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.

Today, on International M.E. Awareness Day, I am in awe of each and every one of you. I’m writing this, thinking particularly of someone truly remarkable – Shauna.

Shauna, your unwavering love and dedication to Row shines so brightly. To see your strength as you navigate the immense challenges of caring for Row, who has been bedbound with severe M.E. for so many months, is truly humbling. You are a force of nature, not only tending to Row’s every need with such tenderness, but also juggling work and creating the inspiring ’40 for 40′ campaign to raise vital funds for Row’s additional medical needs and crucial M.E. research. Your capacity for love and action seems boundless.

But Shauna, and all of you incredible unpaid carers, please know that you are not unseen. Your tireless efforts, often carried out behind closed doors, are the backbone of care for so many living with M.E. and other chronic illnesses. You are the constant, the advocate, the unwavering source of comfort and support. You navigate complex medical needs, emotional burdens, and often financial strain, all while holding onto hope and fighting for your loved ones.

Your love is demonstrated in the gentle adjustments of pillows, the careful administration of medication, the countless hours spent researching and advocating. It’s in the small victories celebrated and the difficult days weathered with unwavering compassion.

I know words can sometimes feel inadequate in the face of such profound dedication. But please know that your love, your resilience, and your unwavering commitment make an immeasurable difference. You are seen, you are valued, and you are deeply appreciated.

Sending you all the strength, the support, and the love you so selflessly give.

I’m so pleased to call Shauna a friend and hope, one day, I will get to meet Row.

With heartfelt admiration,

Sally

The post Unpaid Carers – International M.E. Awareness Day first appeared on ME Foggy Dog.

As M.E Foggy Dog supporters know, I started actively campaigning for an NHS protocol for severe M.E and better adherence to NICE guidelines in NHS hospitals in mid-February 2024. This blog specifically relates to the campaign for an NHS protocol.

The NHS protocol is now 2 months along and I have made no progress but I will be transparent about the responses received and what action I am planning next.

You can see the ‘Open letter’ urgently calling for an NHS protocol via the link above (please sign/share if you haven’t done so already – thank you). Because the UK is made up of separate nations,  the ‘open letter’ version is only addressed to Victoria Atkins MP, Secretary of State for Health and Social Care: I live in England and most Governments prefer to deal with residents of their own country usually. However, I also sent copies of this open letter to the Ministers in charge of Health in Scotland and Wales, addressed to Neil Gray MSP (Scotland) and Eluned Morgan MS (Wales).

17th April 2024, I can confirm I have yet to receive a reply from Victoria Atkins or any of her staff. A paper copy was sent via recorded delivery after the ‘open letter’ had been live for 2 weeks (27th February) gathering signatures and comments, a copy was also sent to Wes Streeting MP (Shadow Health Minister) – no response received.

I have however, received responses from Scotland and Wales. See details below:

Wales

Email received 11th March 2024

Dear Sally Callow,

Thank you for your email of 2 March to Eluned Morgan MS, Minister for Health and Social Services. We have been asked to reply on this occasion.

The Minister was very grateful to receive your suggestions on services for people with ME and has passed them on to her officials who advise her on these issues.

Thank you again for taking the time and trouble to write on this matter.

Yours sincerely,

Tîm Busnes y Llywodraeth | Government Business Team

Y Grŵp Iechyd a Gwasanaethau Cymdeithasol | Health and Social Services Group
Llywodraeth Cymru | Welsh Government

Scotland

Email and pdf letter response received 2 April 2024

Dear Ms Callow,
Thank you for your email dated 2 March to the Cabinet Secretary for NHS Recovery, Health and Social Care, Mr Gray, sharing your concerns for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and highlighting the open letter currently gathering signatures from members of the Organised network.

ME/CFS sits within the remit of the neurological conditions team, and I have been asked to respond to you.

Thank you for sharing this open letter with us, which we note with interest. We recognise how distressing and debilitating severe ME/CFS can be, and we want to ensure that people can access the care and support they need to manage their condition.

In October 2021, the National Institute for Health and Care Excellence (NICE) published a guideline on the diagnosis and management of ME/CFS, which includes clear and specific guidance regarding the care of people with severe or very severe forms of the condition. The Scottish Government wants the disbelief around ME/CFS to end and have already made a visible commitment to supporting the key changes within the NICE guideline. In July 2022 the National Clinical Director wrote to health boards to raise awareness of the guidance and its implementation, and to highlight key changes in recommended practice.

The Scottish Government have clear standards regarding the quality of care that everyone should be entitled to across our health and social care services: https://www.gov.scot/publications/health-social-care-standards-support-life/pages/1/. Standard 4.11 sets out a clear expectation that a person should experience high quality care and support based on relevant evidence, guidance and best practice.

Regarding staff training and education, as per Standard 3 of Health Improvement Scotland’s (HIS) General Standards for Neurological Care and Support, the Scottish Government expect health and social care services to train and educate their staff, aligned through professional frameworks where appropriate, to develop and maintain the skill and knowledge appropriate to their role.

We are supportive of patient involvement and expect organisations to ensure that people living with a neurological condition are fully informed and supported at all stages, as per Standard 7 of HIS’ General Standards.

Thank you again for contacting us, and I hope this response has been helpful.

Yours sincerely

XX
HPQ : Clinical Priorities

As you can see, I/we haven’t got very far. Nothing to see here’, ‘We’re already dealing with it’.

UPDATE – After receiving the Scottish response I submitted a Freedom of Information request to see how many times M.E has been mentioned within this ‘Neurological Conditions Team’ work. I already know the answer to that for Wales (been ‘working with NHS/politicians in Wales for 2 years collaboratively) so know that what already exists is not adequate or appropriate and M.E hadn’t been mentioned in over 2 years of ‘Neurological Group’ meetings.

Kat Gower (awesome friend of Team Foggy and Stripy Lightbulb supporter who lives in Wales) and I have already discussed this with a Member of the Senedd and it will be raised within the Senedd. Due to timing, we have had to wait until after Easter and other periods of leave. When I have more to share, I will keep you updated.

SHOUT OUT FOR RESIDENTS OF WALES AND SCOTLAND – I NEED YOUR HELP!!

I am obviously going to have to push hard to show that the lived experience does not match the rhetoric or processes currently in place. Please get in touch if you have lived experience of severe M.E (patient, family, or carer) and want to help me to get a protocol for severe M.E implemented in the NHS in YOUR COUNTRY. I can’t do this without your help and would like as much patient/family/carer participation as possible.

Email – sally@mefoggydog.org.

Love Sally

and Foggy (OBVIOUSLY)

xx

ps. Posting the link again here so it can’t be missed!!  NHS protocol ‘open letter‘ please sign and share. Thank you.

The post ME Foggy Dog’s Ongoing Campaign: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E) first appeared on ME Foggy Dog.

This will be a lazy blog post as I am ‘depleted’ of energy…or at least, I have just about enough left to type this up briefly!

Watch this video

http://https://youtu.be/1Qabwxufnlg

Read these links –

Guide to the rules on APPGs

Myalgic Encephalomyelitis APPG

Register of All Party Parliamentary Groups – M.E

After reading and watching those links you are now up to speed with where I was at when I emailed the Office of the Parliamentary Commissioner for Standards with this email:

The post APPGs on Myalgic Encephalomyelitis – Where are the minutes? first appeared on ME Foggy Dog.

Foggy’s Followers on his social media platforms will have seen that I closed Foggy’s World Tour 2019/2020 yesterday due to issues brought about the COVID-19. Watch this video.

eeks ago when travel bans and cancelled holidays/business trips started to cause problems with Foggy’s globetrotting. But, as the pandemic worsened I felt it would no longer be safe for Foggy’s sitters to get out and about with Foggy and it may be the case in a few weeks that post offices are closed.

I am very disappointed and it wasn’t a decision I took lightly.

Anyone who has followed Foggy’s exploits since 2014 will know how determined I am to raise as much research funding as possible and to raise awareness at every opportunity. In the past few months, I have had a number of informal meetings with people who were all keen to help. Things like concerts, lectures, awareness events and designing new merchandise. All of which are awesome and will help Foggy’s work.

But now the pause button has been pressed.

I am desperately hoping that these talks and plans can be picked up again once COVID-19 is dealt with and life can resume as ‘normal’ (Will we ever get back to that?).

As some of you will have seen, Foggy is now in Russia. Foggy was Foggy-napped by Kate from Cure ME. I knew nothing of his extra trip until I received an email from Jack from Cure ME last night. I got this photo – I was relieved to see no ransom note! (Joking Kate, thank you). Since 2014, the one place I have dreamed of being ‘Foggy’d’ was Russia. This trip has made my own personal dream come true. Foggy will get back to Foggy HQ next week sometime, paws crossed.

I am keeping the Just Giving page open until May 8th (the date the World Tour was due to end). I will be continuing my advocacy work so if I inspire a donation or two that would be great.

COVID-19 hasn’t diminished our need for biomedical research.

Donate here

You can still buy Foggy’s merchandise via mefoggydog.org. 50% of our surplus will fund M.E research.

There is a short video in the pipeline. Thank you to Kay, Gillian and Kirsty for talking about their M.E experience on camera. My student volunteer Mason is now editing the footage and it should be available in a few weeks’ time.

As I have reassured Cure ME, Foggy will be back. I have no idea when but he will continue to fundraise for Cure ME. Team Foggy think they are awesome and have our continued support. We are very disappointed that we didn’t manage to raise more money over the past 10 months but there have been a number of other charitable schemes that have also required funding so it’s not a surprise. Our M.E community’s pot of money isn’t inexhaustible.

Remember, Cure ME’s research reach is global. They enable research around the world and do fantastic work themselves.

Thank you for your love and support, Foggy snogs to every Foggy Follower wherever you live around the world.

Love Sally

and Foggy OBVIOUSLY xxxx

The post All Good Things Come To An End first appeared on ME Foggy Dog.