Journal of IiMER June 2024 Response to the 2023 Article in Scandinavian Journal of Public Health In September 2023, a group calling itself the 'Oslo Chronic Fatigue Consortium' issued a statement [OR1] entitled - Chronic fatigue syndromes: real illnesses that people can recover from - and supposedly concerning ME. This consortium ventured the notion that - "...the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation. Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities." One wonders from where this group of 'dedicated' researchers seemed to have arrived at the idea that people with ME are in favour of 'prolonged rest, social isolation and sensory deprivation'. As though patients had some choice in the matter. The article conveniently perpetuates the age-old gaslighting of patients by decrying an imagined 'dominant narrative' that - 'the prediction that patients cannot recover and that activity is harmful. This narrative is most commonly expressed by campaigners concerned with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), but more recently by those writing about postcovid-19 condition ' Of course, this fits the same actual narrative that has been trotted out year after year for decades - and received the lion's share of funding from government agencies (oblivious to the needs and experiences of Invest in ME Research patients) - that try to prove the efficacy of the biopsychosocial ideology for ME. If it is not the patients who are causing themselves to be ill by their false beliefs then it is those patient organisations who have tried to do something to support the parlous status of treatment of people with ME in Europe! People with ME and their carers, along with most ME charities, will already be aware of the work of some of the people associated with this Oslo Chronic Fatigue Consortium. A handy reference to educate oneself on what has transpired over the years is available in the work of Margaret Williams over many years [OR3]- describing some of what patients have had to endure with these false ideologies. Nowadays the denigration of vulnerable patients is extended to include long covid - grudgingly acknowledged as an 'often referred' to condition. It would be expected that the European ME Alliance, as one of the oldest of patient organisations, would challenge this 'Oslo Declaration'. Therefore, instead of contending this latest misinterpretation of reality it was decided to support a counter-statement organised by researchers who were performing research into this disease or who were experienced in the real world of dealing with this disease. Last year Dr Jesper Mehlsen - co-chair of the European ME Research and Clinicians Groups (EMERG) - organised a reply to the Scandinavian Journal and EMEA helped coordinate signatories in support of this reply – ‘The Stockholm Declaration’ – recognising the genesis of the article Page 20 of 32
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