Crowdfunded awareness campaigns including billboards

Posted in 2020!

 

One of the billboard campaigns in Canada got the activist responsible interviewed on national news. Haven't watched. But for one billboard, this is one hell of a good ROI.

https://twitter.com/user/status/1736366905512845488

 

Moved posts

Council responds to billboard criticism from long Covid campaigners

The Medical Research Council has reacted to criticism by long Covid campaigners who put up a large billboard near its Swindon office.

Campaigners from Not Recovered UK say they have been abandoned by health professionals who have failed to find treatments for illnesses such as ME and long Covid.

The group’s nationwide campaign uses huge billboard adverts to highlight what they feel is a lack of effective treatments or help for sufferers of chronic illnesses.

"Aside from raising awareness and calling for appropriate research and treatments, the billboards are a push back on the minimising and harmful narratives these patients will be cured by exercise, diet or mindfulness techniques,” said Aaron Campbell, who founded the campaign.

"It is time that attitudes towards 'invisible illnesses' are changed.”

The Swindon billboard appeared on Rodbourne Road, a mile and a half away from MRC, which is based in the UK Research and Innovation building at Polaris House in Swindon.

Not Recovered UK say they purposefully put the billboard there to get the attention of medical professionals.

Speaking about the criticism, a spokesperson for MRC has said: “UK Research and Innovation’s Medical Research Council funds research to improve human health, including early research through to early phase clinical trials.

“Applications for research funding are judged in open competition and the primary considerations in funding decisions are scientific quality and importance to human health.

“MRC has prioritised research into chronic illnesses such as ME for a number of years, co-funding a Priority Setting Partnership to identify research priorities in this area and maintaining an open highlight notice to encourage ME/CFS research.

“In addition, in 2020, we joined the National Institute of Health and Care Research (NIHR) to support research into long-COVID.”

According to the research council, MRC and NIHR have since 2020 collectively awarded more than £50 million for research on ME/CFS and long Covid.


https://uk.news.yahoo.com/council-responds-billboard-criticism-long-150000923.html

 

This is really the best way to achieve something with those billboard campaigns. They need to be placed where medical authorities and the people making those decisions are. It won't sway them, but it will be massively shameful once something happens and they insist that they had no way of knowing or of doing anything different from what they did.

It's also telling about the mentality in the culture of medical research that they point to millions that were badly spent, including on people who literally don't believe in chronic illness, have absolutely nothing to show for it, and still think they did a good job. In any profession, when you fail to deliver anything, especially when you waste millions with nothing to show for it, you're fired. You are probably even unemployable in the industry. The culture of complacency, where results don't matter one bit, is a major factor in why medical research delivers so little.

 

It's also telling about the mentality in the culture of medical research that they point to millions that were badly spent, including on people who literally don't believe in chronic illness, have absolutely nothing to show for it, and still think they did a good job.

 

Just wanted to post a montage of the boards in the UK so far.

https://twitter.com/user/status/1776263776506904840


Also for anyone who missed it there was also a short focus of the boards on an ITV documentary earlier in the year. The person being interviewed is a fantastic volunteer for Long Covid Support -

https://twitter.com/user/status/1766639506982134142

 

This campaign is awesome. Thanks for being awesome @Aaron.

 

Hey guys, we got picked up by a local newspaper yesterday -

https://twitter.com/user/status/1790131113634963608


And tomorrow for Awareness Hour on Twitter we're encouraging people to Quote the Tweet of the billboard article and use the hashtag '#DontForgetME' as well as tagging the Twitter handles of the NIHR staff in the Bradford and Leicester facilities.

https://twitter.com/user/status/1790479954636914997


We also just sent off the letter that the community worked on and emailed it to several NIHR inboxes addressed to Lucy Chappell. We're hoping with the local press, the Twitter work and the emails that we might get a response from them in regards to investing in more research. Please get involved if you can!

 

https://twitter.com/user/status/1813574673835131390


Super frustrating response to the May #DontForgetME campaign. We’re needing some new ideas for future billboards - possibly the newspaper articles from the Royal Free account showing the ME/CFS coverage in the 1950’s and how little progress has been made since then? - and willing to consider anything and everything.

Same with new locations. We tried the MRC in Swindon and the NIHR now but happy to keep pushing these targets or go somewhere else.

Hoping to get a follow up story with the Leicester press too expressing how disappointed we are with the response since they covered the billboard when it went up there.

 

Absolutely ludicrous that they're spinning REGAIN as "high quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for long COVID". It's not high quality evidence; it's very low quality evidence because it's unblinded and utilised exclusively subjective outcome measures. Secondly the MCID wasn't reached on the primary HRQoL outcome measure so what clinical benefit? Also "in this trial, practitioners were also appropriately trained in risks relating to post-exertional malaise." - were they really?

What utter drivel from NIHR.

 

I’m sorry about that. Full response below -

‘Thank you for your email from 12 May on behalf of the “Not Recovered UK” long COVID and ME/CFS patient community. I apologise for the delay in response, which was due to
correspondence rules around the General Election.

I would like to reassure you that we are committed to taking a comprehensive and
compassionate approach to supporting individuals with ME/CFS and long COVID,
recognising the unique challenges they present. The Government is aware that ME/CFS and long COVID can have a devastating effect on those who suffer from them and recognises that they are under-researched areas. With this in mind, I would like to update you on recent activities in this area.

DHSC published ‘My Full Reality’, an interim Delivery Plan for ME/CFS in August 2023,
which sets out a number of actions to improve the experiences and outcomes for people with
ME/CFS through an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision.

Supported by DHSC, the UK Clinical Research Collaboration (UKCRC) convened a Research Working
Group to explore the barriers facing researchers in this area. This group has met regularly for two years and outputs include the development of the research chapter of the interim Delivery Plan, commissioning an evidence synthesis map of ME/CFS research, as well as a number of ongoing workshops on ME/CFS research.

Alongside the publication of the interim Delivery Plan, we ran a public consultation to gather the views and experiences of healthcare professionals, organisations and individuals with lived experiences of ME/CFS.

The aim of the consultation is to build a picture of how well the interim delivery plan identifies and meets the needs of the ME/CFS community, and to understand where there are any gaps where further action may be necessary. The consultation received well over 3,000 highly detailed responses, which are in the process of being analysed. Publication of the response to the consultation and a final delivery plan are questions for the incoming government.

You have highlighted important points about the UK research landscape for ME/CFS and
long COVID. The National Institute for Health and Care Research (NIHR) and Medical
Research Council (MRC) are committed to funding high-quality research to understand the causes, consequences and treatment of ME/CFS and are actively exploring next steps for ME/CFS and long COVID research.

We recognise that in ME/CFS and long COVID research there are particular challenges
preventing scientific progress and are working with other relevant funders to develop
strategic solutions. The NIHR has worked closely with the MRC on ME/CFS and long Covid research for this reason, and we will continue to do so.

The NIHR welcomes fundingapplications for research into any aspect of human health including ME/CFS and long COVID. These applications are subject to peer review and judged in open competition, with
awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

Unfortunately, despite our efforts to
stimulate high quality research in this area, we have received a low number of applications in
this space. We will continue to work with the community, including yourselves, to identify
new solutions to increase research in this area.

But we have made some progress. As you are aware, through the NIHR, DHSC has co-
funded, with the MRC the £3.2m DecodeME study into the genetic underpinning of ME/CFS.

The study will analyse samples from 25,000 people with ME/CFS to search for genetic
differences that may indicate underlying causes or an increased risk of developing the
condition. This study aims to increase our understanding of the disease and therefore
contribute to the research base on diagnostic tests and targeted treatments for
ME/CFS. We hope that DecodeME will empower future research by revealing genetic risk
factors and facilitating future studies through the provision of an open-source data and
sample base.

For long COVID research, we have invested over £50 million through two specific research
calls, co-funded with UK Research and Innovation (UKRI). The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and
interventions, as well as to evaluate clinical care. The NHS and scientific community are
working at pace to progress long COVID research, including for children and young
people. As findings emerge from current research, we encourage researchers to apply forfunding to build on and develop the newly established infrastructure, partnerships, and
research capabilities. Government research funders remain available to support long COVID
researchers in their applications for funding.
As you know so well, long COVID is a complex multi-system disease and may in fact
comprise a number of syndromes with different underlying mechanisms. While there is no
single treatment for long COVID, there are treatments available to help manage some of the
symptoms.

We have funded clinical trials to test and compare different treatments such as
antihistamines, anticoagulants and anti-inflammatory medicines, as well as trials such as
REGAIN, which combine exercise with behavioural support, to measure their effects on
symptoms, health and other outcomes. Specifically, the REGAIN trial is the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for long COVID. In this trial, practitioners were also appropriately trained in risks relating to post-exertional malaise. Many clinical trials are underway both in the UK and
internationally.

Finally, we have both been encouraged by emerging findings of potential mechanisms
underpinning long COVID, offering potential future pathways to therapeutic options for these patients and we hope to see new insights on ME/CFS emerging from the DecodeME programme in the near future. While ME/CFS and long COVID should not be seen as synonymous, the opportunity for scientific synergy is clear.

I hope that this response provides reassurance that we take seriously the challenge of ME/CFS and long COVID and are committed to ensuring that those living with it have the opportunity to participate in and benefit from research, with the aim of improving outcomes.

Yours sincerely,’

 

As one of the authors of the letter, the answer to that is to reply and say actually no, it hasn't provided any reassurance, in fact, the exact opposite. It is frustratingly disappointing, as this is the same information that has been provided to anyone who has asked for the last two years. And with regard to the MRC highlight notice it is the same comment we have received for the last 22 years and that that suggests something is not working and that the issues have not fully been understood.

There have been some useful replies to this on Twitx which, if collated, would be the basis of a useful response.

I would also take the opening of the reply to suggest that it's great that they have replied and we would love to open up a dialogue and explain all the ways that we need things to change to actually make progress.

Given how public this campaign has been, it would be great if we could enlist the support of ME Research UK, Karl Morton and Danny Altmann and get their comments on what is not working and why.

We also need to point out that the delivery plan has completely stalled with the "collating responses" having taken almost a year at this point and the delivery plan itself had no timeline, no commitments only "suggestions" and wasn't backed up by any promise of funding. What's the socially acceptable way to say "damp squib/cluster fudge"?!

Anyway, in my opinion, I think that this should be used as the opening up of a polite, well referenced and supported conversation, not the door slam, job done, question answered response that they think it is.

I would also suggest posting any replies publicly and making it an email campaign to all those shiny new MP's - this is what NIHR said vs this is what we actually need.

If we can get any journalists interested too...

Just my thoughts though.

 

USA campaign has started and raised over £1,000 in 4 days.

The person in charge of this seems very, very in tune with the political landscape over there and best way to maximise revenue on any boards there and seems to have some high profile contacts so let’s see…

https://www.gofundme.com/f/billboar...t_ft&utm_medium=customer&utm_source=copy_link

As for the UK campaign, Alex is gonna be working on a response to Lucy with some collaboration from community members again.

 

Guys if anyone wants any of these car stickers or leaflets for free please DM me!

We’re getting some decent website traffic now and regular donations to our campaign, also hoping visitors will be checking out the Network page to visit the various charities, researchers and advocacy groups too.

https://twitter.com/user/status/1833854617739731074


https://twitter.com/user/status/1824909850897424852


For a better look at everything you can check out this page here -

https://www.notrecovereduk.org/category/all-products