IMHO, we have lost some of our credibility because of the above tactics and unfortunately the consequence of that may lead to further miscommunication and misunderstanding.
IMO, I don't think we had any credibility to lose, in certain quarters.
We need to gain back that credibility. If patients perceive that he has treated us unfairly, rise above that, treat him fairly but at the same time state our case in an appropriate manner. Don't go down to what is perceived as his level. Assertiveness is not the same as aggressiveness.
If you treat people the way you want to be treated you are in a better position to advocate. Again, like life, no promises this would work but I think would be a positive direction to take.
I do agree that a factual and reasonable approach to the issues can be helpful.
However, we have a major disadvantage to those in positions of authority, in terms of advocacy, in that, as patients, we cannot commission our own research, we do not have resources and funds at our disposal to propagate our own interests, and we have very limited resources to gather and disseminate our own information.
The fact that our voices have been ignored and dismissed over so many decades is why so many patients are frustrated.
If our voices are ignored and dismissed, over decades, then it's no wonder that some patients become angry.
When we do reasonably, and respectfully, raise concerns, we are still dismissed, ignored, and even denigrated, as has been demonstrated perfectly in relation to the PACE Trial.
The PACE Trial has been a perfect example of abuse of the system by those with status and authority.
It has been a perfect example of how, when patients act reasonably and respectfully, and engage meaningfully with the science, they are dismissed and ignored.
Patients do not have the resources to disseminate the truth widely, and authoritatively, and as such, false information has been propagated as 'fact' by those in positions of authority, with patients seemingly powerless to change it.
A specific example is the Lancet 'commentary' that falsely states that there was "30% recovery rate" in the PACE Trial, when in fact, no "recovery" was reported in the PACE Trial paper, and the "response rate" was only 11% to 15%. (If only 15% of participants 'improved', then "30%" could not have 'recovered'.) The Lancet 'commentary' was absolutely an error, but the Lancet refuses to change it. Why?
I could go on about the PACE Trial.