Founder of the Hope4me and Fibromyalgia NI charity, Joan McParland hopes World ME Day (Myalgic Encephalomyelitis) day will shine a much-needed light on ME awareness.
This Thursday will mark World ME Day and Joan encourages everyone to show their support.
Volunteer Now put me in touch with Joan to find out more about her inspiring story. Volunteer Now is a leading organisation for promoting and supporting volunteering across Northern Ireland.
They urge anyone interested in volunteering to ‘give it a go’. Through Volunteer Now’s online requested volunteering platform – volunteernow.co.uk - volunteers can be matched to find local activities that best suit their skills, passions, and interests. You can also chat to a Volunteer Now team member for support and information.
Jane Gribbin, Community Engagement Manager at Volunteer Now said:
“The work that Joan and other volunteers do at Hope 4 ME & Fibro is invaluable and demonstrates just how important volunteers are in supporting people and communities right across Northern Ireland. Volunteers are the driving force behind so much that goes on and I would encourage anyone with spare time and an interest in helping others to visit our volunteering platform at volunteernow.co.uk, register your interest and give volunteering a go. There are hundreds of unique opportunities available to suit all interests and, as well as being a great way to expand your skills and try something new, it’s a fantastic way to give back to your community.”
Joan is from Bessbrook and worked as a school meals organiser until developing a sudden viral illness at the prime of her life and has been living with ME since 1999. The condition has led to her being largely housebound with only a few hours of energy a day, there is no effective treatment or cure.
Like many people being diagnosed with ME, this has led to Joan having to adjust to major changes in her life:
"I got a virus in 1999, and thought little of it, but I never recovered. That was twenty-two and a half years ago, the first ten years I was completely bed bound. Over the years I have very gradually regained about 2 or 3 hours a day of energy and that’s the only part of the day that I can function."
Joan felt very in the dark when she was diagnosed with ME. In terms of the entitled support from the NHS she felt she had none. Joan decided enough was enough decided to take matters into her own hands and started her own charity - Hope4ME and Fibromyalgia Northern Ireland.
"My GP was kind and supportive but admitted he knew little about post-viral illness, I felt I nowhere else to turn and was totally isolated at home, I just thought somebody needs to do something about this.”
"I eventually educated myself on a laptop and found other patients and other ME and Fibromyalgia charities who had decades of experience in campaigning for adequate healthcare.
I thought, well there is nothing in NI and so someone better do something and exactly that happened. Now we are a world respected charity providing educational opportunities for healthcare providers. None of this would have been possible without the dedication and 11 years hard work undertaken by our committee volunteers and the support we receive from other patients.
The work they do
The HSC Clinical Education Centre website now hosts a series of 5 free webinars, organised by the charity to provide the expertise needed from world renowned clinicians and researchers in the field of ME and Fibromyalgia.
The charity was awarded the Queen’s Award for Voluntary Services last year. The prestigious award is for delivering exceptional service on an all-voluntary basis within their communities over the past 11 years. Joan was invited over to London for the June 25 for the official award ceremony but regrettably due to the ongoing debilitating nature of her condition is unable to attend. The parent of a son with ME and Trustee of the charity, and the charity Medical Adviser, Dr William Weir NHS Infectious Disease consultant, will be attending Buckingham Palace to accept the award.
Joan and her team also continue to raise funds for Bio-Medical research, liaise with all major ME and Fibromyalgia charities in UK, Ireland and worldwide, and highlight awareness at every opportunity.
Joan’s charity are now members of the World ME Alliance, who are leading and developing the very first World ME Day in 2022.
Thursday (May 12) is the 30th anniversary of International Awareness Day for ME and Fibromyalgia.
The charity has held conferences in Stormont where specialists from all over the world are invited to attend to educate medical professionals in Northern Ireland on the disease. This is because there are no ME Clinical Lead or specialist located in Northern Ireland.
Despite the World Health Organisation classifying ME as a distinct neurological condition over 50 years ago, there is still little or no specific medical training in ME for doctors or nurses in their training years in university. This can result in some healthcare providers being susceptible to the same misperceptions and stigma surrounding the disease as the general public.
Joan and her charity are now working with their associates, Volunteer Now to recruit volunteers to deliver an innovative new ME VR Experience. The experience will include a 6-minute animated film telling the real-life experiences of Northern Ireland patients and family carers, delivered via a VR headset. This is allowing practitioners to get a firsthand experience of witness what someone’s life is like, living with ME.
Joan explained: "The reason we are offering education via virtual reality headsets, is because you can hand busy doctors, information packs and books, but with the current pressures in the health service and in some quarters disbelief about ME, we needed to come up with something short, novel and unique."
The stigma around ME
"A lot of people think ME is about tiredness, its nothing to do with tiredness. The onslaught of ME symptoms include overwhelming fatigue, muscle weakness, nausea, dizziness, headaches, short term memory loss, cognitive confusion, digestive disturbances, muscle, and joint pain you name it.
When severe pain issues set in about 7 years from ME onset, I was also diagnosed with Fibromyalgia, an overlapping condition. Every single organ in your body is affected!”
Previously to a 4-year review of the NICE Guidelines for ME, patients were often recommended graded exercise therapy and cognitive behavioural therapy but thankfully science has now moved. New NICE guidelines were issued to healthcare providers in 2021 and formally adopted by NI on 19th January 2022, and state the following: "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."
Unfortunately, the charity now has patients coming forward who are living with long Covid.
"Any viral illness has the potential to cause to lifelong disability, but that’s not saying Long Covid is ME but what we are seeing in *one group of patients who’ve had Covid, is nothing new to anyone living with ME!”
“If only I had been warned about PEM (Post-Exertional Symptom Exacerbation) and the dangers of trying to push through the symptoms in the early stages of post-viral illness in 1999, I wouldn’t have made three attempts to return to my career and unknowingly pushed myself into severe ME. I eventually learned that proper self-management of living within my much reduced ‘energy envelope’ by resting and pacing all activities is the only way forward until effective treatment is eventually found.”
Through the hard work and dedication from Hope4ME and Fibromyalgia N.I., more that progression is being made in raising awareness of ME.
To do your bit and show support check out these websites: https://hope4mefibro.org/ https://worldmealliance.org/