Food for thought...
While the UK and US challenges are different in some ways, in some ways they are similar - CDC is sticking to its recommendations for CBT and GET even after the AHRQ Evidence Review Addendum. As it stands now, any change that does come about is going to be very slow. In the U.S., we also have other medical education providers who also promote CBT and GET, sometimes directly sourcing PACE and including statements about illness beliefs, personality issues, child abuse history as a risk, etc.
So what evidence and actions will create the tipping point that these institutions (e.g. NICE, CCDC, and in the US, other med ed providers, etc) can not ignore? We have at least the following so far
1. Analysis of PACE's study conduct issues by
David Tuller of University of California, Berkeley and by
Rebecca Goldin of George Mason University and Stats.org backed up by lots of published comments and additional analysis
2. The initial reanalysis of released PACE data published on Virology Blog
3. The call in the AHRQ evidence review and NiH's Pathways to Prevention (P2P) workshop to retire the Oxford definition, with the P2P report stating that the Oxford definition could "impair progress and cause harm."
4. The AHRQ Evidence Review Addendum that found insufficient evidence for GET and barely any evidence for CBT when Oxford studies were excluded. The Addendum noted that the use of Oxford definition studies "results in a high risk of including patients who may have an alternate fatiguing illness or whose illness resolves spontaneously with time.” The Addendum also noted that none of the studies had used ME or ME/CFS definitions (e.g. no definitions requiring PEM). The weakness here is that a note has not yet been added to the Annals article. Trying to get that.
5. Patient surveys and statements that have repeatedly reported harm from CBT and GET. This includes a
2015 patient survey which reported that while a small number were helped by CBT and GET, many more were harmed. CDC's rationale is that some patients are helped by these therapies but clearly, the risk of harm far outweighs the benefits.
6. IOM report - lots of compiled information/evidence that refutes the activity avoidance-deconditioning disease theory behind PACE and the other Oxford psychogenic studies and comes from a prestigious source - at least prestigious to the U.S. Also provides biomedical supports for patient reports of harm.
7) hopefully a publication on the reanalysis of the PACE data.
8) continued publications of biological pathologies that directly undermine the PACE BPS theory - Naviaux example
9) Unprecedented support against PACE, including from academics outside the field.
What else do we have?
What else do we need and how do we go about getting it?
What is holding us back and how do we counter that?
- e.g. Cochrane reviews that counter the AHRQ Addendum conclusions - what can be done about that?
- institutional and power players that don't want to change - embarrassment? lawsuits? More noise about other work like Magenta? other actions?
- attitudes of medical providers - the IOM report noted that medical provider attitudes toward the disease was going to be the bigger barrier than their lack of knowledge.
Edited to include ideas from later posts:
Added #8 and 9 - new science countering PACE theory, strong professional support against PACE from inside and outside the field
