As our working year draws to a close, we have been reflecting on our achievements of 2022 and look ahead to hopefully brighter times in 2023.
We started the year by warning exercise professionals about Post Exertional Malaise in M.E/C.F.S and Long COVID, as we discussed in the related blog post, this particular issue was simply too vast for us to tackle as a micro-entity Community Interest Company. An entrenched view that exercise is a ‘cure all’ needs to be updated and overturned and this requires staffing and funding. Something we do not have. However, we have taken every opportunity to educate people in the fitness industry about this issue when the opportunity has arisen.
Culminating in 2022, we have worked with local government, NHS, public health teams and Healthwatch in Portsmouth in a Long COVID Working Group. This is something that our Managing Director Sally Callow asked to be set up in Autumn 2020 and she attended regular meetings for 18 months to ensure that appropriate care and support was available for Long COVID patients. Sally had always stressed that a communication strategy was key in terms of how to self-manage symptoms at home in the first few months after acute onset (to reduce chances of becoming chronically sick and/or reducing the severity of chronic illness over the longer term). Many people are on waiting lists for Long COVID clinics and other referral pathways and so we were delighted that the Communications Plan was launched in November 2022.
Sally left the Portsmouth Long COVID Working Group to concentrate on our efforts in Wales. We had started to look at bringing about social change in Wales at the start of 2020 but our plans were paused for a while due to the pandemic. We started talking to Members of the Senedd in December 2021 in online meetings. We were looking to identify problems and solutions that we could bring to the fore and address for Welsh people living with M.E/C.F.S. These meetings and positive conversations are continuing as we delve further into where M.E/C.F.S sits politically in Wales. There seem to have been a lot of meetings over recent years but no change has been felt by those living with M.E/C.F.S. In December 2022, there are still no referral pathways for M.E/C.F.S, and as such the NICE guideline cannot be adhered to. In early Summer 2022, we joined the ‘Cardiff and Vale long-term conditions co-production meetings’ and were happy to be ‘working’ with like-minded individuals and organisations in Cardiff and Vale with all members of the group looking to improve the lives of chronically sick people. So far, this co-production has meant we have helped to ensure the Cardiff and Vale website content is appropriate for M.E/C.F.S and we have been assisting with the creation of a new ‘toolkit’ resource for chronically sick people in the Cardiff area.
A direct outcome of the work mentioned above was that we successfully bid for funding from the National Lottery Community Fund – Wales. This funding means we will be able to deliver a bilingual face-to-face training event in Cardiff on 26th April 2023 for professionals living and working in Wales who have a duty of care over M.E/C.F.S patients. We are in the process of inviting members of the Senedd, healthcare professionals, and representatives from local schools, colleges, universities and businesses to attend this training to learn about this poorly understood disease and create a better understanding around appropriate support and care needs. We strongly believe that education is the only way forward for this neglected patient community and are very grateful to the National Lottery Community Fund – Wales for enabling this step in the right direction.
Our work on the human rights abuse of M.E/C.F.S patients by UK medical establishments has been ongoing for over a year. We have made no progress since this blog was written in January 2022 despite many more emails being sent to various UK Government departments, the WHO, UN and human rights organisations. The last communication we received from the Health and Social Care Select Committee (7th December 2022) is below-
Dear Sally and Chantelle,
Thank you for your email about how people with M.E/Chronic Fatigue Syndrome is treated.
I recognise that you raise important issues. Currently, however, the Committee, is engaged in a number of substantial inquiries, and so this is not something that we are likely to be able to examine in the near future. I have, however, noted the concerns that you raise.
Steve Brine MP
Chair, Health and Social Care Committee
Our work continues, this is an important issue and not one we will be walking away from any time soon.
We were a finalist in the Learning Excellence Awards in March 2022! It’s fantastic to see our hard work being recognised and to get back to our roots as a training provider! Whilst we didn’t win, we were pleased to be a finalist alongside so many other excellent organisations.
The Office of National Statistics COVID19 questionnaire (read blogs here and here) is a valuable piece of research that informs policy in the UK, yet it has always puzzled us why Post-Exertional Malaise was not listed in the ‘Long COVID’ common symptoms list. So, after 9+ months of emailing back and forth, we eventually had an online meeting with Daniel Ayoubkhani, Principle Statistician Methodologist on the COVID19 study. It was a very positive and enlightening conversation and we are now hopeful that PEM/PESE will be included in future surveys – subject to funding and other factors.
A lot of our work for the past two years has been on tackling the exclusion of M.E/C.F.S from the COVID19 narrative in the UK. This work has involved many meetings and email threads with MPs from both sides of the house, it’s also been a topic of conversation with Members of the Senedd. This exclusion is both harmful to the many hundreds of thousands of Long COVID patients who meet our diagnostic criteria and have got/will get a M.E/C.F.S diagnosis as a result of COVID19 and the wider M.E/C.F.S community who are being additionally stigmatised and neglected as a direct result of this exclusion. Inclusion matters. This is an ongoing project for Stripy Lightbulb CIC.
We were delighted to present a webinar for Social Enterprise UK in October 2022 on the subject of ‘Invisible Disabilities: Challenges and Solutions Within Working Environments. We are proud to be a member of Social Enterprise UK as a Community Interest Company working in the third sector. If you would like us to deliver a training event/webinar for YOUR organisation, please get in touch with us via the contact form on stripylightbulb.com.
As you can see, it’s been a busy year even if actual tangible change can’t yet be felt by the M.E/C.F.S patient community.
We’d like to take this opportunity to thank you for your continued support.
We wish you all a Merry Christmas and a Happy New Year!
2023, here we come!