Very Severe ME patient Line aged 26 from Denmark (@nebulow on IG) has appealed to the international ME and Long Covid community to help prevent her being involuntarily removed to a psychiatric hospital from the nursing home she has been living in for the past 10 months.

The core values page on their website states that “It is crucial that the residents are met with: 
Respect
Dignity
Empathy
Realistic Expectations” 

Please sign the petition below in support of our letter asking them to recognise her energy-limiting chronic illness as a debilitating biological disease and to spare her suffering further deterioration or even death:

Dear Director of Copenhagen care facility Arbejde Adlers Hus, 

A potentially dangerous situation with your patient Line Langager Andersen has come to the attention of the global ME/CFS and Long Covid community. 

Line has been incorrectly diagnosed as ‘psychotic’ based solely on very common symptoms of Severe patients with the multisystemic neuroimmune disease Myalgic Encephalomyelitis (a diagnosis she already had upon admission). ME and Long Covid are chronic energy-limiting diseases due to oxygen-starvation at a cellular level.

Doctors have told Line that if she does not get out of bed during the next 2 weeks, she will be forcibly committed to a psychiatric hospital. Not only is this a grave threat to her health, such an ultimatum is unethical coercion and goes against best medical practice.

Simply because Line cannot stand upright or tolerate stimuli, she is being made to take anti-psychotics against her will. A doctor has stated that “the expected effect is that the patient will become less sensitive to sensory stimuli that affect her functional level and reduce the degree of pain upon touch”, yet there is no clinical evidence that olanzapine will have this effect on a patient with ME. 

Prior to this, Line was managing her condition well and making some slow improvements, which are now threatened by the psychiatry team’s intervention. They plan to stop other medications which do have evidence for efficacy in mitigating symptoms of ME.

The psychiatry team's behaviour is not in line with the Danish Authorisation Act which requires doctors to practice their profession with care and conscientiousness. By their own admission they are not experts in ME, and yet they have not listened to Line’s own experience or considered the evidence she has given them on ME.

In recent years, there have been a number of patients with Severe ME who have died when appropriate care was not provided in medical facilities. Too often, this is due to the psychologising of a biologically based energy-limiting, complex neuroimmune disease. In many cases, medical misogyny has led to falsely attributing mental health problems to young women with ME and they have been forced into dangerous and disproven treatments such as GET and CBT.

The NHS in the UK updated their guidelines for ME in 2021 after an extensive evidence review. For instructions as to how patients such as Line should be safely treated, please read the NICE guidelines which are clearly summarised here: Doctors for ME.  

We ask that clinicians involved in Line’s care familiarise themselves with them in line with their professional duty to stay up to date. 

The Bateman Horne Center USA also has an excellent suite of resources for clinicians caring for ME patients.

N.B. Patients with Severe ME can deteriorate rapidly in hospital without optimal care. Please read the reports of the inquest into the death of Maeve Boothby O’Neill from malnutrition and dehydration which could have been prevented had she been given appropriate care and feeding solutions. The avoidable risk was clearly stated by the coroner in her Prevention of Further Deaths report addressed to the UK health minister last year. 

Please read the guidelines for Safer Hospital Care for Severe ME published by the World ME Alliance in 2024 and note the emphasis on the risk of potentially fatal deterioration by delaying urgent care.

Involuntary hospitalisation in a psychiatric ward will cause Line harm through:

• Harsh hospital conditions of extreme light/noise/chemical fumes, which are like torture to someone enduring Severe ME.
• This extreme exertion will lead to compounding PEM (post-exertional malaise, the cardinal symptom of ME) which may take months to recover from or cause permanent deterioration in her baseline function.
• The effects and side effects of unnecessary antipsychotic medications and withdrawal of beneficial ME medications.
• The combination of mental distress and severe PEM could undermine her ability to digest nutrition and thereby lead to a life threatening situation.

Such cases of hospital mistreatment often reach the news - e.g. coverage of Carla Noaum in UK featured on the BBC.

Please ensure that Line Langager Andersen’s medical and nursing care is improved by:

• Withdrawing threats of psychiatric incarceration and mandatory antipsychotic medications;
• Continuing medications advised for Severe ME that have been helping her;
• Applying NICE treatment guidelines as a matter of urgency;
• Abiding by WMEA Safer Hospital Care guidelines regarding compassionate care;
• Delivering ME safe care in line with international norms and best practice;
• Enabling ME-informed clinicians from Remedical to be involved in her care as well as an advocate nominated by Line.

Key recent publications on best practice in ME/CFS management:
Diagnosis and Management of ME/CFS. Grach,Seltzer et al, Mayo Clinic Proceedings, Oct 2023
Long Covid Major findings, mechanisms and recommendations Jan 2023 Davis, McCorkell et al 
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management Nov 2021 Tannenbaum et al
Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 
Caring for people with Severe ME
Energy-limiting chronic illness and energy impairment
Long COVID and ME: pacing guides

Thank you for your prompt attention in this emergency.

Yours sincerely,

Dr Alexis Gilbert FFPH MPH MBBS BSc 
on behalf of the Severe ME Advocacy Group