75 people claim to be cured of chronic fatigue and long Covid. Here’s how

People with chronic fatigue syndrome or long Covid are usually told there is no cure. A new study, however, has suggested mental techniques can be used to cure or reduce the physical conditions of the illnesses. The analysis of 75 people who recovered from one of the conditions, whose accounts have now been collected on a website run by Goldsmiths University of London, found most of who got better did so through “mind-body” techniques such as relaxation exercises and “brain retraining”, designed to dampen the body’s stress response. Shorts But as these therapies are not officially recommended for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long Covid, most people had to learn about them online, Dr Sarah Cefai, a cultural researcher at Goldsmiths, who wrote the analysis, said. “This is the first systematic analysis of a large body of recovery accounts, showing that recovery does happen at scale, outside of the medical system,” said Dr Cefai. ME/CFS involves persistent fatigue, often worsening after exercise, as well as puzzling symptoms such as brain fog, difficulty sleeping and sensitivity to lights or sounds. While the underlying biology is unclear, the symptoms may emerge after a viral infection, such as flu or glandular fever. Long Covid is when similar symptoms develop after infection with coronavirus but can also include shortness of breath and join pain and aching muscles. NHS advice for ME/CFS used to be that people should try to gradually raise their activity levels as well as having talking therapy. Talking therapy is still recommended but the NHS now says people should aim for “energy management” – where they make best use of their available energy to avoid worsening fatigue. The impact of brain retraining and mind-body techniques People who have recovered usually did so through different techniques designed to reduce their body’s overactive stress response, said Dr Cefai, who cured herself of an ME/CFS-like condition. She contacted people who had been interviewed for a YouTube channel about ME/CFS to ask if she could analyse their experiences. The 75 people whose interviews were studied had either ME/CFS or long Covid and were from the UK or North America. Nearly 80 per cent of them had completely recovered, while the rest had significantly improved. And 95 per cent of them had followed brain retraining or mind-body approaches, based on seeing the cause of the illness as stress and anxiety that had led to dysregulation of their nervous system. But Charles Shepherd, medical director to patient support group the ME Association, said the people in the report may not have had true ME/CFS or long Covid, but may just have had long-term fatigue from other causes. “[ME/CFS] has become a label for all kinds of people who would not meet the clinical and research definitions for ME/CFS,” he said. “In some people, stress does play a role in maintaining these sort of conditions; these sorts of brain retraining treatments may well be helpful.” Dr Shepherd also said the report was unreliable because it has not been published in a medical journal. ‘Mind-body techniques can manipulate symptom experience’ However, the report’s conclusions chime with other published research on these conditions, said Professor Paul Garner, a post-viral condition specialist at the Liverpool School of Tropical Medicine, who used brain retraining to reverse his own long Covid in 2021. For instance, a study of 14 Swedish people who had recovered from CFS/ME or long Covid found all viewed their symptoms as having been caused by mind-body interactions or a problem with their nervous system. And for long Covid, talking therapies and physical rehab programmes are the most likely treatments to lead to improvements, according to a systematic review of all published trials – the best kind of medical evidence – published in the British Medical Journal. Doctors in Scandinavia are more likely to advise ME/CFS patients to manage stress and keep up activity levels, said Dr Maria Pedersen, a researcher and senior physician at Oslo University Hospital. “New mind-body treatments manipulate our symptom experience, especially symptoms that are not caused by tissue damage, so we don’t feel those symptoms anymore,” she said. Professor Silje Reme, head of the Mind-Body Lab at the University of Oslo, said similar techniques are helping people with long-term pain. She said resistance to mind-body approaches often arise because people wrongly think that if it works, it implies they were imagining their symptoms. “All symptoms are real, regardless of their cause,” she said. If you suffer from ME/CFS, please contact the ME association 0808 801 0484. For Long Covid, visit https://www.longcovidsos.org/