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.

As a social entrepreneur with ME Foggy Dog, I started beavering away behind the scenes on a new campaign in mid-August 2021.

I knew the NICE guideline publication was coming, I also fully anticipated a backlash and non-compliance to the recommendations. I pre-empted the publication and got to work.

I believe in transparency so am going to share with you the emails I sent, and the responses received, so you can understand where we are RIGHT NOW.

Email sent to Medicines and Healthcare products Regulatory Agency (MHRA) 27 August 2021

Dear Sirs,

I fully understand that you are the regulatory body for medicines and medical devices. However, I am wondering if you also regulate other ‘treatments’ that are not drug-based or patented/manufactured.

As you will be aware, the NICE M.E/C.F.S guidelines review has been paused and there is every chance that Graded Exercise Therapy will continue to be recommended to M.E/C.F.S patients as a ‘treatment’ and/or a ‘cure’ by medical professionals, despite NICE recommending, in their first draft in November 2020, that neither GET or CBT should be recommended to ME/CFS patients after spending over 3 years reviewing the evidence and hearing patient testimonies.

In recent weeks, proponents of GET and CBT have stated that there are no reported harms from either ‘treatment’. As you are probably aware this is because patients do not have a reporting mechanism available to them.

I am writing to ask if you would consider creating a reporting mechanism for anything that is heralded as a ‘treatment’ or ‘cure’ by the NHS, in this particular case GET and CBT. A mechanism in which patients to log their name, address, the date, and healthcare professional/clinic that recommended these treatments as well as the effects of these ‘treatments’ – somewhere to scan appropriate paperwork if possible.

If it is not possible to remove GET as a ‘treatment or ‘cure’, I believe patients deserve somewhere to report harms.

I look forward to hearing from you.

Regards,

Sally Callow

Response received from MHRA 6th September 2021

Dear Sally,

Thank you for your email.

Please note that these types of treatments fall outside the remit of the MHRA and therefore unfortunately we are unable to help. Our understanding is that it might be done via the HCP or organisation providing the treatment.

Kind regards,

MHRA Customer Service Centre

Emails sent to Penny Mordaunt MP 31st August 2021

Please see the forwarded email below (MHRA email)

As you can see, I emailed the MHRA last week regarding GET and CBT being recommended for ME/CFS.

NICE has not advised caution when recommending GET/CBT as a precaution during their ‘delay’ and so I believe patients are potentially at risk. Yet, these patients will have nowhere to report harms to if they participate in this ‘treatment’. This harm is now relevant to Long Covid as many Long Covid patients are experiencing the cardinal symptom of M.E – Post Exertion Malaise (85% have this symptom/characteristic). It is too soon to know whether these patients now have M.E or whether this unique characteristic is now shared by 2 illnesses.

Could you raise this issue with the Department of Health and Social Care?

I would be very grateful for your support in this matter.

Best wishes,

Sally

Response from Penny Mordaunt’s Communication’s Officer 9th September 2021

Good morning,

Thank you for contacting our office.

Rest assured, I have raised your correspondence with the Minister in charge and will get back to you once I have received a response.

Best wishes,

** No further correspondence has been received**

Email sent to Stephen Morgan MP on 15th October 2021

Dear Mr Morgan,

As you are aware, the NICE guidelines have been delayed and an ‘unprecedented’ roundtable is being held next week.

If NICE decide not to update its guidelines and continues to recommend Graded Exercise Therapy and Cognitive Behavioural Therapy, despite seeing swathes of evidence of harm during the review which lasted well over three years, can I please ask for your support in asking for there to be a system put in place by which M.EC.F.S patients can report harms from these ‘treatments’?

Is this something you could raise in Parliament?

I have contacted the MHRA and asked if they could create a system to report harms, I am aware that the MHRA deal with devices and drug treatments. I believe that anything recommended as a ‘treatment’ by the NHS and NHS England should be regulated. That includes GET and CBT. MHRA have told me this does not/can not come under their remit.

Interestingly, proponents of GET and CBT have expressed surprise at claims of harms as there have been no officially reported harms from the patient community. This is because there is no where to report harm to. I strongly believe that, if NICE do not see sense, a new reporting system has to be implemented. Patients need to ability to officially report that GET and/or CBT has negatively impacted their health.

I would be grateful for your support in this matter.

Best wishes,

Sally Callow

Response received 28th October 2021

(I know……I’m an M.E  advocate and founder of a training organisation….)

Dear Sally,

Thank you for contacting me about national clinical guidelines for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).

ME is a highly complex condition. It is vital that patients receive the best treatment and care that takes account of their needs. Despite so many people being affected by this condition, 90% of cases are thought to go undiagnosed, and people with ME are substantially undercounted and undertreated. In some cases, patients are left waiting over a year for a diagnosis, despite national guidelines stating that a diagnosis should be made within four months of the onset of symptoms.

The National Institute for Health and Care Excellence (NICE) is responsible for establishing guidelines on the diagnosis and management of ME. It recognises that existing guidelines are outdated and that patients are not receiving the full picture on recommended treatments, such as studies that have shown the inadequacy of cognitive behavioural therapy (CBT) or harms of graded exercise therapy (GET).

As you know, NICE was expected to publish its updated clinical guidelines on 18 August 2021. This followed several earlier delays to publication. In a statement issued on 17 August 2021, NICE paused publication due to “issues raised during the pre-publication period”. I understand the disappointment that will be felt by many at this decision.

I am aware from reports that NICE was expected to advise against the use of CBT and GET in people with ME. However, NICE expressed concerns that its recommendations were not widely supported by medical professionals. Its decision to pause publication is reportedly in response to concerns raised by some royal colleges, namely regarding the lack of alternative options to treat ME/CFS in the absence of CBT and GET.

ME research charities and patient advocacy groups have expressed disappointment at this last minute decision to pause publication, arguing that this will only delay required improvements to patient care.

Last week, NICE announced they were now confident that the guidelines can be effectively implemented and were due to discuss the input from the meeting also held last week with a view to publication.

People with ME/CFS have been waiting far too long for updated clinical guidelines. I urge Ministers to work with patients, charities, researchers and NICE to ensure that treatment and care is appropriate and that guidelines provide safe and practical recommendations.

At this time, I am uncertain which body any harms from treatment wold be reported to, or who would be responsible for creating this process. Therefore my team and I are looking in to this, and we will be back in touch as soon as we receive any response to our enquiries.

Thank you once again for contacting me about this issue.

I feel this reply missed the point of my email. I know there is currently nowhere to report harms to. That was the point….. No further communication has been sent or received.

Email sent to Vicky Foxcroft MP (Shadow Minister for Disabled People) 24th October (5 days before the NICE guidelines publication)

Dear Ms Foxcroft,

I am contacting you in your capacity as the Shadow Minister for Disabled People.

As you are aware, the NICE guidelines have been delayed and an ‘unprecedented’ roundtable was held last week. The guidelines are anticipated to be published either this week or next.

The final draft version was leaked online and this version does not go far enough to prevent harm to patients as a result of medical professionals recommending increased activity or exercise to patients as ‘treatments’. We are already seeing the language being altered to not raise any red flags.

Anecdotally, as a M.E/C.F.S advocate, I have seen a number of medical professionals state on social media that, irrespective of what is included within the NICE guidelines, they will continue to recommend Graded Exercise Therapy to M.E/C.F.S patients.

NICE spent over 3 years reviewing swathes of evidence of harm as a result of GET and increased activity, can I please ask for your support in asking for there to be a system put in place by which M.EC.F.S patients can report harms from these ‘treatments’?

Is this something you could help me with and/or raise in Parliament?

I have contacted the MHRA and asked if they could create a system to report harms, I am aware that the MHRA deal with devices and drug treatments. I believe that anything recommended as a ‘treatment’ by the NHS and NHS England should be regulated. That includes GET and increased activity. MHRA have told me this does not/can not come under their remit.

Interestingly, proponents of GET have expressed surprise at claims of harms as there have been no officially reported harms from the patient community. This is because there is no where to report harm to. I strongly believe that a new reporting system has to be implemented. Patients need the ability to officially report that GET has negatively impacted their health.

Given that many Long Covid patients now also have the key defining characteristic of M.E – Post Exertion Malaise and are being referred for exercise ‘rehab’ programmes in leisure centres and gyms, there is a very clear need for a mechanism to report harms from exercise. Most Physiotherapists do not know how to screen for PEM, it is highly doubtful that gym instructors know how to screen for it when it is not included in any Physiology handbooks.

I would be grateful for your support in this matter.

Best wishes,

Sally Callow

Response received from Vicky Foxcroft MP’s Office Manager on 3rd November 2021

Dear Sally,

Many thanks for your email to Vicky.

We have this evening tabled a number of questions regarding what steps will be taken to ensure that medical practitioners are no longer recommending GET following the publication of the new guidelines. We have also asked whether a reporting system will be put in place.

Once we have received responses to these questions, Vicky would be happy to follow up with a letter to the Department of Health and Social Care if you feel it would be useful.

Thanks again for getting in touch. We’ll let you know when we have received the responses.

Best wishes,

See the three tabled questions and responses below

https://policymogul.com/monitor/parliamentary-record/written-q-and-a/117735/question-for-department-of-health-and-social-care?utm_campaign=share-button

https://policymogul.com/monitor/parliamentary-record/written-q-and-a/117734/question-for-department-of-health-and-social-care?utm_campaign=share-button

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Answer

The post Campaign For A New Mechanism To Report Harms from Non-Pharmaceutical ‘Treatments’ – A Collection Of Emails. first appeared on ME Foggy Dog.

I was diagnosed with severe M.E. over three years ago, when I was 29, after a bad bout of Epstein Barr Virus which my body just couldn’t recover from. My symptoms are like those of any M.E. sufferer (the earth-shattering, debilitating fatigue; the turbulent ‘brain fog’; the aches and pains and bouts of flu-like symptoms; the wildly fluctuating body temperature, etc), but they can be brought on by even the very smallest ‘activity’, like eating a meal, which is what makes me categorised as ‘severe’. I’ve been housebound since July 2016.  I consider myself lucky not to be totally bedbound, because I can move around the house a little and on most days I can even get out into the garden. But I can’t sit or stand for more than a few minutes without going completely dizzy and lightheaded and risking bringing on a huge wave of fatigue, and it is this symptom which makes my life so limited. I have to spend the vast majority of the day completely lying down. I rest, I meditate, I listen to audiobooks, I dream and plan the novels I will write when I’m eventually well enough.  If I’m really feeling well (generally about once a fortnight), we bundle me into the car (seat tilted back so far it’s practically horizontal, so I don’t get lightheaded) to get to the park at the end of the road, where I can lie out on the grass to enjoy the wonderfully restorative feeling of being out of the house. I’ve just had to resign myself to being that mad lady who lies down in the park, even in the middle of winter… Clinging on to your dignity is a futile and energy-wasting endeavour when you have M.E.

It’s a strange life and not always easy.  People are always saying they don’t know how I do it.  But the truth is that you learn to adapt, because you simply don’t have any choice. Yes, there have been times when I have been mired in frustration, wanting to rant and rave at the universe.  There have been moments of terrible and overwhelming darkness.  I have been scared and hurt, angry and bewildered, vulnerable and lost.  Being so physically dependent on another person makes you feel extraordinarily exposed, like a beetle on its back, unable to flip itself upright.  But I want to be as happy as I possibly can within the limits my life has set for me, and it is still full of love and joy and laughter.  These days I think of my life as a bit like being an elderly cat.  Resting in bed, resting on the sofa, resting in the sunshine in the garden, not up to much but still being cared for and loved.  My life may be different from yours, but it is no lesser.

I’ve lost a lot of my more peripheral friends as I simply don’t have the energy to keep in touch with a lot of people. But my family and my core friends have been wonderful and although I don’t get to see or speak to them as often as I would like, in a funny way I think we are closer than ever because their support has meant the world to me. It has been transformational for my relationship with my husband, because we quickly learned that we faced this together, or not at all. Going through this has been a huge challenge but has brought us incredibly close and we manage our strange new life with as much humour as we can. I can wash and dress myself but he often has to dry and style my hair, which is both a penance and a joy because I can’t sit upright for that long so he has to dry my hair while I lie horizontally on the bed and hang my hair down the side for him to reach. It is the cause of much hilarity and often ends in fits of hysterical giggles at the monstrosities he creates.  M.E. is make or break for relationships of all kinds and those that you keep are all the more special for it.

There is hope for the future. I keep as informed as I can on all the latest M.E. research and it’s taken three years, some bad experiences with ignorant medical professionals and a lot of false starts, but I have finally got the right team of health professionals around me and for the first time since I’ve been ill I’m actually making progress.  It’s been tiny, baby steps, snail’s pace progress, but it’s progress nevertheless. The mere fact that I can write this at all is proof – just a few months ago I could never have dreamed of holding onto a cognitive thread for this long. There’s always hope, and there’s life in the old cat yet.

Miranda Gill, August 2019

The post Severe M.E Day- Miranda’s Story first appeared on ME Foggy Dog.

It’s also partly because there is no definitive test for the illness. Our diagnosis is symptoms-based. Patients are tested for every other illness that incorporates our symptoms until nothing else is left. M.E is the rubbish at the bottom of the barrel.

Here are 7 key diagnostic indicators from the ME Association website:

The seven key symptoms for making a diagnosis of ME/CFS are:

1. Post-exertional malaise or symptom exacerbation: the key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate.
2. Exercise-induced muscle fatigue: which may be accompanied by muscle pain.
3. Cognitive dysfunction: Problems with short-term memory and working memory (the ability to deal with tasks quickly), concentration and attention span issues, and word-finding abilities.
4. Pain: Can be persistent and difficult to control. Pain can be muscular, rheumatic or neuropathic. However, a significant minority of patients experience little or no pain.
5. Sleep disturbance
6. On-going, flu-like malaise: A general feeling of ‘being unwell’ that is accompanied by sore throat, tender lymph glands and problems with temperature control.
7. Autonomic symptoms: including orthostatic intolerance (an inability to sustain upright activity). Autonomic symptoms are very common in ME/CFS .

Unfortunately, the one symptom that patients and medical professionals concentrate on is fatigue, and unless you know about M.E, you might be unaware that other symptoms are related. Personally, I believe patients talk about fatigue to non-M.E affected friends and family because it is one symptom they would have a vague understanding of. Let’s be clear, our ‘fatigue’ is more like complete neuro-exhaustion that causes a cease in functioning. It’s not run-of-the-mill ‘feeling tired’.

For example, I have had Hypermobility Syndrome (HS) since my early teens, it has since been rebranded as hEDS (Hypermobile Ehler-Danlos Syndrome). M.E researchers now know it is common for M.E sufferers to also have HS, but at no point during my lengthy diagnosis period did any doctor link the two. Instead, each symptom was treated individually. ME Foggy Dog would recommend that GPs and other medical professionals take a holistic view that encompasses the whole patient experience.

It is only now, since starting ME Foggy Dog 5 years ago, that I understand many of my individual symptoms fall under the umbrella of M.E.  My fatigue, migraines, IBS, low blood pressure, vertigo, muscle fatigue and insomnia were all treated individually. It is interesting that I was never asked if activity worsened my energy levels, even after my diagnosis of C.F.S. (I meet the 7 indicators of M.E so class myself as an M.E patient).

As you can imagine, it is incredibly difficult to diagnose M.E because not every patient has the same experience. Levels of severity are different, symptoms are different; some have pain whilst others don’t. This is why we are raising as much research funding as we can so that one day, someone in a white lab coat will be able to devise a diagnostic test!

Another reason for it being hard to get a diagnosis is that only a very small number of medical students receive training on M.E at medical school, the majority learn on the job. This is the case for many other illnesses, but in the case of M.E it is further compounded by the fact that the information available to medical students and practitioners is not fit for purpose.

On 20th February, a Parliamentary debate was held on the ‘PACE Trial: People With ME’. Gosport MP and Minister for Care, Caroline Dinenage, responded to a series of questions from SNP MP Carol Monaghan about the ‘lack of understanding [M.E sufferers face] when seeking help’. In one response, Caroline Dinenage acknowledged the need for better education about M.E for GPs:

It is also true that the difficulties in diagnosis mean that patients with CFS/ME often experience delays in getting the treatment and support that they need. In recognising the need for GPs to be aware of the condition, the Royal College of General Practitioners identified CFS/ME as a key area of technical knowledge that GPs should have as part of their qualifying exams.

There is now training for GPs through the Royal College of General Practitioners but very few GPs are taking up the training. Foggy and I hope this training trend changes sooner rather than later.

Not only do M.E patients battle an illness that still requires much more extensive research to understand, but we also have to deal with ill-treatment: the all too frequent disbelief and lack of empathy from those in the medical profession.

Love

Sally

and Foggy (OBVIOUSLY)

xx

Don’t forget to donate!

The post For People New To Myalgic Encephalomyelitis – An Overview. first appeared on ME Foggy Dog.

I’ve said many times over the past 5 years that I wasn’t aware of the M.E global situation until I’d had the condition for 7 years. My GP had downplayed my condition so much I had absolutely no idea that there were millions of people with the same life-stealing condition as me. I joined a patient forum to see what little bits of info I could pick up, but a forum member told me point blank that I did not have C.F.S (that’s what my GP diagnosed me with) and that I had Lyme disease. I was told very bluntly that I was on the wrong forum. I didn’t bother arguing, I left and didn’t attempt to join any other patient support groups/forums.

I had wishy-washy C.B.T. 6 months after I finally got my diagnosis, I accepted that I needed to manage my energy levels if I wanted to continue working and just got on with it. I was able to work (with difficulty) so I kind of got stuck in a very unwell rut for 7 years. I looked on the NHS websites for enlightenment but didn’t learn much. I accepted ‘expert’ opinions from Occ Health and my own GP. It didn’t occur to me that they didn’t know what they were talking about.

I wonder how many patients are just like me. Their condition is so downplayed by doctors they don’t realise that there is a movement to push for progress. It didn’t occur to me to seek help from charities, as far as I was concerned I was on my own.

Then I created ME Foggy Dog in 2014.

Anyone who has followed from those first initial months will know that it was a huge learning curve for me. Initially, as far as I was concerned I had C.F.S not M.E. I was diagnosed by a locum who told me ‘think yourself lucky you have C.F.S, M.E. is so much worse’. I had chosen to fundraise for M.E because if I was feeling dreadful every day, M.E patients must be desperately ill and need help.

I wanted to make sure I was accurately representing M.E patients so did my research. I discovered that I met various different criteria for M.E. Criteria that had never been mentioned to me before and I know my GP had never asked if my symptoms worsened post-activity. They all (I saw MANY different GPs over 2 years) concentrated mainly on fatigue. They hadn’t asked the right questions which is why I wasn’t given an accurate diagnosis of M.E.

I have spoken to many patients who have also been given a C.F.S diagnosis but meet various M.E criteria. The patients I have spoken to are unsure as to their own health situation. Because it is so confusing, they are kind of hiding away and keeping themselves to themselves. They wouldn’t know how to explain it enough to raise awareness. Who can blame them for not doing research or campaigning when many of us can’t think clearly most days. I’ve lost count of the number of emails I’ve received since 2014 thanking me for explaining symptoms or a research paper because it helped them to understand the condition they have had for years.

Then there is the stigma.

Before Foggy, on the rare occasion that I talked about my M.E., I got extremely negative comments from colleagues. Friends were sympathetic but didn’t really understand what my body was going through. So, I stopped talking about my M.E. issues. It was just easier. I didn’t really understand all of the weird and wonderful symptoms and kept my daily struggles private – until M.E Foggy Dog. We know that there is a great deal of stigma surrounding M.E. worldwide. Patients ‘are lazy’, ‘it’s all in our heads’, ‘are hypochondriacs’ and it is hardly surprising that many people don’t want to publicise the fact they have the condition. We know that. So why are we surprised at the lack of engagement with our global movement? To engage means to go public about having a very misunderstood condition.

Do I get frustrated that we don’t raise as much money as we could? Yes. Just think, if every single M.E patient donated £1, $1, or one Euro we would raise at least 15 million for research (based on 17 million estimate). If every patient was on Twitter we would cause one hell of a thunderclap. If patients who are able to leave their houses join in on demos around the world we would create a huge ripple of awareness. But they don’t.

I have lost count of the number of times patients with the same level of severity as me have said ‘I’m so glad you are doing this for us’. My question would be, why aren’t you ‘doing it for us?’. Sometimes it’s just a case of priorities, they may choose to spend time with family (I don’t have kids or a partner), or dedicate every ounce of energy to their job (advocacy and M.E IS my job now) instead of campaigning. It’s their right to choose and shouldn’t be criticised about their decision. For some people, campaigning would be too energy-sapping or far too out of their comfort zone. Everything I do now is for the benefit of the global M.E community, I use every spare ounce of energy to raise awareness and educate; that was was my choice 5 years ago.

One point I would like to make is that people who don’t campaign, but have the ability to do so, can’t then complain about the lack of progress being made. Only a small percentage of the global M.E population are campaigning. It’s going to take time.

Love

Sally and Foggy (OBVIOUSLY)

xxxxx

Please don’t forget to donate – https://www.justgiving.com/fundraising/mefoggydog

Thank you.

The post Engagement With Our Cause first appeared on ME Foggy Dog.