Healthwatch West Berkshire launches young adults Fibromyalgia/CFS sufferers research and highlights #missingmillions at film screening

Posted June 26, 2018

The special screening by Healthwatch West Berkshire of Unrest on Wednesday, 20th June at Newbury College was attended by Steve McManus, CEO of Royal Berkshire Hospital and Dr Deepak Ravindran, the Clinical Lead for Pain Medicine at Royal Berkshire Hospital, as well as sufferers of Fibromyalgia, CFS (Chronic Fatigue Syndrome) and ME (Myalgic Encephalomyelitis), along with their friends and family. 

 

We at Healthwatch West Berkshire set up the registration for this event. It was free for people to register, however people could donate to the Reading and West Berkshire Fibromyalgia support group.

Visitors to Newbury College on Wednesday evening were confronted with pairs of shoes, reflecting the worldwide campaign (which you can read about HERE) to raise awareness of those suffering from the complex, debilitating conditions Fibromyalgia, ME and CFS.  The shoes were labelled #MissingMillions in order to raise awareness of all those who are missing from their lives, as sufferers attending the event demonstrated by holding up banners with comments such as: “I miss shopping”, “Missing going out to the pub” and “I miss going to work and spending time with my colleagues”, illustrating how the conditions effect them.

 

“We’re carrying these shoes for all those who are too sick to be here, all those who are missing from our lives because they can’t make it out,” – said a volunteer.

 Andrew Sharp of Healthwatch West Berkshire, Ian Wolloff the principle of Newbury College,  and special guests Steve McManus and Dr Deepak Ravindran, gave a few opening remarks prior to the screening of the film.

Ian, Principle of Newbury College welcomes everyone to college for the evening to raise the profile of ME.

Steve McManus, CEO of Berkshire Hospitals thanks everyone for welcoming him here and praises joint efforts such as this to raise awareness of ME.

Dr Deepak Ravindran, Pain Management specialist. Explains the work he does and how contributions from support groups, films and events like this help make people aware and forward research in this area.

Andrew Sharp giving some opening remarks before the start of the screening.

During an interval, Newbury College provided light refreshments, allowing the audience to network, discussing the film with each other and the special guests from Royal Berkshire Hospital.  Finally, at the end of the screening Andrew Sharp from Healthwatch West Berkshire presented Dr Deepak Ravindran and Steve McManus from RBH, as well as Alice Gostomski from the West Berkshire and District Fibromyalgia Support Group, with a cheque for £2,500 towards research into the experiences of young people suffering from Fibromyalgia/ CFS within the our local community.

“A packed house watched Jennifer Brea’s film Unrest, which was at times harrowing, but also extremely interesting and informative,”

– Commented Andrew Sharp, Chief Officer of Healthwatch West Berkshire.

“It is incredible to think that so little is known about these conditions, which are effecting more and more people of all ages in our community. 

Final Andrew Sharp PicOnly last week there was a three-hour parliamentary debate, which brought the experiences of sufferers throughout the UK who have been stigmatised and ignored, laughed at and discriminated against into the news.  The debate drew attention to the fact that awareness and understanding needs to be created within the public psyche, while GP’s and the medical profession themselves need training – and research investment needs to take place into all aspects of the conditions.   So, we are pleased that we have been able to screen the film and raise awareness of those who suffer from these conditions, but are largely unheard. Additionally, we were delighted to be able to present Dr Deepak Ravindran with a cheque from our small CEP grant fund for £2,500 towards his research into how Fibromyalgia and CFS are effecting young people within our community”.

 

“I would like to thank Healthwatch West Berkshire for this grant,”

– Responded Dr Ravindran, Clinical Lead for Pain Medicine at Royal Berkshire Hospital. Image result for Dr Deepak Ravindran

“Our research will be targeting young people aged 16 to 30 years old, aiming to establish how these conditions, which have widely varying, complex and severe symptoms, effect this vulnerable group.  We want to investigate and report on the nature of the conditions.  Subsequently, we want to put in place resource and support for both the sufferers (and their carers) to improve both their mental and physical health and well-being, helping them to complete their education and lead fulfilled, happy and pain-free lives.”

Furthermore, Alice Gostomski of West Berkshire and District Fibromyalgia Support Group said: 

“We would like to thank Healthwatch West Berkshire for helping to raise awareness of Fibromyalgia and CFS within our local community, for providing a grant for research into the conditions, and for allowing us to make a collection at the event, which raised £100.36.”

The day after there was an ME debate in Westminster which you can watch below.

We’d like to thank everyone involved for helping this event happen and successful.

Healthwatch West Berkshire, Royal Berkshire Hospital and the local Fibromyalgia Support Group will be working together to raise awareness of the conditions and research.  The research specifically targets those between 16 and 30, as such over the coming months a social media campaign will be initiated in order to attract participants from the age group.   Anyone wishing to attend the local Fibromyalgia Group, which provides advice and support to sufferers, can contact it at: westberks.fibromyalgia@gmail.com or Fibro Phone Number 07789 708072 10-4pm Mon-Fri only. The next meeting being held at West Berkshire Community Hospital on Monday, 2nd July 2018.

Meanwhile, the official, public, launch of the research has been set for Thursday, 4th October 2018.

Notes to editors:

Healthwatch West Berkshire is the independent consumer champion for health and social care in West Berkshire. The organisation will help to shape and improve local health and social care in our community. Healthwatch West Berkshire is part of the Healthwatch national network, established by the Government to ensure local patients and users have a greater input to shaping local services.

Unrest

Directed by Jennifer Brea – Film Synopsis

Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.

At its core, Unrest is a love story. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure. T heir struggle to forge their relationship while dealing with her mysterious illness is at once heartbreaking, inspiring and funny.

For Further information, or interviews, please contact:

Andrew Sharp, HealthWatch West Berks: email andrew.sharp@healthwatchwestberks.org.uk

tel:01635 760 341