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MEAction Responds to Attacks on ME Community in the Guardian and Psychology Today
- Thread starter DokaGirl
- Start date
Esther12
Senior Member (Voting Rights)
I made a brief comment on this here: https://www.s4me.info/threads/makin...uring-from-the-media.10563/page-2#post-188534
ME/CFS Skeptic
Senior Member (Voting Rights)
The article was in the Observer, not the Guardian (both share the same website).
Three Chord Monty
Senior Member (Voting Rights)
I spoke up early on both Twitter and Facebook (Pinker cross-posted), with links to what I think happen to be the best answers to this bizarre, evil propaganda. I disagree with their advice to not engage on these sorts of things. It's not like there aren't a bucketful of credible sources that show this crap to be distorted at best and dishonest at worst, and harmful in any case. I don't think we change minds by not providing the evidence, especially the scientific evidence, that tells the actual story. I actually had someone on Facebook tell me that they believed the article because Pinker posted it & they refused to consider any counter narrative, but that's rare. Obviously it's wise to try to avoid anger and be as succinct as possible but it's a complicated subject, especially on twitter. As long as people use some common sense and try to think for just a second how what it is they're saying may come across--and maybe think about abstaining if 100 people have already addressed it--supplying a rebuttal in spaces like that is something I think is worth doing.
The NIH Final Report: "Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Executive Summary:
https://prevention.nih.gov/sites/de.../programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
Some interesting points from this report; workshop date December 9-10, 2014:
Page 16 - "Conclusions...
" Furthermore, the multiple case definitions for ME/CFS have hindered progress. Specifically, continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery..."
Page 2: "Unfortunately, ME/CFS is an area where the research and health care community has frustrated its constituents, by failing to appropriately assess and treat the disease and by allowing patients to be stigmatized....ME/CFS clearly exists though there is an absence of a universally accepted definition."
Page 3: "Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, micorobiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS that are potentially important for defining and treating ME/CFS.... There are few disease-specific clinical trials; a disconnect on ways patients, clinicians, and researchers define meaningful outcomes..."
Page 4: "The scientific community also has a responsibility to address issues that are meaningful to ME/CFS patients."
Page 5: "Although psychological repercussions (e.g., depression) may accompany ME/CFS, it is not a primary psychological disease in etiology..... Although focusing on fatigue alone may identify many ME/CFS cases, it does not capture the essence of this complex condition. Prior studies may have inadequately excluded individuals with these distinct diseases, leading to delayed or conflicting diagnoses, contradictory treatments, suboptimal care, and inappropriate health care utilization. Future studies that aim to better define cellular and molecular mechanisms for targeted treatments should distinguish between ME/CFS alone, ME/CFS with comorbidities, and other diseases."
Page 7: "The failure to give adequate attention to the severity of the physical, social, and emotional impact of ME/CFS has caused harm and diminished hope....End points need to be clarified: what is statistically significant, what is clinically significant, and what is significant to the patient."
Page 8 and 9: "The symptoms patients consider clinically meaningful are not in the scientific literature; this discordance must be rectified...Overall, there has been a failure to implement what we already know for ME/CFS patients while the disease steals their health and well-being. Scientifically rigorous research is needed to improve this situation. The subjective nature of ME/CFS, associated stigma, and lack of a 9 standard case definition has stifled progress. Patients must be at the center of the research efforts, and their engagement is critical, as is outreach to underserved and vulnerable populations."
Page 9: "Innovative biomedical research is urgently needed to identify risk and therapeutic targets. The scientific community and funding agencies responsible for conducting trials in an ethical way that is meaningful for patients. The influence of health literacy and cognitive impairment on informed consent must be considered. Investigators have a responsibility to hear the patient’s perspective, engage the community, and be accountable for translating and reporting research results to the ME/CFS community while responding to their feedback."
Page 15: "Patients should be active participants in care and decision-making."
(my bolding)
https://prevention.nih.gov/sites/de.../programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
Some interesting points from this report; workshop date December 9-10, 2014:
Page 16 - "Conclusions...
" Furthermore, the multiple case definitions for ME/CFS have hindered progress. Specifically, continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery..."
Page 2: "Unfortunately, ME/CFS is an area where the research and health care community has frustrated its constituents, by failing to appropriately assess and treat the disease and by allowing patients to be stigmatized....ME/CFS clearly exists though there is an absence of a universally accepted definition."
Page 3: "Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, micorobiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS that are potentially important for defining and treating ME/CFS.... There are few disease-specific clinical trials; a disconnect on ways patients, clinicians, and researchers define meaningful outcomes..."
Page 4: "The scientific community also has a responsibility to address issues that are meaningful to ME/CFS patients."
Page 5: "Although psychological repercussions (e.g., depression) may accompany ME/CFS, it is not a primary psychological disease in etiology..... Although focusing on fatigue alone may identify many ME/CFS cases, it does not capture the essence of this complex condition. Prior studies may have inadequately excluded individuals with these distinct diseases, leading to delayed or conflicting diagnoses, contradictory treatments, suboptimal care, and inappropriate health care utilization. Future studies that aim to better define cellular and molecular mechanisms for targeted treatments should distinguish between ME/CFS alone, ME/CFS with comorbidities, and other diseases."
Page 7: "The failure to give adequate attention to the severity of the physical, social, and emotional impact of ME/CFS has caused harm and diminished hope....End points need to be clarified: what is statistically significant, what is clinically significant, and what is significant to the patient."
Page 8 and 9: "The symptoms patients consider clinically meaningful are not in the scientific literature; this discordance must be rectified...Overall, there has been a failure to implement what we already know for ME/CFS patients while the disease steals their health and well-being. Scientifically rigorous research is needed to improve this situation. The subjective nature of ME/CFS, associated stigma, and lack of a 9 standard case definition has stifled progress. Patients must be at the center of the research efforts, and their engagement is critical, as is outreach to underserved and vulnerable populations."
Page 9: "Innovative biomedical research is urgently needed to identify risk and therapeutic targets. The scientific community and funding agencies responsible for conducting trials in an ethical way that is meaningful for patients. The influence of health literacy and cognitive impairment on informed consent must be considered. Investigators have a responsibility to hear the patient’s perspective, engage the community, and be accountable for translating and reporting research results to the ME/CFS community while responding to their feedback."
Page 15: "Patients should be active participants in care and decision-making."
(my bolding)