This is really important. Given the FOIs from the Nice process showed that another set of Uk people were trying to do the same there. And I don't think these people are necessary unconnected, this is clearly a tactic the particular area seems to think itself entitled to do and works (otherwise they wouldn't do it again? would they?).
I find this sort of thing quite shocking and it is important insight that people know it went on. Who knows how commonplace it has been for how long, and whether much of this happens with other conditions and if it is treated the same in response etc.
I don't know much about FOIs and whether it would be possible to have a thread specifically on this because if it is possible without issue this is important enough I think to have a threat with its own titles (for searchability within s4 and from search engines)
I've only scanned this so far but it would also be very useful to analyse the context so that I can work out who the (many) individuals are that he seems to be contacting, and the timing of these.
But also check whether this really is unusual and is actually basically us watching someone smarm and elbow their way into something and influencing with suggestion the make-up etc by doing so. Lots when they get bombarded with emails think there is no harm as they are taking them with a pinch of salt when those doing it are aware that the drip, drip, drip moves the thinking (the goal wasn't the exact demands, just the nudging things from centre to where they wanted it to be, or to have some other element brought in 'to placate' and then go from there once its on the agenda etc).
Genuine question as to whether these are actually the same people, and whether the individuals combined in this are actually an overlap with the membership of another group/association/collective (eg coffi or the psychosomatic x, y, z) and could have been described as such instead?
Researchers at the SFU Faculty of Health Sciences surveyed Canadian Long COVID patients, and found that many people with the condition consider virtual care "lifesaving and essential," while also noting that their primary care provider had little-to-no awareness of Long COVID. Photo: DC Studio
www.sfu.ca
National survey finds virtual health ‘essential’ for Long COVID support: SFU report
I will forever be majorly dumbfounded that the notion of making health care more accessible is mostly a non-starter. It's universally beneficial to all services, but there is no other form of service where the users benefit more. It's so much more efficient and less expensive overall.
And even having by now solved all the technical hiccups, it's just... resisted. Of course that's probably mainly because the capacity doesn't exist, and that restricting access is just a conveniently hidden way of excluding people out of it. There is not enough health care for everyone, but it's too politically difficult to admit, so this is how it plays out.
In a sane society, virtual health care would have been the norm for over a decade. It's such a no-brainer. Not just for chronic illnesses like LC either. Humans are so freaking weird all the damn time.
Susie had come to Saskatchewan from North Carolina three months earlier, chasing the promise of healing offered by Dayan Goodenowe and his Dr. Goodenowe Restorative Health Center in Moose Jaw. It’s a private, unregulated facility that claims “a 100 per cent success rate in stopping the progression and in restoring function of people with ALS.”
Goodenowe maintains that every person who enrolls in the program offered at the centre leaves in better condition than when they entered.
In her desperation, Susie put her home up for sale to pay the $84,000 US fee.
Medical professionals say a 2021 report supported by Health Canada could have a major impact on how the medical system can better understand chronic pain and the best ways to diagnose it — something that has been considered a major weakness in health care up to this point.
But with its release during the height of COVID-19 pandemic, the report flew under the radar, and some doctors and advocates are hoping that can chanage.
There is a wide range of chronic illnesses that are not always visible, including autoimmune diseases such as lupus and endometriosis, and chronic pain and fatigue conditions such as fibromyalgia and myalgic encephalomyelitis, commonly called chronic fatigue syndrome or ME/CFS.
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I find the whole "blaming the pandemic for every failure of medicine" to be sickening and completely unprofessional. Especially when it was no later than 2022 when the pandemic was declared over. After months and months of saying it and insisting that the next wave would be the last. Appalling dereliction of duty. I've rarely seen such a display of ineptitude and irresponsibility.
Patient anxiety grows as B.C. health minister plans changes to virtual group treatment
By Penny Daflos
Published: December 10, 2025 at 10:28PM EST
Patients at a very specialized medical clinic are sounding the alarm about their access to life-improving treatment amid provincial cost-cutting efforts.
As ministries across the provincial government scrutinize spending in an effort to curb the anticipated deficit, a move to shrink virtual group health care is prompting providers and patients alike to speak up.
The B.C. Centre for Long Covid, ME/CFS and Fibromyalgia has a hybrid model with one-on-one appointments and virtual group courses for patients living with chronic conditions that have debilitating effects on their lives, including partial or full disability.
This may or may not be a bad thing, depending on what the clinic was offering.
Patients need to be careful about what they wish for. If we are going to demand dedicated clinics then we need to be clear about what they can and cannot offer us.
At this stage I think they have little to offer us beyond diagnosis and the most modest of management suggestions. Anything beyond that is a waste of time and money, and patients' lives and goodwill.
Do we know how likely it is that seasonal flue triggers ME/CFS? Presumably it is at a lower level than such as Covid-19 and EBV.
When I was in remission early on in the course of my ME, initially triggered by EBV, a presumed bout of seasonal flue triggered a major relapse, that forced me to stop work.
Do we know how likely it is that seasonal flue triggers ME/CFS? Presumably it is at a lower level than such as Covid-19 and EBV.
When I was in remission early on in the course of my ME, initially triggered by EBV, a presumed bout of seasonal flue triggered a major relapse, that forced me to stop work.
Importance: Chronic symptoms reported following an infection with SARS-CoV-2, such as cognitive problems, overlap with symptoms included in the definition of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Objective: To evaluate the prevalence of ME/CFS-like illness subsequent to acute SARS-CoV-2 infection, changes in ME/CFS symptoms through 12 months of follow-up, and the association of ME/CFS symptoms with SARS-CoV-2 test results at the acute infection-like index illness.
Design, setting, and participants: This prospective, multisite, longitudinal cohort study (Innovative Support for Patients with SARS-CoV-2 Infections Registry [INSPIRE]) enrolled participants from December 11, 2020, to August 29, 2022. Participants were adults aged 18 to 64 years with acute symptoms suggestive of SARS-CoV-2 infection who received a US Food and Drug Administration-approved SARS-CoV-2 test at the time of illness and did not die or withdraw from the study by 3 months. Follow-up surveys were collected through February 28, 2023.
Exposure: COVID-19 status (positive vs negative) at enrollment.
Main outcome and measures: The main outcome was the weighted proportion of participants with ME/CFS-like illness based on the 2015 Institute of Medicine clinical case definition using self-reported symptoms.
Results: A total of 4378 participants were included in the study. Most were female (3226 [68.1%]). Mean (SD) age was 37.8 (11.8) years. The survey completion rates ranged from 38.7% (3613 of 4738 participants) to 76.3% (1835 of 4738) and decreased over time. The weighted proportion of participants identified with ME/CFS-like illness did not change significantly at 3 through 12 months of follow-up and was similar in the COVID-19-positive (range, 2.8%-3.7%) and COVID-19-negative (range, 3.1%-4.5%) groups. Adjusted analyses revealed no significant difference in the odds of ME/CFS-like illness at any time point between COVID-19-positive and COVID-19-negative individuals (marginal odds ratio range, 0.84 [95% CI, 0.42-1.67] to 1.18 [95% CI, 0.55-2.51]).
Conclusions and relevance: In this prospective cohort study, there was no evidence that the proportion of participants with ME/CFS-like illness differed between those infected with SARS-CoV-2 vs those without SARS-CoV-2 infection up to 12 months after infection. A 3% to 4% prevalence of ME/CFS-like illness after an acute infection-like index illness would impose a high societal burden given the millions of persons infected with SARS-CoV-2.
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