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
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… 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.
