Journal of IiMER June 2024 coming from EMEA Sweden member RME, at their conference in that city last year. The response was submitted to the Journal last year - but no reply was received. Another response was sent and this will be published shortly - albeit forced into an abbreviated form before being accepted for publication. References: OR1 OR2 The original response, which was authored and co-signed by a long list of researchers, is shown below for all to see. This letter will be published on the EMEA web site when the abbreviated version has been published in the Scandinavian Journal of Primary Health Care. Scandinavian Journal of Primary Health Care Article https://www.tandfonline.com/doi/full/10.1080/02813432.2023.2235609 Scientific American 2024: People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome May Have an “Exhausted” Immune System https://www.scientificamerican.com/article/people-with-myalgicencephalomyelitis-chronic-fatigue-syndrome-may-have-an-exhausted-immunesystem OR3 Margaret Williams Articles on ME https://www.margaretwilliams.co.uk The authors initially claim that the current public narrative on severe, persistent fatigue conditions are “most commonly expressed by campaigners concerned with chronic fatigue syndrome (CFS/myalgic encephalomyelitis (ME/CFS)), but more recently by those writing about post-covid-19 condition”. These “campaigners” include the Institute of Medicine and their 400-page review of ME/CFS [1] and the recent guidelines by the National Institute for Health and Care Excellence [2]. The prognosis of ME is not a question of “narratives” but of good, transparent, and reproducible empiric evaluation. The results of research are consistent, suggesting low rates of full recovery of between 5-10 % for adults [3-6]. In claiming a lack of specificity in the newer criteria including post exertional malaise (PEM) as a mandatory symptoms [2, 7], the authors are unaware of recent research, finding lower thresholds for lactate production8 and lower oxygen extraction9 during exercise in ME/CFS-patients as contributors to ME/CFS exertional intolerance-and thus to PEM. Other publications have identified mitochondrial dysfunction to be a likely explanation for PEM10 and have shown a correlation between severity and mitochondrial damage [10, 11]. The authors propose an alternative explanation based on questionable scientific evidence that purports to offer realistic hope of improvement and recovery. This scientific evidence comprises a study in 19 female CFS patients and 21 normal healthy controls showing significant changes in a single measure of heart rate variability after cognitive therapy [12], and a study of long-term follow-up in children and young adults13 that may have a much Invest in ME Research Page 21 of 32
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