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No, that probably shouldn't have happened. Even though the team are now holiday until the New Year, please could you send an email to info@decodeme.org.uk, explaining the situation to allow them to investigate? Please don't do anything with the spit kit for the moment. Thanks for highlighting this.

Trying to compile a kind of "where we are with PEM, and investigating it" list, and have this at the moment, fatigue after exertion isn't PEM. We have reduced energy to start with, so it should be an expected response. studies need to look at participants over a longer term - both to establish...

Full title: Social support in low-income women with Fibromyalgia Syndrome from a sub-urban and peri-urban areas of Tenerife (Canary Islands, Spain): a mixed method study Background: Women with Fibromyalgia Syndrome (FMS) can benefit form adequate social support to fight the consequences of...

No, I've not read it as it is paywalled.

Abstract The purpose of this study was to establish if muscle aerobic metabolism is abnormal in chronic fatigue syndrome (CFS). Myoblast cultures from muscle biopsies of 16 patients with CFS and 10 healthy controls were established. Micromethods were used to determine the lactate/pyruvate (L/P)...

Summary We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed...

OBJECTIVES To examine the proportions of type 1 and type 2 muscle fibres and the degree of muscle fibre atrophy and hypertrophy in patients with chronic fatigue syndrome in relation to lactate responses to exercise, and to determine to what extent any abnormalities found might be due to...

Abstract It has been shown previously that some patients with chronic fatigue syndrome show an abnormal increase in plasma lactate following a short period of moderate exercise, in the sub-anaerobic threshold exercise test (SATET). This cannot be explained satisfactorily by the effects of...

My question would be what evidence Hanson has seen to support her view. I wasn't aware that we have seen sufficient testing of patients to establish the idea that everybody with a diagnosis has evidence of brain inflammation.

Yet another paper that references the Cochrane review as showing that exercise has, "an established moderate evidence base for effectiveness", Balancing the value and risk of exercise-based therapy post-COVID-19: a narrative review, 2023, Singh, Chalder et al.

"The aim of this study was to perform a systematic review assessing the relationship between FSSs and outcomes after spine surgery. We looked at 6 diagnoses - fibromyalgia, irritable bowel syndrome, chronic headaches, interstitial cystitis, chronic fatigue syndrome, and multiple chemical...

Objective To perform a systematic review assessing the relationship between functional somatic syndromes (FSSs) and clinical outcomes after spine surgery. Methods A systematic review of online databases (PubMed and Web of Science) through December 2021 was conducted via PRISMA guidelines to...

Miriam on Twitter, "During discussion, @DrMaureenHanson suggested that there is now enough evidence of brain inflammation to justify simply calling the illness "myalgic encephalomyelitis" and dropping "chronic fatigue syndrome" entirely."

"Well the latest results of the ONS Covid Winter Infection Survey are in and they are, frankly, eye-popping. The estimated prevalence (percentage of infected people) in England as of a week ago (4.3%) is already as high as the Covid wave last December and rapidly approaching the peak of the July...

9,768 signatures at time of posting. https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

Email received today, "Dear all, The December 2023 report from the Independent Advisory Group is now available online. There are updates on: Preliminary timetable for the new year; Complaints and communication; and IAG membership. Best regards, Cochrane"

"Post-viral syndromes are nothing new.7, 17 We already knew of the significant ongoing burden of disease in many infected with SARS-CoV-1 almost 20 years18 and MERS over 10 years ago." Knew about the burden, but did next to nothing about it. And yet another article that comes as close as...

Daughter's death 'could have been avoided' The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition. Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into...

Background: Fibromyalgia is a prevalent condition affecting 1–2% of the general population and can result in significant disability. Physicians and patients frequently encounter challenges in managing this condition. Aim: The aim of this study was to explore novel management approaches through...

Background: Glycogen storage disease type 5 (GSD) is an autosomal recessive inherited metabolic myopathy caused by a deficiency of the enzyme muscle glycogen phosphorylase. Individuals with GSD5 experience physical activity intolerance. Objective: This patient-led study aimed to capture the...