Another Severe Myalgic Encephalomyelitis (ME) Awareness Week will pass in absolute silence from the government.
The Canary has reported extensively on how ME patients are left to die in hospitals by the NHS. People like Sophia Mirza who died in 2005 after being sectioned under the mental health act without even basic nurse care. 8 August would be Sophia’s 53rd birthday; instead, she died aged 32.
Severe ME Day is held on her birthday, 8 August, to honour her memory, and many others who have since lost their lives to this devastating disease and neglect caused by the NHS.
Or 27-year-old Maeve Boothby O’Neill. The Canary reported on how her inquest, which showed appalling trivialisation of her condition, arrogant medical professionals, and hospital staff’s culture of psychologisation, led to her death in October 2021.
The Canary has also reported on the case of Karen Gorden, who was bed-bound and abandoned by the NHS. As well as Savannah, who was starved in hospital. Both Karen and Savannah are still in hospital being neglected by NHS staff and fighting for their lives.
NHS neglects severe ME patients
ME is a chronic systemic neuroimmune disease which impacts at least 65 million people worldwide – and that is likely a vast underestimate. Similar to, and sometimes overlapping with long Covid, it affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.
Significantly, post-exertional malaise (PEM) is the hallmark feature of ME/CFS, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.
Severe ME affects approximately 25% of people living with the disease. In these cases, people living with severe ME/CFS are mostly, if not entirely, permanently bed-bound. What’s more, they are sometimes unable to digest food, communicate, or process information.
Campaigners demand government action
Campaigners at ME Foggy Dog are urgently calling on the government to step up and stop the NHS from neglecting and eventually killing people with ME.
In 2024, ME Foggy Dog launched a campaign calling for a dedicated NHS protocol for people with severe ME. Over 5,220 people with ME, many severely ill, housebound, or bedbound, signed the open letter.
Despite this, nothing meaningful followed from the government. Over 2024 and 2025, successive Secretaries of State responded to campaigners with the same generic messages that the ME/CFS Delivery Plan and updated NICE guidelines would resolve most of the problems raised.
However, as campaigners have noted, the plan still falls massively short of supporting people with ME. On top of this, the NICE guidelines are not mandatory, the NHS training is not compulsory, and neither addresses the realities of severe ME or the dangers patients face every day.
The government must act now
As campaigners say, this issue is now critical and cannot wait while those in charge squabble to keep power. Government intervention is the only way forward.
ME Foggy Dog said in a statement:
Without equitable biomedical research funding, the risk of deterioration into severe ME remains present for most of the community, we just don’t know who is at risk and who is not. The number of people with severe ME will continue to rise unless action is taken.
The campaign group is calling on the new Secretary of State for Health and Social Care, Yvette Cooper, to take this issue seriously, to champion equitable research funding from the Treasury, and to work with the organisation to implement an NHS protocol that protects patients and clinicians alike.
As the campaigners said:
The open letter demonstrated the scale of public concern, the past few years have demonstrated the consequences of political inaction.
Sally Callow, founder of ME Foggy Dog, said:
Severe ME patients are being failed every day. Without Government‑level action, neglect and harm will continue unchecked. We cannot wait any longer for safe care, accurate information, and proper protection. The crisis is escalating, and decisive leadership is now essential.
The government must act now, before more people with ME die due to NHS neglect.
Featured image via the Canary
