ME/CFS onset had two peaks, which may be a clue to causes

ME/CFS onset had two peaks, which may be a clue to causes

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A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, around 16 and the late 30s – a rare bimodal pattern. There are differences between people in the two peaks. Those in the early peak are more likely to report an infectious onset, be more severely ill, and have close relatives with ME/CFS. That combination of age…

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DecodeME: X marks the spot where ME/CFS biology can be discovered

DecodeME: X marks the spot where ME/CFS biology can be discovered

Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eight genetic signals for the illness. These signals indicate that immune and neurological processes play a significant role in ME/CFS. I wrote this blog for DecodeME and repost it here under a CC-BY licence. Why a DNA study? We know little about the biology of ME/CFS,…

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Remarkable researchers hunting for ‘something in the blood’ of people with ME

Remarkable researchers hunting for ‘something in the blood’ of people with ME

Several small and quite different ME/CFS studies have come up with the same tantalising finding – and now a team of two very talented resarchers, one a patient, are embarking on a robust replication that could help move the whole field forward. The finding? That if you take blood from people with ME/CFS, and add it to healthy cells grown in the lab, it changes the cells’ behaviour, while blood from healthy people does not. This could be a major…

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New study links 14 genes to ME/CFS

New study links 14 genes to ME/CFS

A study has analysed existing genetic data in a new way to link 14 genes to ME/CFS and identify many patient subgroups. If the new approach pans out, it could transform ME research and turbocharge the development of treatments. Paper: Genetic Risk Factors for ME/CFS Identified Using Combinatorial Analysis Authors: Sayoni Das, Krystyna Taylor, James Kozubek, Jason Sardell, Steve Gardner The paper has been submitted to a scientific journal and is being considered for publication. For now, the submitted draft…

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Graphic of a DNA molecule
Norwegians publish the biggest ME DNA study yet and show we need even bigger studies

Norwegians publish the biggest ME DNA study yet and show we need even bigger studies

A Norwegian team has published the largest analysis yet to look for DNA differences that could pinpoint what goes wrong in ME (also known as chronic fatigue syndrome, CFS). Such differences would be a first step toward finding effective treatments. Unfortunately, the new study doesn’t find any DNA differences that reach the accepted standard for statistical significance. Even so, as Professor Chris Ponting and I comment in a companion piece, their paper helps to move forward the field of ME…

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Partnership logo
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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