5,730
of 10,000 signatures
To Secretary of State for Health and Social Care Yvette Cooper MP
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.
Open letter text
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.
27 Aug 2024
Statement
Due to recent crossover with a newly formed group, ME Foggy Dog will no longer be publicly campaigning for a NHS protocol, but will concentrate on other projects that benefit the M.E. community.
6 Aug 2024
'Going Local' for BED for Severe M.E!
The next step for this campaign is to contact your local health board, ICB, or trust (called different things depending on which UK nation you live in). This is a component of a campaign I am running on the 8th August to mark Severe M.E day. I am still 'lobbying' the Health Ministers of all UK nations for a NHS protocol but now want to add a local layer to this campaign. See what I need you to do - https://www.mefoggydog.org/bed-for-severe-me/. Your support is greatly appreciated.
28 Jul 2024
'Decision-maker' changed and contacted.
I was gently nudged by a person with M.E. earlier today, although I had been aiming my advocacy efforts at the new Secretary of State for Health and Social Care, Wes Streeting MP for the past few weeks, I had forgotten to update the 'decision-maker' on this open letter. I've now updated it! I have also separately emailed Mr Streeting encouraging him to support this campaign. I had contacted him since February about the NHS protocol open letter but hadn't received a response. Fingers crossed!
27 Jun 2024
NHS Protocol Campaign Next Steps - Coming Soon!
The next steps will be announced soon and will tie in to a much wider campaign to mark Severe M.E Day on 8th August. I'll post more information on here when I have finalised a few things.
Thank you all for your support, please keep sharing this open letter (algorithms mean limited reach on social media) so repetitive sharing can be good.
10 Apr 2024
We Need This!
We have now reached over 2500 signatures! Amazing - thank you. But we need to have many more to show Victoria Atkins MP just how serious this issue is and the strength of public feeling. Please continue to share with friends, family, and colleagues.
27 Feb 2024
Thank you and Keep It Going Please!
1798 signatures so far! Thank you to everyone who has signed, shared, and commented. I've still not had a response from Victoria Atkins MP and I will be chasing this up today. There are now 4 very severe M.E patients in NHS hospitals in England who are receiving inadequate 'care' due to the lack of a protocol. Please continuing encouraging family and friends to sign this open letter. Thank you.
16 Feb 2024
Open Letter - Over 800 signatures so far!
Thank you to everyone who has signed, shared, commented, or liked the open letter on social media. The open letter will be live until next Tuesday (open for a week), then I move on to the next phase. Let's do this!
Signers list
Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E. Foggy Dog Campaign
Next step - spread the word
Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E. Foggy Dog Campaign
Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E. Foggy Dog Campaign
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