The UK Covid Inquiry - 2023 onward

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JohnTheJack

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This thread has been created by merging threads and copying posts form UK news

S4ME and the UK Covid Inquiry

I'm still not spending much time online unfortunately so this may have been discussed elsewhere. Apologies if it has.

As those of us in the UK are aware the Covid Inquiry is just getting underway. Its brief has been interpreted by the Chair to be very broad.

It seems to me that preparedness for Covid and (to those of us who know about ME) the inevitable Long Covid was massively diminished by 30 years of bad research into ME and the folly of the GET-CBT approach, a failing that is underlined and endorsed by the recent NICE guidelines.

It should, and I think if put to the Inquiry may very well be, considered by it. If so, this would be a great opportunity to have an official record of the appalling history of ME.

Has it been discussed whether S4ME should apply to be a core participant for the appropriate module? I think we should, and given the broad parameters and powers of the Inquiry to grant it, I think there is a good chance of being successful. The fact that we were involved officially with the NICE guidelines could play in our favour.

Even if we do not succeed with being made a core participant, we should, I think, definitely make a submission to 'Every Story Matters' and encourage patients who are well enough to do so.

Inquiry FAQs
https://covid19.public-inquiry.uk/frequently-asked-questions/

Core Participant Protocol
(PDF) https://covid19.public-inquiry.uk/wp-content/uploads/2023/05/Core-Participant-Protocol.docx-1.pdf
 
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Fine ideas, the standard challenge though will be finding volunteers who have the capacity to work on it. I don't, mainly due to my involvement in DecodeME (if you haven't yet take part here), hopefully there might be some who can take these ideas forward.
 
I think that's an excellent idea, @JohnTheJack, if we have UK people available and with sufficient energy to do it. Perhaps a first step would be to find out whether any UK based ME organisations are already planning any action on this.

If it were to be an official S4ME submission, the committee would need to agree and have a role in coordinating or delegating the action. Given that we are an international organisation, with only 4 of our 8 person committee being UK based, and other countries probably having their own Covid enquiries, it may be more than our committee want to take on. I'm not on the committee, so I can't speak for them. Edit - as far as I'm aware they are all very busy with other ME related actions.

I personally don't have the energy to work on this, but if others want to, I'd be pleased.

Edit. Crossposted with Andy.
 
I agree this is an excellent proposal in principle, but myself am unable cognitively to initiate/organise information/submissions and am unable to sustain any significant energy commitment for any project. If there were members in a position to lead a response I would be happy to offer moral support and to comment on any materials produced, but understand that this would be for them a significant undertaking potentially of the scale of our response to the NICE ME/CFS guidelines review so would not wish to try to pressure anyone to take it on.
 
This is a fantastic idea!

I’d be in if not for my long long-COVID-19 that has burned up the charcoal of my cognitive abilities that was all that was left over after the ME flames… :bear:

But if anyone is up for it I’d contribute whatever I can from my perspective as someone who got run over by the bus twice.
 
Is it possible that if ME gets covered in some way as part of a long covid enquiry, it might not be covered in as much detail or with nearly as much attention as it needs, then hope of a future inquiry might be lost as it could be judged to have been already covered?
 
I think if ME got referred to it would wet people’s appetite for more, of the scandal, and be a foot in the door.


I certainly agree those with an interest in saying ‘we’ve done that’ absolute would. But I don’t think they’d be successful with that tactic.
 
Copied from UK news

Opinion piece in the BMJ

Hancock’s covid inquiry evidence offers few clues as to why long covid was sidelined

Questions remain as to why long covid wasn't a political priority, writes Ondine Sherwood

In the early weeks and months of the covid-19 pandemic, it was left to patient advocates like us at Long Covid SOS to bring the issue of long term morbidity after a covid-19 infection to the notice of the UK government. Despite a series of letters to policy makers, some of which were published in The BMJ,12 we and other groups struggled to get our voices heard. Notwithstanding the creation of NHS England’s long covid taskforce and ministerial roundtables on the subject, it became clear to us that policy making decisions throughout the pandemic were not being informed by the prevalence and risk of long covid. This was reinforced by the dearth of public messaging on long covid, resulting in widespread ignorance of the condition and missed opportunities to promote protective behaviour.

We are part of a group of long covid charities who are core participants in the UK covid inquiry. The Long Covid Group has established six framework questions that we would like module 2 of the inquiry to answer.3 We looked to Matt Hancock to provide clarity and answers to two of these questions: firstly, was the prevalence and the risk of long covid taken into account when decisions, like the imposition and then easing of non-pharmaceutical interventions, were adopted; and secondly, how, and to what extent, did decision makers warn the public about the risk of developing long covid and take the disease into account in public health communications.

https://www.bmj.com/content/383/bmj.p2902

Closest it gets to mentioning ME/CFS
"Another theme in Hancock’s evidence on long covid was his tendency to blame clinicians for the lack of public campaigns and delays in action, deflecting the responsibility away from policy makers. Describing long covid as a “range of conditions,” he claimed that the NHS “found long covid quite difficult to categorise at first.”6 This rather contradicts his assertions that Chris Whitty, the chief medical officer for England, had raised concerns early on about post-viral syndromes, which are of course nothing new, and that he was “alive” to the risk of post viral syndromes even before the infection “reached our shores.”6"
 
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Merged thread

Covid Inquiry - UK -Long Covid Kids update July 2024

COVID inquiry -info from Long Covid Kids. Given the significant risks kids were exposed to ( and continue to be without much mitigation) , and the lack of vaccinations for kids , it may be that there is a bigger picture being managed.
New open letter re denial of core participant status and reliance on UK Government understanding.

Please support - professionals and group representation particularly welcome.

Link to open letter page
Long Covid Kids | Charity | Post Covid Syndrome


The UK COVID-19 Inquiry found that Long Covid Kids and Long Covid Scotland had met the legal test of having “significant interest” in the matters being investigated and therefore could be delegated core participants. However, we are shocked and disappointed to share that, in her discretion, the Chair, Lady Hallett, declined to do so saying that she was confident that the Inquiry would be able to explore the Government’s understanding of the risk that children might acquire Long Covid without their being core participants.
In response to this surprising decision, Long Covid Kids and Long Covid Scotland have written an open letter to the Inquiry, garnering support from over 50 signatories from charities, organisations, clinicians, ministers, and other backers
 
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Copied from UK news

‘I grieve for the person I was before' - Covid inquiry to begin new phase
Jim Reed, Nat Wright
9 September 2024, 01:10 BST
Updated 6 hours ago
https://www.bbc.com/news/articles/crrlv0enpeno
The public inquiry into the pandemic will start 10 weeks of hearings on Monday looking at the impact on patients, healthcare workers and the wider NHS.

Covid patients have been admitted to hospital more than a million times in the UK since the virus emerged in 2020, while countless others have had care for other conditions disrupted.

The third stage of the inquiry, external will also examine the impact on NHS staff, the use of masks and PPE in hospitals, the policy of shielding the most vulnerable and the treatment of long Covid.

And for the first time, the stories of more than 30,000 healthcare staff, patients and relatives will form part of the material entered into evidence.
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copied from UK news

I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had trained critical care nurses looking after only one or two, and the certainty that if there had not been lockdowns the NHS would have been completely overwhelmed, with many more deaths. And the lack of proper PPE. Given how understaffed and under resourced the NHS was and still is, lockdowns were essential if we weren't to lose many more people, probably including some who now complain about lockdowns.
 
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copied from UK news

COVID inquiry, CMO of England (Chris Whitty):
@covidinquiryuk - @CMO_England
on #LongCovid research: “It is absolutely an area we need to continue to do a lot of research in because there are clearly a lot of people affected & will continue to be”
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https://twitter.com/user/status/1839280762471792752
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And yet, nothing. Continued denial. Not much to say about the £50M they mostly wasted on pet projects or known deniers of chronic illness. It yielded absolutely nothing because it was poorly allocated. Some of it even was pretty much "Long Covid? I don't know, doesn't seem to be anything there".

They seem to think they did an OK job. Some mention at the end of looking at the long-term consequences of other infections. Maybe it was cut but doesn't seem to be any awareness of how this relates to the big controversy over chronic illness and ME/CFS. Which itself is the controversy behind the controversy, the cluelessness about the most basic facts.

Twitter reply from Danny Altmann, one of the few researchers with a credible proposal who was funded, but with a very small budget:
Yes @CMO_England - we did get off to a great start here with #LongCovid research, then all govt and funder interest was lost along with momentum, so none of our 2m patients helped - ‘a job half done is only just begun’. Cost to the economy, billions, cost to the sufferers, total
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https://twitter.com/user/status/1839287022655017041
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Moved post

I’m watching today’s morning session with Johns campaign and think it is worth some of us listening for what we might learn from it

I’m not on top form to put suggestions myself but this lady is talking about the approach for people who had dementia eg during lockdown including in hospitals

and she gives really interesting insight about how the different aspects work and can be communicated with and good points about how eg in the Uk ‘we have good law (equality act, human rights, mental capacity) but how it is implemented is the difficult bit

dementia mightnt be the same of course but I can see the parallels of issues (vulnerability) and this lady seems to give a good overview of how they do things and what they know and have spotted about cultures.

she talked about every hospital having a Patient experience unit for example
 
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I'm surprised there hasn't been more posts about the inquiry because I keep seeing clips popping up and the discussions are really illuminating. The questions are often very good. The answers are generally awful.

There is a lot of discussion of Long Covid, the lack of preparedness, lack of services, testimonies from people about how useless the clinics are, the huge economic costs, and so on. So many about the intense groupthink and echo chambers where decisions were made, the absurd failures of public health experts to even consider airborne transmission (which they obviously understood but they're all locking rank).

As far I know this is the only country where anything like this is going on. Or maybe the only one so visible. But damn is it good at exposing how the health systems dealing with this are completely unfit for purpose.
@RachelReevesMP - take a listen to Prof Brightling’s @covidinquiryuk evidence on #LongCovid: “I would have thought the day before a budget that actually taking into consideration not just the personal impact but the society & economic impact is really important”
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https://twitter.com/user/status/1851298657632731268
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Seriously LC features heavily all throughout the inquiry. In many cases better and more realistically than most studies. Because it features the words of people who experience(d) it raw, unfiltered, without interpretation.
"A lot of people pooh-poohed the idea of Long Covid, and still do" Today @covidinquiryuk is hearing from Patricia Temple, a nurse who has #LongCovid She caught #Covid from a patient
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She believes there were systemic failures especially in infection prevention and control She had to fight really hard to get support for her #LongCovid "I think they let us down as nurses" - she feels that nurses are considered 'disposable'
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Everyone with a chronic illness like LC or ME/CFS is considered disposable in the eyes of medicine. But you have to live it to understand that, and by that time it's either too late, or because it's so oppressive and broken, when people improve enough they just move on. So it never stops.
https://twitter.com/user/status/1853404803080081859
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NelliePledge said:
Wow he really had nothing there, should have had a line to take in his briefing. Rambling waffle off the top of his head. No wonder we’re in such a mess.
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The lack of briefing is much more illuminating. This is his operational level of knowledge in his day job, not a bullet list made by a staffer to pretend like he has any real awareness. It shows that it's simply not part of anything they do. Which is obvious, but people reveal so much more this way.
 
It's the complete disconnect with reality that angers me the most, how facts literally don't matter one bit. She sits right there in an inquiry saying things she obviously knows are complete bullshit. That they not only did repeat exactly this, but that this is still exactly where ME/CFS remains, how nothing has changed because this was the only option that was allowed to happen. The same everything, even.

It's like they're talking about fictitious things, toy models, playing pretend doctor, whatever. None of this is real. She knows this. They all know this. Or at least they are all smart enough to know this is all a bunch of hot air. Even this framing of "purely psychological" is part of the Big Lie, how the deniers all pretend something they don't really believe in, that they really don't care about any physiological aspects because of the logical fallacy of "all tests are normal anyway". And this is said 4.5 years into it, after it's indisputable that this is what happened and will continue to happen.

There's even a line she says about how some (heart and strokes) team telling her how they're used to dealing with this. Which they're not, everyone is completely stuck with nothing to work with, the same situation ME/CFS was 40 years ago, and remains to this day. Either these people are lying their ass off, or they are completely delusional about reality. Or a combination of both, but there's no other possible factor here.
“We didn’t want to allow a repetition of ME where for some time there was a refusal to accept it as a physical condition and not say it was purely psychological”
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https://twitter.com/user/status/1858916446069203240
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