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For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects

For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects

Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research prioritises what matters to patients. It will lead to more effective research. And it will help ensure that research delivers benefits for patients rather than simply “success” for researchers. Two studies underway showcase this approach, which should become the “new normal”. Why do charities and (via the Government) taxpayers fund medical…

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The expert testimony to NICE that took apart the case for CBT and graded exercise for ME/CFS

The expert testimony to NICE that took apart the case for CBT and graded exercise for ME/CFS

Professor Jonathan Edwards told NICE it should not recommend either CBT or graded exercise as all the trial evidence for them used subjective outcomes in unblinded trials, giving unreliable results. He showed why blinding in ME/CFS trials is essential, despite PACE supporters claiming it is not. Edwards said it was also unethical to tell patients that the treatmens are safe, effective and based on sound theories as there are serious doubt about all three claims. Finally, he argued that quality…

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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

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?

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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