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.

You can see who our lawyers are at the top of this page.

Our case(s) identities are strictly private and confidential.  Their details must not be disclosed anywhere by anybody but themselves.  We will keep you regularly updated on progress and publish everything we can.

We know this is not going to be easy and that bringing this action is going to be costly.  We also know that many people living with ME have been waiting for an opportunity to donate to a fund that will proactively represent them and nobody else.  We trust this is it.

We are raising £6K to get the case(s) opened with a target of £15K to keep all of it moving forward.  There will be more fundraisers to follow.

We are completely independent of the ME organisations.  We hope they will support us financially (for the benefit of their members) – donations can be anonymous, unless you choose to publicise them. Crowd Justice is giving us the lowest possible level of donation at £5, so if you can only afford to donate once, please join us.  There are over a million people living with ME in England alone.  Everyone deserves to have a chance to participate in paid employment, complete their studies, raise a family, and contribute socially without being punished by illness.  Together we can make a Plan for ME that finally delivers the safe, knowledgeable medical care needed as the first priority.

How did we get here?

The history of how got here is almost unbelievable.  If people were not dying preventable deaths it could be entertaining.

Thanks to Dialogues for a neglected illness for permission to share their film, The Tangled Story of ME/cfs here.  It was made after the NICE Guideline for CFS/ME had been revised.  Publication of the Guideline had been delayed by an unprecidented reaction from several Royal Colleges of Medicine in 2022.

https://www.dialogues-mecfs.co.uk/films/the-tangled-story-of-me-cfs/

Despite removing the recommendation of a harmful physiotherapy treatment, NICE Guideline 206 [1] has not solved any of the problems faced by people living with ME.

NICE recommends a specialist service.

HakleHale[1] NICE (last revised May 2025) 'Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)' https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/

Catherine Hale lives with moderate ME. She is a disability research and policy consultant, founder of Chronic Illness Inclusion, and author of Close to Collapsewhich documents injustice and neglect towards ME within the UK social care system.

I am endorsing the Justice4ME campaign because I was briefly as ill as Maeve when she died, and it horrifies me that in 2022 she was refused lifesaving treatment by the NHS because of systemic failures.

When I went through a period of very severe ME - virtually immobilised in bed - I sometimes struggled to eat enough because of weakness in my chewing and swallowing muscles. The “treatment” offered back then was to put me on a ward where no one would spoon feed me until I got so hungry that I would snap out of it and feed myself.

This was in the 90s when very little was known biologically about ME and the psychiatric paradigm was taking hold. Today scientific evidence of metabolic and neuro-immune dysfunction is undeniable and psychological theories have no place.

So it is an absolute travesty that we are no further on in the treatment of nutritional challenges in very severe ME; that they are still interpreted as psychological and that patients are still treated cruelly within the NHS.

It shouldn’t have to come to a legal challenge, but 30 years is too long to wait with no change and no hope. #pwME have been utterly failed by the medical establishment and we deserve better.

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Naomi Bem - 25 year old, British, multidisciplinary artist, severely disabled by the energy limiting disease Myalgic Encephalomyelitis. Naomi's portfolio on Linktr.ee can be found here.

My practice is a commitment to forging in the friction of contradiction of the sublime within abjection; seeking the utility amongst divine disadvantage and the erotic charge of endurance that comes with refusing erasure and honouring generative wounds. My philosophy is one I've undertaken as an act of defiant reclamation and offers practical guidance for me to process, grieve and adapt to my othering lived experience with relentless chronic illness which renders my value 'invalid' by societal measures. I have built a Cathedral of archetypal architecture containing sacrament born from presence with discomfort, rituals born from the realities of restriction and mythic personas which help me deliver translations under a confessional framework. I wield sincerity and uncertainty as creative mediums in order to compel and confront audiences to attune them to my pursuit of radical acceptance which heralds creation, connection and compassion as the most courageous acts. I am both the alter and the offering.

_____

Madeleine Wallner - Founder, ThriftVIP® and soon to be Cloud Shrine sessions for pwME/LC in Sunderland with the National Trust (hopefully Spring 2026)

My name is Madeleine and I’ve lived with M.E for 30 years now.

In the last 5-10 years I've become more aware of the massive scandal this all is and see that I am no longer in a minority with this disease, and that there’s a whole community out there.

I was made to feel like I was the only one and it was my fault for many years. This is unforgivable.

To abusively orchestrate and control our lives like this by denying significantly funded research and, in turn, access to appropriate healthcare; by knowingly obfuscating the truth, is criminal behaviour and it is abhorrent that any society could do this to a vulnerable group.

History tells us this had been done before to many others. I find myself asking, 'Why isn’t progress important to our society'?

The secondary effects are also damaging to loved ones; devastating when entirely avoidable death occurs.

I’ve committed to every single possible form of trying to help myself where i can, been harmed by the very systems supposed to help, lost DECADES to constant admin, money, my home, and trying and failing again and again because we’re left on our own with it to try and figure it out.

Cruelty of the disease itself for us to contend with, coupled with the cruelty of the people who have done untold damage and caused ongoing mental health problems, due to their neglect, psychologising the disease, gaslighting and abusing patients with harmful ‘treatments’. As a result cPTSD is common amongst us - a trauma I cannot reprocess with EMDR due to it being ongoing. These people will have to live with themselves, and die knowing they caused this pain to thousands, millions of people.

I have no more words for these despicable inhumane individuals, who continue to tune the narrative to fit their greedy ego-driven agendas. Thank goodness for the real scientists, the compassionate minority who actually care and want to progress. To me that’s what science is and I applaud them.

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Galen Warden
Severe Myalgic Encephalomyelitis (ME) advocate, coach, author, and full-time caregiver

Please support Justice4ME.UK with the most generous gift you can afford. It’s very expensive to fight the powers that control the levers of government and healthcare. Without a brilliant, strategic fight in the courts, our most vulnerable will continue to be dismissed, or worse, medically abused. An unforgivable number of patients have been harmed, and have even died, and no one has been held to account for ignoring the science that would have spared them.

Galen was forced to leave her marketing career when her health declined from trying to juggle full-time work with full-time caregiving. Her forthcoming book, I Believe You, When Doctors Won’t, a Mother Must, will include a Forward by Dr. William Weir, and will tell the story of her son James who, like thousands of others, was told to exercise and think differently about his symptoms, until he became fully bedridden in 2019. 

Learn more about Galen and James at www.galenwarden.com

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Maeve Boothby O’Neill dies from medical neglect of ME

As Maeve’s mother, I unreservedly endorse the initiative being taken by Justice for ME.  Here’s why:

“At least we know we tried Mum,” Maeve said after being discharged home from hospital for the third and last time, medically fit, yet unable to sit up, chew, or complete a full meal.  She died from medical neglect of ME on 3 October 2021.  Her death was premature and entirely preventable.  She did not want to die and had everything to live for.  In honour of her memory, and of all the other lives wasted by institutional neglect, I will not stop trying to end medical neglect of ME.

In January Maeve had written,

I have been tired since I was 13. When I was 18 I was diagnosed with CFS/ME.  I hoped diagnosis would help, that I would finally get treatment and recover my health.  I had every potential to be an asset to humanity, and hoped and intended to advance the cause of human flourishing - I achieved A* and A grade A levels, and had offers from Russell Group universities.  I had to reject them all.  After finishing school in 2012 I quickly became housebound and was unable to access the in-person clinics offered by my local NHS CFS/ME Service, but I had been a good scholar and was determined to be a good patient. I attempted to follow the workbook they gave me, find my high-energy activity baseline and increase it by 20% every fortnight, provided this didn’t bring on symptoms.  It didn’t work. Instead, my baseline shrank.  I rarely had the energy for telephone CBT with an OT, and it was never helpful. Physical stamina was the wrong paradigm, nor was the issue my thoughts or feelings or behaviour.  Since then my health has only deteriorated.  I am now 26.

I cannot adequately describe how frightening it is to find at 18 that the only treatment which medical professionals are offering you, the only treatment there is, is not working, does not work, and that you are getting worse, not better. How frightening to discover that there are no doctors who can help you, that they do not even know what is wrong with you, and that in looking for effective alternatives you will be wandering in a wilderness of quacks and blogs.

I know of nobody who has benefitted from GET.  I know a lot of severely affected people whose decline was precipitated by it. Evidence of harm is mostly anecdotal because large, rigorous studies into its impact have not been done.  Regardless of demonstrable harm, if the only treatments available are inaccessible or irrelevant to a large proportion of the patient group - it is estimated that 25% are severely affected - then it is not adequate treatment. Biomedical research must be done to understand what is happening to our bodies, and to prevent very ill people from getting worse and help us to get better.

This is not political, it is existential.  I have no reputation at stake.  I am fighting for my health and for a chance to live.  I need physicians to work with me, and not be hamstrung by guidance which is actively unhelpful. Persisting with the GET/CBT approach on the grounds that it has an evidence base when that evidence base is fundamentally flawed, will do nothing to improve the situation of severely affected patients, many of whose severity of disease has been increased by this treatment.

Having come so far to recognise the needs of patients, particularly the severely ill, I profoundly hope that NICE will not backtrack at this late stage. My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.

(copyright) Maeve Boothby O’Neill January 2021

Maeve’s A* scholarship included Biology, Chemistry, Russian and English at both GCSE and A Level.  She deserved her chance to live.  Her ambition was to be a diplomat at the UN, her university offers for Russian with Hebrew, her voice clearer and more measured than mine.  What a loss she is to the world we find ourselves living in since she died.  She should be 31 today.

She was right in what she said and what she wrote about ME.  We had tried everything and yet – when we needed it to stand up for her – the legislation designed to protect vulnerable adults was deployed against us [1].  When ME caused her to need hospital treatment statutory Social Services and the community Matron dismissed, ignored or stigmatised us, her doctors, the nurses, physiotherapists and occupational therapists equally.  By providing all the care Maeve needed – how could I not – in hospital every day and all the time at home resulted in my dismissal from a permanent part-time post with the same Social Services department.  They knew who I was and knew better than we did what they were doing – and not doing.  She was taking them to judicial review but died sooner.  Nothing changed after her death, or at the inquest.

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

[1] Care Act (2014); Mental Capacity Act (2005); Mental Health Act (1983); Equality Act (2010); Human Rights Act (1998)

[2] Wilshire, C., Kindlon, T., Matthees, A., & McGrath, S. (2016) https://doi.org/10.1080/21641846.2017.1259724

[6] Rochdale Coroners Court, 19 May 2018

Families resort to public petitions

[awaiting photo consent]

Without a specialist service and knowing medical neglect of ME can kill, families go to the public for support.  Media coverage is a massive intrusion on their privacy, adding to the pressure the family is already under, but what else can they do?  These cases go on for years because NHS staff have no resources for meeting the very high burden of care caused by the symptom exacerbation NICE identified as the only diagnostic marker for the disease.

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

Karen has now been in Conquest hospital for 1 year and 8 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.

Following having a heart attack on the 7th of May, Heather, Karen’s mum, spent 12 days in Eastbourne hospital. Then she spent 6 weeks at home recovering. During this time Michael stayed with Karen 24/7 at Conquest hospital . . .  link to the full story here.

NHS doctors left ignorant

Dr Nina Muirhead is a qualified medic with a passion for education. What she says about differential diagnosis is the kind of medical education everyone living with ME deserves. https://www.youtube.com/watch?v=FdU25VKqsKo

Doctors were never taught to consider ME to be a system wide condition that can kill without expert medical intervention.  The NHS has no expertise in ME and is refusing to engage with patients and their families, despite every effort from the Department of Health and Social Care in convening these meetings through its Delivery Plan for ME.

Without a specialist service, staffed by fully trained and clinically knowledgeable health and care professionals, people living with ME are trapped.

Desperate to restore the good health they enjoyed before ME, patients try everything they can to get well.  Yet making this effort without knowledgeable medical advice risks long term worsening of symptoms.  Symptom exacerbation from over exertion, known as PEM [1], is the key diagnostic marker, but medical neglect has resulted in there being no diagnostic test. Trying to find something that will ease the wide range of symptoms, that increase in complexity as the years go by, is a normal over-exertion for most people living with ME.

[1] The Decode ME study screened for Post Exertional Malaise in questions 5 - 13 https://institute-genetics-cancer.ed.ac.uk/sites/default/files/2025-06/DecodeME%20questionnaire.pdf

TV Actress Jennie Jacques' video channel

[awaiting photo]

The expert advice actress Jennie Jacques has been given has come from outside the NHS and exemplifies the neglect from within. Jennie endorses #Justice4ME, being well aware that not everyone has her influence and that the way ME presents with her will not be the same for anyone else.

https://www.youtube.com/watch?v=heJM9uQth1E

International support

We cannot change the world but we are part of an international community.  If we secure a specialist medical service for ME in England, we may begin to make amends for the worldwide harm caused by our government funding the PACE trial.

 https://youtu.be/qVDwvthD3F0?t=250]

Anil van der Zee, Netherlands patient advocate endorses #Justice4ME

Anil, a high performance ballet dancer had to retire at the peak of his career due to ME.  Adapting to living with a chronic illness has turned his dancer's aesthetic to film-making.  This outlet for his creativity is more easily paced to avoid PEM.

https://www.youtube.com/watch?v=yLRateIQdzc

Whitney Dafoe, US patient advocate endorses #Justice4ME

A seasoned campaign photographer, Whitney has documented how his life has been saved by tube feeding while both his parents give all they have to developing treatments that may lead to a cure.  He posted this to the Coroner at Maeve's inquest, to assist in her determinations.

I am sick with a similarly severe case of ME/CFS to Maeve Boothby O’Neill with very similar symptoms. I have had a PEG/J tube for over 8 years, since January 8, 2016. Every single day I pump food (formula) into the J part of the tube and inject 45cc of pureed food into the G part of the tube to make sure my stomach does not atrophy. I cannot tolerate pumping even a small amount of food into the G tube.

I often have the food pump running into the PEG/J tube for 12 hours at a time or more, it makes no difference how long I have food pumping, my symptoms and state of health is the same with the food pump on or off. I always lay flat when food is being pumped into me and laying flat has never, not once been an issue or even caused any nausea or discomfort. Not once. The tube has never pulled out, or gotten curled up, and I have never aspirated. It has also never gotten infected and I go days between cleaning it with hydrogen peroxide and also cannot change my bottom sheet more than once every few months, so it is not in a very sterile environment. Yet the tube has, for over 8 years, been completely fine, with no hint of infection or bad bacterial growth of any kind.

Every few months I have to go to the hospital to get the J-tube changed. I have to get a gurney transport to get there because I am not able to walk or move to a wheelchair, but gurney transports are readily available. The hospital is very accommodating. They give me a private room and allow me to keep the lights off and cover the computer and LED’s on the equipment with towels. They don’t speak with me, but instead ask my mother all questions outside the room with the door closed. My treatment is consistent with the NICE guidelines and they are very respectful of my condition. With their accommodations along with the help of the drug Lorazepam (Ativan), I am not harmed by these trips. They are temporarily exhausting but my condition does not worsen for more than a week. If I did not receive the gurney, the accommodations by the hospital, and Lorazepam, I would likely not recover from just a single trip to the hospital.

Before the PEG/Jtube I had TPN through a PICC line for 18 months. I never got sepsis, but I did get a few infections. They were treated with antibiotics and I got over the infections in a matter of days and returned to my previous state of health with no damage or long term consequences. The PICC line was installed at home, and when it needed changing, it was changed at home as well. The blood sugar checks needed for TPN feeding take only a few seconds and happened without me hardly noticing. They never caused distress or stress nor did they make my symptoms worse in any way. And after my body stabilized, I no longer needed to have blood sugar tests at all anymore. My parents were trained on how to change the bandage and they do it while I'm wearing earmuffs and an eye mask so that it does not cause overstimulation that would make my health worse. The earmuffs and eye mask I use are readily available all over the world including in the UK. Changing the bandage does not cause me harm in any way. It takes an hour maximum and has never been an issue.

I still have the central line for IV fluids for hydration and haven't had an infection in many years. As mentioned above, my caregivers can’t change my sheets very often because of how much energy it takes me to tolerate. So sometimes the bottom sheet was not changed for months. Yet the issue of PICC line hygiene was managed fine in a non sterile environment. There are sterile caps you can put on the ports that prevent anything getting in, in addition to a lock on the ports themselves.

It is a travesty that Maeve did not receive nutrition like I received. I was just as sick as Maeve with very similar symptoms, including sensitivity to stimuli like light, sounds, voices and the company of other people in my room and like Maeve, I could not eat enough food to survive. If I was treated the way Maeve was treated, I would be dead just like Maeve. Luckily, I had doctors who viewed ME/CFS as the serious physiological disease that it is, and understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve. Maeve just needed a way to get nutrition into her body. I got TPN and lived. Maeve was denied TPN and died.

https://www.whitneydafoe.com/millie/

Perversely Dark, a film made in Norway, endorses #Justice4ME

To watch what this beautiful film, about the roller-coaster of waiting for medical treatment for ME in Norway, you will need a free to register vimeo account, use the password Fenomen, and one hour for viewing.  With thanks to the production team and all involved.

https://vimeo.com/fenomentvfilmogscene/review/96586451/90caf58405

Sibylle Dahrendorf, Berlin patient advocate endorses #Justice4ME

Sibylle's international film making career was ended by several hits, by exposure to toxic drugs, such as fluoroquinolones, by persistent reactivated infections and an unstable cervical spine (#CCI). She suffers also from multiple comorbidities such as #POTS #MCAS #SmallFiber, not uncommon with ME. Her last film was an international co-production which she co-directed lying flat in a darkened room while her crew travelled the world capturing interviews with families and clinicians all as equally in need of a specialist medical service as we are here.

https://www.youtube.com/watch?v=p2ZVsHK9nLM&t=2s

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.