Could the kynurenine pathway be the key missing piece of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) complex puzzle?, 2022, Kavyani

[Andy]

Also, regarding the discussion of some kind of formal patient advisory group - we have been discussing it. It's complicated; a formal process, non-disclosure, boundaries, trust, etc would be required. I'm not sure what will be decided in the end but I can at least tell you it's being genuinely weighed up.

I'm sure that Chris Ponting at the University of Edinburgh would give his honest opinion on the pros and cons of working with patients if you or someone else from your team wanted to get in contact with him. DecodeME has both a Patient and Public Involvement (PPI) Steering Group (equivalent to a patient advisory group) as well as patients and/or carers as team members working to deliver all the different aspects of the study.

 

[FMMM1]

Schloeffel is Emerge's medical director, and, well, I shake my head in despair.
We should not have to put up with papers from Australian teams with members experienced in ME/CFS suggesting that Bioresonance therapy is a treatment worth mentioning for pain, or the following are treatments for fatigue

Agreed
Basically there's no objective evidence that psychological interventions (CBT, GET etc.) work. The evidence from PACE etc. is that the little objective evidence collected indicates no increase in hours worked +++ (objective indicators).
We may have some fairly robust exchanges on this site but the bottom line is folks here expect objective evidence.