning. For those with severe M.E., the consequences are particularly devastating, often rendering them bedbound and reliant on extensive support for even basic activities.

Despite the severity and prevalence of this illness, there is a glaring absence of specific protocols within the NHS to cater to the complex needs of individuals with severe M.E. Consequently, many patients are left without adequate medical attention, facing significant barriers to accessing appropriate care and support. M.E can sometimes be fatal and patients have died from malnutrition as a direct result of neglect, stigma, and a poor knowledgebase in NHS hospitals. In 2024, medical professionals who understand the complex nature of the disease and who contemplate ‘off label’ treatments are finding themselves at risk of referral to the General Medical Council due to the lack of a NHS protocol.

It is imperative that the NHS recognises the urgent need to address this gap in healthcare provision and take concrete steps towards the creation of a comprehensive protocol tailored specifically to support individuals with severe M.E. This protocol should encompass the following key elements:
1. Specialised Care Pathways: Develop clear and standardized care pathways for individuals with severe M.E., ensuring access to specialist consultations, symptom management, palliative-style care, and home-based support services.
2. Education and Training: Provide comprehensive training for healthcare professionals to increase awareness and understanding of severe M.E., enabling them to deliver appropriate and empathetic care to patients.
3. Research and Innovation: Allocate resources for research into the underlying mechanisms of M.E. and the development of effective treatments, with a focus on addressing the needs of individuals with severe forms of the illness.
4. Patient Involvement: Ensure meaningful involvement of individuals with severe M.E., as well as their caregivers and advocacy groups, in the design and implementation of the protocol to ensure it reflects their needs and preferences.

The creation of an NHS protocol for severe M.E. is not just a matter of healthcare policy; it is a moral imperative to uphold the principles of equity, compassion, and dignity in healthcare delivery. Failure to address this issue perpetuates the suffering and marginalization of a vulnerable patient population, denying them their fundamental right to access quality healthcare.

Therefore, I urge you to prioritize the development and implementation of a dedicated NHS protocol for severe M.E. as a matter of urgency. By taking decisive action, the NHS can demonstrate its commitment to meeting the needs of all patients, regardless of the severity or complexity of their illness.

Thank you for your attention to this critical issue.

I look forward to your prompt response and action on this matter.

For Media Inquiries, Please Contact: Sally Callow, Founder- ME Foggy Dog

Contact – sally@mefoggydog.org

About ME Foggy Dog

We are committed to improving the lives of people living with Myalgic Encephalomyelitis and campaign for better healthcare outcomes for affected individuals. Visit mefoggydog.org to learn more about our work and how you can get involved.

[End of Press Release]

This letter is also open to the public to sign and support. You can sign your name here 

The post Press Release – Open Letter to Secretary of State for Health and Social Care Victoria Atkins MP 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.

The List

1. Other than on the socials of advocates and people living with M.E, have you seen ANYWHERE that 1.25 million+ people in the UK now meet the diagnostic criteria for Myalgic Encephalomyelitis? It has yet to be stated in MSM.

2. M.E is hardly ever mentioned in articles about Long Covid (est 1/50 articles and then mentioned as ‘similar’ or ‘overlaps’). It has STILL not been made public knowledge that half of long Covid cases meet M.E/CFS diagnostic criteria. Covid19 can lead to M.E or M.E-like chronic illness – again, no mention in MSM.

3.The UK Govt (and most/all Govts worldwide) have not acknowledged Covid causes M.E. (cases meet M.E criteria)

4. This lack of acknowledgement means we have no hope of increased research funding for M.E. M.E has always been GROSSLY underfunded by Govts.

5. Prior to Covid, M.E research received around 50p-£1.50 per patient per year in the UK. Comparable diseases such as M.S and Parkinson’s got around £40-£60 per patient per year. Why the difference?

6. 5% of people living with the disease have a very poor quality of life. Research shows it is as poor as in people with late stage cancer or late stage renal failure – this can go on for years/decades. There is no appropriate care/support for these very ill people.

7. Those on the ‘milder’ end of the spectrum have lost 50%+ of pre-M.E functionality. Yet this is rarely acknowledged by DWP, medics, and others who make ill-informed decisions about the person’s life.

8. Redefining Gravity will raise a MINIMUM of £1million for M.E biomedical research for Cure ME/MECFS Biobank and tackle the stigma by raising awareness of the disease on a large scale.

9. It’s obvious Govts and MSM will continue to stranglehold the funding M.E receives AND the narrative around prevalence/Covid/Long Covid. So we create our own narrative. We ‘redefine gravity’ –

10. We create something ourselves that is so big it CANNOT be ignored.

11. This is why I want A-list artists to perform. Their ‘reach’ is what our cause needs.

12. Redefining gravity is a CHALLENGE. I figure, if I’m going to do it….DO IT!! Dream big, reach for the stars and see what happens.

13. ‘Challenge’ = No budget. It can only be a success through VOLUNTARY and GOODWILL contributions of time, effort, skills, materials, and talent. Think ‘Challenge Anneka’. If Anneka Rice can do it….. why can’t I? (I’ll give it a good try at least!)

Get in touch if you can/want to help. I particularly need guidance from people with experience/expertise in the music industry and event management. But many hands make light work and all that, the more hands the better!

The JustGiving page for Redefining Gravity has been live since July 2023 and will be accepting donations until after the concert in July 2024, you can donate at any time. All donations go direct to Cure ME/M.E./C.F.S. biobank.  DONATE HERE – THANK YOU

Please follow the socials for this challenge, you can find it on X and Instagram using the handle @RDGravityME. Help to spread the word.

We have merch! (as you can see me wearing in the main photo above) Buy yours today via the website.

WEBSITE – WWW.REDEFININGGRAVITY.CO.UK

£1 million (MINIMUM) ….here we come!!

The post List of Reasons Why This Redefining Gravity Benefit Concert Is Needed first appeared on ME Foggy Dog.

You know THOSE people?

THOSE people who say YOLO? (You Only Live Once)

THOSE people who throw caution to the wind and take risks due to the widespread belief that the medical profession can fix everything and get bodies ‘back to normal’ if anything ‘goes wrong’?

What happens when the problem is common but not fixable?

Caught a virus? Take paracetamol and stay hydrated. You’ll be better in a fortnight.

Having surgery? You’ll most likely be better and fully functioning within a few months after participating in physiotherapy.

Getting vaccinated? You might have minor side-effects for 24 hrs but then you’ll be fine.

These 3 things are some of the triggers for Myalgic Encephalomyelitis.

Viruses, surgery, vaccines.

People living with M.E/C.F.S become unwell and start looking to be fixed.

This is when patients face –

– nothing showing up in tests
– disbelief from medics,
– being told there are no treatments or cure
– being told that 5% get better and most will be ill for the rest of their life OR not being told this at all and having their illness downplayed.
– snake oil salesmen promising the world, costing the earth, but M.E-related quality of life and ill health will not improve.
– loss of relationships and friendships due to poor understanding of the disease and stigma.
– loss of employment as employers struggle to understand/support people with Myalgic Encephalomyelitis.
– being denied disability benefits because of the rife deliberate misinformation on the disease.

Individuals living with the disease are worth £1.50 per year to the UK Government. That’s how much funding we were given per patient per year in 2019 (around £450,000). I am currently waiting for responses to Freedom of Information requests asking for information on how much funding M.E was given in years 20/21, 21/22, and 22/23 as this information is not available/impossible to find online.

With that negligible level of funding, M.E will never get a biomarker/diagnostic test, treatment, or cure.

There are now 1.25 million people living with this disease in the UK, an updated global prevalence statistic is near impossible to estimate at the moment due to multiple factors including variable Covid19 rates, and lack of data. However, I believe it is likely that the pre-COVID19 global prevalence of 17-30 million has at least tripled since 2020.

All of the above is why I have reached my limit of putting up with the status quo. If Governments will not take M.E seriously and continually reinforce the brick wall that I have been banging my head against for years, then I will take another route. I will go around the wall.

That’s why I set the Redefining Gravity challenge. Let’s change the narrative –

Redefining Gravity

See redefininggravity.co.uk for all info.

Get in touch if you have the skills, talent, expertise, knowledge, or connections to help with this challenge. Thank you.

Sally

ps. Foggy’s Global Challenge is running at the same time as Redefining Gravity, both campaigns aim to raise as much money as possible in one year. Both JustGiving links and Foggy’s *NEW* Google Maps map can be found on mefoggydog.org

The post Myalgic Encephalomyelitis, YOLO, and Being ‘Unfixable’. first appeared on ME Foggy Dog.

I thought I had got out of the habit of ‘grabbing rest’ but it seems to have made a return due to the hot weather.

I have fond (NOT) memories of needing to ‘grab rest’ when I worked full time, making the most of every spare second in which I could lay flat and close my eyes. When I was still in employment my morning routine would be make/eat breakfast, get dressed, sit on my bed to put make up on, lay flat for 2 minutes before heaving my body off my bed, and dragging myself to my car to make my way into work. That sense of dread that the 2 minute ‘energy grab’ wouldn’t last long and wondering when I would next be able to ‘rest’. By ‘rest’ I mean, sit/lay down somewhere quiet for more than 2 minutes.

Self-employment means I have far more control over my energy usage and, of course, the commute to work now involves walking through my house, across the decking, past the fishpond (saying ‘hello fish’ on the way past), and across the lawn to Foggy HQ rather than a 10 minute drive in heavy traffic and a 2 minute walk from the carpark to the place I worked.

I enforce rest breaks now, I ‘designed’ the office interior to made sure that I had enough space for a ‘gamer beanbag’, which has a kind of headrest built in. Fortunately for me, my Hypermobility

Syndrome means I don’t have difficulty getting down low to sit on it! It has been very amusing to see my parents attempt to sit on it with accompanying groaning and contortioning! Every hour or so, or when I get that slightly confused feeling that is the alert that energy is starting to wane, I move 4 ft to my right, flop onto my beanbag and listen to a mindfulness exercise on YouTube. 5 minutes of enforced ‘switching off’ and the confusion recedes again.

However, this current spell of hotter-than-usual weather has thrown by body off kilter. I had got into the routine of starting work at 9, rest breaks, lunch at 12, sleep, bit more work mid-afternoon then ‘clock off’. However, it is now too hot to work inside Foggy HQ after 11am every day, I’m not a fan of working in the evening (my M.E isn’t very keen either!) so I’m now trying to get into the habit of starting work at stupid o’clock when it is cool so I have done most of my work before 11 am. This change of routine is making my M.E go haywire…add in a high pollen count and I am more perma-knackered than usual at the moment.

This week, my morning routine has been cuppa at 6.30am (I wake up between 5.23-6.35am every morning – don’t want the neighbours to think there are intruders in the garden so I wait until at least 6.30am!), head to the office in PJs, turn laptop on – rest break while laptop warms up (so slow!), an hour of work, head into the house to have breakfast and get dressed  – grab 5 minutes of rest on my bed, head back to the office, another hour of work, beanbag/mindfulness rest break, more work then at 11am head ‘home’, and grab 5 minutes of rest laying flat on my bed with the curtains drawn. I do a bit more work later in the day on my laptop in front of the tv but the heat is making ‘usual’ working impossible.

The high pollen count is making me feel incredibly sleepy and so when I am ‘at home’ not working I spend most of my time propping my eyelids open! I find myself ‘grabbing rest’ at every opportunity as the pollen/heat combination is wiping me out. My parents are getting used to me disappearing for hours on end at usual times (for me) when I literally cannot keep my eyes open (pollen – not M.E) but naturally, the change in routine is also having a knock-on effect on my M.E.

Do you ‘grab rest’? Is it a sign to you, as it is to me, that your routine is off kilter? Perhaps it’s a sign that my energy management prowess has dipped over the past few weeks. After 16 years of practice, it’s a reminder that M.E is never static as it always has to adapt to its environment and new routine.

Love

Sally

and Foggy OBVIOUSLY xxxx

ps. Foggy’s globetrotting adventuring is returning in July 2023, get in touch if you can help him with his adventuring in mid-July – August.

The post M.E and Grabbing Rest 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.