EMERGENCY RESOURCES FOR ME AND LONG COVID PATIENTS

Compiled by the Severe ME Advocacy Group and Dr Alexis Gilbert MBBS Bsc

For people with Severe ME being either:

a) threatened with inappropriate psychiatric hospitalisation, medication or treatment

b) denied appropriate medical care.

Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome is a complex, chronic energy-limiting disease triggered by a virus or infection which causes neurological, immunological, autonomic and energy metabolism dysregulation.

Its hallmark symptom is post-exertional malaise (PEM), a significant worsening of symptoms following any physical or cognitive exertion, including sensory and orthostatic stressors. Repeated incidence of PEM can cause decline to permanent disability.

ME results in substantial functional impairment, with an estimated 25% of people affected being homebound or bedbound. The most Severe patients require full time care.

Since 1969, ME has been classified as a neurological disease by the World Health Organisation. Replicable organic abnormalities are evident in ME, including a significant reduction in cerebral blood flow, endothelial dysfunction and a reduction in systemic oxygen supply. (See summary ref 1) It should be more accurately described as Chronic Oxygen-Starvation Syndrome at a cellular level.

Despite numerous studies demonstrating biological abnormalities, many physicians still believe that ME is a psychosomatic illness. This outdated and discredited outlook can have dire consequences for ME patients, whose numbers have greatly increased since the start of the SARS-CoV-2 pandemic and are now estimated at 50 million globally.

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 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 Graded Exercise Therapy.

Key resources for clinicians:

Recent publications on best practice in ME and Long Covid management:

Presentation of patients with Severe ME:

  • Note that patients often do not look ill but experience more suffering and have a lower quality of life than diabetes, MS, stroke, cancer and chronic kidney failure.
  • Profound weakness, often unable to walk, move or communicate verbally
  • Widespread, constant and often severe pain
  • Hypersensitivities to sensory stimuli, such as light, noise, touch, chemical odours and vibration
  • Sleep disorder
  • Cognitive issues that can impede thinking and speaking
  • Gastrointestinal issues may prevent adequate nutrition and require tube feeding
  • Orthostatic intolerance due to reduced blood oxygen to the brain forces Severe patients to lie flat to prevent passing out
  • Extreme intolerance of even slight exertion, including basic hygiene activities
  • Exceeding patient limits can cause PEM and increase level of disability.

Patients with Severe ME can deteriorate rapidly in hospital without optimal care. Reports of the inquest into the death of Maeve Boothby O’Neill from malnutrition and dehydration show it 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 in 2024.

Such cases of hospital mistreatment often reach the news - e.g. coverage of Carla Noaum in UK featured on the BBC, Katiana Mekka in Greece, Line Langager Andersen in Denmark.

Care recommendations:

  • Wherever possible provide clinical care and services at home where the patient’s energy limits can best be managed. Offer telehealth services and allow caregivers to speak for the patient.
  • Provide a dark quiet room and restrict sensory stimuli to avoid harming Severe ME patients.
  • Offer assistance with toileting and washing. Use adult diapers, bedpan or catheter when the patient deems it necessary.
  • Provide nutritionally dense and energy saving foods, such as shakes, bars, soft or liquid foods. Patients may require tube feeding or intravenous saline for hydration if oral nutrition and hydration is inadequate.
  • Patients unable to tolerate upright posture must be transferred in a supine position.

Please note: if ME is misdiagnosed as a mental illness, inappropriate therapeutic approaches can have serious negative consequences if they are carried out without taking PEM into account. Graded exercise therapy is harmful and can worsen the condition irreversibly. Psychotherapy has only a supportive role in ME and should be carried out without a curative objective. This view is supported by the extensive evidence review conducted by the UK National Institute of Health and Care Excellence (ref 2) and is reflected in evidence-based treatment guidelines (ref 2,3,4).

It is estimated that the risk of developing ME is almost five times higher in patients who have had COVID-19 (ref 5).

References:

  1. Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients Medicina, 60(1), 83. Thoma, M., Froehlich, L., Hattesohl, D. B. R., Quante, S., Jason, L. A., & Scheibenbogen, C. (2024).
  2. Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management UK National Institute for Health and Care Excellence. October 2021
  3. Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom Wien Klin Wochenschr 136 (Suppl 5), 103–123 Hoffmann, K., Hainzl, A., Stingl, M. et al. Interdisziplinäres, kollaboratives D-A-CH (2024)
  4. Myalgic encephalomyelitis/chronic fatigue syndrome: Essentials of diagnosis and management. Mayo Clinic Proceedings 96(11):2861-78. Bateman L, Bested AC, Bonilla HF, Chheda BV, Chu L, Curtin JM, et al (2021)
  5. Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study. Journal of General Internal Medicine Vernon, S.D., Zheng, T., Do, H. et al (2025)

Diagnostic criteria of ME/CFS:

Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327-338. Carruthers, B.M., van de Sande, M.I., De Meirleir, K.L., Klimas, N.G., Broderick, G., Mitchell, T., Staines, D., Powles, A.C.P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D.S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A.R., Marshall-Gradisbik, S., Mena, I., Mikovits, J.A., Miwa, K., Murovska, M., Pall, M.L. and Stevens, S. (2011)