What treatments are being tested? Ongoing, registered or planned clinical trials for ME/CFS

What treatments are being tested? Ongoing, registered or planned clinical trials for ME/CFS

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I am delighted to have a guest blog from the talented blogger and advocate Michiel Tack and the remarkable advocate Evelien Van Den Brink (who famously lobbied the European Parliament). They investigated what studies of new treatments were underway or had been funded and present the results here. There’s not as much in the pipeline as ME/CFS needs, which reflects the lack of fundamental research. However, COVID-19 and Long Covid have the potential to rapidly improve the situation. Evelien and…

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Understanding long covid: a shortcut to solving ME/CFS?

Understanding long covid: a shortcut to solving ME/CFS?

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Large numbers of people, around one in 10, don’t make a normal recovery from coronavirus but continue to be ill with “long covid”. The illness is likely to have several different causes, probably including ME/CFS. Post-exertional malaise appears to be a common symptom. Long covid patients have quickly put the illness on the map, helping to launch a wave of research. ME/CFS researchers are joining in, seeing an opportunity to make a breakthrough with ME/CFS. The World Health Organisation has…

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The Netherlands is set to make a huge investment in biomedical research

The Netherlands is set to make a huge investment in biomedical research

A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process. The Dutch national health research agency ZonMw is proposing spending around €25m (£23m, $29m) on exclusively biomedical research over the next ten years. The Dutch government looks set to accept the proposal, once the final version is submitted,…

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UK spends £3 million on the world’s biggest ME/CFS study

UK spends £3 million on the world’s biggest ME/CFS study

£3.2m of government money will fund DecodeME, the world’s biggest ME/CFS study, which aims to recruit 20,000 patients. It will analyse DNA differences between those with and without ME/CFS to help find its causes. Patients are at the heart of the study. Things are changing: ME/CFS gets the full-page treatment in a national paper tody.. The Times reports (paywall) that UK health-research funders are giving £3.2 million to create DecodeME, the world’s largest ME/CFS study. And patients will be at…

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The best evidence yet that immune system problems can cause ME/CFS?

The best evidence yet that immune system problems can cause ME/CFS?

Human leucocytes Antigen (HLA) proteins play an essential role in helping the immune system to recognise pathogens. This new research is easily the best study yet of HLA alleles (gene variants) in ME/CFS. It finds links between alleles of at least two HLA genes and ME/CFS. And since the illness can’t change (HLA) DNA, the link must be that the alleles must play a causal role in ME/CFS. So this evidence that the immune system plays a causal role for…

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(Not ME/CFS.) The coronavirus report behind the big shifts in policy by UK and US governments

(Not ME/CFS.) The coronavirus report behind the big shifts in policy by UK and US governments

Until very recently, the US and UK governments were taking a relatively gentle approach to controlling the new coronavirus epidemic – compared with most other governments around the world. A very recent report from UK academics shows that the strategy would probably have led to a huge number of deaths — well over a million in the US. The report is based on a detailed model using information from many sources. This blog explains how the model works, what it…

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