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.

The Shake It UP next step is here! I ‘went live’ on YouTube earlier. You can watch the recording below (don’t forget to subscribe too so you don’t miss future content!).

As I explained during the ‘live’, my own M.E. is currently causing me to not be able to function as well as I usually do. With that in mind, because the 11th April deadline is looming, I am simply going to provide the basic info you need to be able to participate in this campaign ‘push’.

This is the text from the document I read through in the video. It contains info and suggestions that you might find useful.

Social Media Campaign

Here’s a social media campaign plan to pressure the UK Government to create a reporting system for harms from non-pharmaceutical “treatments,” with a focus on the 11th April deadline:

Campaign Goal:

• To generate significant public awareness and pressure on the UK Government to establish a formal reporting system for adverse effects from non-pharmaceutical ‘treatments’.
• To ensure the government addresses this issue before the 11th April deadline.

Campaign Elements:

• Hashtag: Please make sure you use these #s on related social media posts with #ShakeItUp
  • #ReportNonPharmaHarms
  • #PatientSafetyUK
• Key Messages: Feel free to copy and paste these sentences into your posts
  • People experiencing harm from non-pharmaceutical ‘treatments’ need a way to report it
  • Lack of reporting means a lack of data, and that puts people at risk.
  • The UK government must act now to create a reporting system from non pharmaceutical harms
  • We need transparency and accountability in all forms of healthcare.
  • 11th April deadline: the UK government must respond!

• Visuals: A few suggestions – Unfortunately, this time I don’t have the energy required to make these for the community to use. You can also download the Shake It UP image and use it on your posts if necessary (at the bottom of this blog).
  • Create shareable images with key statistics or impactful quotes.
  • Post photographs of yourself/loved one (consent needed) and explain how you/they have been harmed.
  • A countdown graphic showing the time remaining until the 11th of April.
  • A graphic that shows a broken medical symbol, or a question mark inside of a medical symbol, to visually represent the issue.
• Social Media Platforms:
  • X (formerly Twitter): For quick updates, engaging with politicians (Wes Streeting MP and possibly your own MP too)
  • Facebook: For sharing in-depth stories, creating community groups, and reaching a wider audience. You can tag politicians on FB too.
  • Instagram: For visual content, sharing personal stories, and utilizing relevant hashtags. Tag, tag, tag!
• Campaign Actions: A few suggestions of how you can help to reach a wider audience
  • Share personal stories: Encourage individuals who have experienced harm to share their stories (anonymously if preferred).
  • Tag relevant government accounts: Consistently tag the Department of Health and Social Care and relevant ministers.
  • Organize virtual events: Host online discussions with experts and individuals affected by harm.
  • Media outreach: Send press releases to national and local media outlets.
  • Countdown posts: Daily posts counting down to the 11th April deadline, emphasising the urgency.
• Timeline:
  • Immediate launch: Begin the campaign immediately to maximise impact.
  • Daily activity: Consistent posting across all platforms.
  • Final push: Intensify activity in the days leading up to the 11th April deadline.

Important Considerations:

• Accuracy: Ensure all information shared is accurate and evidence-based.
• Sensitivity: Handle personal stories with sensitivity and respect.
• Inclusivity: Ensure the campaign is inclusive and represents the diverse range of people affected.

By implementing these strategies, the campaign can effectively raise awareness and put pressure on the UK Government to take action.

Let’s do this!

You can download this image:

The post Shake It UP, Next Steps and How To Get Involved: Social Media Campaign first appeared on ME Foggy Dog.

As many of you already know, M.E. Foggy Dog had been campaigning since November 2021 with Shake It UP demanding the creation of a reporting system to report adverse events from non-pharmaceutical ‘treatments. The associated petition, which had 9011 signatures and was accompanied by many hundreds of personal anecdotes of harm, was closed in September 2024 due to us having reached a dead end. I stated at the time that I would be pursuing a ‘Plan B’ as and when an opportunity arose.

Yesterday, it was announced that Amanda Pritchard has resigned from her position as CEO of NHS England.

I believe the change in NHS senior management and the rumoured change of direction now being sought by Secretary of State for Health and Social Care, Wes Streeting MP, could be the ‘opportunity’ we’ve been waiting for.

You can see the work that has already been done on this campaign via this link.

The next phase has now started.

The following was sent in the post yesterday 25th February 2025 –

Formal Complaint: Negligence in Patient Safety Regarding Non-Pharmaceutical Treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Dear Secretary of State,

This constitutes a formal complaint regarding the ongoing failure to implement a robust reporting system for adverse events related to non-pharmaceutical treatments (NPTs) offered to patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) within the National Health Service (NHS). This lack of a reporting mechanism represents a serious and unacceptable negligence in patient safety.

For over three years, we have been campaigning for the establishment of such a system. Our efforts, including a petition signed by over 9,000 individuals, have been consistently disregarded. We believe this inaction demonstrates a deliberate attempt to avoid collecting data on potential harms arising from these treatments, thereby preventing proper scrutiny and accountability.

Specifically, we are deeply concerned about the lack of reporting mechanisms for adverse events associated with commonly prescribed NPTs for ME/CFS, such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT). The continued failure to establish a reporting mechanism is a violation of fundamental patient safety principles. The NHS has reporting systems for pharmaceutical interventions and medical procedures, yet no comparable system exists for therapies that have been widely documented as causing harm to ME/CFS patients. This discrepancy is unacceptable and discriminatory.

Furthermore, the 2021 NICE guideline update explicitly recommended against the use of GET due to evidence of harm. However, despite this, many NHS services continue to offer GET (in many forms) and CBT in ways that contradict the updated guidance. Without a formal reporting structure, patients are left without recourse when they suffer worsening health due to inappropriate treatment recommendations.

The absence of a reporting system contravenes fundamental principles of patient safety and clinical governance. It prevents healthcare professionals from learning from adverse events, impedes research into the long-term effects of these treatments, and denies patients the right to informed consent based on a comprehensive understanding of potential risks. Furthermore, it undermines the ability of patients and clinicians to make shared decisions about care based on the best available evidence.

We believe this failure to act is a clear breach of the NHS’s duty of care to patients with ME/CFS. We request an immediate and thorough investigation into this matter, including:

• The reasons for the continued failure to implement a reporting system for adverse events related to NPTs for ME/CFS.
• The number of patients who have potentially experienced harm from these treatments.
• The steps that will be taken to establish a robust and independent reporting system without further delay.
• How accountability will be ensured for those responsible for this negligence.

We expect a formal response to this complaint within 6 weeks outlining the actions that will be taken to address our concerns. We are prepared to escalate this matter to the Parliamentary and Health Service Ombudsman and other relevant authorities if a satisfactory response is not received.

We urge you to treat this matter with the seriousness it deserves and take immediate action to protect the safety of patients with ME/CFS.

Sincerely,

Sally Callow, Manager –  ME Foggy Dog

Week ending 11th April 2025

As you have just read, the Department for Health and Social Care/West Streeting MP/Ashley Dalton MP have been given 6 weeks to respond/take action. This means they have until Friday 11th April 2025. Then we go to the next step, as detailed in the letter.

In the coming days, I will be creating a wider campaign for the community to get involved in to apply pressure over the next 6 weeks.

Stay tuned!

ps. I could do with a hand with creating content and admin for this campaign so please let me know if you are able to give me an hour or two of your energy per week. Get in touch! 

The post Shake It UP – Formal Complaint re Negligence in Patient Safety 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.

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.

Subject: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E)

To Secretary of State for Health and Social Care Victoria Atkins MP

I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to address the unique needs of this patient population.

M.E., also sometimes known as Chronic Fatigue Syndrome (CFS), is a debilitating complex neuro-immune condition characterized by post-exertional malaise, extreme neuro-exhaustion, cognitive impairment, and other symptoms that significantly impact daily functioning. For those with severe M.E., the consequences are particularly devastating, often rendering them bedbound and reliant on extensive support for even basic activities.

Despite the severity and prevalence of this illness, there is a glaring absence of specific protocols within the NHS to cater to the complex needs of individuals with severe M.E. Consequently, many patients are left without adequate medical attention, facing significant barriers to accessing appropriate care and support. M.E can sometimes be fatal and patients have died from malnutrition as a direct result of neglect, stigma, and a poor knowledgebase in NHS hospitals. In 2024, medical professionals who understand the complex nature of the disease and who contemplate ‘off label’ treatments are finding themselves at risk of referral to the General Medical Council due to the lack of a NHS protocol.

It is imperative that the NHS recognises the urgent need to address this gap in healthcare provision and take concrete steps towards the creation of a comprehensive protocol tailored specifically to support individuals with severe M.E. This protocol should encompass the following key elements:
1. Specialised Care Pathways: Develop clear and standardized care pathways for individuals with severe M.E., ensuring access to specialist consultations, symptom management, palliative-style care, and home-based support services.
2. Education and Training: Provide comprehensive training for healthcare professionals to increase awareness and understanding of severe M.E., enabling them to deliver appropriate and empathetic care to patients.
3. Research and Innovation: Allocate resources for research into the underlying mechanisms of M.E. and the development of effective treatments, with a focus on addressing the needs of individuals with severe forms of the illness.
4. Patient Involvement: Ensure meaningful involvement of individuals with severe M.E., as well as their caregivers and advocacy groups, in the design and implementation of the protocol to ensure it reflects their needs and preferences.

The creation of an NHS protocol for severe M.E. is not just a matter of healthcare policy; it is a moral imperative to uphold the principles of equity, compassion, and dignity in healthcare delivery. Failure to address this issue perpetuates the suffering and marginalization of a vulnerable patient population, denying them their fundamental right to access quality healthcare.

Therefore, I urge you to prioritize the development and implementation of a dedicated NHS protocol for severe M.E. as a matter of urgency. By taking decisive action, the NHS can demonstrate its commitment to meeting the needs of all patients, regardless of the severity or complexity of their illness.

Thank you for your attention to this critical issue.

I look forward to your prompt response and action on this matter.

For Media Inquiries, Please Contact: Sally Callow, Founder- ME Foggy Dog

Contact – sally@mefoggydog.org

About ME Foggy Dog

We are committed to improving the lives of people living with Myalgic Encephalomyelitis and campaign for better healthcare outcomes for affected individuals. Visit mefoggydog.org to learn more about our work and how you can get involved.

[End of Press Release]

This letter is also open to the public to sign and support. You can sign your name here 

The post Press Release – Open Letter to Secretary of State for Health and Social Care Victoria Atkins MP first appeared on ME Foggy Dog.

There is the argument that previous role-holders didn’t do a very good job, that disabled people’s quality of life, finances, opportunities and health inequalities have never been worse and so ‘what have they ever done for us’ has been said repeatedly online in the past 6 days, but to have no representation at all is as low as it can get in terms of an ability to have a voice in Parliament.

It means that Vicky Foxcroft MP is doing her job with her hands tied behind her back (which is where the rumour of ‘phasing out’ comes from) as she has no ‘opposing Minister’ to hold to account as the Shadow Minister. How long before Vicky is told her Shadow role is being dissolved? I hope that doesn’t happen as she has been incredibly helpful and supportive with my M.E work over the past 3 years and there is clearly a need for the work she does.

Here is the Gov.uk webpage that outlines the responsibilities of this role.

Here are just a selection of questions tabled by Vicky Foxcroft MP in the past month to give an idea of the range of issues dealt with within this role

To ask the Chancellor of the Exchequer, whether he has made an assessment of the potential impact of the Autumn Statement 2023 on the finances of people with complex disabilities.

To ask the Secretary of State for Work and Pensions, how much his Department has spent on the Health Transformation Programme. (Raised on my behalf – relates to a Stripy Lightbulb CIC project)

To ask the Secretary of State for Work and Pensions, what steps his Department plans to take to support people with (a) arthritis and (b) musculoskeletal conditions who have been out of work for longer than six months into work.

To ask the Secretary of State for Work and Pensions, what assessment he has made of the potential impact of the proposed changes to the Work Capability Assessment on disabled people’s finances.

To ask the Secretary of State for Work and Pensions, how many British sign language users accessed Jobcentres in the most recent period for which data is available.

To ask the Secretary of State for Work and Pensions, what assessment he has made of the impact of phone-based applications for Personal Independence Payment on people with energy-impaired illnesses. (Vicky Foxcroft asked this question on my behalf with a Stripy Lightbulb CIC-related project)

To ask the Secretary of State for Health and Social Care, how many calls were responded to by mental health ambulances in London in each of the last 12 months for which data is available.

I would ask anyone reading this blog to support Disability Rights UK’s demands to have this Minister for Disabled People role refilled – information here

I have no idea who would fill this vacant position but, in a perfect world, it should be someone with either a lived experience of having a disability OR supporting/caring for a disabled person. I’m dreaming though aren’t I? Particularly given this role is housed within the Department for Work and Pensions remit. Cynic….me? Absolutely.

Foggy tweeted Prime Minister Rishi Sunak this week and said he would like to apply for the position. As he wrote, he ‘gets’ disability and is AWESOME. If you support Foggy in his quest please tweet your support using #Foggy4MP

Paws crossed this vacancy is filled soon, disabled people and related issues have already been neglected for 6 days – Team Foggy think this is completely unacceptable.

Love from Sally

and Foggy OBVIOUSLY xx

ps. Foggy is now with his next Foggy-Sitter, they will be heading off on adventures next week. Exciting times ahead – Transatlantic flights and a Mediterranean cruise within the next 3 weeks!

Don’t forget to donate – Thank you and Foggy snogs xx

The post Why Do We Need A Minister For Disabled People? first appeared on ME Foggy Dog.

This reporting system is still necessary.

Dear Secretary of State, 

 

I am writing to you again regarding my campaign for a reporting system to report harms from non-pharmaceutical ‘treatments’. I have previously been told by your Department multiple times that the need for this system no longer exists due to the NICE guideline.

 

However, I have myself provided proof that recommendations to ‘increase activity’ and participate in CBT are continuing post-guideline publication.

 

To reinforce what I have been telling your department for the past 18 months, last week The Times wrote this article the sub-heading of which states ‘National treatment guidelines published two years ago are still not widely implemented, says charity’. The charity in question was Action for M.E who have just published this research.

 

As you can see, non-adherence to the NICE guideline is rife.

 

This matters because ‘increased activity’ and CBT as ‘treatments’ harms ME/CFS patients. COVID19 has triggered 100s of 1000s of new cases of ME/CFS. I estimate there to be around 1 million cases of ME/CFS in the UK now (half of Long COVID meet ME/CFS diagnostic criteria). When these treatments remain the ‘go to’ treatments for the NHS, that is a lot of people who will be deteriorating as a direct result of non-pharmaceutical ‘treatments’. These are the people you want to get back to work, not becoming permanently disabled due to non-adherence to the NICE guideline.

 

I recently attended a UK third sector meeting, in which a representative of NHS England stated that it would be ‘impossible to implement NICE guidelines due to the pushback’ (from RCGP etc) – for a range of diseases including ME/CFS. If this is the case, we need a system to report harms if the Government has no intention of implementing the guideline.

 

I look forward to hearing from you.

I suggested the the NHS England representative that if there was no intention to implement the NICE guideline then they could, as alternatives, push forward with education or tackle the stigma that is rampant within the NHS about our disease. I could see nodding heads in this online meeting, ours is not the only community facing this problem.

My thoughts on the subject –

Please engage with Shake It Up if you haven’t done so already, there is an international petition and wider campaign for UK residents.

Check it out here! 

The post Shake It Up: Email to Steve Barclay MP – Secretary of State for Health and Social Care first appeared on ME Foggy Dog.

I don’t know about you but, for me, 2021 flew by!

I’ve not kept track of what month we are in throughout the entire year! It’s all been very same-y and seasons have all blended from one to the other. I haven’t had the usual Foggy ‘milestones’ to judge where I’m at. This is mostly due to shielding 98% of the time, my life has been devoid of social cues – other than those seen on social media or in private Whatsapp messages.

2021 has been a pretty rubbish year all-round but I’m going to squeeze my memory bank to come up with some positives.

My first post of 2021 (1st January 2021 at 08.15)

Did our dreams come true?

Here are the highlights of 2021 for Team Foggy.

Awareness

‘What is M.E? (January 2021)

Watch   What is M.E?

Video recorded during lockdown, completely a DIY effort and from a very dodgy camera angle but….with the help of a ‘video-editor’ this video was produced. A combination of worsening illness and software no longer being available = my brain can’t cope with complicated video editing like it used to in 2014-2018! Long term Foggy Followers will know that my content has changed over recent years….in fact, since my Windows 7 died. RIP. You are missed!

Press Nonsense

There has been a LOT of reactive negative, but necessary, stuff that has had to be addressed over the past year. PG being on BBC Breakfast and being unchallenged after erroneous claims were made, inaccurate and downright offensive rubbish has been printed in the UK press ALL YEAR. My advocacy has reflected that. I started an ‘Online Journalist Resource’ but stopped my efforts when it became clear that other orgs were doing the same. As with all people with M.E, I have such limited energy, I don’t waste it on duplication. It’s wasted effort and energy.

Legal Fund

Then came the ‘Legal Fund’.

Blog post – M.E/C.F.S Patients’ Legal Fund. (Explainer video) I thought this was such a good idea but I found many M.E patients couldn’t understand what the money would be used for. I did as much as I could to increase understanding but this was another idea, start of a campaign, that came to nothing. Thank you to the MANY advocates and pwME that privately messaged me with support during these stressful weeks. There have been a few instances since where this legal fund would have been a great asset for our community to have but, that idea has now been and gone.

Fundraising

Watch this – How we fundraise  THIS is the case whether Team Foggy are actively campaigning or not. You can donate all-year round via Paypal – link/button is on our home page –  mefoggydog.org .  Cure ME are currently requesting donations, they need funding. If you donate via Paypal through ME Foggy Dog please make it clear it is for Cure ME and we will allocate accordingly.

Team Foggy’s AWESOME friend Ryn and her husband John displayed fantastic entrepreneurial spirit during the summer and raised £488 to be split 50/50 between   Cure ME and ME Foggy Dog. They had a flower stall outside their home for months and neighbours, family, and friends donated plants, pots, and other items to sell. Fantastic community spirit!! Ryn is already planning on repeating this mini-enterprise next year. All money raised for ME Foggy Dog will be put towards our future fundraising events for Cure ME.  Ryn and John’s ‘flower stall’ fundraising featured in a LSHTM blog post! ME Fundraiser  – Ryn Stevens.

Long Covid and M.E/C.F.S overlap

This is something that has been making my head hurt for over 18 months.  Watch – My recommendations for managing Long Covid. It’s been tough, HARD work trying to get local/central Government to listen. They are all stuck on the ‘it’s a completely new phenomenon’. Uh….nope. Extra frustrating given that we KNOW that many Long Covid cases are being diagnosed as M.E/C.F.S.

M.E Awareness Week 2021

Ha! The plan was to ‘cut back’ on my activities during our awareness week. I raise awareness all-year round so any increase wipes me out. I ended up doing more work than ever within a shorter period of time. As I said at the time, M.E patients were not my target audience (though I was grateful to all who tuned in) and so the length of the ‘talk’ was appropriate for ‘healthy’ people not M.E patients. As I’ve said a million times since 2014, we should always reach outside of our bubble with our awareness efforts. So, you can imagine how surprised I was to be criticised, by people within our community, for holding an awareness event that was 1 hr 15 minutes in length. Particularly given that most business webinars and online events I tune in to every week are the same length of time. It caused a significant crash but I was happy with the turnout and feedback from ‘healthies’.  Watch it here – in chunks if you have M.E! Read about how it went!

The NICE ‘Pause’

Blog  – This was written BEFORE the nonsense started. So, this blog is a positive highlight!

Team Foggy had T-shirts  and a strong opinion about the delay!

Read our article in Posability Magazine (Pgs 48-49)  ‘An Unprecedented Pause’

The NICE Publication!

29th October 2021, not as all-changing as we would have liked and it is increasingly clear that many medics/NHS/Department of Health and Social Care simply will not budge with their false beliefs re. exercise and CBT for M.E.

So…..

ME Foggy Dog launched a petition…..and then a wider campaign.

Shake It Up!

This has kept me busy and out of trouble for the past 4 months, the petition was launched on 2nd November and the wider campaign, with the help of Kat Gower, went ‘live’ on 25th November 2021. I’m in no doubt that this will be a hard slog and may well be ongoing over Summer 2022 and beyond. It will involve a complete 180 degree turn in mindset.

Podcast – ‘Shake It Up’! (available for 90 days) I was joined by Kat Gower, Linda Hending, and Steve Topple for a chat about the need for this new system. Also available in our Patreon channel podcast ‘archive’.

‘Transcript – FogPod ‘Shake It Up”

Please do sign the petition and take part in the ‘Shake It UP’ campaign. Every signature (anyone, anywhere, can sign) and/or email to your MP and Lord Kamall (UK residents only) counts and matter to me personally (Thank you).

Steve Topple (The Canary) wrote this article about the issue we are tackling with ‘Shake It Up’. Thanks again Steve.

There are more ‘phases’ of this campaign to come in 2022, please do keep your eyes peeled for the latest developments on whatever social media channel you use.

ME Foggy Dog has a presence online in a lot of different places!

Our website – mefoggydog.org

E-newsletter (sign up in  the footer of the website)

Twitter – @mefoggydog

Facebook – @FoggyDog

Instagram – @mefoggydog

Spotify

Buzzsprout

Google My Business – If you are a fan of Team Foggy, could you leave us a review? Let people know how awesome we are? Review us

We Are A Social Enterprise!

ME Foggy Dog has been a social enterprise since September 2018, it became one at the same time that I launched Stripy Lightbulb CIC. ME Foggy Dog has won awards as a social enterprise. But…..I forgot to become a member of Social Enterprise UK until this week. MY M.E brain thought that I did this years ago as I have participated in SEUK campaigns and won an ‘award’ from them…doh. So, Foggy now has a couple of shiny new badges on his website. Social Enterprise UK has been very supportive of all of my M.E work for a few years now…I can’t believe (I have M.E – it’s easy to believe!)  I forgot to join their membership.

Shiny new badges –

Anyone unsure of what a social enterprise is?

It’s a not-for-profit business that works for the benefit of a cause or community. There are different business models within the term ‘social enterprise’, ME Foggy Dog is a sole trader model.  I run it like a normal ‘sole trader’ business but 50% of our surplus (AKA profit), when we make some, will go to Cure ME for biomedical research. We are continuing with our fun fundraising campaigns too so from the outside it doesn’t look like we’ve changed much over the years but….we have! It doesn’t help that one year into becoming a business,  I had put ME Foggy Dog to one side while I concentrated on Stripy Lightbulb CIC for the first year, the pandemic hit and most of our revenue streams were not possible. That’s why we haven’t made a surplus (profit) YET. It’ll happen…..one day!

In our case, we work for the benefit of the M.E/C.F.S community.

Always have, always will.

2022….here we come!

We are reeeeeeeeally looking forward to injecting a bit of fun and globetrotting back into our lives. Hopefully, that will be possible in 2022. As I have said a number of times during the pandemic, our usual ‘World Tour’ activities are simply too risky given that ‘Foggy-sitting’ involves trips out and taking Foggy to the ‘Departure Lounge’ (Post Office). That’s simply not possible when so many countries are intermittently in lockdown and I wouldn’t ask an M.E patient or their family to put themselves at risk of catching COVID19 so Foggy can get home.

If you have any ideas re. fundraising during the pandemic please let me know!! It’s frustrating as in February 2020 I had MANY plans afoot in terms of face-to-face fundraising events. All scrapped/on hold.

That’s it.

That’s our 2021 wrapped up in blog form.

We hope you have enjoyed following us this year, it’s certainly been a rollercoaster!!

I’ll be stepping away from ME Foggy Dog between 21st December 2021 and 2nd January 2022. I need to recharge and reset ready to tackle whatever 2022 throws at us!

Wishing you all a Happy Christmas and, whatever you are able to manage, we hope that you are able to take some joy from the Christmas period. Please know that if you do find you are struggling in terms of your mental health there will be organisations available 24/7 to help and support you. You are not alone.

Ho ho ho!!

Love

Sally

and Foggy (OBVIOUSLY)

xxxxxxx

The post ME Foggy Dog’s Highlights of 2021 first appeared on ME Foggy Dog.