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.
Dr Alastair Miller's misleading claims about effectiveness of the English NHS (rehab) ME/CFS clinics at a Royal Society of Medicine webinar in Sept 2020
As Dr David Tuller reported*, the Royal Society of Medicine conducted an online webinar recently called “Long COVID: Understanding the shadow of the virus.”
Among others, it featured Dr Alastair Miller (an infectious disease expert from Liverpool who used to run a local ME/CFS clinic) who claimed with regard to ME/CFS:
"And from our results, which are pretty much in line with PACE and all the other centers that are using these therapies, we reckoned that about one third of our patients made a complete recovery and go back to a pre-morbid existence, about a third made an improvement but still had some symptoms, and about a third did not recover.”
Fortunately, we don't have to depend on Dr Miller's claims: we actually have a published paper on the English NHS (rehab) ME/CFS clinics**.
A quick review of the data shows that Dr Miller's claims don't add up:
(From table 3)
At 1 year after initial assessment
I have been able to return to work or increase my hours: 18.0%
I have stopped working or reduced my hours: 34.8%
(From Table 6)
At 2- to 5-year follow-up
I have been able to return to work or increase my hours: 23.7%
I have stopped working or reduced my hours: 34.9%
(From table 4)
At 1 year after initial assessment
Do you think that you are still suffering from CFS/ME? No: 2.8% Uncertain: 10%
Note, that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy
(From table 6)
Do you think that you are still suffering from CFS/ME?
At 2 years. No: 5.0% Uncertain: 8.8%
At 3 years: No: 2.4% Uncertain: 7.2%
At 4 years: No: 6.6% Uncertain: 11.3%
At 5 years: No: 8.2% Uncertain: 9.2%
Again, note that "no" and "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy
German Petition to recognize #ME as a biomedical disease.
Everybody from all over the world can sign:-
‘ Unfortunately, there is no medical care for the approximately 240,000 people suffering from Myalgic Encephalomyelitis (ME) in Germany.
Currently, there is only a specialized contact point at the Charité Berlin, but due to the large number of patients, only patients from Berlin/Brandenburg can be diagnosed there! Important: they only diagnose, unfortunately the patient cannot expect a helpful therapy.
The contact point of Prof. Behrends at the Munich Clinic Schwabing is only responsible for young people.
That means: there are currently no contact points for most patients in Germany. The situation is therefore catastrophic for those affected, which also explains why many patients are wrongly diagnosed with burnout/depression, resulting in harmful therapy attempts that do not help the patient but allow the disease to progress.’