After the NHS failed Maeve, on Severe ME Day campaigners will call for an NHS protocol

Thursday 8 August is Severe myalgic encephalomyelitis (ME/CFS) Day. And this year, grassroots ME organisations will launch a new campaign to demand vital change for people living with this devastating disease.

Severe ME/CFS and its devastating impact

ME is a chronic systemic neuroimmune disease which impacts around 65 million people worldwide. 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 impacts 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.

As the recent inquest into the death of 27-year-old Maeve Boothby-O’Neill has underscored, severe ME is sometimes fatal.

Ultimately, catastrophic NHS failings led to Maeve’s death. It highlighted the urgent need for an overhaul of NHS care for people with severe ME. Enter the new BED for Severe ME campaign.

Severe ME Day: a new campaign needs you

Campaign group ME Foggy Dog and ME/CFS training organisation the Stripy Lighbulb CIC have launched the brand new campaign to draw attention to the disease and the dire lack of treatment available.

Specifically, BED for Severe ME is calling on the public to participate in a letter campaign to local NHS boards. The letter concerns the lack of a dedicated NHS protocol for treating patients with severe ME.

That is, while there’s an updated guideline from the National Institute of Health and Care Excellence (NICE), there’s still no protocol to guide its implementation across the health service.

Without this to standardise treatment, NHS hospitals continue to neglect severe ME patients in their care. The result has been hospitals abusing women like 18-year-old Millie McAinsh and 23-year-old Carla Naoum.

Founder of both organisations and long-term ME/CFS campaigner and patient Sally Callow is setting this in motion on the ten-year anniversary of her advocacy work for the community. She said:

For someone with Severe ME, bed is their whole world, because they often need to spend most, if not all, of their time lying down. Bed is often their main place for rest, comfort, and even basic activities like eating, bathing, and ‘socialising’ online or with friends and family (if stimulation tolerated). Bed can become a sanctuary. Essentially, bed becomes more than just a piece of furniture—it’s a vital part of their daily life and health management. That’s why, this year, we’re launching the first annual ‘BED for Severe ME’ campaign to coincide with Severe ME day, and raise vital funds and awareness for people living with this heartbreaking and devastating disease.

Crucially, we’re calling on the general public to back our call for an NHS protocol for Severe ME. This is sorely needed, since there are no effective treatments or cures for this complex disease. Those with very severe/severe ME face significant deterioration as a direct result of inadequate, inappropriate, and often harmful ‘care’ in NHS hospitals when they are admitted as inpatients. Many people at this end of the spectrum are terrified to go anywhere near a hospital setting and refuse to access healthcare services as they know how badly their ME will be impacted by all this.

In February, Callow demanded the protocol in an open letter to key government and shadow cabinet ministers across England, Scotland, and Wales. Nearly 5,000 people have signed it since its launch. You can add your name to this here.

Now, to ramp this up, she’s calling on members of the public to contact their local care boards about this too. Callow has put together a template letter for people to sign and send. You can find this here.

Lack of funding for biomedical research

Alongside the NHS local care board letter, Callow is calling on workplaces to host a ‘wear your PJs to work’ fundraising day in aid of the campaign’s launch.

Additionally, BED for Severe ME is also asking people living with ME to come together on X if they can. To get involved, people can post a selfie of themselves in their favourite pyjamas from bed, to spread the word.

The BED for Severe ME campaign will split funds raised between patient charity Smile For ME, and CureME. Smile for ME is a UK charity that sends personalised presents to patients and carers.

Meanwhile, CureME is a leading biomedical ME research team based at the London School of Hygiene & Tropical Medicine.

Crucially, Callow explained that:

Funding for biomedical research has paled beside other comparable diseases. This is despite the fact that studies have shown that the quality of life for those living with Severe ME is worse than for patients with cancer, heart disease, and many other serious conditions. As we party together in our PJs today, from work or from bed, we’re demanding the government and research institutions finally properly fund biomedical research.

In an article she previously wrote for the Canary, Callow poignantly articulated the importance of her continuing advocacy:

My campaigning continues, so that when I reach that next milestone, the government, the NHS, and clinicians will take ME seriously and treat it equitably at long last.

On the 8 August, her BED for Severe ME campaign is urging you to join her. The NHS’s abysmal care and abuse of severe ME patients continues. This has to change – and it has to change fast.

Feature image via Sally Callow/ME Foggy Dog