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What I would like to see is DwME approaching the British Medical Association, the trade union and professional body for doctors in the UK, to implement this? Policy positions are all well and good but what are they doing, as the "the global professional association for medical practitioners and...

Video: Juan Corlett, Engagement Lead for Community Support and Integrated Care for the ME Association would like to introduce himself to the ME/CFS community. Juan says: "I'm extremely proud to have joined this fantastic UK charity for a fantastic cause and something I feel extremely passionate...

Video: Prof Karl Morten (2022) Mitochondrial dysfunction: Chronic Fatigue Syndrome and long COVID

From https://www.nice.org.uk/guidance/ng206/documents/evidence-review-7 and in your order Page 54, PACE, "Serious population indirectness – Oxford criteria used; PEM is not a compulsory feature." Page 24, Janse et al, "Serious population indirectness – 1994 CDC criteria used; PEM is not a...

Recording of Sheffield ME and Fibromyalgia Group Presentation and Q&A with DecodeME principal investigator Prof Chris Ponting

Abstract Objectives Functional movement disorders (FMD) have poor prognosis and high physical and psychological co-morbidity. Their pathogenesis remains unclear, clinicians often find them difficult to treat, and lack of agreement between healthcare providers and patients is common. This study...

Study now published, merged thread Use of Cardiopulmonary Exercise Testing to Evaluate Long COVID-19 Symptoms in Adults A Systematic Review and Meta-analysis Key Points Question Is exercise capacity reduced more than 3 months after SARS-CoV-2 infection among those with long COVID-19 (LC)...

Abstract This exploratory prospective study based on 279 individuals showed that plasma levels of neutrophil elastase, myeloperoxidase and circulating DNA of nuclear and mitochondrial origins in non-severe (NS), severe (S) and post-acute phase (PAP) COVID-19 patients were statistically...

The MRC funds the Dementias Platform, https://www.dementiasplatform.uk/ and are listed as one of the founding partners for the Accord Collaboration, "The national ACORD collaboration was formed in 2021 to encourage and support the development, running and reporting of Multi-arm, Multi-stage...

"A preliminary report for the German guideline on #MECFS recommends graded exercise, despite the fact that @NICEComms found these therapies to be ineffective and that thousands of patients have reported being harmed. A one month consultation period is now open." "The report can be read here (in...

Thanks. Interesting to note that this is the existing one, dating back to 2003, updated. It looks good but manages not to talk about PEM at all. What I'm hoping to find though is evidence for the funders being more proactive than this in other diseases. Despite the claim, "Building our...

Can anyone think of any examples where the UK research funding bodies have, collectively or individually, either initiated or taken part in an awareness campaign which encouraged researchers to apply for funding from them for particular illnesses?

Is it? I thought that it was the opposite?

Our focus has been on the larger number of people that we need to recruit, so obviously that has been on the ME/CFS community. There has been some sharing from the LC community, but that has been more 'organic' rather than anything that we have focused on. Again, this will be something that we...

Great, thanks for taking part, and please do share widely and often if you can. And thanks for the suggestion. We always anticipated that we would have to work to reach the number of participants that we need, so our focus in terms of communications will shift more towards asking the community...

The DecodeME questionnaire asks about symptoms of both, albeit without asking specifically if someone has orthostatic intolerance.

Full title: An explanatory model of depressive symptoms from anxiety, post-traumatic stress, somatic symptoms, and symptom perception: the potential role of inflammatory markers in hospitalized COVID-19 patients Abstract Background The context of the COVID-19 pandemic has harmed the mental...

"People who are no longer able to work may also apply for Social Security Disability Insurance. To date, there has been no sustained increase in disability insurance applications since the onset of COVID-19. This is good news, though it bears watching as disability centers continue reopening...

More than 6 million people have died from COVID-19 worldwide, including nearly 1 million in the US.1 But mortality is not the only adverse consequence of COVID-19. Many survivors suffer long-term impairment, officially termed postacute sequelae of SARS-CoV-2 infection and commonly called long...

Abstract: Long COVID, in which disease-related symptoms persist for months after recovery, has led to a revival of the discussion of whether neuropsychiatric long-term symptoms after viral infections indeed result from virulent activity or are purely psychological phenomena. In this review, we...