Like many people with M.E, I can pinpoint the moment everything changed.

A relatively straightforward case of labyrinthitis triggered the illness that would alter the course of my life. My university graduation should have been a day of celebration. Instead, it became my final day of good health. During the four-hour journey home from Plymouth to Portsmouth, I was repeatedly forced to stop as severe sickness took hold. What I thought was a temporary setback was actually the beginning of a condition that would stay with me for decades. November 2026 marks my 20th ‘M.E-versary’, not something I will be marking with any relish.

The years that followed were marked by frustration, disbelief and a constant struggle to be taken seriously. Despite obvious symptoms, I found myself having to repeatedly justify my illness to healthcare professionals. Although my diagnosis eventually came after two and a half years, the process was far from reassuring.

After numerous tests ruled out other conditions, a locum GP diagnosed me with Chronic Fatigue Syndrome and casually remarked that I should be grateful it was not M.E because “that is much worse”. No one had discussed the diagnostic criteria for M.E with me, and crucial symptoms such as post-exertional malaise were never properly explored.

Years later, I was finally assessed by a private M.E specialist who confirmed what I had long suspected: my symptoms were highly suggestive of M.E. While the confirmation changed nothing medically, it provided something invaluable: validation from someone who actually understood the condition.

For around fifteen years, I would have described myself as mildly affected. I have always been conscious that many people experience far greater disability than I do. However, my health deteriorated following COVID-19 infections, and I now experience moderate M.E. Unfortunately, worsening after viral infections is an experience shared by many within our community.

Living through years of delayed diagnosis, misinformation and dismissive attitudes fuelled my desire to take action.

In 2014, I launched ME Foggy Dog, inspired by my beloved dog Patch. Patch had an uncanny ability to sense when I was struggling and would quietly remain by my side during periods of M.E payback. Although he has since passed away, his spirit lives on through Foggy, the mascot who became the face of the project.

Originally, Foggy was conceived as a globe-trotting traveller. I invited volunteers around the world to host him and document his adventures. The initial goal was ambitious to the point of being unrealistic: one million miles in a single year.

While that target proved beyond reach, Foggy’s travels captured the imagination of supporters worldwide. For several years he journeyed across continents, helping to raise awareness of M.E and bringing together a global community of supporters.

From 2018 onwards, the project focused its fundraising efforts on biomedical research through Cure M.E. Across multiple campaigns, events and global challenges, more than £13,000 has been raised specifically for M.E research.

Eventually, practical and logistical realities brought the travelling project to an end. Rising postage costs, global instability, the pandemic and cost-of-living pressures made worldwide adventures increasingly difficult to sustain. While Foggy’s passport has been retired for now, the search for new ways to raise awareness continues.

One unexpected benefit of running awareness campaigns was the opportunity to speak with thousands of people living with M.E and those supporting them.

Again and again, the same issue emerged: a lack of understanding among professionals made life significantly harder for patients. Whether in healthcare, education or the workplace, misconceptions about M.E often created unnecessary barriers.

Rather than simply highlighting the problem, I wanted to contribute to a solution.

That ambition led me to complete teacher training, attend the School of Social Entrepreneurs training, and crowdfund the launch of Stripy Lightbulb CIC.

Established in 2017, Stripy Lightbulb provides online training designed to improve understanding of M.E among professionals with a duty of care. Our courses are aimed at healthcare practitioners, employers and education professionals, helping them understand both the realities of M.E and the mistakes commonly made when supporting people with the condition.

As a social enterprise, we are committed to reinvesting in the community. Fifty percent of any surplus generated by the organisation is directed to M.E research through our chosen beneficiary, Cure M.E.

Changing attitudes is not always easy. Convincing people to undertake training on a condition they may not fully understand, or may even doubt exists, remains a Himalayan-sized challenge. Nevertheless, the organisation has grown steadily, received positive learner feedback, won awards and delivered successful in-person training events, including a well-received training day in Cardiff.

Over the years, one lesson has become increasingly clear to me: meaningful change requires more than small adjustments around the edges. People living with the disease need to feel change in their day to day lives.

This belief has informed much of my advocacy work.

In 2024, I launched BED for Severe M.E, an annual awareness and fundraising campaign held each year on 29 October. The campaign emerged after listening to people with Severe M.E who felt their experiences were not receiving sufficient visibility within wider advocacy efforts.

Prior work on the #MPDoYourJobForME campaign alongside Chronic Collaboration had already exposed me to the alarming levels of neglect experienced by many people living with Severe M.E. Hearing these harrowing stories reinforced the need for dedicated action.

BED for Severe M.E was designed to be accessible, inclusive and engaging. People can support the campaign in a variety of ways, including purchasing awareness badges, wearing pyjamas to work, taking part in social media activities, making donations and contributing tributes to an online memorial board. Please help this annual event continue to grow year on year, we can’t do it without community and ally participation.

Proceeds from the campaign support organisations making a direct difference to the M.E community. I chose Smile for ME as one of the beneficiary charities because of its genuine commitment to supporting people living with Severe M.E and their families.  I selected ME Research UK as a beneficiary this year because I firmly believe that biomedical research is key to unlocking answers for people living with M.E, and their dedication to funding high-quality research both in the UK and internationally is helping drive that progress forward.

Whether it is developing the M.E Friendly Hospital Charter, campaigning for dedicated NHS protocols for Severe M.E, delivering professional education through Stripy Lightbulb CIC, or running community initiatives through ME Foggy Dog, the goal remains the same,  social change for the M.E. community.

Everything we do is rooted in a patient-led, person-centred approach.

Over the years, my advocacy work has taken me into discussions with the NHS, the Department for Work and Pensions, local and national government representatives, and collaborative groups across the voluntary sector. At every table, I carry the voices of people living with M.E, particularly those who have too often been ignored, dismissed or excluded from decisions affecting their lives.

M.E may have changed the course of my life, but it has also given me a purpose: to push for greater understanding, better care, meaningful research and a future where people with M.E are listened to, respected and supported.

The post Living with M.E Since 2006: From Patient to Campaigner, Fundraiser and Changemaker first appeared on ME Foggy Dog.

To give a bit of context, it is important to know where this flare sits within 2026. I had been actively trying to lose weight since September 2025, I signed up to a programme that didn’t encourage dieting but helped to change mindsets to bring about mindful eating. It worked for me and the food noise disappeared. I could eat whatever I wanted, I just didn’t feel the need to over-eat or snack. I lost a stone quickly (6 weeks) but then plateaued for 8 months. I figured my body just wasn’t ready to let go of any more weight and I would just wait it out. I did however lean towards a low carb diet as I had watched a nutritionist’s webinar in which they said low carb = more fat burning. ‘Couldn’t hurt’, I thought. So I swapped to low carb food in around April/May 2026. I got to eat my favourite things….regularly – bacon, eggs, meat in general and vegetables…lots and lots of vegetables (particularly salad – remember that). Again, I wasn’t sticking to any particular diet, I was simply cutting down on carbs.

At exactly the same time a few wider issues were going on;  the UK was going through repetitive heatwaves, these brought M.E health challenges along for the ride and I struggled to function for the whole of the summer. I also developed heat exhaustion in June, I was drinking plenty of fluids but had run out of electrolytes temporarily (I now can’t take these either because they are full of MCAS unfriendly additives! I make homemade electrolyte drinks). Big mistake…huge! I had been going through peri-menopause for at least 2 years, had tried HRT but didn’t get on with the faffiness of applying gel (my M.E brain didn’t like the faff and specific instructions). My GP wouldn’t allow me to use patches. So, I returned to using herbal supplements instead, as they had worked to take the edge off previously. In my mind, I was dealing with perimenopause and it wasn’t an issue (I return to this later on). Lastly, I had had 18 months of chronic stress, not work-related, that I had been managing privately – to my Sensate machine….thank you!

This context is important, as it helps to understand why I didn’t have a blooming clue what the trigger behind this flare is. Personally, I believe it was a perfect storm of all of the above. All of the factors named above are known triggers for MCAS flares. I had been coping with all of that for months before my body just said ‘STOP’ very loudly. I take antihistamines every day, and have done for years due to minor allergy stuff.  I believe that is why I didn’t get any visible early signs of worsening MCAS.

This flare started quickly and dramatically with 6 days of diarrhea, followed by a week of constipation. This cycle has been repeated throughout the 9 week flare, irrespective of what I have eaten (food info coming up). Pain in my Duodenum started in week two alongside ‘tickling’ sensations on the skin covering my Duodenum – known ‘symptoms’ of MCAS. I have had the same sharp pains in my Duodenum at least a few days a week since then. It has been explained to me that the inside of my Duodenum currently has the appearance of  bad sunburn because of the impact of the MCAS flare on my insides. This means it is very sensitive, and nerve endings are ‘irritated’. I mentioned the MCAs flare to my GP during an appointment about another issue and she prescribed Famotidine to help with digestive issues. Famotidine works for me (reduces some symptoms) so you can imagine how annoyed I was to learn it would not be re-prescribed without a GP F2F review and the next appointment couldn’t be even booked in until 3 weeks later. For an illness that I have been told can’t be diagnosed locally by the NHS. Great!

A few days into this flare is when the ‘allergic’ feeling began all over my body. I am acutely aware of this feeling on my face and neck but it is present in a lot of different places. In fact, anyone who has watched any of my recent videos will see I now scratch my face, usually my chin, regularly. This is because my skin is tingling or itchy. Think hayfever on steroids. My eyes are scratchy/watery/dry/sensitive most of the time, sinuses are irritated – I sneeze a lot and not solely due to pollen. I am reacting to EVERYTHING and anything – this is new for me. I have had pollen allergies for years, this is partly why I take antihistamines every day. Now I react to more chemicals, odours, environments than ever before. To the point that I can’t pre-empt encountering any difficulties.

I didn’t know histamines (and subsequently MCAS) were in every part of a human body, including connective tissues.  Week 3 is when my wrists first became additionally painful and when my knees felt at even greater risk of subluxing.

Week 5 is when MCAS started wanting to play with my Dysautonomia. My broken/badly sprained foot is still healing and I am having to spend a lot of time flat with my feet elevated above heart level to help the healing process. This may be why my lightheadedness and inability to stand for longer than 30 seconds was more noticeable.

In week 7, my throat and chest felt the full impact of MCAS. My throat partially closed over. I don’t know if ‘partially’ means the term anaphylaxis can be used. But I was genuinely frightened because I was having breathing difficulties due to an allergic reaction – I still don’t know the specific trigger. My lips were tingling but there was no visible sign of MCAS on my face during this episode – no rash, hives, or swollen lips etc. My throat was sore and narrowing and my chest HURT. Breathing HURT and my chest felt very tight. I do not have access to Epi-pens (or equivalent) so I took an additional antihistamine as that was all I had available and waited to see if it would worsen and I would be in need of an ambulance. I rested on my bed and waited. The antihistamine was enough (I’m guessing), the narrowing stopped after about half an hour. It took 24 hours for all of that reaction to stop. During that 24 hours I contacted my GP via e-consult to ask if I could be considered for an epi-pen, I explained what had just happened. I was triaged and sent a message advising me that they would be in touch in 2-3 weeks to arrange a telephone appointment with my GP. O….K.  Not loving the lack of urgency but, as I can’t afford to buy one privately I had/have no choice but to just wait. Readers in the UK will appreciate that if my family have to phone 999 due to a future allergic reaction, they will do so with the knowledge that the ambulance may not arrive WiTH AN EPI-PEN in time.  It is a very real concern. This is why I want to have access to an epi-pen in my own home.

I have always been aware that MCAS can be triggered by more than food. But it is the only thing I am able to control. I can control what food and drink I put into my body. The research I have done over the past 9 weeks has told me the low histamine diet is just one tool to combat MCAS flares.  I have been eating low histamine foods for about 8 and a half weeks now. It’s been a slog. Low histamine food isn’t grab and go if I’m having a low energy day or going through PEM. It has to be cooked from scratch after being stored correctly (batch cooking can be done but it has to go straight in the freezer). Foods cannot be stored in the fridge as this causes histamines to increase. Remember, in the context above I mentioned heatwaves and eating vegetables, particularly salads? We had resorted to putting all of our fresh foods in the fridge to prevent them going ‘off’ quickly in the heat. I now know that was simply causing histamine levels to increase IN ADDITION to most of those vegetables being high in histamines to begin with. I believe, where food was concerned, it was an accumulative effect that reached a tipping point 9 weeks ago. I don’t want to be on such a restricted diet for any longer than necessary so once a fortnightI ‘test’ my MCAS. I eat something that I have had a mild reaction to in the past 9 weeks to see if the sensitivity continues. So far, my sensitivities continue. I get facial flushing, a burnt mouth feeling, I feel ‘allergic’, and have itchy skin.

To give you an idea of the types of things I am eating at the moment I am going to give some examples here. But, everyone with MCAS is different – I can tolerate these foods, others may not be able to – and vice versa. Please don’t suggest recipes etc in comments- thanks.

Breakfast –

Gluten-free Porridge made with water with a handful of frozen Blueberries.

Scrambled eggs made with water, salt/pepper.

Homemade Hash Browns (potato, extra virgin olive oil, salt/pepper) with an egg on top (fried only in EV olive oil)

Lunch –

Rice cakes with boiled/mashed carrots, drizzled with EV olive oil.

Gluten-free pasta, with butternut squash or carrots, drizzled with EV olive oil

Dinner –

Rice or GF pasta, frozen chicken (airfried from frozen), courgette, carrot, butternut squash, drizzled with EV olive oil.

Jacket potato/mashed sweet potato, chicken (airfried from frozen), courgette, carrot, butternut squash.

Snacks-

Pumpkin seeds

Lightly salted rice cakes

Apple (skin peeled off)

The only oil I can tolerate is Extra Virgin Olive Oil, in the first few weeks I found I wasn’t eating enough calories every day so resorted to putting EV olive oil on most meals to artificially bump up calorific content.

Newbies to MCAS, there are numerous MCAS support groups on social media, including some that concentrate on food and recipes. I have found these groups to be invaluable in the past 9 weeks! In particular, @Drasayspodcast (YouTube channel). He’s a UK GP who posts regularly about a range of chronic illnesses. His MCAS content has been helpful, to me personally.

Dr Google and MCAS charity websites told me that there is plenty of anecdotal evidence that hormones can play havoc with MCAS. I noticed that the week before my period and during ovulation, my MCAS symptoms worsened even further, irrespective of my environment or what I was eating. Dr Google assured me this was ‘normal’ and experienced by many people with MCAS. I spoke to a friend with MCAS (and M.E.) about my flare and she told me the worst flare she had been through had been after she had gone onto a low carb diet whilst going through peri-menopause without HRT. It is this conversation that made me realise the context behind my flare and why I realised it was a perfect storm (not just one thing). Thanks to that conversation I started to understand how my hormones are interacting with MCAS and that I needed to try HRT again to stabilise my hormones so the MCAS would be less like a rollercoaster! I also stopped taking the menopause supplements as I realised they contained extras (bulking agents etc) that caused my body to release histamines. I contacted my GP to arrange an appointment, was again told I would be contacted to arrange an appointment in 3 weeks’ time. In week 9, my hormones are running wild,  untethered and I have no prescription medication to reduce MCAS reactions or to take if I have another nasty allergic reaction, because I am waiting to talk to a GP about an illness many GPs don’t believe in and have no referral to offer me. The joy I feel about this is just……!  It’s my M.E. ‘journey’ or 2006-2009 all over again! Yippee!

I have come across the term ‘Histamine bucket’ since this flare started and I think it’s a useful way to think about how MCAS and Histamine intolerance works. I’m going to include it here as it might help people new to MCAS or histamine intolerance. The charity Mast Cell Action has a very good explainer page on their website – https://www.mastcellaction.org/the-histamine-bucket-theory I’ll summarise this theory below –

Imagine your body has a bucket. Throughout the day, different things add histamine to that bucket, like certain foods, stress, exercise, allergies, infections, hormones, or even changes in the weather.    Normally, your body is constantly emptying the bucket using enzymes that break down histamine, but if you’re producing more histamine than your body can clear, the bucket starts to fill up.

I turn 50 in a few weeks. A 50th birthday without cake……. eek!!!

Love

Sally

and Foggy (OBVIOUSLY) xx

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The post Severe ME, NHS Neglect, and the 2024 NHS Protocol Open Letter: What Happened, What Didn’t, and What Comes Next first appeared on ME Foggy Dog.

Love,

Sally

and Foggy (OBVIOUSLY xx)

The post Moderate M.E is the Majority Experience: What It Means and Why Definitions Don’t Always Fit first appeared on ME Foggy Dog.

Monday, I badly twisted my ankle on a pot hole in a car park in Guildford (see the innocuous looking pot hole above!), I opted to self-manage at home due to the 30+ degree heat. I am one of those ‘at risk’ and ‘vulnerable’ people the health warnings are for. Having M.E means my body cannot regulate my temperature properly. Meaning I am at higher risk of heat exhaustion or heat stroke. So the thought of going to a hot, overcrowded, busy A&E or urgent care centre was very unappealing. I had to prioritise my M.E health (not worsening it) over a potentially broken foot/complex sprain.

Over the course of the next few days, I realised this wasn’t a simple sprain, but the heat was getting worse, and I still had to prioritise keeping cool, keeping my foot elevated, and staying calm (!!!!!).

Accumulatively, every day of the heatwave triggered post-exertional malaise (M.E ‘payback’) on Thursday evening. What I had tried so hard to avoid, was happening, and I could barely function. It’s been a while since I had PEM this bad (probably because I was also still battling a lower heat of 27° at the same time). This is what my own particular brand of PEM felt like last week – I did not feel ‘tired’ but did feel an overwhelming need to be flat and motionless. Everything around me felt like it was in slow-motion. I felt like I was in slo-mo too. I felt like vapour- as if I had no blood flowing. My light/noise sensitivites were heightened I felt like I was going backwards when sat down, found it difficult to hold my head up too, kept ‘falling’ backwards. Limbs felt like lead weights. Too neuroexhausted to speak. When I could speak it was difficult to string sentences together, speech was also slurred. I had partial facial palsy, my mouth/lower face was drooped. I was VERY pale. Eyes looked empty and unfocused. Cognitively, I couldn’t concentrate for longer than 5 minutes. Even then I was unable to fully understand what I was concentrating on. This is in addition to the ‘usual’ core M.E symptoms being ‘UP’. Glands/flu-like feeling. Remember, each person’s PEM symptoms will vary. But it is an exacerbation of symptoms usually experienced & often additional ones thrown in too. (Facial palsy/partial/paralysis etc). It is not simply worsened ‘fatigue’.

Despite drinking plenty of water, a lack of electrolytes (my supply ran out the day before – bad timing!) on Friday led to aching kidneys and a lack of peeing (sorry, tmi) and severe lightheadedness. A quick Google search told me this was likely heat exhaustion – despite my best efforts all week.

Standard medical protocol dictates heading straight to A&E. However, for people with M.E, an over-hot, crowded waiting room during a PEM crash is an impossible environment. This highlights a massive, systemic barrier to care due to most medical professionals not understanding PEM. When medics lack training on how this condition damages a patient’s systemic function, seeking emergency care becomes a massive risk. We know our bodies cannot withstand the sensory overload of a standard hospital environment during PEM. Furthermore, explaining PEM and our baseline to staff who don’t know about our condition requires energy and functionality we simply do not have.

Because of this lack of medical understanding, I had to choose to self-manage both the heat exhaustion and the injury at home first, using electrolytes, damp towels, rest, and elevation of legs/feet. Once the PEM improved enough for me to safely travel, I finally visited a walk-in centre this morning to get my ankle checked. The verdict is a small fracture in my distal fibula (a bit of bone has been chipped off), and a bad sprain. The staff were professional and friendly, but the infrastructure itself remains completely inappropriate for chronic illness. Waiting rooms are not built for patients who urgently need to escape intense light, lie flat (or at least recline), or elevate limbs. Now that the acute urgency of the heat exhaustion has passed, my next step is submitting an e-consult to my GP to check my kidney function. Writing the words “I was going through post-exertional malaise and wasn’t well enough to seek medical attention” feels entirely paradoxical to standard healthcare professionals, but it is a daily reality for millions of us.

Last week pushed my body far beyond its limits, but it also highlighted something bigger than my own experience. Living with M.E means constantly weighing risks that most people never have to consider, especially when emergency care environments are inaccessible by design. No one should have to choose between worsening a medical crisis and surviving the journey to get help. Until healthcare systems understand PEM and adapt to the needs of chronically ill patients, people like me will continue to fall through the gaps. I’m relieved to finally have answers about my ankle and to be recovering from the heat exhaustion, but the wider issue remains: accessibility in healthcare isn’t optional, it’s essential.

The post The Week Everything Became a Health Obstacle Course first appeared on ME Foggy Dog.

The first night set the tone for the whole visit. My best friend and I headed to The Barbican, part nostalgia tour, part curiosity about what had changed. Years ago, when I lived on The Hoe, I could wander down there without a second thought, slipping easily into the nightlife that was just a short walk away. But the Sally of 2026 is living a completely different life. Now, even a simple evening out starts with choosing a car park based on which option involves the least punishing hill or the shortest walk. These were the kinds of calculations we made constantly over the four days, weighing up energy, terrain, and what our bodies could realistically manage.

My friend has her own health challenges, so every plan came with layers of consideration. Somewhere between the cobbles and the sea air, I realised just how much I’d forgotten about Plymouth’s hills, and how effortlessly I used to walk everywhere. That version of mobility is long gone, replaced by a reality where walking long distances simply isn’t possible without consequences. It was a strange mix of familiarity and loss, seeing my old home through the lens of who I am now.

I won’t lie, the morning after the first night, I couldn’t stop crying. I felt defeated by my ill-health. All of the planning and micromanaging of energy seemed pointless. My body felt wrecked. Who was I kidding? I couldn’t even do a minimalist adventure any more. I felt very sorry for myself. It made me reflect on plans I had tentatively mentioned to family and friends for my actual birthday later in the year. I hate wasting money, I also hate wasting other people’s time, money, and effort. Did I really want to risk inviting friends and family to travel from all over the UK only for me to be too unwell to celebrate? So, I Whatsapp’d my nearest and dearest and told them I’d had a reality check and that I’d changed my mind. Reactionary? Probably. But I knew I’d forget the impact of my M.E on this trip and knew it was the right decision. I have no idea how I will mark my actual birthday, but I’ll decide with measured realism and pragmatism.

In my mind, I hadn’t pushed myself on that first night. All I’d really done was shuffle slowly through the Barbican from the car park and sit in two quiet pubs for a meal and a drink. It felt low‑key, manageable. I didn’t feel “tired” in the way people with M.E understand that word. But with hindsight, of course it was more than that, I’d already spent three hours travelling in the car earlier that day, and even with rest breaks, the exertion had stacked up. It was cumulative, as it always is.

So there I was, stubbornly arguing with myself: “Why on earth have I spent all this money to be here, only to end up stuck in my hotel room resting?” I think a lot of mild or moderate PwME will recognise that tug‑of‑war, feeling awful, but still trying to squeeze some enjoyment out of time away simply because we technically can, even though we know there will be consequences for doing not much at all. If I’d been at home, I would have cancelled everything and stayed put without a second thought. But being away changes the equation. I hate wasting money, especially when I don’t have much to spare, and that pressure adds its own layer to the whole experience.

The rest of the trip followed a similar rhythm, small adventures, carefully measured. I crossed the border into Cornwall for a spa visit and an excellent pedicure (chauffeured, of course), sank into the glorious sofas at the Everyman cinema in Royal William Yard, explored and took photos on the Beryl Cook walking trail  (my friend drove me to the statues), revisited where I used to live, work, and play (short distances from the car), caught up with another old friend in her home with a cuppa, and found myself in yet more quiet pubs for gentle meals out. I even visited The Box, a museum that’s sprung up since I moved away. What I hadn’t accounted for was the hill leading up to it, I underestimated it spectacularly. By the time I reached the top, my legs and chest were screaming, and I had to sit in the museum café with a bottle of water until my body stopped protesting. Reader,  it took five days for that leg pain to settle….my knees too (no comment)!!!

At some point during the trip, my body flipped into adrenaline mode. I felt “ok,” not tired in the M.E sense, which is always a warning sign. After twenty years of living with this illness, I know that feeling deceptively fine while doing unfamiliar things usually means the PEM will be deeper and hang around longer. I was right, tonight marks a full week since my last night in Plymouth, and the PEM is still lingering, slowly easing, but still very much present.

By the end of the trip the clearest lesson was simple and stubborn: I felt unwell the whole time, I didn’t leave my M.E. at home like an extra pair of shoes. It came with me, like heavy luggage. That reality shaped every choice, every small bit of joy and every compromise, and it’s the key takeaway I need to make sure I don’t forget. Travel with a chronic illness isn’t about pretending you’re someone you used to be; it’s about making room for nostalgia while being honest about limits, accepting the cost of being safe, and choosing celebrations with realism and pragmatism.

Love Sally

and Foggy (OBVIOUSLY x)

The post Birthday Year Adventure With A Side Dish of Realism first appeared on ME Foggy Dog.

Burnout has been the recurring theme in every collaborative CEO/founder meeting I’ve sat in on over the past month or so (or the “third sector”, “VCSE”, “nonprofit world”… whatever we’re calling it this week). Not as a passing comment, but as a steady undercurrent. You can hear it in the tone of voices, in the pauses, in the slightly-too-long silences after someone asks, “How are things going?”

On paper, these are resilient, experienced people doing meaningful work for a wide range of different causes. In reality, many of them are exhausted and out of ideas. Funding is tightening, the political landscape surrounding their particular cause feels increasingly unstable, and there’s a growing sense that lived experience is still not being listened to in the way we’ve all been pushing for. It’s a lot, and it’s happening across the board, not just in one pocket of the sector. I don’t feel separate from that, I recognise it.

One of the things I think people often misunderstand about ME Foggy Dog is what my day-to-day work actually looks like. From the outside, it’s easy to assume that it’s mostly about raising awareness of Myalgic Encephalomyelitis (M.E), creating social media content, and being visible within the community. Yes, that all still exists from our time as a social media-driven brand (2014-18), but it’s not where most of my time or energy goes anymore. The real work, the time-consuming and draining work, is about reaching outside our bubble for maximum social impact.

It’s about trying to build something that is sustainable in the long term. Something that isn’t entirely dependent on short-term funding or the unpredictability of goodwill (volunteering or donations). That means thinking like a social enterprise, not just a community-led initiative. It means constantly looking for funding opportunities, those little “life rafts” that keep us moving forward  (that sole trader social enterprises, such as ME Foggy Dog are rarely eligible for!) and trying to connect with audiences, partners, and decision-makers who aren’t already immersed in the M.E world. That kind of work is often invisible, and it’s neverendingly relentless. You don’t ever really “finish” it.

Then there’s the social media side of things, which has changed beyond recognition since ME Foggy Dog first started in 2014. Back then, it made sense to be a social media-driven brand. It was effective, manageable, and importantly for me at the time, it aligned with my career. I ran my own social media marketing company for a short time after leaving full-time employment, so that space felt like home. These days, it’s a completely different landscape. Algorithms have shifted and social media is all the poorer for it, public behaviour has altered, and the expectations around content have changed. There are organisations and individuals doing absolutely brilliant, highly engaging work online, far better than what I’m now able to produce, but they often have the time and/or teams to do that. To operate at that level now would be a dedicated job in itself. Not a sideline, not something you dip into between other tasks. That’s simply not something I can do.

Because alongside everything else, I’m also managing an energy-limiting condition. I can work for up to about 16 hours per week, and over time I’ve become very good at making those hours count. I can prioritise quickly, work efficiently, and get through a lot in a short space of time. But there is always, without fail, a long list of things left undone at the end of the day, and most of those things are the unglamorous, non-public-facing parts of running a social enterprise. Governance, finance, strategy, compliance, partnerships… all of the behind-the-scenes work that keeps things afloat. Remember, I’m doing all of that across two social enterprises.

Even writing it down, seeing it written down,  I can see why people might worry that I’m doing too much. It’s something I’m very aware of myself. But one of the things I’m incredibly grateful for is that I’m not managing this in isolation. My Directors, Team Stripy, are very clear: my health is not an afterthought, it’s a central factor in everything we do. They’ve said to me more than once that without me, there is no Stripy. Which is both flattering and slightly terrifying at the same time. But it does mean that every decision we make includes a check against what is realistically sustainable for me. If something isn’t M.E-friendly, it doesn’t matter how successful it’s been for another organisation, it’s not a good fit for us. It forces a level of creativity and honesty that you don’t always see elsewhere. We even explicitly factor my health into our SWOT analyses. It sits there, very clearly, as a risk. Not because anyone is being pessimistic, but because it’s the reality we’re working within, and ignoring that reality would be far more risky in the long run.

That said, the threat of burnout has still been quietly building in the background for a while. Not suddenly, not dramatically, but in that slow, creeping way that’s easy to miss until you take a step back. Since around 2020, there’s been a noticeable increase in “extra everything”. Extra projects, extra collaborations, extra issues that feel urgent, important, and impossible to ignore. Working in this space, it’s very hard not to get pulled into those things. When you see problems affecting your community, the instinct is to help, to fix, to respond. But those one-off responses often evolve into long-term commitments, and before you know it, you’re juggling something that has grown far beyond its original scope. It becomes another ongoing demand on time and energy, gradually shifting your focus away from your core purpose.

For both social enterprises, that core purpose is clear: to improve the lives of people living with M.E.

Over the past 9 months or so, I’ve been stripping things back. Stepping away from projects where I can, being more selective about collaborations, and asking some quite blunt questions about what we’re doing and why we’re doing it. It’s a bit of a “back to basics” approach. Less reacting, more focusing time and energy. Less being pulled into every new issue, more protecting the limited energy I have for the work that really matters. Hearing other CEOs talk about growing numbers of people leaving the sector altogether has definitely sharpened that thinking. These are people who care deeply about what they do, and if they’re reaching the point where walking away feels like the only sustainable option, then something isn’t working at a much bigger, systemic level.

All of which is why, as I sit here finishing up work for the week, I feel an overwhelming sense of relief knowing that I’m about to take a proper break. Not just a change of pace, but an intentional switch-off from everything work-related. The kind where you step away mentally, as well as physically. That rush of relief is probably the clearest sign that I need it. So for the next week or so, I’m planning to do something quite radical (for me, anyway): turn myself off, and then, hopefully, turn myself back on again afterwards in a slightly better state than I am now. I haven’t done this since last August (Norfolk Broads holiday!) and it feels long overdue.

If there’s one thing that all of this keeps bringing me back to, it’s that sustainability isn’t just about organisations, funding models, or business plans. It’s about people. If the people at the centre of these organisations burn out, then everything else becomes irrelevant.

So this is me, taking own advice for once… and stepping away before my battery runs completely flat.

Love Sally

and Foggy (OBVIOUSLY) xx

The post Burnout, and Turning Myself Off and On Again first appeared on ME Foggy Dog.

I heard the initial concerns about copyright and IP and wrongly believed there were laws in place that could protect businesses and creatives from copyright/IP violations. I also believed that, as long as I didn’t ask for anything to be created ‘in the style of’ So and So, I wasn’t stealing anyone’s work. I now know that I was completely wrong and that theft of creative output is a genuine concern, whether done deliberately or not, and whether the creative objects or not. Away from A.I., I have been the ‘victim’ of copyright theft; I could literally hear my own voice when reading M.E.-specific content from a very large public organisation who had engaged with my work. I know how hurtful that feels and would never intentionally do that to anyone else.

I dallied with creating artwork using A.I. for a short period of time around 2024, I haven’t created artwork using AI since 2025. Here’s that bit of the story….

I had the idea to create BED for Severe ME 6 weeks before the original first awareness day, 8th August 2024 (it’s now held on Oct 29th every year). I knew I would need original artwork to increase engagement, I also knew I wanted to sell badges as a revenue stream (50/50 split of profits going to 2 M.E. charities,) – the imagery needed to be GOOD but also timely. I needed to have finished artwork within 10 days. My first stop, as always was my friends who are artists. These awesome people have previously offered to create imagery either pro-bono or at low cost, something I am always grateful for as I am only too aware of the true value of their creativity, but we are a micro-entity social enterprise with very little money! All 3 of these awesome artistic friends were busy with other work; it should be noted that 2 of them directed me towards A.I. for a quick turnaround. I contacted a local graphic designer who has created designs and imagery for me before, I gave him a detailed brief, and paid him for an hour’s work (out of my own money – not ME Foggy Dog funds) – around £35. Unfortunately, although he had stuck to the brief it wasn’t what I had pictured in my mind. I knew I couldn’t afford to keep paying for different drafts so I thanked him and, did as my artist friends suggested and looked for a good A.I. site specifically for artwork. I found Nightcafe, a great site that offers the first few attempts for free but then it becomes a ‘credits’/subscription service.

As you can see from the images and prompts below, I learned I had to be more descriptive to get better results.

First prompt: ‘Basic light blue fabric sleep mask covers eyes in a darkened room’ – I figured I’d keep it broad to see what A.I. came up with first.

‘Close up on head, chronically sick woman head on pillow, they are wearing a blue sleep eyemask and noise cancellation headphones’ (5th prompt)

‘Sad, lonely, chronically sick person in bed in a dark room’ (10th)

‘Sad and lonely chronically sick woman in pyjamas laid on their bed’ (13th)  – far too realistic! Looks like a photo, something I didn’t want.

‘Sad and lonely chronically sick middle aged woman in pyjamas wearing an sleep mask. She is laid on her bed propped up on pillows.’ (15th)

157 attempts later…. (yes, I had to pay for credits for ‘evolves’ (re-dos)) and I finally saw what had been in my mind’s eye. 157 attempts meant I had to go through a lot of dinosaurs instead of humans, 7 fingered people, eye masks with eye holes (um….yeah because they would block out light!), and three-eared humans, to get to the end result I wanted.

‘Sad and lonely haggard chronically sick middle aged woman in pyjamas wearing a sleep mask. She’s asleep.’. Hurrah!! The word ‘Haggard’ was added, 10 more ‘evolves’ were made and – mission accomplished!

I decided I needed more images to reflect the diverse nature of our disease, and so to create the other 5 images in the series, I simply had to change the age/sex/ethnicity in the prompt. Even then it took another 30-odd ‘evolves’ to get the whole series.  This would not have been possible, in such a small space of time, away from A.I.. I didn’t want to use photographs of real people as I didn’t want to have to pick one person to be the ‘poster’ person for M.E. It also would have taken a long time to get volunteers/photos organised. Remember, I had 6 weeks to get everything created, uploaded to the website, badges printed and sold, donation pages sorted…etc etc.. I also didn’t want the image to look like a photograph, I didn’t want it to look like a real person. It is not based on any one, real individual – you can tell that from the prompts I used.

I have received low level backlash for using A.I. to create this artwork, I hope this blog provides an explanation as to why I did that in 2024/25. I also received praise from other corners of our community for using such visually striking images for the Bed for Severe M.E. campaign. These people asked what platform I used and are now using it in their own work. I should say that, these images are the permanent official BED for Severe M.E. promotional images and I won’t be replacing them any time soon, if ever. However, I see this as a learning exercise and it has helped to shape my current viewpoint on A.I.. I created maybe 10 A.I. images for M.E. work over the space of those 9 months nearly 2 years ago. I’d prefer to not create more AI artistic content in future, because of the concerns laid out in this blog. However, if I am ever in a situation similar to the BED for Severe M.E. 6 week turnaround scenario again, who knows. I have deadlines and M.E. funds to raise. Taking the moral high ground requires a healthy bank balance, unfortunately. Never say never, I have no idea what the future holds.

I have found it interesting that I received a small backlash for using A.I. to create artwork but am regularly encouraged by our community to use it for accessibility reasons such as creating transcripts, adding CCs to videos, or using translation services so people living with M.E. have greater access to my output. I wonder why we are outraged at some people potentially being at risk of losing their jobs, income, but not others? I paid hundreds of pounds to have a human translate English content into Welsh in 2023 because I wanted to be 100% sure of quality. But in 2026, there are very good AI translation services. In 2023, I was able to pay for this service because of grant funding, however, would I be as inclined if I were on a virtually non-existent budget? I believe budgetary restraints are adding to the drive towards A.I. being the way forward, it has certainly historically been a driver for me.

I should clarify that after playing around with A.I. for around 9 months on various projects, my eyes started to be opened as to the negative flipside of the convenience. I think A.I. has immense potential as a disability aid, it opens up the possibilities for those of us who need extra help with written tasks, or getting organised at the touch of a button. But, many of the uses of A.I.in the wider population seem to be vanity projects and pointless. There have been arguments made recently by tech giants, that the reluctance to embrace A.I.is similar to when the internet first came about. It’s claimed that people are scared of the unknown. I disagree, I think people are realising the negatives massively outweigh the positives. If A.I .can’t exist without harming the planet, at what point do we say no?

I was relieved to see that Erin Brockovich (I’m sure you’ve all seen or heard about the film of the same name) has started to tackle the impact of A.I. data centres in the US with her website – AI Data Center Reporting. The key concerns she is tackling can be seen in this screenshot from the website homepage-

The post Is the A.I. ‘Race’ Worth It? first appeared on ME Foggy Dog.

I want to be clear at the outset about what this piece is, and what it is not. Who Gets a Seat at the Table? Lobbying and Access in the UK is not a commentary on global politics, international relations, or any particular social issue. Like most people, I hold strong opinions in my private life, but they are not relevant here. This is instead a reflection on how lobbying and access to government operate within the UK, and on who is permitted to operate in those spaces, and who is not.  What follows is about process rather than ideology, access rather than allegiance, and observations drawn from my experience over the past six months working alongside the voluntary, community and social enterprise sector, particularly organisations representing people with complex, long‑term conditions. What has struck me most during this period is not overt resistance or hostility from government, but a quieter and more difficult dynamic to articulate: the sense that some voices are treated as inherently legitimate within policy‑making spaces, while others are cautiously, ever so politely, kept at a distance.

This became especially clear to me during discussions with the Department for Work and Pensions, when I, along with other VCSE leads, was told very plainly that the Department does not work with lobbying organisations. The explanation given was impartiality, engagement with lobby groups was said to risk bias, or at least the perception of bias, and therefore something the Department was obliged to avoid. At the time, this reasoning seemed fair enough. Civil servants are bound by codes of conduct that emphasise objectivity and neutrality, and departments are understandably alert to reputational as well as procedural risk.

The difficulty arose later, once I began to reflect more carefully on how influence actually operates in the UK.

Lobbying, in practice, is happening all the time. It occurs through parliamentary groups, briefings, policy papers and informal networks of expertise and familiarity. It is widely understood that many MPs, peers and ministers are members of organised advocacy or “friends of” groups, which are woven into the fabric of Westminster life. These groups convene discussions, shape narratives, frame both problems and solutions, and often help determine which issues are seen as credible or urgent. None of this is illegal, and much of it is arguably necessary in a system where no decision‑maker can be an expert in everything.

What is harder to reconcile is how this reality sits alongside a firm refusal to engage with certain other forms of organised advocacy. If patient organisations or VCSE groups representing those experiencing harm are characterised as “lobbyists” whose involvement would introduce bias, while other organised interests are engaged with routinely under different labels, then the issue is clearly not lobbying itself. It is the categorisation of who is seen as a legitimate contributor to policy formation, and who is not.

From within the VCSE sector, particularly in patient advocacy, engagement with government rarely feels strategic or polished. It is often reactive, driven by urgency rather than long‑term planning, and rooted in attempts to explain how policy plays out in lived reality. People come forward because systems are not working, because guidance does not align with experience, or because harm is occurring quietly and repeatedly in places that rarely attract sustained attention. These organisations are not generally seeking advantage or preferential treatment; they are trying to prevent damage, often with very limited resources and under considerable emotional strain.

Yet they are frequently treated as though their closeness to affected communities makes them problematic contributors rather than essential ones. Their input is framed as partial rather than evidential, as something to be managed rather than understood. Time and again, engagement is deflected into formal consultations that arrive late in the process, or into correspondence that is acknowledged but has little visible impact.

What troubles me most is how familiar this pattern feels when set against recent UK history. The Post Office Horizon scandal did not occur because nobody raised concerns. The contaminated blood tragedy did not persist because there was no advocacy. Long‑running failures in disability assessments, regulation, housing safety and environmental protection were not invisible; for years, they were articulated by those most affected. In each case, the problem was not the absence of voices, but the absence of sustained access to power at a point when intervention could still have prevented devastating harm.

By the time those voices were finally taken seriously, the damage was already embedded, and the response inevitably took the form of inquiries, apologies and retrospective reform.

This leads to an uncomfortable question that many people in the VCSE sector ask quietly, often among themselves: is access, in practice, shaped by resource? Not in the crude sense of bribery or explicit “pay‑to‑play” arrangements, but in subtler and more consequential ways, the ability to employ policy specialists, to navigate the language and rhythms of Whitehall, to sustain relationships over time, and to remain present even when an issue is no longer politically urgent. Well‑resourced organisations can afford to play that long game; many patient groups simply cannot.

If this observation sounds cynical, it may be because it points to a structural imbalance rather than individual intent. Systems can reproduce inequity without anyone actively choosing it, simply by privileging certain forms of professionalism, familiarity and endurance over others.

This is not an argument against lobbying, nor a criticism of any particular organisation or cause. It is, instead, a question of equity and consistency. If government departments decline to engage with patient or VCSE organisations on the grounds that they represent bias, while simultaneously drawing on the insight and influence of other organised interests, then the system is not neutral. It is selective, and selectivity, however well‑intentioned, has consequences.

So what could change? Not radical overhaul, but a change in approach. There is room to distinguish more clearly between campaigning and evidence, and to recognise that lived experience is not a contaminant but a form of intelligence. There is scope for departments to establish formal, protected routes for VCSE and patient input that are routine rather than exceptional, and that operate upstream of crisis rather than only in response to it. There is also value in being more honest about how influence actually works, and in acknowledging that refusing to engage with some groups does not level the playing field, but instead entrenches the advantage of those already fluent in policy environments.

Above all, there is an opportunity to treat early warning voices not as reputational risks to be managed, but as assets to good governance. Listening earlier is almost always less costly, financially, politically and morally, than dealing later with the aftermath of preventable failure.

What has stayed with me over these months is not anger, but a persistent frustration tinged with sadness. Many of the people trying to be heard are already exhausted, by illness, by bureaucracy, and by systems that seem only partially capable of seeing them. We speak often, as a country, about lessons learned, but lessons only matter if we are prepared to change who we listen to, and when.

The real question is not whether lobbying exists in the UK. It plainly does. The question is whose voices are able to travel far enough, early enough, to make a difference.

Sally

The post Who Gets a Seat at the Table? Lobbying and Access in the UK first appeared on ME Foggy Dog.