Help writing an email template to send the NIHR (coinciding with local billboards)?

A

Aaron

Established Member (Voting Rights)
Hello guys, I'm part of the UK billboard campaign with Not Recovered.

Our next billboards go live on May 6th with both of them situated in (fairly!) close proximity to NIHR buildings - one in Bradford (0.7 miles) and one in Leicester (1.7 miles).

A Tweet with the photos and exact locations -



We're hoping to get some sort of hashtag trending and will be encouraging the community to also tag the NIHR Twitter accounts in their posts, but would also like to have some sort of email template ready for anyone to copy and paste and send of their own accord too. Maybe something with a specific demand or request? We've asked on Twitter if we could get a hand and unfortunately we haven't had any volunteers and we don't feel comfortable approaching anyone and putting them on the spot, nor do we feel particularly confident writing something ourselves, but I had a recommendation to post here and see if I could maybe connect with some members who've got experience dealing with the NIHR or writing similar calls to action.

Also just while I'm here if there are any general thoughts or feedback on the billboard campaign or website (www.notrecovereduk.org) please let me know. I will admit the website really isn't great unfortunately as it's only 2 of us and we're brand new to all of this stuff but if there's anything specific we can add or if there's anything there that should be removed please let us know.

Cheers!
 
Aaron said:
Hello guys, I'm part of the UK billboard campaign with Not Recovered.

Our next billboards go live on May 6th with both of them situated in (fairly!) close proximity to NIHR buildings - one in Bradford (0.7 miles) and one in Leicester (1.7 miles).

A Tweet with the photos and exact locations -



We're hoping to get some sort of hashtag trending and will be encouraging the community to also tag the NIHR Twitter accounts in their posts, but would also like to have some sort of email template ready for anyone to copy and paste and send of their own accord too. Maybe something with a specific demand or request? We've asked on Twitter if we could get a hand and unfortunately we haven't had any volunteers and we don't feel comfortable approaching anyone and putting them on the spot, nor do we feel particularly confident writing something ourselves, but I had a recommendation to post here and see if I could maybe connect with some members who've got experience dealing with the NIHR or writing similar calls to action.

Also just while I'm here if there are any general thoughts or feedback on the billboard campaign or website (www.notrecovereduk.org) please let me know. I will admit the website really isn't great unfortunately as it's only 2 of us and we're brand new to all of this stuff but if there's anything specific we can add or if there's anything there that should be removed please let us know.

Cheers!
Click to expand...


hi Aaron. How have you gotten on with this?
 
I think that with The NIHR specifically, they have been having a two tier approach. Up until 2020, afaia the bulk of NIHR CFS funding was going to biopsychosocial, CBT, fatigue & rehab. Apparently they joint funded DecodeME which is now coming to an end. There was no commitment for NIHR funding in the DHSC delivery plan, yet this is the kind of things NIHR have done for long-covid, which They afaics could extend to ME/CFS.

Funding call March 2021
https://www.nihr.ac.uk/news/nihr-launches-second-20-million-long-covid-funding-call/27331

The new funding call will seek to fund research on four areas of Long COVID treatment and management:

  • Pharmaceutical treatments, including the effectiveness of drugs already being used as treatments, and non-pharmaceutical therapies
  • Treatment pathways and service management approaches, including healthcare, community and social care services
  • Diagnostics, including what tests are appropriate
  • Other topics to help and support individuals with Long COVID
Click to expand...
This funding call resulted in the very quick announcement of allocated funding in July 2021
£19.6 million awarded to new research studies to help diagnose and treat long COVID | NIHR
https://www.nihr.ac.uk/news/196-mil...s-to-help-diagnose-and-treat-long-covid/28205
 
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These are examples of what NIHR were previously funding for ME/CFS (from searching s4ME forum)

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery | BMJ Paediatrics Open (2019)
https://bmjpaedsopen.bmj.com/content/3/1/e000525.full

BPSU study - Severe chronic fatigue syndrome / myalgic encephalitis (CFS/ME) | RCPCH (concludes 2021)
https://www.rcpch.ac.uk/work-we-do/...c-fatigue-syndrome-myalgic-encephalitis-cfsme

Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis | BMJ Paediatrics Open (2018)
https://bmjpaedsopen.bmj.com/content/3/1/e000425

Trial By Error: Disastrous Results for Professor Crawley's Pediatric Online CBT Trial | Virology Blog 2023
https://virology.ws/2023/12/30/tria...rofessor-crawleys-pediatric-online-cbt-trial/
FITNET-NHS Study - overview | Centre for Academic Child Health | University of Bristol
  • FITNET-NHS, a Cognitive Behavioural Therapy (CBT) program - delivered online
  • Activity Management - delivered via Skype
https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/fitnet-nhs/fitnet-nhs/

Results of the feasibility phase of the managed activity graded exercise in teenagers and pre-adolescents (MAGENTA) randomised controlled trial of treatments for chronic fatigue syndrome/myalgic encephalomyelitis | Pilot and Feasibility Studies | Full Text (2019)
https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-019-0525-3

Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice, Crawley et al | Science for ME (End Date: 2022)
https://www.s4me.info/threads/in-pr...each-in-routine-practice-crawley-et-al.20930/

For ME awareness 2018 NIHR chose to highlight online Skype therapy as treatment
NIHR Research (@NIHRresearch) on X
https://twitter.com/user/status/994897443140587520
 
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