The video hasn't been made available yet, but will post the link here when publicly available.
Yes, I am just about to read this paper and share your view going in. I don't think this is a good explanation and I also do not believe stress is perpetuating things for me. (Subjectively I would say stress is not a feature of my life currently, even within the imposed limitations. My friends and family agree.)
I thought it was quite good - perhaps I missed red flags. I have assumed the dysfunctional breathing (which I have) is a feature of autonomic dysfunction. Her emphasis on observing how patients breathe as a frequently overlooked marker of pathology did not seem misplaced to me.
Yes, I think the symposium could have been structured much better - perhaps over two days and with less time constraint on some of the key talks. It certainly wasn't perfect and there were some technical issues which ate into precious time too. A patient panel would have been ideal. Patient uptake of the offer to be involved was very limited due to the inherent trauma and stigma that is being experienced by so many.
Yes, I absolutely agree there is a great deal of work to do to remove entrenched BPS attitudes throughout the system. Also, yes the ongoing poor teaching and coaching are major problems. I thought the liaison psychiatrist spoke well, but will be interested in your more informed view. The foot in the door is in reference to defining this "new disease" as psychogenic. I just don't see it flying, despite all the ongoing attempts by BPS - including the "successes" they've had gaslighting many individual patients so far.
I say that as I think in the big picture there has been benefit with LC being looked at as new and not (+/- variant) ME/CFS, as so many abnormalities are now being reported. These findings may often be mis-attributed and most are not clinically reportable/available, but they're there, showing that something is going on in the broad camp of "postviral immune dysregulation".
Another key difference is the very large numbers of affected patients in a constrained timeframe (moreso outside NZ), rather than the trickle of eg lagging EBV cases, that are so much easier to individually discount as psychogenic. Insurance companies and major financial think-tanks are also taking this very seriously (see recent BoE comments on workforce) with their commentaries around inflation and recession risk. This is analogous to the disconnect between govt climate change policy and media presentation vs what insurance companies actually believe and adopt as policy.
But I note that symposium commentaries from others are at significant variance to my take. That may reflect my "junior patient" status and (even still) default optimistic set-point. There have been a number of times where those with more experience here have had a more accurate view on developments than mine. However, I would say that the symposium was very well received by NZ LC patients themselves. Admittedly they are as new to this as I am.
I maintain that we are being given an opportunity to take control of the narrative via a more empowered patient voice, reinforced by appropriate biomedical research. It only requires one or two voices of ultimate authority in support and the deal is sealed. I would further argue that we just run with it: don't give them a foot in the door with LC. Kick them in the shins and ridicule their stupidity (even if that has been ineffective over the years for ME).
When change does come it often has a trajectory of push-nothing-push-nothing repeat-nearly-forever and then sudden-change-for-the-good. This is often followed by a retrospective "you mean it was that easy? Why did we have to wait and suffer?"
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) was that the immune system had been exposed to multiple new pathogens and infective contacts and it was not “coping” when I got my first “triggering” ME bacterial infection. They were very interested in testing for every known infective pathogen you could get in the public service (about 10 viruses at the time and lots of other infectious agents).
