The Long Gallery, Parliament Buildings, Stormont, Belfast.
Tuesday, 30th May 2017, 2-6 pm
The “Seeking Solutions for ME and Fibromyalgia” conference in Stormont, on Tuesday 30th May 2017, was hosted by Robbie Butler MLA and chaired by Jo-Anne Dobson. The speakers included myalgic encephalomyelitis (ME) specialists from countries worldwide including USA, UK, and Norway. The event was well attended, with key decision makers from the Northern Ireland Health and Social Care Board, and the Irish Health Service Executive present. General Practitioners, representatives from the allied health professions, and a few patient group and carer representatives also attended.
Although there have been major steps forward in the field of ME/chronic fatigue syndrome (CFS), big challenges remain. Some of the most relevant problems and new developments were addressed at the meeting and participants had the opportunity for exchange of knowledge and experience through expert presentations, questions, and educational discussion.
Joan McParland, and Sally Burch, of Hope 4 ME & Fibro NI took a few minutes to explain the problems patients have with the current NICE guidelines on exercise. Sally illustrated this with some personal data demonstrating the abnormal heart rate responses of ME sufferers. She emphasised the importance of the current NICE advice on heart rate monitoring during exercise.
ME specialists presenting at the conference provided evidence to confirm that ME is a biological disease that results from the dysfunction of energy processing mechanisms in the mitochondria.
Ms Tannenbaum, CEO of the Open Medicine Foundation (USA) explained that disrupted levels of metabolites during glucose metabolism contribute to the pathophysiology of ME. “ME is a debilitating biological disease resulting in a hypo metabolic state in which glucose metabolism becomes decreased… it can strike anyone at any-time,” she said.
Dr Weir, Consultant Physician and ME specialist, explained that although ME has been documented as a recognisable condition since the1950’s, its underlying cause and how patients should be managed has been controversial, with a large influential body of scientists still categorising ME as a psychological/psychiatric illness. However, ME patients have physiological features that differ from patients without ME. “Normally, an exercise programme will cause an individual’s anaerobic threshold to increase, but in ME, the anaerobic threshold decreases.” Dr Weir said. He emphasized that rest rather than exercise is essential during the early management of ME. He also mentioned the positive results he has had with a few patients using an anti-retroviral drug, and his optimism for future treatments.
However, the mechanisms of the disease processes in ME are complex and difficult to elucidate. Research continues in the key areas of immunology, genomics, virology and drug therapy to provide greater understanding of the disease and offer the possibility of pharmacological treatment options.
Prof Olav Mella from Bergen University Hospital, Norway outlined a programme of research using rituximab, which depletes B cells in the immune system, to treat ME/CFS patients. Results from phase 1 and 2 trials were encouraging and results from the ongoing Phase 3 trial are eagerly awaited.
Currently, the National Institute for Health and Care Excellence (NICE) guidelines recommend graded exercise therapy (GET) and cognitive behavioural therapy as treatment for patients with ME. These recommendations are based largely on the UK PACE trial – the validity of which is challenged by many ME specialists and patients.
David Tuller, a scientific journalist explained how he has questioned the researchers of the PACE trial numerous times, seeking clarification about methodology, outcomes and bias in the trial. To date, there have been no satisfactory answers to his queries. He expressed his concern that the lack of an open and honest dialogue about the PACE trial means patients will continue to receive recommended ‘evidence-based’ GET therapy, potentially causing their ME to worsen.
Specialist health services for ME patients remain an unmet need in Northern Ireland. Dr Christine Mc Master, consultant in the Public Health Agency provided an update on the latest developments towards the provision of a Medical Lead for ME in Northern Ireland. The proposed part-time post (2.5 days a week) aims to support ME patients and educate health professionals about ME and will be advertised nationally in the British Medical Journal.
The event gave those in attendance much to think about, especially in relation to the current NICE guidelines and their reliance on the biopsychosocial approach to the treatments of both ME and fibromyalgia. A buffet supper was provided after the event allowing for networking opportunities, and discussions on the future of ME and fibromyalgia treatments.
We feel it is important to share with patients who remain frustrated and without any hope of progress being made towards specialist NHS ME and fibromyalgia services in Northern Ireland.
" We have great plans and they are well developed.
> The fibromyalgia new care pathway, launched in September 2016, is very well developed, we are just waiting for the political and financial situation to allow implementation.
> February 2017, draft job specification for new clinician/s to lead was drawn up and sent to our HR colleagues. It was sent back in March and final version is amended.
> A meeting (on new ME services) will take place in September 2017 with all Medical Directors in all Northern Ireland Health and Social Care Trusts.
> When appointed, the new ME medical lead will also be responsible for education and training of all allied health professionals, nurses, health managers and the general public.
> The job does not have to be held by one professional, it can be shared, the post could be allocated anywhere in Northern Ireland.
> Service users have undertaken interview training, as we want an inclusive interview panel.
> There is much work to be done, therefore we don't expect the new ME specialist position/positions to be in place this side of Christmas.
> We (DOH) are cautiously positive this search for a suitable candidate/s will be successful.
> Purely for governance reasons, we have established links and collaboration with an existing UK Centre of Excellence, we would hope the new ME service will contribute to research, here or beyond the UK.
> I hope the post to be advertised in the BMJ which will broaden the reach globally, not just near us."
Hope 4 ME and Fibro Northern Ireland representative, Sally Burch has undertaken the interview training mentioned above.
Hope 4 ME & Fibro Northern Ireland are stakeholders for this review. Interesting times ahead!
" NICE will shortly commence a 2-week consultation with registered stakeholders about the need to update NICE clinical guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management.
The consultation will be open from Monday, 10 July 2017 until Friday, 21 July 2017. We will contact you again when the consultation has been opened so please look out for the email and the relevant documents."
LISTEN AND SEE WHAT WE ALL THINK
Tymes Trust, our Executive Director Jane Colby and members assisted in the making of this programme. We would like to see the final product being a thorough expose of the scandalous situation whereby many innocent parents and their sick children face false accusations and investigations. The children are often made worse by this and are terrified that they will be taken from their home and family. Our list is now up to 180 cases. http://www.bbc.co.uk/programmes/b08vyly5
The Stormont conference DVDs are now ready for sale via this link.
I have used Alpha Video Ireland for recording all our educational events since 2011 so he's well tuned into our plight!
As a result he has set up this link to sell, package and distribute the DVDs on a voluntary basis to help out.
We very much appreciate Jeremy's kindness, while still in recovery from the workload of organising the event.
DVDs are £10 plus £2 P&P to UK £5 P&P to ROI. http://www.alphavideoireland.com/shop/conferences/seeking-solutions-for-me-fibromyalgia-conference-dvd/
This is the DVD that I filmed of the latest Hope 4 ME & Fibro Northern Ireland conference "Seeking Solutions for ME & Fibromyalgia" in the long Gallery, Parliament Buildings, Stormont, Belfast on the 30th May 2017. I am selling it here on behalf of the charity to help them raise much needed funds. A...
The charity has obtained permission from the authors, to reprint and enable us to be the Northern Ireland suppliers for copies of the Canadian Consensus Criteria overview booklets, for both ME/CFS and fibromyalgia.
Copies can be purchased by contacting...