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.  <br><br>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.<br><br>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.

Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E. Foggy Dog Campaign

In A&E I was forced to lie on the floor after 5 hours of sitting upright, my heart rate would not lower and I could not stay physically upright. 2 hours on cold hard floor, had to self discharge against medical advice. Nurse shrugged and said "we all get tired". Unacceptable lack of understanding of ME/CFS

Level 1 Change Maker

I have had severe ME since 1997. I have not met a single medical professional since 1997 that understands what ME is. The Department of Work and Pensions stopped all my benefits in 2020 and one of the reasons given was that I am not connected to any specialist in a hospital. If I had recieved diagnosis and correct advice in 1997 I would not have spent the last 27 years having to sue an electric wheelchair. ME is very easy to diagnose and treat. If it is caught early you can make a full recovery. At my first doctors appointments I told them that I was doing a 14 hours shift on Saturday and Sunday and my body was reacting to the overexertion by developing fluish symptoms that peaked on the Tuesday and Wednesday. I kept ignoring this and working. My body responded by developing the fluish symptoms after smaller and smaller amounts of activity. I told the doctors this exact information. It was not until I was bedridden and the GP came to me in my bed that I was told that I have a condition where overexertion is dangerous and can lead to long term disability. This was after 6 months. I could have been diagnosed and warned at the very first appointment.

Level 2 Change Maker

My 31 year old daughter now has severe ME following Covid in 2020. She has had no specialist care except for what we pay for and that is online. Her condition has steadily deteriorated. She cannot access traditional care via outpatients or in hospital as she is bed bound and cannot travel. There is nothing for her. Individualised care including domiciliary visits is urgently required. Proper medical research has been woefully lacking while discredited, harmful treatments from bogus research continue to be peddled by some. Please, please help us.

Retired

Level 3 Change Maker

This is so so vital! I have severe ME and had to go to hospital last year, poor NHS care from people lacking any knowledge of my condition led to me literally having to be rescued from A and E by my parents after lying on the floor for several hours, I told them I couldn't sit up for more than 5 minutes, they didn't believe me, lied to me about how long I would be left waiting in a wheelchair and then left me lying on the floor for hours deteriorating dangerously. Once home and in severe post Exertional Malaise I was of course extremely unwell, but worse was to come, when I finally got past the PEM I discovered that I had lost half of my physical functioning, they had quite literally made me sicker. I've never got that functionality back and I have many new symptoms and difficulties as a result of that day. The NHS needs a plan for us because this sort of thing happens to every severe ME patient out there, others are dying from poor care, it's absolutely unbelievable! How is this not a national scandal?? Why are we being ignored? Our lives matter. Our health matters. We should not be left in pain and suffering simply through lack of knowledge and understanding - the research is there, there is no longer ANY EXCUSE for how we are treated.

People are dying or repeatedly at risk of dying because of the lack of knowledge about the nature of ME. We need progress now. Nothing has been implemented since the publication of the NICE 2021 guidelines

So important that this happens to prevent more avoidable deaths, and also to prevent the ongoing suffering, neglect and health inequality of severe and very severe patient ME patients.

Deaths, suffering, neglect, health inequality… it could all be avoided with proper protocols in place and acknowledgement that these patients are too often pushed aside.

People with ME will do almost anything to avoid hospital admissions. Hospitals are not restful places for a person with ME. The noise, lights, lack of knowledge for severe and very severe ME with medical staff puts patients in the way of harm and is almost unbelievable for a disease that was first noted as far back as Darwin and ironic that Florence Nightingale was said to have the disease. 41% of medical schools do not teach medical students about ME https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8230290/ There are no compulsory refresher courses so many medics will meet ME patients having never being trained in the disease. We desperately need to educate the NHS to avoid any further deaths of mostly young people. It’s astonishing medics still believe people with ME would choose not to participate in life, choosing instead to lie in bed in the dark in silence for years refusing nutrition. When the disease reaches this critical stage and life saving nutrition is required medics must be prepared to assist in supporting patients to survive, not refuse help on the basis of “refusal to eat” or “mental health issues”. We cannot allow this situation to continue.

Hopefully, the NHS are also aware that ME (Myalgic Encephalomyelitis) has been recognised by WHO as a neurological disease since 1969. For severe and very severe ME patients, protocols are urgently required and a matter of life and death for many.

At times I have felt like I am physically dying. And I’d rather die at home than go to hospital which will also likely make me die as they do not have anything in place for severe ME.