Where I refer to larger, singular actions I was meaning, essentially, that rather than trying to intervene on every individual 'bad' post that appeared, the community would have benefited from the charities posting about the situation, acknowledging what was going on, explaining the strategy that had been decided upon, and explicitly expressing support for the community.
I agree. It would have been good to have a joint statement by the ME/CFS charities. They could have focused on the good work they are doing with the biobank and supporting researchers, but that leaves some of the false claims by Reuters intact. Opponents might still think that psychosocial research is taboo in ME/CFS and that charities only support biomedical research. So personally I would like their statement to focus more on the bad research by the PACE-authors. They are the ones who have to defend themselves. They are the ones who made implausible claims (curing ME/CFS using GET/CBT) and cover-up mistakes in their research.
Here's an example of what I had in mind. I do not have the literary skills to write this down eloquently, but I think these are the arguments that should be made.
Hypothetical statement from ME/CFS charities:
As charities, we have dedicated our mission to the care and support of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS patients suffer from disabling symptoms that leave many unable to leave their homes or beds. Patients disappear from public life without anyone standing up for their plight. Currently, there is no treatment available for ME/CFS and doctors can only hope to relieve suffering by targeting each symptom individually.
Some researchers, however, have claimed to treat and even cure ME/CFS using graded exercise therapy (GET). This therapy instructs patients to gradually increase their activity levels and stop listening to symptoms as they progress. Unfortunately, we have seen many ME/CFS patients deteriorate because of GET. In multiple surveys, that go back twenty-five years and span various countries, patients have reported to have been harmed by this approach. GET consistently receives more adverse reactions than any other therapy we’ve surveyed including painkillers, sleep medication, antivirals, and antidepressants. We have received reports of harm by GET regardless if treatment was performed by professionals at specialist centers or not.
These patient reports have been corroborated by scientific study. The hallmark symptom of ME/CFS is no longer considered to be fatigue, but a marked symptom exacerbation after minimal exertion. In a 2015 landmark report, the National Academy of Medicine characterized ME/CFS as an “exertion intolerance disease”. When patients exceed their energy limit, they get much worse.
As knowledge of ME/CFS increased, the research that claimed to cure ME/CFS using graded exercise has received scrutiny. Unfortunately, this has not always been well received. Request to access data of GET-trials, were dismissed as “vexatious”. Those who demanded transparency were characterized as a “very damaging group of individuals”. And researchers and clinicians, who openly criticized these trials, have reported intimidation and attempts to silence their critique.
A court order was necessary for the release of the data from the largest GET-study; the infamous PACE-trial. Independent reanalysis showed that the PACE-authors had inflated their results threefold. Despite intensive exercise therapy, the walking speed of participants was less than half that achieved by class II chronic heart failure patients. Recovery thresholds for fatigue and physical functioning were so low that patients could deteriorate during the trial and still meet recovery thresholds on these outcomes.
Other GET-trials have similar faults. All of these trials are unblinded and rely on subjective outcomes. This means that both patients and clinicians know who is receiving the intervention and that treatment success is measured by how patients fill in questionnaires. As graded exercise instructs patients to stop catastrophizing their symptoms, it encourages participants to downgrade the intensity and frequency of their symptoms. This might lead to short-term improvements in how patients report their health, but these disappear at follow-up and are contradicted by objective outcomes such as exercise and fitness tests. So what changed seems to be the propensity of patients to fill in questionnaire optimistically, not their clinical status.
Medical institutions all over the world have since changed their guidelines on ME/CFS. In the US, the Centers for Disease Control and Prevention (CDC) have removed their recommendation for GET while NICE is currently reviewing their ME/CFS guideline in the UK. Such developments might have embarrassed proponents of graded exercise. If research is shown to be flawed, this can damage the professional reputation of the authors. This is not due to a smear campaign by scientific journals or online trolling by activists, but due to much needed scientific scrutiny. For science to progress, it is vital that research can openly be criticized and disputed - no matter how embarrassed the authors might feel.
