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Jennifer Brea @jenbrea
, 40 tweets, 27 min read Read on Twitter
I don't know who wrote this but this is absolutely false and deeply embarrassing for @SMC_London: sciencemediacentre.org/cfsme-the-illn… which has shown again and again that it has absolutely no respect for science and is willing to mislead the media by promoting pseudoscience.
First, on the idea that is is somehow a battle between the medical community and "campaigners..."
.@owasow and I were hanging out with friends last weekend, one of whom happens to be a social psychology professor. We were discussing the the replication crisis in her field and completely unprompted she brought up the PACE Trial. @SMC_London
She said, in effect, that it had become a prime example / cautionary tale of what can happen when you change outcome measures mid-trial, and has become a part of the push for journals to publish trial designs *before* trials are undertaken. @SMC_London
So over here in America @SMC_London, the release you just viewed is viewed as ridiculous not just by people who follow the field, but my researchers who use statistical methods across an array of fields – including psychology.
So over here in America @SMC_London, the fundamental content of your press release has been rejected by our major research and public health institutions, including the National Institutes of Health and the Centers for Disease Control.
Moreover, @SMC_London the scientific consensus at our major research institutions (e.g., Cornell, Stanford, Columbia, Harvard) has moved well past this. You frankly sound like this guy, raving about TUBERCULOSIS being partially psychological in 1944, on the eve of penicillin.
“tuberculosis can be as much a disease of the personality as it is of the lungs.” journals.lww.com/psychosomaticm… @SMC_London
Journalists, I know it is confusing because @SMC_London has "Science" in its name. But it is not interested in accurately and articulately summarizing science for you. When it comes to my disease, it is the Breitbart of science journalism.
First, a trustee on its board is one of the architects of the biopsychosocial school as applied to ME, a paradigm that is dying a death by a thousands cuts due to SCIENCE. That is normal and good. We were wrong about many things until we weren't. Science updates @smc_london
This conflict of interest isn't even mentioned in the release – good practice in any kind of communications around medicine and especially for an organization whose mission is to "renew public trust in science". @SMC_London
But it is a part of the reason why the only time @SMC_London reports on ME: it's to defend one point of view and one very small group of researchers. Which surely is an enterprise that has absolutely nothing to do with science?
Lastly, you frame the controversy @SMC_London as one between the "mainstream medical community and campaigners." This is extremely disrespectful + uncollegial to the 100s of researchers whose work disputes the content of this release and whose existence you don't even acknowledge
History @SMC_London will not be kind. The question is, how soon do you want to get on the side of *accurately* translating science to the public and saving lives?
But truly, I want to give you the benefit of the doubt @SMC_London. In case your PubMed subscription expired, here is some actual science.
"Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome" ncbi.nlm.nih.gov/pubmed/28018972 @SMC_London #SMCfail #ScienceisAwesome
Metabolic features of chronic fatigue syndrome pnas.org/content/113/37… @SMC_London #SMCfail #ScienceisAwesome
"Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome" ncbi.nlm.nih.gov/pmc/articles/P… @SMC_London #SMCfail #ScienceisAwesome
"Changes in Gut and Plasma Microbiome following Exercise Challenge in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" ncbi.nlm.nih.gov/pmc/articles/P… @SMC_London #SMCfail #ScienceisAwesome
"Prefrontal cortex oxygenation during incremental exercise in
chronic fatigue syndrome" onlinelibrary.wiley.com/doi/pdf/10.111… @SMC_London #SMCfail #ScienceisAwesome
"Submaximal exercise testing with near-infrared spectroscopy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients compared to healthy controls: a case–control study" …nslational-medicine.biomedcentral.com/articles/10.11… @SMC_London #SMCfail #ScienceisAwesome
"Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment" …nslational-medicine.biomedcentral.com/articles/10.11… @SMC_London #SMCfail #ScienceisAwesome
"Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome" …nslational-medicine.biomedcentral.com/articles/10.11… @SMC_London #SMCfail #ScienceisAwesome
"Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects" sciencedirect.com/science/articl… @SMC_London #SMCfail #ScienceisAwesome
"Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome" academic.oup.com/ptj/article/93… @SMC_London #SMCfail #ScienceisAwesome
"Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T 1H MRS imaging study" onlinelibrary.wiley.com/doi/full/10.10… @SMC_London #SMCfail #ScienceisAwesome
Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder ncbi.nlm.nih.gov/pubmed/20661876 @SMC_London #SMCfail #ScienceisAwesome
"Increased ventricular lactate in chronic fatigue syndrome. III. Relationships to cortical glutathione and clinical symptoms implicate oxidative stress in disorder pathophysiology." ncbi.nlm.nih.gov/pubmed/22281935 @SMC_London #SMCfail #ScienceisAwesome
"Elevations of ventricular lactate levels occur in both chronic fatigue syndrome and fibromyalgia" tandfonline.com/doi/abs/10.108… @SMC_London #SMCfail #ScienceisAwesome
"Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study" jnm.snmjournals.org/content/55/6/9… @SMC_London #SMCfail #ScienceisAwesome
"Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study" onlinelibrary.wiley.com/doi/full/10.10… @SMC_London #SMCfail #ScienceisAwesome
"Regional grey and white matter volumetric changes in myalgic encephalomyelitis (chronic fatigue syndrome): a voxel-based morphometry 3 T MRI study" birpublications.org/doi/full/10.12… @SMC_London #SMCfail #ScienceisAwesome
"Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" sciencedirect.com/science/articl… @SMC_London #SMCfail #ScienceisAwesome
Because Twitter threading still leaves something to be desired, if you have made it this far, the rest of the thread is here:
"Low NK Cell Activity in Chronic Fatigue Syndrome (CFS) and Relationship to Symptom Severity" omicsonline.org/open-access/lo… @SMC_London #SMCfail #ScienceisAwesome
"Biomarkers in Chronic Fatigue Syndrome: Evaluation of Natural Killer Cell Function and Dipeptidyl Peptidase IV/CD26" ncbi.nlm.nih.gov/pmc/articles/P… @SMC_London #SMCfail #ScienceisAwesome
"Screening NK-, B- and T-cell phenotype and function in patients suffering from Chronic Fatigue Syndrome" ncbi.nlm.nih.gov/pmc/articles/P… @SMC_London #SMCfail #ScienceisAwesome
"Antibody to Epstein-Barr Virus Deoxyuridine Triphosphate Nucleotidohydrolase and Deoxyribonucleotide Polymerase in a Chronic Fatigue Syndrome Subset" journals.plos.org/plosone/articl… @SMC_London #SMCfail #ScienceisAwesome
"Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome." ncbi.nlm.nih.gov/pubmed/26399744 @SMC_London #SMCfail #ScienceisAwesome
"In myalgic encephalomyelitis/chronic fatigue syndrome, increased autoimmune activity against 5-HT is associated with immuno-inflammatory pathways and bacterial translocation." ncbi.nlm.nih.gov/pubmed/23664637 @SMC_London #SMCfail #ScienceisAwesome
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