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

Many of you have now watched my short video on social media, this video was in reaction to the email received from DHSC in response to my letter relating to ME Foggy Dog’s NHS Protocol campaign. The response is as helpful as those received from the Health Ministers/Departments in Wales and Scotland.

Here is the email.

Dear Ms Callow,

Thank you for your correspondence of 28 July about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have been asked to reply, and I apologise for the delay in doing so.

I appreciate your concerns.

The Government is committed to improving care and support for people with ME/CFS. It recognises how severe the symptoms can be, as well as the significant impact they can have on a person’s quality of life. It wants a society where every person, including those with one or more long-term conditions, can receive high-quality, compassionate care, and it 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 be better prepared for the change in the nature of disease and allow our services to focus more on the management of chronic, long-term conditions.

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2million study, called DecodeME, will analyse samples from 25,000 people with the condition to search for genetic differences that may indicate underlying causes or an increased risk of developing it. By building a greater understanding of the underlying mechanisms of ME/CFS, this will support the development of potential treatments in the future.

In addition, the Department is in the process of finalising its response to the consultation on the ME/CFS interim delivery plan that took place last year. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which the Department aims to publish at the end of the year. The plan will focus on increasing research into and education around ME/CFS, as well as improving the lives of people with the condition.

I hope this reply is helpful.

Yours sincerely,

Correspondence Officer
Ministerial Correspondence and Public Enquiries
Department of Health and Social Care

I’ll let you draw your own conclusions. We need forward thinking to bring about change for M.E., this is sadly lacking in that regard.  As I said in my short video, the M.E./C.F.S Delivery plan will not resolve all issues mentioned in the NHS protocol campaign.  Yet, because that Delivery Plan is ‘in the making’, nothing else can be considered – it seems.

But I have to point out that I literally snorted when I read this bit –

‘..it will change the NHS so that it becomes not just a sickness service, but able to prevent ill health in the first place’.

Labour may have only been in power since 5th July but it has yet to mention COVID19 and the need for mitigations. Until it does, the amount of chronically sick people in this country will continue to rise.  Obviously, they mean prevention through diet and exercise (same old, same old) and not protecting people from the nasty virus that is behind a mass disabling event. Many of these newly chronically sick people will meet M.E. diagnostic criteria. The lack of mitigations is OUR problem (at the moment) but it should be the GOVERNMENT’S.  Chronic illness negatively impacts the economy according to the Government, lack of mitigations is a national act of self-harm.

Because of the meaningless responses from various Governments, I launched the next step of the NHS protocol campaign on 8th August.

‘Going local’

I am asking people in the UK to contact their regional ICB, Health Board, Health Trust and ask them to start a conversation with me about implementing the NHS protocol.

All info can be found here – ‘Going local’ (You’ll need to scroll down the page to get to the relevant section.). I have made this next step as easy to do as I can. There is an email template and contact links.

I’ve now got a couple of meetings booked in (thank you!) and I will be talking to ICBs about the need for the NHS protocol to be implemented. There are 42 ICBs in England and many more Health Trusts and Health Boards in the devolved nations. Please write to your regional healthcare organisation (via the contact details included on the ‘going local’ link above) and help me to start a conversation in YOUR region.

A conversation

This Friday, I am having an online meeting with my own MP – we will be discussing the NHS protocol campaign. I have waited nearly 4 months for this chat (election, summer break) and am hopeful that it will lead to a step in the right direction.

Paws crossed.

Sally

The post NHS Protocol Campaign – Latest Response Received from DHSC on 4th September 2024 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.