Advocacy for ME is a Marathon (not a sprint)
Hope 4 ME & Fibromyalgia Northern Ireland shows how running a steady race pays off
The recent announcement about Joan McParland receiving the MBE award filled me with joy.
Having worked with Joan for quite some time, I am well aware of her efforts and her personal sacrifice to advocate for people with ME.
In the past I have been skeptical about how these kinds of awards were given. (I think there have been at least one very questionable Knighting that has affected the ME community. I suspect most will know to whom I am referring.)
I wholeheartedly concur with Joan's award. If you aren't already familiar with Joan's work please keep reading.
Joan McParland, founder of Hope 4 ME & Fibro Northern Ireland has been awarded an MBE.
News broke on June 16 that Joan was included on the King's Birthday Honours list recognizing extraordinary individuals helping to combat major challenges of our time. Joan posted about the award on Facebook. Her post included:
“sincere thanks to every single person who has helped me along the way in my own 24 year journey with ME.”
Interesting to note the letter informing her she would receive an MBE (Member of the Most Excellent Order of the British Empire) for services to the ME community arrived on May 12th. May 12 is recognized worldwide as the day to raise awareness for ME and other similar conditions.

From the announcement under Members of the Order of the British Empire - MBE:
“Mrs Joan Elizabeth McParland, For services to People with Myalgic Encephalomyelitis and to their Families and Carers in Northern Ireland."
The full citation as to why Joan received this recognition, highlighted the level of her disability, as she remains mostly bed and housebound, working on an iPad when able, to organise the various charity projects.
She said
“..I am incredibly grateful for the never-ending help and support of my family since 1999. We spent a full decade of thinking and planning, and hoping, before leaping into the world of M.E. advocacy in 2011”.
Honours are awarded by the King. Most are given on recommendations made to him from the Prime Minister or other senior Government Ministers. Recommendations come from nominations, made by organisations or members of the public, who are familiar with the work of the candidate. Who gets an honour, and the honour they get, is decided by one of a number of subject based honours committees. These committees advise the Prime Minister.
Some statistics about the winners were posted HERE. The information explains that the United Kingdom's total population is 67.62 million and out of the 135 people who have a disability or long-term health condition chosen to receive an BEM, MBE or OBE award, Joan is the only person with ME. It is notable the government used the full term Myalgic Encephalomyelitis and not ME/CFS.
It is heartening to see someone who has done so much for people with myalgic encephalomyelitis get recognized for their efforts. Advocating for ME while being sick with ME is a very difficult endeavor. I have worked with Joan McParland for many years and am glad to see her get this recognition. She received the news the same day she was speaking at the charity’s annual conference on May 12th, held in Stormont, home of Northern Ireland’s Devolved-government, Legislative Assembly.
Her announcement on Facebook included the following statement:
“So finally all I can say is that I will use this great honour as one of the best opportunities I’ve ever been given, to continue to highlight our plight and raise more awareness about “the greatest medical scandal of this century”.
For those not familiar with an MBE award, this article explains.
She is quick to share credit for many of the successes that her organization, Hope 4 ME & Fibro Northern Ireland, has had over the years.
The original Hope 4 M.E. & Fibromyalgia Northern Ireland support group was set up by Joan in 2011. They became a registered charity in 2014, run by patients and volunteers and they rely entirely on small grants and voluntary donations to operate. The charity has hosted 10 international conferences and switched to online events during the pandemic.
The following are a few of the accomplishments from her charity that helps explain what has led to Joan being given this award:
Queen’s Award for Voluntary Service 2020
Due to the pandemic, the official awards ceremony didn’t take place until October 2022, when Hope 4 ME and Fibro NI volunteers were presented with the Queen’s Award for Voluntary Service which is the highest award given to local voluntary groups in the UK and is awarded for life, it is the equivalent of an MBE. The Newry, Mourne and Down District announcement about the award can be found HERE.
Virtual Reality Project
Discover M.E. - Hidden Lives Virtually Uncovered uses storytelling in virtual reality to share insights into the lives of people living with Myalgic Encephalomyelitis. (Link is to the trailer. Follow the charity for future news about access to the film.) It is a two part, animated, virtual reality, awareness and educational introduction to ME. It places the viewer into scenes in the middle of real life stories that are normally never seen, heard or experienced. Discover M.E. is a partnership between Hope 4 ME & Fibro N.I, Silverink, Enter Yes and Neon (Funded by NI Screen).
Discover ME was selected in Sept 2022 for four awards; Best Shorts Competition, Pinewood Studios in their Lift-Off Filmmaker Sessions, Global Shorts and Delta Film Festival.
In a February 2022 post on FB, Joan McParland gives this description of the film:
“My own experience and words explaining #ME, and that of 5 other Northern Ireland patients (a severely affected doctor, a Charge Nurse, a teacher, a parent of a child and a child with ME) have been captured forever in a ***six minute*** animated VR experience to encourage healthcare providers to discover ME.”
Queen’s University and Ulster University have now confirmed they will be including ‘Discover M.E.’ in their medical student education 2024 curriculum!
Continuing Medical Education
Four hours of continuing Medical Education for ME/CFS was approved for those attending the recent conference by the CPD Certification Service. This was the ultimate outcome of nine months of work beginning with the first speaker invitation email that went out in October 2022.
Breakdown of educational content:
2 hours of speaker presentations
1 hour informal networking and Virtual Reality video experience in pre-conference buffet
1 hour personal study time for delegate information packs (includes International Consensus Primer for Myalgic Encephalomyelitis)
Videos of the presentations can be found HERE.
Online M.E. Education Produced During The Pandemic
Hope 4 ME & Fibro NI has worked with various organizations to bring clinical education to Northern Ireland. One of the other accomplishments is the production of an ME educational Webinar series posted at Page Tiger in collaboration with the Health and Social Care, Clinical Education Centre in Northern Ireland with 1,850 views recorded so far spanning time frame from Dec 2021 to 8 May 2023.
Distributes International Consensus Primer
I am very grateful that Hope 4 ME & Fibro NI and Joan McParland’s advocacy includes recognition of the importance of the International Consensus Criteria and the International Consensus Primer for diagnosis and patient care as can be seen by the charity’s “Take the Pledge” campaign for doctors:
“I pledge to learning why M.E. is NOT chronic fatigue or extreme tiredness by reading Myalgic Encephalomyelitis International Consensus Primer Adult & Paediatric.”
The charity has obtained re-printing and distribution rights for the International the International Consensus Primer booklet since 2015 and has supplied free copies to 600 Queen’s University Belfast medical students so far. Healthcare delegates at all conferences over the years have also been given ICC ME Primer booklets.
What You Can Do to Support the Charity
Check out their website and consider donating.
Become a member
Consider being a Volunteer
Participate in the Give As You Live program. Shop online and raise money for Hope 4 ME & Fibro Northern Ireland. Give as you Live Online is the free and easy way to raise money for Hope 4 ME & Fibro Northern Ireland when you shop online with 6,000+ stores. Simply sign up for an account and start shopping to make a difference for Hope 4 ME & Fibro Northern Ireland!
Follow the charity’s Hope 4 ME & Fibro Northern Ireland - Announcements Page on Facebook
Join the Charity’s Hope 4 ME & Fibro Northern Ireland Facebook group
Follow the charity on Twitter
As you can see Hope 4 ME & Fibro NI has done a great deal to help everyone with ME, no matter where they live.
Colleen