Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

In April I attended an Event – ‘Fatigue: My life, your research’, at the Life Centre in Newcastle, North East UK, that was led by the local NIHR CRN North East and North Cumbria. An event that FibroFlutters was involved with from the beginning when myself and Kevin Short Lead Nurse at NIHR CRN: North East & North Cumbria, came up with the event idea. 

Ian Foulger a Fibro Flutters Founding Five Member and NIHR Patient Research Ambassador was on the steering committee for the ‘Fatigue: My life, your research’ event alongside other patients and professionals who all helped to design and create it with NENC (North East North Cumbria) Clinical Research Network Team

Four of us representing FibroFlutters attended the event in Newcastle Upon Tyne and listened to various speakers discuss and explain the research that was ongoing around the region regarding chronic fatigue and ME.  The event was not ME specific because we wanted it to reflect that fatigue comes in varying forms and affects many people with many other very differing chronic conditions, including fibromyalgia and arthritis, (of course many musculoskeletal conditions cause chronic fatigue), depression and anxiety are also known to cause fatigue too.

Patients, carers, clinicians and researchers from across the region attended this event and took part in the workshops at the end.

Read all about it, and watch it via this link –

https://newsroomnenc.nihr.ac.uk/archive/archive-2019/april/event-recap-fatigue-my-life-your-research

An interesting and educational day, although ironically very exhausting and two of us didn’t last the whole event as a result.

Another small role that I have been involved with is the NIHR ‘Be A Part of Research’ and the new app development.

https://bepartofresearch.nihr.ac.uk/

A little background to the event…

Back in 2017 when I (Carole Scrafton) met Kevin Short Lead Nurse NIHR CRN NENC, as an NIHR Patient Research Ambassador, to talk about how we could bring research to the public we wanted to highlight the research that was being conducted in the North East UK about Fatigue and the fact that it occurs across a diverse set of illnesses and not just ME.

Ian Foulger FibroFlutters very own ‘fatigue’ expert, and also a Patient Research Ambassador, was on the steering committee and helped with it’s design. I passed the role onto Ian because of his own personal health experience with fatigue alongside his extensive knowledge and understanding of it. Why have a dog and bark yourself?

May is always set aside for the varying awareness campaigns for lots of chronic, invisible and rare conditions. 

The whole month from beginning too end sees me aiding such campaigns across our social media network in support and is a very hectic month.  One of the key charities we support is FMAUK because they are one of our founding mother hosts, another is EDS UK as I am a named contact for Sunderland even though I haven’t been able to sustain the setting up of a proper support group.  (I do however give the members access to FibroFlutters support network and am available for a chat if they need to.)

Can provide details for access to our FMAUK sister Fibromyalgia support group for those who wish to have the formality of group meetings. Myself and Elaine do try to attend when we can and Elaine can provide details for the Tyne and Wear support group too. There are also other groups within The North East including Newcastle, Teesside and County Durham. Please don’t sit and be alone with your pain and problems, we are here for you and can point you in the direction of others.

EDS UK also has many groups scattered within the North East UK, but it is important that you register with them via their website, (link also provided below), as you need to be a member to attend their meetings.

May 12^th is International Awareness Day for Fibromyalgia, Lupus and ME/CFS and many advocates across the globe spend a lot of time preparing fundraisers, events and online campaigns, which I try to follow and support as many as I can.

We followed FMAUK’s #BecomeFibroAware campaign across Twitter all year and not just on May 12th

2019 marked FibroFlutters 5th birthday

It is also Ehlers-Danlos awareness month and supporting EDS UK and Ehlers-Danlos Society in the US were at the forefront of my online campaigning. 

The campaigns also support Hypermobility Spectrum Disorders (HSDs) of which there are many kinds that people are afflicted with. 

Many members and followers of FibroFlutters have Hypermobility Spectrum Disorders, HSD’s, so campaigning for awareness for those is of equal importance. Advocacy took part on our social media network.

Myself and Flutter Co-Founder Vicky both got diagnosed with hypermobility disorders that were in fact Ehlers-Danlos Syndrome III.

Register for your local support group with EDS UK via this link

https://www.ehlers-danlos.org/support/support-groups/

Whilst browsing through my usual influx of e-mails and news resources I came across an opportunity to apply to join an ‘expert pool of patients’. After applying I got word from the IMI2 JU Programme Office Team acknowledged the receipt of my application and all I needed to do was now wait to see if they’d accept me onto it.

To find out what this pool of expert patients is about please follow this link

https://www.imi.europa.eu/get-involved/patients/imi-pool-patient-experts

This was of great interest to me as a way to get more involved with research and being a firm medical and health research advocate it would provide me with opportunities that I wouldn’t ordinarily get the chance to do.