charles shepherd
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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BBC covers Hornig/Lipkin research findings
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charles shepherd
Senior Member
- Messages
- 2,239
The following researchers have shared their thoughts on this research with us.
Prof Julia Newton, Clinical Professor of Ageing and Medicine and Dean of Clinical Medicine, School of Clinical Medical Sciences, Newcastle University
“From the perspective of a CFS/M.E. researcher I would consider this to be a very important study from a group who are known to be preeminent in their field. The cohort is large, the patients included well characterised and consistently phenotyped. The authors highlight the limitations of some of the previous literature in terms of the heterogenous nature of this patient group and how this can lead to issues when drawing conclusions about the significance of a study’s findings. To address this they have therefore stratified the patients in their study in a physiologically meaningful way according to length of disease.
“I would consider that this study is an exciting step forward in this historically challenging field. What are now needed is confirmatory studies performed in other centres using equally stringent characterisation of the study group. If we can encourage research in this area it could have the real potential for the development of novel therapies (or the repurposing of existing treatments) that address the underlying biological mechanisms that lead to this terrible disease.”
Prof Jonathan Edwards, Professor Emeritus in Connective Tissue Medicine, Department of Medicine, University College London
“I think this study is an important step forward in trying to track the biological basis of M.E./CFS. It is perhaps a pity that media organisations and some responding colleagues have focused on headline aspects rather than detailed content. This is not a report of a diagnostic test, but it might help us get there. The study is important because it shows systematic differences in levels of cytokines measured in blood samples from people with early (<3 years) and later (>3 years) M.E./CFS.
“The sample size is large enough and the fact that the same pattern crops up time after time with many cytokines indicates that these are not chance findings. The main concern is for some systematic confounding factor in methodology or population differences.
“However, this is a concern for all M.E./CFS studies and the strengths of this study are that it makes use of a multicentre collaboration with well-standardised methodology and that a population-based confounder seems less likely within two cohorts differing only in disease duration rather than disease versus ‘healthy control’ (age differences seem unlikely to be critical).
“It illustrates the power of longitudinal analysis. The lack of correlation of cytokines with symptom severity also tends to increase their plausibility as markers of causal process rather than a secondary physiological state. Considering how difficult it has been to get high quality biological studies like this off the ground in M.E./CFS I think this is a major triumph.”
Prof Julia Newton, Clinical Professor of Ageing and Medicine and Dean of Clinical Medicine, School of Clinical Medical Sciences, Newcastle University
“From the perspective of a CFS/M.E. researcher I would consider this to be a very important study from a group who are known to be preeminent in their field. The cohort is large, the patients included well characterised and consistently phenotyped. The authors highlight the limitations of some of the previous literature in terms of the heterogenous nature of this patient group and how this can lead to issues when drawing conclusions about the significance of a study’s findings. To address this they have therefore stratified the patients in their study in a physiologically meaningful way according to length of disease.
“I would consider that this study is an exciting step forward in this historically challenging field. What are now needed is confirmatory studies performed in other centres using equally stringent characterisation of the study group. If we can encourage research in this area it could have the real potential for the development of novel therapies (or the repurposing of existing treatments) that address the underlying biological mechanisms that lead to this terrible disease.”
Prof Jonathan Edwards, Professor Emeritus in Connective Tissue Medicine, Department of Medicine, University College London
“I think this study is an important step forward in trying to track the biological basis of M.E./CFS. It is perhaps a pity that media organisations and some responding colleagues have focused on headline aspects rather than detailed content. This is not a report of a diagnostic test, but it might help us get there. The study is important because it shows systematic differences in levels of cytokines measured in blood samples from people with early (<3 years) and later (>3 years) M.E./CFS.
“The sample size is large enough and the fact that the same pattern crops up time after time with many cytokines indicates that these are not chance findings. The main concern is for some systematic confounding factor in methodology or population differences.
“However, this is a concern for all M.E./CFS studies and the strengths of this study are that it makes use of a multicentre collaboration with well-standardised methodology and that a population-based confounder seems less likely within two cohorts differing only in disease duration rather than disease versus ‘healthy control’ (age differences seem unlikely to be critical).
“It illustrates the power of longitudinal analysis. The lack of correlation of cytokines with symptom severity also tends to increase their plausibility as markers of causal process rather than a secondary physiological state. Considering how difficult it has been to get high quality biological studies like this off the ground in M.E./CFS I think this is a major triumph.”