The #Postcards4LC 'Voice of Reason' Campaign
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Long Covid Awareness Day Number 5
It’s a poignant and potentially difficult Long Covid Awareness Day/Month this year. There’s something about the number 5 that conveys a definitive block of time that has passed with still little effective help, funding or support from the government and NHS. Many of us feel suspended in stasis.
Some good news though, there has been a flurry of Parliamentary questions about Long Covid and ME and positive support from key MPs. Yet, what we have seen in the stock responses from the now disgraced Gwynne and his successor Ashley Dalton MP (but it's early days) is that there is a formula to deflect - stating the responsibility of clinical pathways are now the ICBs (Integrated Care Boards), and to quote the amount of money (badly) spent. But, the problem is that on the ground, in actual people’s lives, we have not seen enough done that significantly helps.
This is amplified by the issue of Long Covid Clinics. Patients are hearing that their clinic is closing down, but many also experience ineffective and tokenistic care. This shows that those in power have not grasped how to handle this devastating illness. We require a fundamental rethink, not shutting clinics down and reducing funding urgency because it’s too hard.
It sometimes feels like we’re stuck on a haunted merry-go-round of bureaucratic false smiles and passing the buck. Even with the empathy and personal experience of Gwynne, the actual power to deliver meaningful change was severely limited. Painfully demonstrated by his fudging on the airborne transmission of Covid.
This is mirrored in the ME Delivery Plan, which Ashley Dalton MP recently stated there will be no additional funding to instigate. We had an idea of this when David Strain was announced as doing the education modules for free and the lack of systemic change and ompf that was apparent in the Interim Plan. Cringe. You can’t have fundamental systemic change on the cheap. The fabulous #ThereForME are doing a #FundThePlan campaign. You can follow this initiative by following the hashtag across social media.
So, the question we have to ask ourselves is who’s hamstringing good quality care? This is a complex question that could have a whole book or PhD written on it. But the TLDR version is that we have people in power who do not want to address the continuing issue of Covid for corporate and political reasons. We have become lost in bureaucracy. Combined with a medical culture that is still locked in the past of psychologising chronic illness, we have a metaphorical mountain to climb that has an elusive magic money tree on top.
But, before we get too ground down, we have to realise that with advocacy and continued pressure, change can happen. Big change. There is a long history of the most profound societal shifts coming from the grassroots, from people forming communities and campaigning for the better. We can’t give up, as there is just too much at stake, even if every tiny improvement is hard won. You are worth fighting for.
And we aren’t the only ones moving for meaningful change. Not Recovered UK are also planning their own public health messaging campaign over Long Covid Awareness month. You can check out themm out on social media (all SM links on their website).
The Plan
We have a plan, and would seriously appreciate your involvement, so we can come together this Long Covid Awareness month. This is also a super opportunity to connect with Ashley Dalton MP, as she is starting her sojourn as minister for health and prevention. Being a cancer survivor, and identifying as a member of the LGBT community, we hope she can bring her Northern Lass gumption to empathise with and work for effective change for people with Long Covid.
So, how do we do this? We know that the effort and exertion for Long Covid Awareness Day is a tremendous demand, especially if PESE (post-exertional symptom exacerbation) is in the frame. TBH it’s a freakin epistemic injustice that we even need to do it. As there should be a whole system (it’s called the social contract) in place to have already done all of this.
To mitigate this, we are taking the whole month - and even before - to ask you to take part in a collective postcard campaign. We will do as much of the legwork as we can to help prep and reduce exertion. Nothing is expected of you on the actual day! One thing we don’t do is forget people with ME (which would be a bit daft as about 50% of Long Covid is ME and about 89% of us have PESE). So, they are included in our campaign, as there is a significant crossover of the need for effective clinical pathways and research funding.
The Mission
Collectively send postcards to 1 or more of the 3 big cheeses for Long Covid Awareness month:
Ashley Dalton MP - Parliamentary Under-Secretary of State for Public Health and Prevention
Sir Stephen Powis - National Medical Director of NHS England
Prof Lucy Chappell - CEO of the NIHR and Chief Scientific Officer of the DHSC
Focusing on what we call the Golden Three, funding for:
Biomarkers
Pathophysiology (biological causes)
Effective drug treatments
Choose
Firstly, choose your big cheese and postcard design. Here we’ve done the hard work for you. We’ve already designed impact campaign postcards specifically for Long Covid. You can pick your postcard here:
Make the most of FREEPOST on Friday 28th Feb and the 1st and 2nd of March to maximise savings!
This also has a double bonus: all the profit from the postcards go to research! (Of course it’s no problem to use your own postcards).
Action
There are several options depending on energy levels:
Write a personal message about your experience with Long Covid (& ME if present) and what is needed.
Use one of the pre-written messages. We’ve given the option to add ME for people who wish to include this. (Some grammar changes might be needed).
Send one blank and let the front message speak for itself.
Send as many as you like directly to the big cheeses from the website (they will arrive in an envelope).
If you are severe or very severe, we can send a postcard for you. Please, just message via DM on social media or our contact form on our website.
Be a cheerleader on social media with our supporter ready-made posts.
Write
Please feel free to use or edit our pre-written messages:
Vanilla
Copy text: 'Over 2 million people are suffering from Long Covid, facing debilitating symptoms that rob them of their health and quality of life. The economic impact is staggering. We must urgently fund research to uncover its cause, find biomarkers and develop effective drug treatments—lives depend on it.'
Or for a bit of fun and to increase engagement, you are more than welcome to use one of these rallying calls in the voice of a marvellous reasonable figure, if a little fierce at times! Please feel free to use your creativity and come up with your own ‘voice of reason’ character, fictional or real. Are you #TeamSpock #TeamBoudicca or even #TeamDeBeauvoir?!? (some editing might be needed to include ME). Each comes with a graphic that you can share on social media.
Mr Spock
Inspiration: “Insufficient facts always invite danger.”
Postcard text Spock style: 'Logically, Long Covid (& ME) presents an urgent need for immediate action. Increased funding for research into its pathology, biomarkers, and the development of drug treatments is critical. The healthcare system must evolve to provide the appropriate care for all.'
Emmeline Pankhurst
Inspiration: “You have to make more noise than anybody else, you have to make yourself more obtrusive than anybody else, you have to fill all the papers more than anybody else, in fact you have to be there all the time and see that they do not snow you under.”
Postcard text Pankhurst style: 'We stand on the precipice of change, demanding what is just! Long Covid has affected over 2 million lives, and its suffering cannot be ignored. We call for immediate funding—research, biomarkers, treatment, and care! We shall not rest until they are found.'
Sherlock Holmes
Inspiration: “The game is afoot.”
Postcard text Holmes style: 'Ah, my dear fellow, Long Covid (& ME) is a most confounding ailment, one that demands our precise attention. We must invest heavily in research to unravel its pathology, identify biomarkers, and develop treatments. Only with proper funding and focus can we hope to resolve this enigma.'
Boudicca
Inspiration: “I am fighting as an ordinary person for my lost freedom, my bruised body, and my outraged daughters.”
Postcard text Boudicca style: Rise, warriors of battle! Long Covid (& ME) ravages our people—its cause elusive, its effects brutal. We demand the resources to uncover its biology, to forge treatments, and to ensure every sufferer receives the care they deserve. Let us unite for them!
Gregory House MD
Inspiration: “Doing things changes things. Not doing things leaves things exactly as they were.”
Postcard text House style: 'Long Covid (& ME) isn’t some passing cold. Over 2 million people are stuck with it, and we’re still guessing. We need funding for real research, identifying biomarkers, and finding treatments. It’s not a mystery—it’s an urgent problem that’s ruining lives.'
Florence Nightingale
Inspiration: “So, never lose an opportunity of urging a practical beginning, however small, for it is wonderful how often in such matters the mustard-seed germinates and roots itself.”
Postcard text Nightingale style: 'The suffering of those afflicted by Long Covid (& ME) demands our compassion and our action. We must urgently direct funding to uncover its causes, identify biomarkers, and develop effective treatments. Let us ensure every patient receives the care and attention they desperately need.'
Simone de Beauvoir
Inspiration: “One’s life has value so long as one attributes value to the life of others, by means of love, friendship, indignation and compassion.”
Postcard text de Beauvoir style: 'Long Covid (& ME) is not a transient ailment; it is a profound disruption of the body. We must demand funding for its pathology, for the discovery of biomarkers, and for effective treatments. The neglected must not remain invisible. Care, not indifference, is our right.'
Address
Here are the addresses to choose from:
Prof Lucy Chappell Chief Scientific Officer
Department of Health and Social Care
39 Victoria Street
London
SW1H 0EU
Rt Hon Ashley Dalton
House of Commons
London
SW1A 0AA
Rt Hon Ashley Dalton
Skelmersdale Ecumenical Centre
Northway
Birch Green
Skelmersdale
Sir Stephen Powis
NHS England10 South Colonnade (10 SC)
Canary Wharf
London
E14 4PU
Social Media
We have also provided a social media pack for you, if you wish to campaign online. It contains all the graphics, pre-written posts, alt-text, tags and even music recommendations for Instagram. If you want to come up with your own character and images, please go for it! The more the merrier! Don’t forget to tag too:
Collective Fist Pump
With this small action individually, we can make a loud noise collectively and cooperatively. We can reach out directly and connect personally to those able to make a difference. Community activism is powerful and we would be honoured and touched if you decide to participate. Thank you.
Note: This is a UK-focused campaign, but if you wish to start a similar move in your own country, feel free to start your own! We’re happy to talk through any of the logistics.
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