The post Back to Basics: 2026 is the Year of Focus For M.E. Foggy Dog first appeared on ME Foggy Dog.

Let’s not sugarcoat it: Labour has a disability problem, and the way they’ve handled the so-called “welfare reform” bill proves it.

Despite over nine months of relentless work by charities, disability organisations, and disabled people themselves, educating MPs, sharing lived experience, and offering real solutions, the bill passed through Parliament with barely a nod to those it affects most. It wasn’t about reform. It was about cuts. Wrapped in the same tired phrase: “We have to make difficult decisions”. But here’s the thing, it wouldn’t be difficult if disabled people had been consulted from the start.

We did our job. MPs who listened to us tried to do theirs. But Labour didn’t let them. When MPs like Rachael Maskell and Neil Duncan-Jordan voted against the bill after hearing our concerns, they lost the whip. Labour said they “went against the team”. But what kind of team punishes its members for standing up for disabled people?

Now, to add another layer of democratic erosion, the bill is going through the House of Lords as a Money Bill. That means it won’t be subject to proper scrutiny. No amendments. No committee stage. No real debate. Just a rubber stamp and a countdown to Royal Assent. If this bill is so right, so fair, so necessary, why won’t they allow it to be scrutinised?

This is textbook systemic bias. If The Labour Files exposed racism and factionalism within the party, this is the disability chapter. Disabled people have been treated as “the other” throughout this process. No accountability. No transparency. No meaningful consultation. Just exclusion and punishment.

Most media outlets have parroted the government’s spin, painting MPs who opposed the bill as “rebels” trying to bring down Labour. That’s a lie. They were doing their jobs. Just like we were.

Let’s also bust the myths they’re using to justify these cuts:

• The fraud rate for PIP is 0.2%, so low the DWP calls it “statistically zero”
• The welfare bill isn’t spiralling, £1.1 billion was underpaid to claimants last year
• Benefits aren’t wasted, they’re spent in local economies, supporting businesses and communities

Despite repeated claims in the media that Labour “rebels” had successfully forced all disability-related cuts to be dropped, this is factually untrue. While some concessions were made, £2 billion in cuts are still being pushed through via changes to Universal Credit , specifically the LCWRA (Limited Capability for Work and Work-Related Activity) element. These cuts disproportionately affect chronically ill and disabled people, and are what is being passed through the House of Lords as a Money Bill on Tuesday 22nd July. The media’s framing, suggesting the rebels were trying to destabilise Labour or that the worst was over, has been not only misleading but harmful, given the scale of impact this legislation will have on vulnerable communities.

Now we move onto the narrative of “economic inactivity”. Many disabled people pay taxes, many others did before becoming ill. Benefits are not a drain, they’re a lifeline. They keep people housed, fed, and cared for. That money flows back into society. It’s not inactivity, it’s survival.

To make matters worse, we don’t even have a bias-free Disabilities Minister. Stephen Timms holds both the Social Security and Disability portfolios, a clear conflict of interest. As our petition states:

“The conflation of duties presents a clear conflict of interest.”
“Disabled people’s concerns are being undermined, sidelined and deprioritised.”

This is David vs Goliath. And when David lands a blow, when we educate MPs, shift the narrative, and expose the truth, Labour responds with retaliation, not reflection.

We need more than platitudes. We need a welfare system that listens, a party that represents all its constituents, a media that tells the truth, and a Minister for Disabled People who isn’t conflicted from the outset.

If The Labour Files taught us anything, it’s that silence enables discrimination. So let this be the beginning of the next exposé: Labour’s disability problem is real, and we’re not staying quiet about it.

Love Sally

…and Foggy (OBVIOUSLY) xx

The post Labour’s Disability Problem: Cuts, Silencing, and Systemic Bias first appeared on ME Foggy Dog.

This isn’t mere speculation, it’s happening now. In a House of Commons debate on 1 July 2025, Conservative MP Helen Whately explicitly endorsed returning to face-to-face assessments, saying:

“They support replacing remote or online assessments for claimants with face‑to‑face assessments, that simple change alone could dramatically reduce the number of new claimants.”

Meanwhile, Work and Pensions Secretary Liz Kendall confirmed the government is moving in that direction. Speaking in Parliament just days earlier, she stated:

“In talking about a two‑tier welfare system…they [Tories] ended [remote assessments], and…we are going back to face‑to‑face assessments.”

For campaigners and disabled people, these are not abstract policy shifts, they are declarations of intent that threaten the accessibility gains made during the pandemic.

For someone with Myalgic Encephalomyelitis (M.E.), a condition characterised by post-exertional malaise (PEM), a severe worsening of symptoms after even minimal exertion, and debilitating exhaustion, a virtual assessment can be the difference between participating in a crucial part of their benefit claim and triggering a week-long crash. The energy required to prepare for, travel to, and endure a face-to-face assessment can be monumental, often leading to a significant deterioration in health. This isn’t just an inconvenience; it’s a direct and detrimental impact on a person’s wellbeing. Failing to attend an assessment, even due to a severe flare-up of a health condition, can result in a claimant’s benefits being stopped, leaving them with no choice but to push through the pain and risk their health. It is, quite literally, a system that punishes people for being too ill to comply with it.

Under the Equality Act 2010, there is a legal duty to provide ‘reasonable adjustments’ for disabled people. Retaining virtual and telephone assessments is not only a reasonable adjustment; it is a necessary one. When attending an assessment in person will foreseeably cause a significant worsening of a claimant’s health, forcing them to do so is not only unreasonable but discriminatory.

Beyond the immediate health impacts, there is a deep-seated and cynical reason why many disabled people fear a return to face-to-face assessments. Anecdotally, and increasingly backed by data, is the suspicion that the very act of attending an in-person assessment is used as evidence against a claimant. The logic is as perverse as it is simplistic: if you can manage to walk into the assessment centre and down the corridor, your mobility issues can’t be that severe. This crude “informal observation” fails to capture the reality: the excruciating pain, the necessarily slow pace, the reliance on mobility aids or companions, or the subsequent crash that made that single journey possible.

Recent data backs up these concerns, according to published figures referenced in the House of Commons debates, claimants undergoing face-to-face PIP assessments are nearly a quarter less likely to receive an award compared to those assessed remotely. The difference in success rates, up to 13% lower for in-person assessments, is more than statistical background noise. It reflects a systemic bias against those whose disabilities make attendance a burden and whose efforts to comply are turned against them. The move to roll back these accessible options is part of a broader, troubling narrative that frames the benefits system through suspicion rather than support. The belief that tougher assessments will “dramatically reduce” claims, as Whately suggested, betrays a policy approach driven more by numbers than justice.

The Department for Work and Pensions (DWP) itself has acknowledged the existence and disabling effects of conditions like M.E., including the phenomenon of post-exertional malaise. It is an unforgivable contradiction to simultaneously recognise that exertion worsens symptoms, and then insist on an assessment process that demands precisely that exertion.

Let us be clear: the solution is not to abolish face-to-face assessments entirely. For some, they are the most appropriate and effective method. The key is choice. Claimants, in consultation with their medical professionals, must have the autonomy to select the assessment format that best suits their health and circumstances. The pandemic forced a long-overdue change, one that finally levelled the playing field for many disabled people. To now strip away this accessibility would be a callous and regressive step. We urge the government to listen to disabled voices, to uphold its legal obligations under the Equality Act, and to commit to a system rooted in flexibility, fairness, and trust.

Remote assessments should not be a temporary accommodation. They should be a permanent option, because accessibility is not a luxury; it’s a right.

✊ Call to Action: Demand Choice in PIP Assessments (BEFORE the 3rd reading on Wednesday please)

Disabled people should not be forced into assessments that risk their health. If you’re outraged by what you’ve read, don’t stay silent:

• Write to your MP today. Demand they support retaining remote PIP assessments as a permanent option and uphold disabled people’s rights under the Equality Act.
• Remind them: Accessibility is not optional. It is the law.
•  Share your story if you’ve been affected. Firsthand accounts are powerful, speak out on social media, tag your MP, and use the hashtag #EqualityActNow #WelfareBill

🔗 Find your MP and email them

Together, we can push back against policies that threaten hard-won accessibility and demand a welfare system that supports, not penalises, the people it serves.

Sources: House of Commons debate, 1 July 2025 (Hansard); Guardian Politics Live, 30 June–1 July 2025; Big Issue (1 July 2025); Benefits and Work, 2025

The post The Fight for Fairer Assessments: Why Remote PIP Reviews Must Remain first appeared on ME Foggy Dog.

Due to my own M.E. and other personal issues this week, I have just resorted to asking AI how disabled people in Scotland will be impacted by the proposed welfare cuts by the Government in Westminster. I had previously seen people who live in Scotland saying they won’t be impacted so I was surprised to find out today that is not the case.  Some MSPs have incorrectly said it’s not an issue that Scotland, as a devolved nation, needs to be concerned with so it’s not surprising that members of the public aren’t aware! Though to give MSPs the benefit of the doubt, the AI explanation shows how complex the benefits system is in Scotland so maybe it’s not surprising that they don’t understand the complexities!

This is what Gemini (AI) said when I asked the question – ‘Do the welfare cuts proposed by Liz Kendall impact people living in Scotland?’

The sources quoted in this AI answer can be found at the bottom of this blog. AI is not infallible so please double-check these results for yourself if this is an issue that impacts you.

Why am I posting about this? Because people living in Scotland should also be putting pressure on their politicians to either vote against these cuts OR pressure the Westminster Government into another U-turn. It’s all hands on deck at the moment and every politician counts in the fight back. I have used AI because there are strong rumours that the welfare cuts will be voted on within the next month and we need as many emails to be sent to MPs as possible ASAP (can’t wait for my M.E. to improve so I can explain this in my own words!).

Sally

The post Impact of Liz Kendall’s Proposed Welfare Cuts in Scotland first appeared on ME Foggy Dog.

Every day, due to the symptom/characteristic of unrefreshing sleep,  people living with M.E. wake up already exhausted, only to be hit by a tsunami wave of hate and disbelief online and in the media. ‘Influencers’, shock jocks, journalists, politicians, and even some healthcare professionals spread harmful rhetoric—claiming M.E. doesn’t exist, that people living with M.E. are lazy or malingerers, or that they just need to try harder.  This constant barrage of negativity is far more impactful than hurtful words; it’s a never-ending relentless attack that drains energy. Every time a person living with M.E has to defend their illness, justify their struggles, or fight for basic rights, it diverts valuable energy that could have been used for essential daily tasks. This is energy theft—taking from people who have so little to begin with.

It’s 2025, and the COVID19 pandemic is still ongoing. Yet the world pretends it’s over. For people with M.E.—many of whom are at high risk or have had their illness worsened by COVID19 infections—this denial is another knife to swerve. Mask wearers are ridiculed, air filtration is ignored, and society has ‘moved on’, leaving behind those who are still vulnerable. Every trip outside is fraught with danger, and many people with M.E. are forced into choosing isolation to avoid a further deterioration of health. This constant stress, unease, and exclusion from society drain even more energy. Society’s refusal to acknowledge reality isn’t just frustrating—it’s physically harmful to those who are most at risk.

If hate speech and pandemic denial are knives, then politicians wield the largest, sharpest blades. They have the power to push for change—to fund research, provide disability support, and make public spaces safer. But instead, they cut funding, deny benefits, and dismiss the needs and rights of the chronically ill.  By ignoring Long COVID and post-viral illnesses like M.E., politicians ensure that more people will develop these conditions without an appropriate safety net. Their policies don’t just make life harder; they actively harm the most vulnerable. Every cruel decision—every budget cut, every denial that COVID19 is airborne,  every ignored plea—steals even more energy from people who are already running on empty.

Unlike the Spoon Theory, which focuses on natural energy limits, the Knives Out Theory shows how society makes energy ‘management’ even harder. Hate, denial, and political neglect aren’t just background noise; they are deliberate assaults on the lives of people with M.E.  The knives are always out for people living with M.E. who are already struggling in a world that refuses to accommodate us. Until society stops throwing knives, the energy stolen by stigma, denial, and neglect will keep pushing people further into the shadows.

Let’s turn it into a ‘game’!

Knives Out: Energy Theft Edition

Objective:
The objective is to maintain limited energy reserves while dodging ‘knives’ that represent hateful comments (online, in print, and in person), denial, and neglect.

Setup:
Player start with a set number of  10 daily ‘energy points’. These points cannot be carried over to the next day.

Game Components:
1. **Energy Points:** Represent the player’s ability to engage in daily life tasks.
2. **Knives** Each knife represents a negative encounter  –  see possible scenarios below.

Possible scenarios:
Social media encounter:  Player sees a negative post on their news feed that drains energy. If they don’t respond to the post –  lose 2 energy points. Responding –  lose 3 energy points.
Visit to see a healthcare professional: – An unsupportive interaction that affects energy levels due to induced stress – lose 4 energy points (long term impact of stress, negativity and stigma).
Going out in public to a non-health related setting: Facing negative societal interactions (COVID19 or disability) eg. tutting, comments, eyerolls, deliberate coughing – lose 2 energy points for each occurrence.

End of the Game:
The game ends when the player runs out of energy points. Please mark the end of YOUR game by posting #KnivesOutImOut on social media and how many instances of negativity you encountered that day.

If a player finishes the day with some energy left, they are considered to have successfully dodged the knives!(How did you do that?! Well done!) Please remember knives are entirely separate to energy management through pacing. This is energy lost entirely due to negativity of the types mentioned in this blog.

I for one will now be responding to any hateful posts or comments from the media and politicians by posting – ‘Thank you for playing ‘Knives Out: Energy Theft Edition’. Maybe it will start to open a few eyes to the physical impact of hateful rhetoric on people living with M.E.

This topic was inspired by an X post by Kelly (@broadwaybabyto) earlier today in which she wrote-

We need a revised “Spoon Theory” that takes into account being chronically ill amidst 2025 chaos The moment you check your news feed you’re out of spoons Most articles are like knives being flung into your cutlery drawer against your will Protecting baseline is hard right now’.

PS. This has given me an idea for a board game, just in case I go forward with this idea in future I am claiming copyright NOW!. ME Foggy Dog 6th February 2025.

PPS. ‘M.E.’ is inclusive of all people who meet the diagnostic criteria for M.E whether diagnosed (or not) or living under the umbrella term of Long COVID.

The post ‘Knives Out Theory’: How Hate, COVID19 Denial, and Neglect Drain the Energy of People with M.E. first appeared on ME Foggy Dog.

I was unfair to Andrew Gwynne MP during Friday’s Instagram/Facebook Live and that is why I am writing this blog. I’ll admit that I skim read his letter response, received on 4th November 2024, as I am so used to getting generic replies it went in one eye and out the other. I only registered the generic paragraphs that I have received many times before from previous Health ministers. These generic responses are in part due to the correspondence team who receive many emails/letters and have to respond using templates due to time constraints. I get that. It doesn’t make it any less frustrating when I have poured my heart and soul (and valuable energy) into a campaign/project only to receive a reply that feels like a fob off.

Tip to the correspondence team – You don’t need to tell an advocate of over 10 years and manager of two social enterprises which work for the M.E./C.F.S community about the M.E./C.F.S. Delivery Plan or Decode M.E. Particularly when I have contributed to or promoted that work in the past.  You don’t need to educate me (or many in our community).

Here is the response received from Andrew Gwynne MP’s team. The original correspondence was sent by my MP on my behalf as a constituent and the manager of social enterprises in his constituency.-

Stephen Morgan MP
By email to: ******@parliament.uk

4 November 2024

Dear Stephen,
Thank you for your correspondence of 7 October to the Secretary of State on behalf of your constituent Ms Sally Callow about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

I was sorry to read of Ms Callow’s health difficulties, and I appreciate her concerns and suggestions.

I would first like to recognise the important work that Ms Callow has done to date and thank her for her ongoing interest in, and contribution to, the response to ME/CFS. I would also like to take this opportunity to assure you that the Government fully understands how debilitating ME/CFS can be and is committed to improving the lives of people living with the condition. I have been having a number of meetings in my first weeks as minister to look much more closely at ME/CFS.

We want a society where everyone, including those with one or more long-term conditions, and their families and carers, receives high-quality, compassionate care with continuity. We will change the NHS so that it becomes not just a ‘sickness service’, but able to prevent ill health in the first place. This will help us to be better prepared for the change in the nature of disease and allow services to focus more on the management of chronic, long-term conditions, including ME/CFS.

I am grateful to Ms Callow for forwarding the NHS protocol campaign document for ME/CFS and the ME Friendly Hospital Charter, which I have passed to Departmental (Grateful it was passed along but I had already shared the document with my connections within this team – no reply received yet) officials leading on ME/CFS. The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This
course involves important feedback and input from patients with lived experience. (Surely a quick online search by admin staff would have shown I created/manage my own online training company (social enterprise) over 6 years ago?! Yes, I am aware of my new competition! I know more about M.E./C.F.S education than most people – been there, DO that)

People with ME/CFS deserve the most appropriate treatment and should have confidence that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services and a better understanding of the condition has the potential to make a huge difference to the quality of life of people with ME/CFS.

Regarding specialised care pathways, ME/CFS services are commissioned by integrated care boards (ICBs) to meet the needs of their local populations. ICBs are not reviewed or assessed by NHS England centrally. It is the duty of clinicians to keep themselves apprised of best practice, in particular around guidance issued by the National Institute for Health and Care Excellence (I know this – it’s why I am going direct to ICBs and other regional healthcare providers).

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study can be found at www.decodeme.org.uk. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS. These applications are subject to peer review and judged in open
competition, with awards made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

In addition, I am committed – it has been a priority since my appointment – to publishing the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are finalising the response, which should come to me very soon. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish this coming winter. We recognise that there is more to be done, but I hope this letter assures you and Ms Callow that we are taking the matter seriously.
Yours sincerely,

ANDREW GWYNNE

I am grateful that my efforts have been acknowledged, when M.E. work feels like a relentless slog it can be a comfort to know I am not completely unseen by ‘the powers that be’. Quiet recognition of hard work is a great motivator when I feel like giving up (that brick wall often feels insurmountable).

At the end of the day, it is still just words and we are still waiting for any positive action to move our community forwards. However, as I stated at the start of this blog, I unfairly criticised Mr Gwynne last week and for that I apologise.

Onwards and upwards!

The post Rethinking My Response To Andrew Gwynne MP During Last Week’s Instagram / Facebook Live first appeared on ME Foggy Dog.

I have had non-stop health rubbish going on since August, this blog is specifically about the past month! Pain, pain, and more pain!

As people living with M.E. know, pain is exhausting. With that in mind, I typed basic info into Chat GPT and it has created a case study that explains everything that has been going on for the past month. I’ve been posting on social media about it quite a bit and I know many of you have questions and/or are going through similar. I just don’t have the energy to go over (and over and over) this claptrap. I’m sharing because I think transparency is key to effective advocacy. This blog identifies a problem with GP services right now and how it impacts individual patients.  I don’t just represent people with M.E with my advocacy, I go through this nonsense myself as a person with multiple chronic illnesses and a complicated medical history!

Case Study: Managing Complex Pain in a 48-Year-Old Woman with Multiple Medical Conditions

Patient Profile
A 48-year-old woman with a history of multiple chronic conditions, including Myalgic Encephalomyelitis (M.E.), Fibromyalgia, Hypermobility Syndrome, and Osgood-Schlatter Disease and Chondromalacia Patellae.

Medical Background
The patient had previously managed her Fibromyalgia symptoms with Gabapentin (recommended by Rheumatology and prescribed by GP), but after experiencing a reduction in pain a year ago, she successfully weaned herself off the medication. At that time, her pain was tolerable, and she felt that discontinuing the drug was appropriate. Recently, however, her Fibromyalgia symptoms worsened, prompting her to contact her GP for a repeat prescription of Gabapentin. Unfortunately, she discovered that Gabapentin was no longer listed in her repeat prescriptions, and she was instead referred for physiotherapy.

Acute Pain Episode
Approximately a month after her contact with the GP, the patient experienced a new pain episode when she trapped a nerve in her back on the left side. Due to an altered gait, she developed significant pain in the opposite knee the following day. This pain was intense, and she resorted to paracetamol and ibuprofen, as well as heat and ice packs for relief. After the weekend, when the pain persisted, the patient used the GP’s e-consult system to request stronger pain relief.

Walk-In Centre Visit
The GP surgery advised her to visit the local walk-in centre for further investigation. The patient was diagnosed with tendonitis and was instructed to return to her GP for stronger pain relief. The GP practice subsequently prescribed Co-Codamol for pain management.

Worsening Symptoms and Complications
Five days later, the knee pain persisted, and a painful lump the size of a golf ball appeared suddenly on the outer upper side of her knee. The lump was compressing a nerve, leading to excruciating pain radiating down her lower leg, knee, and thigh. Any movement was agonising, and the patient was unable to move. She contacted friends with medical knowledge who suspected bursitis, and a quick internet search suggested ice and anti-inflammatory medication as treatments. However, these measures did not alleviate the intense neuropathic pain.

In desperation, the patient remembered that she had Gabapentin tablets prescribed for her dog’s spinal issues. She took two tablets, and within an hour, her pain was under control. Having these tablets available allowed her to manage the pain over the weekend.

Request for Gabapentin Prescription
On Monday, the patient contacted her GP surgery once more to request a repeat prescription for Gabapentin. She spent 15 minutes trying to reach a receptionist, and upon answering, she was asked if she was registered with the Anima system. After confirming, she was told that a query would be submitted on her behalf, and someone would call her later that day.

Realising she hadn’t had an opportunity to explain the issue, the patient logged into the Anima system herself and submitted an e-consult form. Three hours later, she was asked to submit photos of both knees for comparison. After doing so, she received a message stating that Amitriptyline would be prescribed and that she should “trial” it.

Response from GP Surgery
The patient was concerned about the proposed prescription of Amitriptyline, as she had historically experienced sensitivities to this medication. She sent a follow-up query to the practice, explaining that Gabapentin had been prescribed to her in the past by both Rheumatology and her GP and had been effective in managing her neuropathic pain. She also noted that her current condition, including her Fibromyalgia and knee/nerve issue, would benefit from Gabapentin.

Within ten minutes, the surgery responded, stating that a telehealth appointment would be scheduled in 3-4 weeks. In the meantime, the patient no longer had access to Gabapentin (since the medication had been for her dog and there weren’t many left), leaving her without any medication for her neuropathic pain.

Key Issues and Challenges

• The patient’s difficulty in obtaining appropriate pain management was exacerbated by the GP practice’s refusal to prescribe Gabapentin despite it being part of her previous treatment regimen.
• The delay in addressing the patient’s pain was compounded by a lack of communication and follow-through from the GP practice.
• The alternative medication, Amitriptyline, was not a viable option for the patient due to her known sensitivities to the drug.
• Despite being actively involved in her healthcare and attempting to communicate her needs, the patient faced significant barriers in receiving appropriate and timely pain relief.

Conclusion
This case highlights the complexities of managing chronic pain in patients with multiple underlying health conditions. It also underscores the importance of clear communication and continuity of care between healthcare providers and patients. The patient’s experience reveals the challenges faced when navigating healthcare systems, especially when medications are withdrawn or altered without adequate alternatives or explanations. Furthermore, the case demonstrates the need for personalised treatment plans that take into account the patient’s medical history, previous treatments, and sensitivities.

**Maggie’s drugs** To confirm, Maggie’s Gabapentin use is approved by her vet. They are exactly the same drug as humans take. Fortunately, she had a strip of tablets left (reorder done today), she has enough tablets to last until her new batch are ready for collection (I have not deprived her of medication/caused her pain). Taking her medication will not become a habit of mine! But desperate times call for desperate measures! Sooooo much pain!

My Hypermobility Syndrome worsened at the exact same time that my Fibro flared – both were mentioned in e-consult submissions to the GP. I believe both were impacted by the COVID19 infection I had in August. My left shoulder has never been particularly impacted by Hypermobility Syndrome (my right shoulder has always been bad) but now feels very loose and painful. The Physio concentrated on this rather than the Fibro pain when I saw him last week – we are ‘strengthening’ the muscles around this area.

I feel ‘stuck’. I have no way of getting hold of a drug that I know works well for me right at a time when I need it the most. My Fibro pain is mostly impacting my hands, arms, upper back and neck and is becoming unbearable without appropriate medications. I’m at that point of being sick of being in unnecessary amounts of pain and am feeling sorry for myself. If this is also where you are right now, I see you, I ‘get it’.

Love Sally

and Foggy (OBVIOUSLY) xx

The post Pain and the Battle For Medication first appeared on ME Foggy Dog.

As many of you are aware, the Assisted Dying Bill is being introduced to Westminster on 17th October 2024 and will be debated/voted on later in the year. This is a contentious issue that many people have very strong and emotive opinions about.

To be clear – I am not against euthanasia when a person has taken the difficult decision to end their own life. Dignitas currently offers a way out for the minority who feel this is the path for them. Assisted suicide via Dignitas is not an easy process, the person goes through, as far as I am aware, rigorous screening to make sure there is no coercion involved. This is not an advert for Dignitas, I am simply sharing information to make it clear what their ‘screening’ involves.

Extract from brochure (link above)

In accordance with this purpose the activities of DIGNITAS comprise, amongst others:

• Counselling in regard to all end-of-life issues
• Cooperation with physicians, clinics and other associations
• Carrying out Patient’s Instructions and patient’s rights with regard to doctors and clinics
• Suicide- and suicide-attempt prevention
• Support in conflicts with the authorities, with the management of nursing homes and with doctors not chosen by the patient
• Further legal developments in regard to questions about “the last issues”
• Accompaniment of dying patients and assistance with a self-determined end of life.

I feel much of the current debate around assisted suicide will lead to chronically ill and disabled people being at a higher risk of coercion (family/doctors) and these groups need to be considered EXTENSIVELY within this debate.

I know there have been members of our M.E. community who have taken the difficult decision to end their life in Switzerland and my heart breaks that they felt they couldn’t continue living due to the obscene lack of treatments, care, or cures for M.E.  It is usually societal, healthcare, and Government failures that cause people with M.E. to opt for assisted suicide rather than having a terminal illness.  While these societal, healthcare, and Government failures persist, I think it is immoral to have the Assisted Dying bill on the agenda. Why is there not an Assisted Living bill up for debate? Why is the Government in Westminster not concentrating on improving social care/palliative care/funding research into neglected diseases?

As a resident in England, I wrote to my own MP (Stephen Morgan MP) as myself and ME Foggy Dog/Stripy Lightbulb CIC with my concerns which I hope he considers before voting during the debate.

SUBJECT LINE – Please vote against the assisted dying bill

I am writing to express my deep concerns regarding the Assisted Dying Bill currently being considered in Parliament.

While I believe in the importance of personal autonomy and choice, I fear that this legislation could mark the beginning of a very slippery slope. Without strict regulations and robust safeguards, we risk normalising assisted suicide in a way that could endanger vulnerable populations, including those living with chronic illnesses like M.E.

The experience in Canada with their Medical Assistance in Dying (MAID) program raises significant concerns. Reports indicate that individuals with disabilities and chronic conditions often feel pressure to consider assisted dying as a viable option due to a lack of adequate support and resources. We must ensure that any decisions surrounding life and death are made free from coercion and reflect true autonomy. With the recent backdrop of the COVID19 inquiry’s recent findings on DNRs issued inappropriately to chronically sick and disabled people at the height of the ongoing pandemic, it is right to approach this subject with extreme caution – not hastily at the request of a terminally ill celebrity.

I strongly advocate for a comprehensive government and public review of this issue, aimed at developing ground-breaking solutions that prioritise improved healthcare, mental health support, and palliative care. By focusing on enhancing the quality of life for all, we can foster a society that truly respects individual choice without compromising the safety and dignity of our most vulnerable citizens.

Thank you for considering my perspective. I urge you to vote against the Assisted Dying Bill to protect the rights and well-being of those with disabilities and chronic illnesses.

The post Assisted Dying Bill first appeared on ME Foggy Dog.

Please sign this open letter to the Paralympic Association here – Open letter

ME Foggy Dog raised also the issue of a lack of a caveat during the Paralympics in 2021 – Read it here

The post Open Letter to the British Paralympic Association About the Need for a Caveat first appeared on ME Foggy Dog.

When Foggy met Jennie

I first ‘met’ Jennie Jacques a few months ago when she interviewed me to launch her YouTube channel and to talk about my NHS protocol campaign and M.E advocacy. Please follow Jennie’s YouTube channel.

The Pawfect Bake Off

This AWESOME campaign launched this week – thank you to Jennie Jacques’ Bake 4 MECFS for holding this ‘Bake Off’ to fundraise for us. As it states on the website-

The Pawfect Off is to celebrate Sally Callow’s 10 year anniversary with the famous

ME Foggy Dog – a rather handsome globetrotting adventurer raising funds for CURE M.E!’

I LOVE this idea!! It is the perfect theme for ME Foggy Dog, as you all know Foggy was a soft toy replica of my own in real life dog Patch in 2014 and Maggie is my current fur baby. I LOVE dogs! (real life and in my imagination!)

See photos of the furries in my life, I can hear the ‘ahhhhhhhhh’s already!

Back to the Bake Off, please do take part if you are able to. It’ll be great fun, raise oodles of cash for Cure ME, and I’m on the judging panel! (Glad Foggy isn’t a judge – I’m sure he could be bribed with Wotsits!). Everything you need to know can be found on the Bake4MECFS website.

Watch this fun Bake 4 MECFS Instagram video – https://www.instagram.com/reel/C833e6Zs3xq/

Not long to go now and it’s the perfect way to end on a high note!

Love Sally

and Foggy (OBVIOUSLY)

xx

ps. Don’t forget to donate to Foggy’s fund for Cure ME – we need research funding. £1102 has been raised since July 2023. Thank you to all who have donated and supported this fundraiser already.

Donate here

The post The Pawfect Bake Off! first appeared on ME Foggy Dog.