The Dark Side of Social Media Activism in Science, Scientists are targeted when results do not align with activist views – Stephen Camarata
The ME Patient Foundation would like to correct the many errors and assumptions made in this piece.
It is unfortunate that Stephen Camarata has been hoodwinked into thinking social media activism with regards to ME/CFS research is the dark side of activism in science. Patients and scientists have merely been highlighting the poor quality of Professor Sharpe’s work and understandably he doesn’t like it very much.
Patients are not ideologically against psychological support; chronic illness has a devastating effect on the lives of sufferers and supportive psychological interventions that help patients come to terms with those difficulties can be beneficial if used appropriately. However, the model of CBT used in treating ME/CFS is coercive, designed to change the patients’ ‘false illness beliefs’ which underpins the biopsychosocial illness model Sharpe uses (ironically this exemplifies their beliefs since there is no evidence to support this model) see Geraghty et al 2019 . This is not supportive or helpful as it questions the patient’s reality and encourages them to be more active than they are able, often resulting in serious damage to their health. Moreover, it disregards the overwhelming evidence of biological abnormalities in ME patients, a disease classified by the World Health Organisation as neurological disease and not a psychological condition as believed by Sharpe and his followers, that would explain why this is harmful (see reporting of patient harms and research from the Workwell Foundation).
Social media is used by patients and the scientists supporting them because many patients are unable to leave their houses and live isolated lives, it is often the only way they can effectively communicate. We understand why Professor Sharpe dislikes such communication exposing flaws in his research, but this does not address the power imbalance. Professor Sharpe utilises the print media via friends at the Science Media Centre and publishes in various journals. He is healthy and occupies a privileged and powerful position as a professor at Oxford University, while the patients he frequently criticises can only avail themselves of social media to make their voices heard. Meaningful patient involvement during the research process would prevent such a situation occurring.
If Professor Sharpe is serious about using the scientific method to resolve the issues then he should support the release of all PACE trial data, something we consider a basic requirement given the trial was publicly funded. Instead, very ill patients like Alem Matthees are made worse (now bedridden and unable to communicate with the outside world at all) by being forced to obtain such data via Freedom of Information requests. Mathees successful request led to reanalysis of the PACE trial using the authors’ original protocol and concluded:
‘These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effect obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases.’ Wiltshire et al.
If Sharpe respected patients he and his co-authors would have withdrawn their paper after its multiple flaws were exposed rather than inflicting this burden on them and would have adhered to the Declaration of Helsinki and notified PACE trial participants of their conflicts of interest. The real dark side seems to be a lack of respect for patients’ rights and lived experience, especially given many of these patients are themselves scientists and medics. We are living in a time when many scientists and medical researchers are keen to engage patients following the patient and public involvement (PPI) in research model, it is unfortunate that professor Sharpe and his acolytes like Stephen Camarata, trapped in the historical paternalistic paradigm, are incapable of doing so, instead choosing to traduce the patients they should be helping.
For more information on the PACE trial flaws please see our website.