Re: The long wait for a breakthrough in chronic fatigue syndrome
One has to wonder at the lack of logic in the Editorial by Professors Andrew Lloyd and Jos van der Meer (1).
On the one hand they say: “Even with the unduly liberal designation of recovery, less than one quarter of patients “recovered” in the PACE trial”, but just three lines later, they assert: “The evidence for graded exercise and cognitive behavioural therapy is already clear, so this treatment should be made widely available”.
Ignoring the evidence that proves them wrong, Lloyd and van der Meer support the PACE trial, which used the PIs’ own (Oxford) criteria.
Can they be unaware of what two major US institutions, the NIH and the CDC, have publicly stated about ME/CFS?
In December 2014 the US NIH Pathways to Prevention Working Group published its draft Statement entitled “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. It is an important document, as it signifies a major change in attitude towards ME/CFS and casts further doubt on the claimed success of the PACE Trial.
The NIH Statement is unambiguous that the Oxford criteria are flawed and lack reliability, thereby confounding the ability to interpret results drawn from studies which used them to select cohorts and noting that use of the Oxford criteria may impair progress and cause harm.
This being so, it can be surmised that all previous psychiatric “research” on ME/CFS that used the Oxford criteria (not just the PACE trial) used groups of people who were not properly characterised and thus those results also lack scientific credibility.
The following quotations from the NIH draft Statement are particularly significant:
“The Oxford criteria (published in the Journal of the Royal Society of Medicine in February 1991) are flawed and include people with other conditions, confounding the ability to interpret the science".
“There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS".
“This is not a psychological disease in aetiology".
“Existing treatment studies (CBT and GET)…(have) not translated to improvements in quality of life. Thus, they are not a primary treatment strategy".
“The focus on exercise programmes has further stigmatised and discouraged research participation".
“ME/CFS is a chronic, complex condition…with no cure…..Nothing has improved the lives of the patients".
The Conclusions of the draft report reiterate key findings:
“Specifically, continuing to use the Oxford definition may impair progress and cause harm…Thus, for needed progress to occur we recommend that the Oxford definition be retired” (2).
After publication on 10th February 2015 of the Institute of Medicine’s Committee’s report (Beyond ME/CFS: Redefining an Illness), the CDC decided to archive its CFS Toolkit that recommended CBT and GET as interventions for ME/CFS (3).
Why would the CDC do that if CBT and GET were effective interventions for ME/CFS?
Rapid Response:
Re: The long wait for a breakthrough in chronic fatigue syndrome
One has to wonder at the lack of logic in the Editorial by Professors Andrew Lloyd and Jos van der Meer (1).
On the one hand they say: “Even with the unduly liberal designation of recovery, less than one quarter of patients “recovered” in the PACE trial”, but just three lines later, they assert: “The evidence for graded exercise and cognitive behavioural therapy is already clear, so this treatment should be made widely available”.
Ignoring the evidence that proves them wrong, Lloyd and van der Meer support the PACE trial, which used the PIs’ own (Oxford) criteria.
Can they be unaware of what two major US institutions, the NIH and the CDC, have publicly stated about ME/CFS?
In December 2014 the US NIH Pathways to Prevention Working Group published its draft Statement entitled “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. It is an important document, as it signifies a major change in attitude towards ME/CFS and casts further doubt on the claimed success of the PACE Trial.
The NIH Statement is unambiguous that the Oxford criteria are flawed and lack reliability, thereby confounding the ability to interpret results drawn from studies which used them to select cohorts and noting that use of the Oxford criteria may impair progress and cause harm.
This being so, it can be surmised that all previous psychiatric “research” on ME/CFS that used the Oxford criteria (not just the PACE trial) used groups of people who were not properly characterised and thus those results also lack scientific credibility.
The following quotations from the NIH draft Statement are particularly significant:
“The Oxford criteria (published in the Journal of the Royal Society of Medicine in February 1991) are flawed and include people with other conditions, confounding the ability to interpret the science".
“There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS".
“This is not a psychological disease in aetiology".
“Existing treatment studies (CBT and GET)…(have) not translated to improvements in quality of life. Thus, they are not a primary treatment strategy".
“The focus on exercise programmes has further stigmatised and discouraged research participation".
“ME/CFS is a chronic, complex condition…with no cure…..Nothing has improved the lives of the patients".
The Conclusions of the draft report reiterate key findings:
“Specifically, continuing to use the Oxford definition may impair progress and cause harm…Thus, for needed progress to occur we recommend that the Oxford definition be retired” (2).
After publication on 10th February 2015 of the Institute of Medicine’s Committee’s report (Beyond ME/CFS: Redefining an Illness), the CDC decided to archive its CFS Toolkit that recommended CBT and GET as interventions for ME/CFS (3).
Why would the CDC do that if CBT and GET were effective interventions for ME/CFS?
References
1. BMJ/2015;350:h2087
2. https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf
3. http://www.cdc.gov/cfs/toolkit/archived.html
Competing interests: No competing interests