In October 2021 here in the UK the National Institute for Clinical Excellence (NICE) issued its a long awaited new guideline for people suffering with ME. This was followed up in May 2022 by the issuance of an implementation directive, which is not done very often by NICE, as pointed out by the Lancet medical journal. NICE emphasized that the implementation of the guideline would require genuine co-production i.e. working in collaboration with the ME community. This guideline full of fine words did not include any recommendations for the serious investment needed to address the dire lack of biomedical research and provide high quality local specialist services for pwME.
Four years after the launch of this guideline and most ICBs who commission local health services still have not implemented this guideline from NICE as apparently the guideline is voluntary. This makes a mockery of the NICE commitment to improve the quality of health care for pwME.
Fast forward to July of this year and the government announced the publication of its long delayed care plan for pwME. After being ignored for many decades and suffering from health inequalities, systematic discrimination and stigma at the hands of the British medical establishment people with ME could be forgiven for believing that all of this activity heralded a brave new dawn in which finally they would start to see steps to improve the situation they face.
The new care plan from the Labour government includes some welcome commitments which involve little or no money such as putting ME on the curriculum for medical students training to be doctors. On the key issue of biomedical research into ME the government's plan is truly awful with no intention to provide the tens of millions needed to kick start research into this seriously neglected disease.
I'm sure that I am not the only person with ME in the UK who feels that we have been victims of serial gaslighting by the medical establishment and successive governments who are in hoc to the interests of the big pharma approach to medicine.
Even when people with ME die from medical neglect, such as Maeve Boothby O'Neill, all we get are crocodile tears from government ministers and the medical establishment with no indication that they are serious about addressing the core issues affecting pwME in this country.
Medical Care for ME Now
Now at long last there is an attempt to raise money for a legal challenge against the decades of health inequalities faced by pwME in the UK. Several days ago JusticeforME launched its crowd funded appeal for money to pursue legal action. In just 3 days it has raised over £6000 with a stretch target of £15,000. The purpose of the proposed legal action is:
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.''
In explaining the reasons for the financial appeal the campaign mentions several key issues.
"We urgently need your support to make sure the specialist health and care services needed by everyone living with ME (Myalgic Encephalomyelitis) are provided without delay.
After three years of consultation, the Government’s Final Delivery Plan for ME/cfs, published in July 2025, made no commitment to the specialist health service needed,
“NHS England also remains committed to working with a wide range of patients, patient groups and other stakeholders in the development of its commissioning of specialised services. Ultimately, prescribing a specialised service will be a ministerial decision and subject to funding availability.”
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan
Stating that funding and services will be contingent on a political decision, yet again kicks people living with ME where it hurts:
People are dying from ME without a specialist service
Hospitals are clueless about how to safely manage ME patients without a specialist service
Families are giving up their lives and livelihoods to provide the highly skilled nursing care required without a specialist service
We are not asking for anything not already offered to other people with chronic health conditions – and we never asked to be here, doing this, either. Now that we are here, please help fund our legal challenge. Donate what you can afford, so we can get expert legal advice on how to fight back.''
The legal challenge has been endorsed by the mother of Maeve Boothby O'Neill who has said:
"It took three years for the inquest into Maeve’s death to be heard in full. After it concluded a Prevention of Future Deaths report exposed the systemic neglect at national level experienced by everyone with an ME diagnosis. We knew before they starved her to death, this neglect is international and led by Britain.
Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME.''
Sarah Boothby
Maeve’s mother
26 August 2025
The crowd funder finishes with the following appeal to the ME community and beyond:
"We know this is not going to be easy. We also know that ME knows no borders and, since the pandemic, the diagnosis without a bio marker is spreading fast.
https://www.crowdjustice.com/case/justice4me/
Four years after the launch of this guideline and most ICBs who commission local health services still have not implemented this guideline from NICE as apparently the guideline is voluntary. This makes a mockery of the NICE commitment to improve the quality of health care for pwME.
Fast forward to July of this year and the government announced the publication of its long delayed care plan for pwME. After being ignored for many decades and suffering from health inequalities, systematic discrimination and stigma at the hands of the British medical establishment people with ME could be forgiven for believing that all of this activity heralded a brave new dawn in which finally they would start to see steps to improve the situation they face.
The new care plan from the Labour government includes some welcome commitments which involve little or no money such as putting ME on the curriculum for medical students training to be doctors. On the key issue of biomedical research into ME the government's plan is truly awful with no intention to provide the tens of millions needed to kick start research into this seriously neglected disease.
I'm sure that I am not the only person with ME in the UK who feels that we have been victims of serial gaslighting by the medical establishment and successive governments who are in hoc to the interests of the big pharma approach to medicine.
Even when people with ME die from medical neglect, such as Maeve Boothby O'Neill, all we get are crocodile tears from government ministers and the medical establishment with no indication that they are serious about addressing the core issues affecting pwME in this country.
Medical Care for ME Now
Now at long last there is an attempt to raise money for a legal challenge against the decades of health inequalities faced by pwME in the UK. Several days ago JusticeforME launched its crowd funded appeal for money to pursue legal action. In just 3 days it has raised over £6000 with a stretch target of £15,000. The purpose of the proposed legal action is:
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.''
In explaining the reasons for the financial appeal the campaign mentions several key issues.
"We urgently need your support to make sure the specialist health and care services needed by everyone living with ME (Myalgic Encephalomyelitis) are provided without delay.
After three years of consultation, the Government’s Final Delivery Plan for ME/cfs, published in July 2025, made no commitment to the specialist health service needed,
“NHS England also remains committed to working with a wide range of patients, patient groups and other stakeholders in the development of its commissioning of specialised services. Ultimately, prescribing a specialised service will be a ministerial decision and subject to funding availability.”
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan
Stating that funding and services will be contingent on a political decision, yet again kicks people living with ME where it hurts:
People are dying from ME without a specialist service
Hospitals are clueless about how to safely manage ME patients without a specialist service
Families are giving up their lives and livelihoods to provide the highly skilled nursing care required without a specialist service
We are not asking for anything not already offered to other people with chronic health conditions – and we never asked to be here, doing this, either. Now that we are here, please help fund our legal challenge. Donate what you can afford, so we can get expert legal advice on how to fight back.''
The legal challenge has been endorsed by the mother of Maeve Boothby O'Neill who has said:
"It took three years for the inquest into Maeve’s death to be heard in full. After it concluded a Prevention of Future Deaths report exposed the systemic neglect at national level experienced by everyone with an ME diagnosis. We knew before they starved her to death, this neglect is international and led by Britain.
Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME.''
Sarah Boothby
Maeve’s mother
26 August 2025
The crowd funder finishes with the following appeal to the ME community and beyond:
"We know this is not going to be easy. We also know that ME knows no borders and, since the pandemic, the diagnosis without a bio marker is spreading fast.
The time for action is now. Please donate as much as you can afford.
Thank you."
https://www.crowdjustice.com/case/justice4me/
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
