An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases

Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up.

Writer’s note: In this essay, I deliberately capitalize different categories of ME in order to give each the weight and dignity they deserve. I also choose to distinguish between the Sick and the Well to highlight our status as a marginalized group amongst those who don’t recognize wellness as a privilege.

Content warning: This story includes details of medical abuse of people with Severe ME and Long COVID.

Listen to Sam Pearce discuss this essay on our podcast:

“What other illness gives the least attention to the most affected?” asked Clare Norton, in her devastating account of her daughter Merryn Croft’s existence before she died of Very Severe myalgic encephalomyelitis (ME) in 2017 at the age of 21.

Her words have haunted me ever since. I’ve been Sick for 33 years and Severe for seven. By July 2024, I was lucky enough to claw back enough capacity to consider joining the strategic leadership board of the World ME Alliance (WMEA). I was elected on a mandate to uplift marginalized patient voices, starting with the Severe. 

With the help of social media networks, I recruited a focus group to give feedback on a Severe ME Day campaign. In the wake of the August 2024 inquest into the tragic death of 27-year-old Maeve Boothby-O’Neill three years previously, the process made us all feel more empowered. The input of this Very Severe Panel refined vital details of WMEA’s Safer Hospital Care Guidelines, and their personal stories provided evidence of medical mistreatment around the world. It was exhausting work for everyone, but satisfying.

But in two months following Severe ME Day, three more emergency cases were brought to our attention back to back: in New Zealand, a tube-fed patient was being refused routine maintenance at a palliative care clinic; in Greece and Spain, two Very Severe young women were involuntarily hospitalized in psychiatric wards.   

A bunch of Sick individuals who were mostly Severe themselves took the initiative to help. Together, we crafted a letter for NZ clinicians with links to scientific papers and treatment guidelines. A Mexican colleague translated this template for Spanish locals to follow up. Greek speakers in the international ME and Long COVID community translated Katiana Mekka’s appeal into English to help her bring pressure to bear via coverage in the UK press. 

All three Very Severe people are currently out of the hospital. But as a result of running on adrenaline for so long, all of the Severe people mobilizing to assist were negatively impacted with post-exertional malaise (PEM) for up to three months afterward. Even sharing the bare facts of the New Zealand case with the Very Severe Panel proved too dangerous. When any emotional distress can cause a crash, just hearing about how, after two weeks of staff refusing to change her nasojejunal feeding tube, the patient was forced to insert it herself, up her nose into her stomach, was way too much. 

Witnessing this repeated pattern of disbelief and harm — plus the retraumatizing feeling of helplessness — triggered major physical repercussions. For one Sick advocate, the protracted effort and accompanying grief led to a steep decline in health and suicidal ideation. 

The Severe simply cannot sustain such advocacy. Not only are Very Severe patients in crisis neglected by Long COVID and ME organizations who should be mobilizing to come to their aid, Severe advocates stepping into the breach are put at risk.

The increasing number of these incidents exposes the critical need to establish an international task team of ME experts, lawyers, and trauma counselors on call 24/7 — particularly for Sick people in countries without national ME organizations. 

Even in countries with well-established representative bodies, crisis support is lacking. Well-documented brutal hospitalizations of Very Severe patients Karen Gordon, Millie, and Carla Noaum in England in 2023 and 2024 showed that the dereliction of medical care suffered by Maeve Boothby-O’Neill is far from rare. 

Yet U.K. ME organizations did not directly intervene to assist patients or their families fighting to protect their daughters from harm. Why? Surely highlighting these Very Severe crisis cases is the fastest way to mobilize improved care for everyone with energy-limiting chronic illness. 

Why does it feel like the only people willing to come to the aid of Severe ME patients in an emergency are each other?

According to the Institute of Medicine (IOM), 25% of people with ME are estimated to be ‘Severe’; that is, existing along a vast spectrum from “mostly bed-bound” to “tube-fed in total darkness.” Yet you would be hard-pressed to gather any detailed information about the impact of extreme energy impairment from the home pages of any of the major ME organizations. 

There are no clear warnings to the Well about how bad post-viral disease can get; no facts about what the Mild and Moderately Sick might be risking if they push themselves beyond their energy envelopes; no easily accessible guidance for the Severe as to how best to endure the purgatory of living with extreme cellular energy starvation.

What many people with Mild and Moderate ME and Long COVID do not understand — until it is too late — is the terrible progression of energy-limiting disease. The potential deterioration of quality of life is not “bad, a bit worse, and then worse again”; it is bad, worse — and then you fall off a cliff. 

On behalf of the Very Severe, we the Severe are appealing to you, the Mild and Moderate, to put pressure on our ME and Long COVID organizations to dedicate at least 25% of their annual attention (including budget and staff) to our plight. Help us demand that they campaign for online consultations, at-home palliative care and dedicated respite facilities, as well as an international emergency task force. 

In January, a study from the RECOVER program reported the incidence of ME to be 15 times higher than pre-pandemic levels. Yet not only is there a distinct lack of urgency from our advocacy organizations to sound the alarm about the ongoing threat of mass Severe disability —recently some leaders have actively downplayed the risks.

Within two months of a coroner concluding that Maeve Boothby-O’Neill died from malnutrition and dehydration due to Severe ME, the Chair of the U.K.’s ME Association (MEA), Neil Riley, published an editorial titled “Animals need to move.” Within it, he asked, “why should [ME] stop me making breakfast, answering emails, or taking a walk in the garden?”

Riley didn’t seem to understand that people with Severe ME don’t have the choice to get out of bed. This was more terrifying than the typical British tabloid denigration of the chronically ill, because he was Chief Trustee of an organization established to represent people with ME to government and medical authorities. 

The article led to many complaints and advocacy groups suspending ties with the MEA. Thanks to an initiative led by Dr. Alexis Gilbert and Fran Haddock, over 1,000 people signed an open letter of protest in November. But the MEA met this effort with two weeks of deafening silence.

Members of the international Severe ME Advocacy Group came together to follow up: we created a petition calling on Riley to step down, social media posts and a list of pertinent questions for the MEA’s annual general meeting. Even dividing up these tasks between six of us, passing the baton across time zones during a single week led all of us Severe patients to crash drastically. Some had not recovered by the time Riley finally announced his resignation three months later.

Even dividing up these tasks between six of us, passing the baton across time zones during a single week led all of us Severe patients to crash drastically. Some had not recovered by the time Riley finally announced his resignation three months later.

Severe activists must remember the consequences of the heroic efforts of Alem Matthees, a Severe ME patient from Australia, who from 2014 to 2016 pursued public records to obtain access to the raw data of the PACE trial. Queen Mary University of London spent £250,000 on legal fees trying to avoid releasing the data, but Alem won the court case and appeal. 

His dogged determination to expose the truth revealed egregious flaws in the trial’s methodology and laid the foundations for the overhaul of the U.K.’s National Institute for Health and Care Excellence guidelines on harmful treatments. But the persistent exertion lowered his baseline, to the extent that Alem became permanently bedbound and is no longer able to interact online. 

Since the new year, there have been more crisis cases. A Very Severe patient in Denmark, Line Langager Andersen, appealed to the online community in January after being threatened with psychiatric hospitalization, antipsychotics, and electro-convulsive therapy. The Severe ME Advocacy Group sent a letter to her nursing home, started a petition in support, and requested donations to cover her lawyer’s costs. Other Very Severe patients with extreme gastroparesis, a young man in Mexico and a young woman in France, have been begging on Twitter/X for ME-literate care.

The Severe are the only ones who recognize the depths of the pit of horror that the Very Severe may find themselves stuck in, suffering compounding PEM plus intersectional challenges and domestic violence or neglect. Yet by leaning over to lend a hand, we risk falling further into the quicksand ourselves. 

From our beds, we implore you, the Mild and Moderate, to do more to protect the human rights of the most vulnerable among us. Please hear our plea and make supporting the most Severe our community’s top priority.

Please hear our plea and make supporting the most Severe our community’s top priority.

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Sam Pearce is a member of the Severe ME Advocacy Group, co-founder of SICK Pride, and South African representative to the World ME Alliance. She writes in her personal capacity.

If you would like to help prevent the forced psychiatric hospitalization of Line Langager Andersen in Denmark, please add your name to this petition or donate to cover her lawyer’s costs. You can also support Katiana Mekka in Greece via her GoFundMe.

If you would like to volunteer for the Severe ME Advocacy Group — either as a Severe/Very Severe panelist giving input on campaigns when spoons allow, or as a Mild/Moderate ally assisting with advocacy (particularly if you have medical, legal, or PR experience)  — please email samfleurpearce@gmail.com.

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