I have posted the response received from Paralympics GB / Every Body Moves on social media in recent weeks but am now actioning the next step.

Response received 7th September 2024.

Dear Sally,

Thank you for taking the time to write to us. We appreciate your concerns and hope that the information contained in our latest blog post outlining some of the background to Every Body Moves goes some way to explaining our name and purpose.

Co-production is fundamental to our programme, so please do reach out if you’d like to know more or be involved in the future.

Very best regards

Barry Lloyd

Programme Manager

ParalympicsGB | Every Body Moves

The blog post mentioned in the reply has the title – ‘A bit of background on our Every Body Moves approach.’  This generic sounding email makes it seem as though Mr Lloyd hadn’t read my ‘open letter’ and sent out a standard response to criticism. However, this was constructive criticism from an organisation that represents part of the disabled community.

Next step

Extracts from the blog –

‘Every Body Moves powered by Toyota is a ParalympicsGB programme designed and co-produced with the disabled community to champion inclusion and empower disabled people to become more active.

The name “Every Body Moves.” Is more than just a title – it’s a purposeful play on words that has been co-produced with the wider disability community to reflect our shared values of inclusivity and empowerment. The name was carefully chosen through extensive collaboration with the disabled community including our lived experience advisory board and the award winning disability-led marketing agency Purple Goat, highlighting our commitment to centring the lived experiences and voices from within the community.’

At the heart of Every Body Moves is the social model of disability, which recognises that it’s society’s barriers, rather than individual bodies, that disable people. We strongly believe that disability is not about what you can or cannot do, but about how society fails to accommodate and celebrate the diverse ways people live and move. That’s why we say, “Every Body Moves,” – because every body, regardless of ability or impairment, moves in its own unique and meaningful way.
We will champion that unapologetically.’

I am wondering if any representatives from the energy limiting conditions community were involved in this collaborative work. Because a heck of a lot of us with this range of conditions do not see this #EveryBodyMoves campaign as inclusive or empowering. No amount of lifting of ‘societal barriers’ would enable us to participate in exercise/increase our exertion. With that in mind, here is the next bit.

Invitation ‘open letter’

Dear Mr Lloyd,

I hope this message finds you well. I wanted to reach out following your response to my correspondence regarding the #EveryBodyMoves campaign and the important conversation that must be had around its inclusivity for all disabled individuals, particularly those living with energy-limiting conditions such as M.E. and Long Covid.

To address these concerns, I would like to propose an online ’roundtable’ discussion (many in this community are still COVID19 cautious). This gathering would allow us to engage directly with individuals experiencing these conditions to better understand their perspectives and identify ways to ensure that the next Paralympic Games are more inclusive (even if only in the form of a public caveat to reduce stigma).

I hope you agree this conversation is important and necessary.  Please feel free to invite others who may also want to participate in this crucial dialogue.

Thank you for considering this opportunity to foster greater inclusivity. I look forward to your response.

Warm regards,

Sally Callow

Founder – ME Foggy Dog

Managing Director – Stripy Lightbulb CIC.

Email sent 18th September 2024, obviously I’ll keep you posted on developments.

Love

Sally

The post Paralympic Games and Greater Inclusivity – A Work In Progress 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.

45.

Where did those years go?! My head still thinks I am 29 in my pre-M.E healthy body judging by the ridiculous non-M.E friendly things it still wants to do!

My family have always been very open about all topics and the craziness and unusualness of the pandemic has caused us to have all kinds of compelling conversations during our time shielding me from the ‘bug’ (that didn’t work….March 23rd 2020 – great…but we’ve managed to make sure I haven’t caught it a second time!). It’s amazing what type of conversations crop up on a rainy Tuesday afternoon in the middle of a global pandemic. Topics that have been covered in our home include:

• What I need to do in the event of my parents’ death/s.
• What I want my funeral to be like.
• How my death would be announced to friends/family/Foggy Followers.
• Whether I/my parents want to go into care homes in the event of that being required.
• Wooden or cardboard coffin? Cremation or burial?

I’m sure it’s not just us who have been having these conversations. Covid19 has made human beings around the world think about their own mortality. Whilst some are behaving as if the pandemic is over, many of us are still living it. I live with my parents (both over 70 and so are ‘vulnerable’) and am a disabled person. Covid19 is still, despite all 3 of us being double jabbed, a clear and present threat. Whilst the risk has been reduced, there is still an associated risk. I have yet to meet anyone in person, or online, who can tell me how badly my Long Covid will react to reinfection after being double jabbed. I don’t want to put myself in the position of finding out either! At the peak of my acute infection I will never….NEVER… forget being so terrified that I wouldn’t wake up that I wrote down my last wishes and instructions for my parents to find. This was when the 111 service told me I wasn’t an emergency and that I should do ‘self-care’ at home. I was also quarantined and keeping my parents safe. I was on my own. I have never been so scared in my life. That will stay with me for the rest of my life, I’m certain of that.

The pandemic has made me realise that I am fortunate to live with my parents, there are many, many, other people who have had a much tougher time of it than me over the past 18 months. The pandemic has caused me to re-evaluate my life. I keep hearing on the news that other people are reassessing their work/life balance due to Covid19. In that regard, my life hasn’t changed. Due to my disability, I can still only work 20 hrs per week from my own home due to my very limited energy. My re-evaluation has been of whether there is anything I can or would change about where my life is right now.

My parents know that I have been frustrated at living with them for the past 15 years 4 months (ish). It was supposed to be a short term money-saving exercise while I was studying for my post-graduate degree in 2006-2007. As I have said many times before, I moved home in the Summer ready to start my Masters at the end of September 2006. I turned 30 in mid-October and thought the world was my oyster. Less than 4 weeks later, my life changed permanently. I caught a virus; I ‘got’ diagnosed with Chronic Fatigue Syndrome over 2 years later.

Prior to becoming a student I had always been very good with money, it was something I was proud of. I had planned for my future with savings and pension plans, I had lived independently in Plymouth for 7 years before moving back home in 2007. I am glad that I was able to do that because now, nearly 15 years later, it feels like it never happened. Like I have never had to be ‘independent’. As a 45 year old adult that makes me shudder inside and makes me feel like I have never been a ‘grown up’.  I have to actively remind myself that I paid my own bills, worked three jobs, went to university for 3 years, supported myself, and lived a full life away from my parents. 7 years out of my nearly 45 years on this planet, I have been able to live fully independently. Now, in 2021, I haven’t paid into a pension plan for 6 years and setting up a private pension plan is on my ‘to-do list’ when I have money to pay into one. All of that time spent planning my financial future in my twenties seems to have been a waste, it is not something that I can do anything about but it irks me nonetheless.

To be fair, my parents ‘allow’ me to live as independently as I can considering I have a very….very limited income. They could in no way be described as my carers but living under the same roof as them is a safety net for my very bad days. I won’t starve, they provide me with food, comfort, and warmth. For which I am, and will always be grateful.

My frustration is all down to me. I put pressure on myself by craving more independence and I still hold a smidge of optimism that one day a miracle will happen and I will be able to move out again. It has become a bit of an inside joke within my family, on a daily basis we talk as if nothing will ever change and that I will still be living here when decisions have to be made about care needs and/or funeral arrangements. On the odd occasion that I say ‘if I don’t live here I’ll do x, y, z’. That is usually met with snorts or giggles (from me). I do keep that positive optimism lurking in the fringes of my daydreams. As we all know, a period of remission could be waiting for me……an ability to work full time hours may be in my future….I might be able to pay rent! Woohoo! I have to hold on to that.

I think all M.E patients have periods of thinking about should, would, and could in terms of having M.E. If we had done anything differently would we not be in the life situation we are in now? The answer is that we will never know. Doesn’t stop us from wondering though does it?!

The problem I have now, today, is that my age has caught up with me very quickly. It seems just 5 minutes ago that I turned 40 and thought ‘this is my decade, it’s going to be fabulous!’. I was 43 at the start of the pandemic. In two weeks’ time I will be 45.  I keep reading about young adults and 20-somethings saying they are losing years of their life due to the pandemic. Aren’t we all? I think at age 44, ordinarily you kind of have to pull your finger out to do stuff that wouldn’t be ‘age appropriate’ any later in life. Time really is running out. I don’t have 20 years to live before I hit 45, I have 2 weeks….and M.E.

Overall, I am happy with how I lived my life up to turning 29, yes I had bad relationships and made mistakes but I was living life. Live and learn is how I live my life. You have to experience something to know if it was the right thing to do and if it wasn’t, make sure you don’t repeat the mistake! I loved my pre-M.E life and there is definitely an element of grieving my former life happening right now. But, that could be due to the pandemic causing me/us to reassess our lives as I said earlier. It could also be because I am now going through the exact same diagnostic and stigmatising process as I did 14-15 years ago now that I also have Post Acute Sequelae of Covid19 (Long Covid). I am dealing with negativity and learning to live with and self-manage  new chronic symptoms in real time and also having to deal with traumatic memories from the same process I went through with M.E a third of a lifetime ago. I’ve said I believe in ‘live and learn’….if I can do that, why can’t medics? They are making the exact same mistakes or poor decisions as nearly 15 years go, why have they not learned? Lives are dependent on them learning about viral-onset illness. At least my mistakes only impact my own life!

Love Sally

and Foggy (OBVIOUSLY)

xxxxx

The post How Did I End Up Here? first appeared on ME Foggy Dog.