Science AMA Series: I’m Professor Mady Hornig at Columbia University’s Mailman School of Public Health, Ask Me Anything about chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)!

Two potentially controversial questions here - only answer one if you want!

1) Were you involved in the XMRV saga? (If so, thanks). Do you have any insider gossip on what was going on that you can now share? It seems that there was a desire to move on without digging too much into what went wrong there.

Intro to 2) As you're probably aware, there's a lot of controversy over the claimed efficacy of cognitive and behavioural interventions for CFS, with non-blinded trials showing improvements in subjective report measures that may be considered clinically significant, but without improvement in more objective measures of outcome (fitness, activity levels measured by actometer, employment outcomes, etc). There has been particular concern about the way in which one large trial (PACE) deviated from it's protocol so as the released results have served to exaggerate the improvements claimed for the treatments that these researchers had developed.

Patients have requested the release of results for the outcomes laid out in the trial's protocol, receiving a range of contradictory refusals (claimed that the data was due for release, that it did not exist, that it would be too expensive to calculate, etc) and there is now are request for annonymised data:

https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part

2) Can you think of anything that patients can do to try to ensure that they are given more rigorous and accurate information about the efficacy of cognitive and behavioural interventions? Or to have more doctors and researchers recognise the potential for problems with bias in nonblinded trials? It seems that a lot of harm and distrust has occurred as a result of a desire to encourage patients to pursue interventions of no more value than placebo, and that some researchers see patient frustration about this as evidence that it is patients being unreasonable. Any information on views and attitudes from those behind the scenes that you feel able to share? Or ideas on how to move towards a situation where patients can be more confident in the claims made by doctors and researchers?

/r/science Thread