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by Professor Chris Ponting A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitled The biopsychosocial approach: a note of caution in Biopsychosocial Medicine: An Integrated Approach to Understanding Illness, edited by Peter White and published by Oxford University Press. The…
The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really driving the disease. And will probably be the biggest study of its kind for any disease. The UK government has committed £4.7 million directly to ME/CFS research through an award from its Office for Life…
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…
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…
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…
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…
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…
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…
Update: the final guidelines, which apparently said much the same as the initial ones, were due to be published on 18 August, 2021. Unexpectedly, NICE announced on 17 August that it was pulling publication – apparently after coming under pressure from supporters of CBT and graded exercise. Professor Jonathan Edwards told NICE it should not recommend either CBT or graded exercise as all the trial…
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.…
