The Fibroduck Foundation was a small charity founded by Jamie Goodwin in 2012 to raise funds for biomedical research into fibromyalgia.
The charity closed down 30 June 2019, having raised and donated £18,000* to support a major biomedical research study into mechanisms of pain and fatigue in Fibromyalgia being carried out by Brighton and Sussex Medical School, part of the University of Sussex. You can read more about the study below.
Those of you who met Jamie Goodwin will be sad to know that she passed away in November 2019 from cancer. We are lucky to have worked with such an amazing person as our charity’s chair, and we are so proud of all her achievements.
We would like to thank all of our supporters and fund raisers who have supported us so brilliantly. We think you are all amazing, and we would not have been able to make this donation, and make a real difference to future treatment, without you. We will never forget all the good times and the love and sense of family we’ve experienced online and through our events. We hope that you’ve had fun and made good friends through the Duck.
The Fibroduck name and trade mark
We purchased the Fibroduck trade mark using our own personal funds. We think that if someone else wants to pick up the baton and raise funds for research, then they really need to come up with their own ideas. A fresh approach and a fresh name and logo will attract new support.
So, Fibroduck is going to retire and fly off to the big nest in the sky. Please do not make and/or sell Fibroducks from now on, or use Fibroduck for events or in promotional material, because we don’t want purchasers or donors to think the funds are coming to us. Funds raised in this way could potentially be considered as fraud.
Fibroduck’s Public Liability Insurance
The PL policy that covered a number of patient support groups lapsed with the charity. It’s not possible to insure a charity that no longer exists. It means that support groups who were covered by our PL policy should have made alternative arrangements for cover from 30th June 2019.
If you are fund raising for fibro research, please note that you will not be covered by the Fibroduck Foundation public liability. You will need to make your own inquiries to make sure you are covered by your own insurance, or that of any event in which you are participating, or that of the venue concerned.
Posters and documents downloaded from the old Fibroduck website
We’re happy for people to use and pass on the documents and posters we created, but please always credit the Fibroduck Foundation. We might not exist as a charity anymore, but that was our original work and took time and effort to create and the charity should be credited.
Is there still a Fibroduck page on Facebook?
The Fibroduck Facebook support group was archived on 30th June 2019. The Facebook page for the Fibroduck charity is still live, because we will use it to post links to results and news from the BSMS study.
BSMS research team can be followed on Twitter @BendyBSMS
* We have made an initial donation of £18,000 to the University of Sussex, specifically for the Fibromyalgia study by the BSMS. There are costs associated with closing down a charity, so we have reserved some funds to do that. We don’t know exactly how much we will need to spend on this. Whatever is left will be added to the initial donation and given to the Sussex University team, as they plan a number of studies going forward which will benefit the Fibromyalgia patient community and are in line with our charitable aims.
More information on the Fibromyalgia study
The leaders of the Sussex research team are also clinicians who treat Fibro patients. You can read more about their study here: https://theconversation.com/fibromyalgia-researchers-trying-to-fathom-the-causes-of-this-painful-condition-102946
The full title of the study is: ‘Viscero-sensory Processes and Neural Responses to Inflammation: Mechanisms of Pain and Fatigue in Fibromyalgia’. The short name for the project is: ‘Mechanisms of Chronic Pain and Fatigue’.
The primary aim of the study is to identify the main causes of pain and fatigue in fibromyalgia so that evidence-based treatments can be developed.
The funds raised by The Fibroduck Foundation will be invested in this multi-faceted biomedical study to help the team extend their work
The specific areas of study in which we are investing is twofold:
The costs of up to 12 months of research staff time for analysis and interpretation of data already generated by the autonomic dysfunction arm of the project, and
Specialist consumable support for a new transcriptomic analysis arm of the project.
Explained in plain English
The University research team has produced far more data than it has the resources to analyse. With this donation, they will now be able to process, analyse and disseminate critical physiological data that has already been collected as part of their project. It is hoped that this data will confirm the importance of autonomic dysfunction (including orthostatic intolerance) in the generation of pain and fatigue symptoms in patients with Fibromyalgia.
It is already known in the scientific and medical communities that orthostatic intolerance is common in both Fibromyalgia and ME/CFS. This project hopes to demonstrate this relationship directly, and link it with changes in pain, fatigue and responsivity to inflammation in patients with Fibromyalgia.
It is hoped that this part of the study could deliver scientific knowledge that has the potential to influence targeted treatments.
The specialist consumable resource we are funding will support the analysis of genome-wide transcriptomics. Transcriptomatics takes a bit of explaining, so bear with us. Everyone has heard of DNA but do you know that your DNA subtly changes with the things that happen in your life? The story of what has happened to your body, health-wise, and age-wise, is written into your DNA. Transcriptomatics is the new scientific field which aims to decode and analyse those changes, in order to understand what has happened to the body when we get ill.
Scientists on other projects have already shown that people who have medical conditions with a lot of fatigue and pain have changes in their transcriptomatics. This study now aims to go further, and show the transcriptomic differences associated with an inflammatory challenge in patients with Fibromyalgia. This too has the potential to influence further scientific research and ultimately treatment targets.
The main research programme is already under way, and the team is led by Professor Kevin Davies, who is Head of the Department of Clinical & Experimental Medicine at the University, and also practices Rheumatology as Honorary Consultant at Brighton and Sussex University Hospitals Trust. He is also the Trust’s Associate Medical Director, Head of Research and Development. His bio is here https://www.bsms.ac.uk/about/contact-us/staff/professor-kevin-davies.aspx
The existing arms of the study are focused on: autonomic dysfunction; hypermobility and the role of collagen; and the abnormal responses of FM patients’ bodies to (what would be to healthy people) minor challenges such as vaccines. By looking at different aspects of the condition, we believe the study overall will have direct relevance to most of our patient community.
As Trustees, we feel this is the best use of the funds raised by patients and their supporters, because, through the various arms of the study, it will have direct implications for diagnosis and treatment of the majority of patients with fibromyalgia. In discussion with Professor Davies, it is clear that he is extremely well in tune with the symptoms experienced by people with fibromyalgia (PWFM) and potential causes.
This is a big project, and there are a number offunders. For the part of the project we are joining the other funders are: Versus Arthritis, which used to be called Arthritis Research UK, and Action for ME. The study is also supported by the National Institute for Health Research (NIHR).
Other projects being run by this team that are relevant to the Fibro community are being funded by the AMS – the Academy of Medical Sciences and other charities.
In this video, Dr Jessica Eccles of the BSMS research team discusses the project.
