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Dear Chronic Illness, compiled by Pippa Stacey
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AUTONOMIC DYSFUNCTION AND ME/CFS - WHAT'S THE SITU

AUTONOMIC DYSFUNCTION AND ME/CFS - WHAT'S THE SITUATION?. In my last one of these videos I wanted to touch on autonomic dysfunction and the overlap with ME/CFS. There are people out there who are much better qualified to talk about this one than me, but I hope this gives you a little introduction to another term that can be something of a buzzword!
I talk a little about autonomic conditions and symptoms, the intersection with ME/CFS, and the somewhat bizarre autonomic symptom that seems to disrupt my day-to-day life the most.
I’m a bit broken today and I’ve let myself spend far too much time looking at my phone this week than I should have done, but just wanted to say a preliminary thank you for watching and engaging with my posts lately. We still have #BlueSunday to come this weekend which I’m so looking forward to, but I’ve really felt the love and support these last few days and just wanted to share how grateful I am for it. I truly feel so lucky to have you 🥰💙

[#AD] Every May, we honour ME Awareness Month. Eve

[#AD] Every May, we honour ME Awareness Month. Every May, people with ME/CFS come together to share their experiences and use their limited energy to advocate for change. Every May, we try to show those outside of the community why this cause matters more than they might realise.
This May, I think it matters more than ever.
Last year, I wrote about how life in lockdown has given non-disabled people just a tiny glimpse into the true isolation of a condition like ME/CFS – something I hope won’t be forgotten as restrictions begin to ease. And now, as the world begins to turn more attention to the Long Covid enigma, it feels absolutely crucial that we learn from the lived experiences of people with ME/CFS.
In this month’s piece for CareCo, I wanted to share my concerns about the challenges people with Long Covid might be facing at the moment, and why it’s absolutely essential that lessons are learned from how people with ME/CFS have been treated by policy and professionals in the past.
It would take a whole other piece to really dive into the stigma, discrimination and medical bias which has defined the narrative of ME/CFS in the UK (as well as worldwide), but the bottom line is that people in this community have routinely been made to feel responsible for their suffering. So many have been encouraged to push past their baseline; beyond what their body is telling them.
I can tell you from personal experience that internalising this flawed belief as a teenager, the idea that I was responsible for my suffering, irreversibly damaged my health. The idea of those with Long Covid being subjected to this, at such a critical point in their illness, fills me with fear.
You can read the full piece via the link in my bio, and I hope it once more brings home the fact that post-viral illnesses and their complications really can happen to anybody. Nobody is immune. We all have a responsibility to care about this issue.
ME/CFS and Long Covid aren’t synonymous, but if you’re somebody living with Long Covid or any kind of post-viral fatigue who found this little corner of the internet over the last year, I hope you know that you’re warmly welcome here. We stand with you. ✨

Today is #MEAwarenessDay, and I’ve decided to bi

Today is #MEAwarenessDay, and I’ve decided to bin the post I’d scheduled and share this instead. A more accurate insight into life with ME/CFS.
The thing it feels so important to echo today is that often, you only see us ‘in-betweeners’ at our best. If you see us online or in-person, the chances are you’re catching us on a better day, or a better part of our day. The times we’re more able to mask our symptoms and persevere. What you don’t see are the worst days, and the worst moments. The times when existing hurts.
I’m so acutely aware of how lucky I am to get to do some of the things I do, but any time I share these things - events, stuff I’ve written, media articles like the one this morning - I immediately have The Fear.
I’m terrified that other people, with and without ME/CFS, look at these things and make assumptions. Assume that I’m healthier than I am, or worse, wonder how I could possibly be chronically ill. And I think these fears that live in the back of my mind say a heck of lot about the way the world still perceives fluctuating and invisible illnesses.
So today, here is a *delightful* selfie representation of what life is like the rest of the time. Noise hurts. My eyes burn and my brain don’t take in information. My chest aches when I breathe, I’m having endless allergic reactions, and my limbs are weighed down with lead.
Masking ME/CFS becomes second nature, and it’s a coping mechanism in itself. That said, on days like today, it feels important to let the guard down a little and remind people that this illness is still irreversibly damaging lives.
If you can in any way relate to this, I hope you feel somewhat more seen today. I hope you know that every day brings us closer to meaningful change. And I mean that sincerely. Every ME Awareness Day we’re a little closer to answers than we were the year before, and every year I have even more admiration for this gorgeous community and the things we make happen together. Hold onto that, even on the most rubbish of days.
Anyway, that’s my face. Might go all out and chuck in an even more stunning photo of my allergy face and swollen joints next time as well... 😶🤫

Well, today took an unexpected turn! Earlier on I $Well, today took an unexpected turn! Earlier on I got a text somewhat out of the blue inviting me to book my first vaccination, and a couple of hours later it was done and dusted 😳😅 I’m still trying to fathom why this happened now, after an eventful few months of being #LeftOffTheList despite reams of evidence about increased risk. We had GP surgeries blaming CCGs, and CCGs blaming GP surgeries. It’s the one time I’ve sought the help of external support and advocacy, and that experience alone was one of the most exhausting and disheartening processes I’ve had throughout my whole illness. More on that another time because there’s a much bigger conversation to be had about self-advocacy and good old ableism here and I do not have the brain for that today. That’s why it feels fitting to share this during ME Awareness Week. It’s not a conversation about vaccine eligibility I’m going for here, but one highlighting just one of so many invisible barriers many people have to contend with. More often than not, accessing support services is so inaccessible for people with chronic illnesses that the benefits of seeking support are far outweighed by the physical costs of doing so. Having to fight so hard for things we shouldn’t have to fight for at all drains every bit of physical and emotional energy you have. And I’m saying that knowing full well I don’t have to endure even a fraction of what some of my friends have to deal with. I’m so relieved to have had my first vaccine, but it’s tricky to feel happy when there are thousands of young people who will still be stuck. People who aren’t well enough to advocate for what they need. People who’ll read this post and react the same way I have to others before now - feeling so glad for the person who’s been vaccinated, but so incredibly low that their own illness wasn’t perceived as worthy of support. If that’s you, my heart really does go out to you - I wish there was more concrete advice I could give. I’m still rooting for you, though. Your experiences are valid. Never forget that.$

Okay. We need to talk about fatigue, and what it r

Okay. We need to talk about fatigue, and what it really means for people with energy-limiting chronic illnesses.
Energy Limiting Chronic Illness (ELCI) is a term coined by Chronic Illness Inclusion. It refers to long-term conditions ‘characterised by a debilitating mix of physical fatigue, cognitive fatigue and pain, alongside other diverse or fluctuating symptoms’, along with ‘significantly reduced energy for essential everyday activity’.
‘Fatigue’ is a term used by many people with ELCI, to try and capture the disabling lethargy they experience. However, ‘fatigue’ is a phrase also used by non-disabled people to express everyday feelings of tiredness and exhaustion. Many people with chronic illnesses find their experiences invalidated by non-disabled people comparing this version of fatigue with their own.
Previous research showed that chronically ill people overwhelmingly reported fatigue to be the most restricting, debilitating feature of their health condition… but that fatigue was the feature that least qualified them to self-identity as a disabled person.
Chronic Illness Inclusion has therefore proposed the term ‘energy impairment’ for use by those with ELCI, so the experience of energy limitation is conveyed as a type of impairment or disability. Using ‘energy impairment’ rather than ‘fatigue’ could help people with ELCI to communicate the objective loss of function due to their disability, rather than a subjective state that those without ELCI equate to their own experiences.
People with ELCI experience high levels of social isolation and lack of representation… even within the disability community. Government research tells us that problems with stamina, breathing or fatigue are the second most common form of disability in the UK, yet ELCI is yet to be recognised as a discrete impairment group.
Advocacy is ongoing and being led by the incredible Chronic Illness Inclusion team, but this work is playing a key role in shaping our approach at @astriidcharity too. I really think we need to get their work in front of more people who could benefit from it, so please do spread the word - Chronic Illness Inclusion’s website is linked in my bio!

HOW DOES ME/CFS AFFECT YOUR SLEEP?. Y’know whats

HOW DOES ME/CFS AFFECT YOUR SLEEP?. Y’know whats fun? Having a chronic illness which causes bone-crushing exhaustion but also a severe inability to sleep. Hands up if you’re a fellow chronically fatigued human who’s also been blessed with the joys of sleep disturbance!
In today’s video I wanted to talk a little bit about sleep disorders and the prevalence of them in people with ME/CFS, as well as the impact of significantly unrefreshing sleep (one of the most common symptoms of this illness) on other symptoms and condition management.
I’ve also shared a few of my own experiences with insomnia and long-term sleep disturbance, as well as the single most frustrating opinion I’m subjected to when people without ME/CFS try to offer well-intentioned (though frankly uncalled for) advice in this area.
However, as I mention in the video, even though there’s no real ‘fix’ for this part of my life, I’ve come a long way in finding ways of coping and learning to accept it. For me, sleep issues are still one of the most frustrating and disabling parts of my condition, but I’m grateful that I’m learning to live with it.
I’ll link the CareCo post I mentioned here, which goes into more depth about my personal situation with sleep, but just to re-iterate - I am *not* seeking advice or suggestions, no matter how well-intentioned, in this area. Whatever you’re about to say, I have already heard a couple of hundred times. This is an important boundary I’m setting for myself, and I know you lovely lot will respect that.
That said, do feel free to share any of your own experiences of sleep disturbance in the comments. Anything in this video you could relate to? Sleep in general is so fascinating to me so do tell! #MEAwarenessWeek

Something a little bit different for me but I’m

Something a little bit different for me but I’m really looking forward to being a part of @yorkfestivalofideas this year! My event, Chronic Illness Inclusion: Lessons From Lockdown, is taking place on Zoom on 10th June, and you can register for free tickets via the link in my bio.
Chronically ill people who are mostly based at home have been systematically excluded from business, culture and learning opportunities. York is one of the most iconic destinations in the world, and yet disabled and chronically ill people are consistently an after-thought for many businesses and tourist attractions.
However, when the global pandemic reached the UK in 2020, every single one of us became stuck in our homes too. Businesses were forced to become more innovative in order to survive - and in many ways, the world inadvertently became more accessible for people with long-term conditions too.
Through this event, we’ll explore how and why we must carry these lessons forward: what we can learn about inclusion from the pandemic, how businesses can adapt and become more accessible over the long-term, and how doing so can help reach a whole new market of chronically ill audiences and consumers too.
I’m looking forward to this one! Usually the things I do are tailored for individuals, but this one is for business owners, local authorities and those in the leisure and tourism industry. This is part of York Festival Of Ideas and I’ll be drawing upon my personal experiences in York, but the content will be universally applicable to all other areas of the UK too... so please do spread the word and pass this on to anybody who might benefit from it.
Thanks so much gang! 🥰💛

WHAT IS POST-EXERTIONAL MALAISE? #MEAwarenessMonth

WHAT IS POST-EXERTIONAL MALAISE? #MEAwarenessMonth. What the heck is post-exertional malaise? A while ago I filmed a couple of short videos like this one, aiming to shed some light on some of the symptoms or experiences of ME/CFS that I feel aren’t always fully understood.
This first one touches on Post-Exertional Malaise (PEM) - the worsening of symptoms after minor physical or mental over-exertion, which often has a delayed or prolonged onset in people with ME/CFS.
I wanted to talk about what PEM feels like to me, how it differs from examples of overexertion prior to my life with ME/CFS, some of the research findings about what actually happens in the body when somebody is experiencing PEM, and the emotional impact of managing this element of chronic illness throughout your everyday life.
Watching this back I realised I massively played down just how debilitating PEM can be and how poorly it makes you feel when you’re going through it, but I hope this just serves as a little introduction if you had never heard of it beforehand. Do feel free to share any of your own thoughts or experiences too!

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