"Who We Are We are built from various backgrounds. We believe complex problems benefit from diversity – diverse cognitive repertoires, technical skills and cultural backgrounds. PWLE is at the heart of the Network, helping to shape our vision and mission. The term "Web" refers to the patient, clinician, and researcher interconnections across all pillars of science, as well as the adaptability, flexibility, and speed with which solid connections and meaningful knowledge exchange can be formed." "The Network will create a cohesive and coordinated national framework to ensure research integration into clinical care and PCC education. We will use existing networks and funded projects across Canada over the next five years to: Improve our understanding of PCC mechanisms; Identify biomarkers and therapeutic targets for PCC Test novel therapies for PCC treatment; Look into inequities in racialized and Indigenous populations among those affected by PCC, and Find optimal solutions for PCC patients' access to care and recovery." https://www.longcovidweb.ca/
Fizzlou pointed out a number of problematic members of this web here, The problematic names that stood out to me at first glance are Flottorp, Garner, Busse, Knoop, Rosmalen, Sharpe, and Wyller.
I assume that this tweet thread is in response to concerns raised about those names then. "Greetings @LongCOVIDWebCA community. That will be my own statement. I have received and seen multiple concerns regarding the network’s members list. Please note that our webmaster was simply tasked in collating names from more than ten large groups who had applied for funding 1/ And have now agreed to come together to support the network’s mission. All names were simply part of numerous grants and we will work to resolve the issues raised by the community. The executive fully understands. 2/ I have personally read 1000´s of papers (incl. all the BMJ and Lancet editorials, and responses), social medias and blog posts, critical analyses, have had 1000’s of hours of meetings with different communities, researchers clinicians, policy makers and insurance compagnies. 3/ My view is that the field of post-infectious conditions has among the largest chasm between patients and all structures responsible to deliver care. My view is also that social medias and defensive editorial responses in journals are stalling the field. We are getting nowhere. 4/ This has to change to improve the culture of care. It is my sincere hope that @LongCOVIDWebCA can be the safe platform for open scientific discussion so that we can resolve disagreements and move forward. I may be a dreamer, but this is what I hope to achieve as co-lead. End/"
Hm. It is kind of like including Harvey Weinstein and the likes on such a list on a website for women's issues and then calling it a safe space. Because both of these sides are somehow equally responsible for the current heated situation and the stalling of the field, all we need is a bridge. I hope Décary achieves what he would like to and I appreciate his good intentions. It's just this is what it looks like to me.
Post-COVID Condition (PPC) Coz there just isn't enough new names and acronyms in play already. Slick website. ––––––––––– Difficult to see how things are going to improve, especially in clinical care, until methodological standards are lifted to a satisfactory minimum, meaning adequate control of relevant and significant variables, across the board, with no exceptions. That is the first and most important issue on the table, and nothing much else matters nor can progress until that foundational stuff is dealt with. Likewise, frankly, it is difficult to see how real progress can be made while psychosomatic ideologues primarily responsible for creating the appalling mess remain significant players on any team, and continue flooding the damn journals and general media with woefully substandard studies, self-promoting speculation, bad faith assertions and arguments, and some very nasty smears against patients who dare speak out about it and demand change. As a sign of good faith perhaps those ideologues could get to making some critical admissions and retractions? On the formal public record of course. Few things could help clear the way for progress more than that, besides a round of resignations and retirements among their senior ranks. I accept that Decáry is well intentioned and wish him every success. But personally I think it is a terrible mistake to try working with people who have such a shitty track record on technical and ethical standards, and who have proved so ruthlessly resistant to accountability and change. Time the rest of medicine bluntly told psychosomatics to get back to the drawing board, systematically rethink their whole approach from the ground up, in close consultation with and thoroughly vetted by both real scientists (including from outside of medicine) and patients, before being allowed to meddle with patients' lives again. That is the kind of reform necessary to get the whole show back on the road.
Apparently the list of names has been taken down. "The list is down for now. We know what happened. This was a collated list of names from multiple grants, no involvement of many individuals. We will report back transparently to the community concerning our actions for this situation."
At least there is more than one person involved that is addressing the issue and being responsive to the concerns. It appears to be a mistake, there are too many names here for everyone to have influence, so let's wait and see how they adapt. Because so far our experience has been that any such issue is met with a wall of indifference and communication blackout (cough cough Cochrane). So there's that, about the least bit of progress possible: they're not all against us. But the position here should simply be that people responsible for this giant failure should not come anywhere near it, in fact should serve as a guide for what not to do. This isn't a controversial position in any other context. Only in business and politics do the people responsible for a giant failure remain influential in continuing that very failure. This has no place in healthcare, even though it's the current paradigm.
It took me a moment to work out what PWLE could be - I initially wondered if they had meant PWLC. In case it's a frequently used term: presumably it's 'People with lived experience'.
There is another tweet thread from Simon mentioning updates this week. And it has fighting words. Can't really do better as an advocate than Simon Décary, who is part of the executive committee. I still don't know if this will be enough, the system is really built to fail us. But it's the sum of all the efforts in many countries that will eventually pay off. As best as I can tell, most of the advocates who tried to get involved anywhere resigned in protest, if not in disgust. The process is non-responsive to the input of patients. The way I see it, about 90% of the LC research so far, like ME research, is worthless garbage that should never have been funded. The remaining 10% is also divided between a 90% that is useful, but only in an aggregate. So about 1% have any potential. With 90% being pure waste, the effort has to be 10x larger than usual, simply to get that 1/10 usefulness. It's going to have to be global to reach that scale. I don't think the official institutions have it in them to do any collaboration, haven't seen any so far, so patient-lead efforts will still be critical. But at least this is 100x better than the alternative timeline where COVID did not happen. We did not stand a chance. And even with the worst-case scenario, technology and science keep progressing, making every dollar go further. Although the most likely scenario is for AI to simply do most of it. At the current pace, once it takes off it will simply be an unstoppable force. Very worst case is that it makes automating EBM so trivial that most of the jobs evaporate. Odds are pretty good it basically invalidates the entire paradigm anyway, it's basically useless.
