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UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024
- Thread starter Dolphin
- Start date
yes, I was very nervous about the technology not working right. I did a test run the day before with Marco, one of the organizers, to make sure I. knew which buttons to click and where they were. Even so, he was trying to explain to me how to get rid of the side view of all my slides on the left and I couldn't figure it out. It was 8 am in San Francisco. I missed most of the talks because they were going on all night in my time zone.
Due to time zones I could only watch the first few hours each day but based on what I did see I was impressed with the organisation, the content and the tone/vibe of the conference. I think once all the recordings are posted on the website it will be a useful repository of information for reference & advocacy.
I faded out well before the end but will try to catch up with the talks I missed when they are posted later.
I thought the conference was very well organised. Every speaker had a clearly stated time slot and they weren't allowed to over run, and the question time at the end of most sessions was well run. Most speakers had prepared their presentations to fit neatly in their time slot with clear well designed slides not trying to cover too much. A few clearly hadn't and gabbled their last sections which was a pity.
Its was particularly good to have people with ME/CFS and people with Long Covid telling their stories given the same prominence and respect as scientists and clinicians. I hope clinicians watched them all.
I thought the conference was very well organised. Every speaker had a clearly stated time slot and they weren't allowed to over run, and the question time at the end of most sessions was well run. Most speakers had prepared their presentations to fit neatly in their time slot with clear well designed slides not trying to cover too much. A few clearly hadn't and gabbled their last sections which was a pity.
Its was particularly good to have people with ME/CFS and people with Long Covid telling their stories given the same prominence and respect as scientists and clinicians. I hope clinicians watched them all.
This is important.
rvallee
Senior Member (Voting Rights)
I really hate how this is so easy to find out, there have been more than enough studies on fully-monitored extensive bed rest to do meaningful comparisons. And yet this trope still survives, even when the patients say they were never bedbound, even when researchers themselves openly admit that the patients were reasonably active. It just makes no difference.
It's as absurd as continuing a prosecution against a suspect who has been recorded as being on a flight, has an extensive photo and documentary record and multiple witnesses that place them half-way around the world at the time of the crime. This would be grounds for not just disciplinary action, but possible legal action for wrongful prosecution.
It's this suspension of disbelief that makes it fraudulent. There is no reasonable ground to pretend otherwise, it's just straight refusing contradictory facts. In what is supposed to be a scientific profession. Absurd.
One of the talks was pre-recorded and posted a couple of weeks ago. Dr Tom Molmans: "Addressing psychic trauma in Long COVID and ME/CFS". Tom is a patient and psychiatrist. I found this talk to be both powerful and relatable. (12 mins)
https://vimeo.com/whei/tommolmans
https://vimeo.com/whei/tommolmans
From the first page of selected quotes: "It appears that about 50% patients have both MS and ME/CFS" - Prof. Dr. Ron Davis
??
This has been raised before. I have no idea why he repeats this idea.
Maybe when the transcript becomes available it'll shed some light.
Andy
Retired committee member
The claim By Ron about patients having MS has previously been discussed here, if it helps, Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards
Atlas
Established Member
Does anyone know the origin for the statement/estimate "1 billion Long Covid sufferers by 2033" as on the second summary page.
And/or the evidence it's based on
Is it an estimate of all forms of PASC or the ME/CFS-like-subtype only
No, but it might become clear once all the videos are up for review and someone spots it "in the wild". It sounds hyperbolic and is presumably someone grossly over-extrapolating from the numbers of ongoing infections (projected) assuming that even with <1% of infections leading to LC, eventually nearly everyone (let's call it "a billion people") would have LC on an infinite timeline.
I don't think that is in anyway likely. Even if there's something very special about this virus — and yes we do have papers on its specific mitochondrial suppression effects — not everyone is going to be vulnerable, or maintain that degree of vulnerability with each re-infection. Perhaps the wave of disabling chronic illness that seem to always follow pandemic viruses reflects a combination of 1) a large denominator of infected 2) the novelty of the virus, such that the adaptive immune system is not primed and the innate has to overwork to control it, but at a terrible cost for some who, speculatively, might persist with a pathological upregulated innate system, or some part of it. I would assume point 2) has to be a declining factor in a global population and for individuals on their re-infection, given they are no longer immunonaive. Even if some don't mount any adaptive response and memory, that seems unlikely each time.