Rest, respite and the years' adventures of Long Covid Advocacy
Audio version in Substack mobile app
So, the days of July are coming to an end and at this time of year, we have our annual August break, down tools and retreat to the potting shed for a month. Advocacy is rewarding, inspiring and keeps the flames alive, whilst so much in the world seems to conspire against those who live a Covid-conscious life. Yet, to hopefully keep us going for the long haul total breaks are vital. If you wish to join us in spirit and deed, please do! This also seems an apposite time to let you know what we have been doing this last year and what we have planned too.
We also want to welcome and thank our new subscribers to the website, which has been growing steadily already.
You will mainly see us tip-tapping away on social media, yet there is work that we do behind the scenes, too. The big one for us this year has been finalising our website and going live - hurray! Part of that was also establishing and deciding our legal structure. You might have seen in previous posts that we decided to follow the model like The Good Law Project and Led By Donkeys - maximum freedom of campaign stance and something a bit different from the usual charities. It’s been ‘a process’ as some would say and we couldn’t have done it without some wonderful friends of LCA, especially Kirstie Sivapalan and Cat Fraser.
The good news is that we are now freed up to do more next year - huzzah, as they would say in The Great. It’s been just over a year since we’ve been Substackers and now we have our blog on the website. Next year we seriously aim to spend more time writing. We have already covered the japes and disaster package that is Simon Wessely and part three is looming in the wings, desperate to get out. We’ve looked at the scandalous paediatric Long Covid CLoCK study and The Lightning Process and Gupta Program have also had a turn in the spotlight and melted into a gooey mess under the heat.
We already have planned several articles, one on the serious rising issue of inappropriate safeguarding referrals in families with Long Covid; another on the needs of those with severe Long Covid and ME and the Perception Gap that arises with these illnesses and more.
Yet, you might not know that we also do PPI (Patient Public Involvement). We have been working with the ERASE trial with Dr Mark Faghy which is looking at an anti-viral treatment, Remdesivir, for Long Covid. There has also been a consultation with LINDUS for a treatment trial for ME and we will be collaborating with a PhD who is looking at a genetic hypothesis for ME - more to be announced! If anyone has done PPI, one knows it can be a rather taxing and frustrating process as you beg researchers not to use the CFQ (Chalder Fatigue Scale). So, we have decided to focus on treatment and biomedical trials that actually give patients a chance and that focus on pathophysiology, biomarkers and treatment. No more platforming or endorsing sh*t studies. The main reason for this is that the PPI is often the scapegoat when complaints are made about a study. It seems to be an industry-standard process which sucks.
We also do interviews with Journalists and pass on resources and with our new Media Consultancy we hope to continue with decent PR for people with Long Covid and ME. There has been some excellent investigative journalism this year. Two mentions that stand out that we have been involved in are Rachel Schraer’s examination of the Lightening Process and Jessica Rawnsley’s heartbreaking look at social service involvement with children with Long Covid because of disbelief and systemic prejudice. Another highlight for us was our involvement with the University of Bournemouth Festival of Science, which looked at: Long Covid: Myths, Misconceptions and Lived Experience, which, dagnammit, truly understood the misuse and abuse of the bioPsychoSocial model.
Other quick mentions, before we all get too bored, that we’ve been involved with is consultation with the new Long Covid and ME Turnto app, which is worth a look at, especially for the latest research. Our video for the just-out-of-this-world Unite to Fight conference whose presentations by leading experts blazed its glory on the global stage. The talks are now available on their YouTube channel if you need any of the presentations given. And of course, let’s not forget our Star Trek, sci-fi-themed Long Covid Awareness Day campaign.
Last but not least is politics. It’s been an eventful year in the UK with the general election, the new Labour government and possibly a world-changing election coming in the US. Advocacy is inherently political, a body politic, from stance and philosophy to the pragmatic reality that systemic change and social narrative come from legislation from government. It is one reason we chose not to be a charity or CIC, so we could directly comment on government policy.
We created a handy #ElectionWatch on social media, following the policies and stances on disability and Long Covid. Whilst some parties, notably the Libs Dems and Greens, had actual policies on disability and Clean Air, Long Covid is still somewhat of a taboo, with it being more akin to ‘the Scottish play’ than a national emergency. Hot potatoes with hot sauce on is what Long Covid and the thought of institutional responsibility is to politicians.
Keyworkers Petition UK guest wrote an excellent Substack for us on this issue of disability and the General Election. The plus side is that we now have a minister of Health and Social Care, Andrew Gwynne MP, who has Long Covid. So he has lived experience and will hopefully bat for the team. There have already been ministerings of activity when he wrote on the Long Covid Kids Instagram feed:
I’ve been having lots of meetings about Long Covid, including impacts on children. I’ve also asked for a series of reports on it to read and consider. Andrew Gwynne MP
Yet, Gwynne is in a tough spot. The narrative from on high is that the pandemic is kaput. There’s to be more NHS privatisation and Wes Streeting can’t say Long Covid. The four actions we would hope, pray and beg (if needed) to see from Andrew would be:
A clean air act, very much in line with the Indoor Air Quality and Healthy Schools Act sponsored by Tonko and Fitzpatrick in the US
£100 million a year for biomedical research for Long Covid and ME
To initiate a statutory Inquiry into ME
A commissioned NHS protocol for those with severe and very severe ME and Long Covid so no more people die, like Maeve Boothby O’Neill, or feel they have no choice but to avoid hospital care
We sincerely hope to see Andrew and Wes engage with the fantastic #ThereForME campaign led by Karen Hargrave and Emma Gore-Lloyd. Aiming to speed up compassionate, effective, safe care for those with ME in the NHS, something which we fully endorse and support.
So, other things to look forward to in September! We have our designs ready and the shop is nearly ready to go for its launch, boldly going beyond boring brand t-shirts. Our last note of surprise is one of our members has penned a dark academia novel based on the “greatest medical scandal” of the 20th Century. It’s back from the beta readers with some 5-star rankings and readers wanting to read it more than once! So, if you know any literary agents, please send us a message…
We look forward to seeing you again in September and for another year of spicy advocacy.
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