I was honoured to be asked for my experience of working with the Patient & Client Council N.I. since our Chair, Martina Marks first contacted them on behalf of the charity in 2013.
This organisation finally gave a voice to all ME and fibromyalgia patients in Northern Ireland...........and there’s much more to come shortly!
Here is the result.
“Joan McParland is the Founder and Voluntary Coordinator for Hope 4 ME & Fibromyalgia, Northern Ireland
Joan was hit with sudden viral onset of ME in October 1999. Through personal experience Joan came to understand the need for improved services and support for ME sufferers in Northern Ireland. Joan said:
‘There was a lack of awareness and education about M.E. in Northern Ireland and no specialist NHS services. Despite campaigning for recognition since 2009, no progress was made until the charity approached the PCC in 2013.’
Before becoming involved with the ME & Fibromyalgia Focus Groups Joan worked as a catering manager for the Southern Education and Library Board since leaving college and had no experience of the health care industry.
Joan says of her experiences so far:
‘From our first meeting with PCC our concerns were genuinely listened to and acted upon, the outcome has surpassed our expectations! A new NHS Care Pathway is under development for fibromyalgia and new specialist M.E. service are shortly to be announced for the 7000 M.E. patients in N.I., who previously had no specialist NHS input or support.’ http://www.patientclientcouncil.hscni.net/news/view/test1
Exciting times ahead for our conference in September!
“Pathophysiology and treatment of exertional intolerance in ME/CFS: insights from cardiopulmonary exercise testing”
I think of David Systrom as a hopeful harbinger of the future – not just because of his exciting results – but because of how he came to this field. Systrom was not enticed into it. Instead, he came to it through his study of exercise intolerant individuals – many of whom, he later found out, had ME/CFS.
A pulmonologist working out of Harvard University’s main hospital, he brings two things we vitally need: credibility and contacts. He’s working, for instance, with Anne Oaklander – another Harvard researcher – who uncovered the small fiber neuropathy present in fibromyalgia.
Systrom’s invasive cardiopulmonary exercise test (iCEPT) is like the CPET tests we know, love and occasionally hate – on steroids. Using a catheter, these fantastically expensive tests provide much more information.
Systrom is finding relatively normal VO2 max in ME/CFS – not a surprise for a first day exercise test – but his invasive tests are revealing problems during that first exercise test that ordinary CPET tests cannot. Two major abnormalities are showing up: both the filling pressure of the heart and the systemic oxygen uptake are uniformly low during upright exercise in ME/CFS.
Systrom propose that the TRAIL pathway provoked by pathogens could be present in ME/CFS.
They suggest the heart is not getting the blood it needs, and the mitochondria are not getting the oxygen they need to produce the energy we need during exercise.
Systrom cited the story of a former competitive cyclist who had undergone a $1,000,000 workup – not that difficult a thing to do, he said, in the hospital he works in – to no avail. His testing revealed the problem – his heart wasn’t pumping the blood it needed to his muscles and even when the blood got there, the oxygen in it wasn’t being transformed into energy.
Systrom also brings the gift of a big data set – something this field has missed for years. Of the 200-plus patients he worked up in one data set, 72% met the criteria for ME/CFS. The man has basically been studying ME/CFS for years. POTS was next on the list (27%), followed by fibromyalgia and mast cell activation syndrome (MCAS) (20%).
This breakdown seems to fits perfectly with the degree of exercise intolerance found in these diseases – present in POTS and FM – but not nearly to the degree found in ME/CFS.
Systrom has identified five different subsets which appear to differ depending on their issues with oxygen extraction and blood vessel problems. The high blood flow group, for instance, has pretty good blood flows but is not using up their oxygen.
Etanercept chronic fatigue syndrome
Dr. Klimas’s drug of choice – Etanercept – knocks down the same immune pathway Systrom’s preliminary results suggest exercise is upregulating in ME/CFS.
Most of this group had ME/CFS and forty percent of them also have small fiber neuropathy (SFN) – a remarkably similar percentage to the amount of SFN found in both POTS and fibromyalgia.
Unfortunately, the amount of small fiber neuropathy present did not correlate with the exercise findings. Systrom, however, believes that small nerve fiber functioning rather than nerve fiber density may be a better measure.
Systrom next surely opened some eyes when he proposed – citing a conversation with another researcher – a new potential immune pathway for ME/CFS called TRAIL. TRAIL involves an uber pro-inflammatory cytokine, TNF-a, that’s often provoked in response to a viral infection. Systrom’s early testing suggests that exercise may be temporarily upregulating that pathway in ME/CFS patients.
A temporary upregulation fits with Nancy Klimas’s model of a massive upregulation of inflammation occurring early in exercise in ME/CFS, which then dysregulates other systems. In fact, Etanercept, the drug Klimas has chosen to tamp down the inflammation in GWI and ME/CFS, is a TNF-a inhibitor (:))
Systrom ended a fascinating presentation with the news that we can expect a treatment study out – something rare in ME/CFS – which shows that pyridostigmine bromide (Mestinon) – at rather increased doses, as I remember, was effective in increasing both VO2 max and, most interestingly, oxygen extraction in the muscles (!).
Mestinon, an old drug, increases the availability of the parasympathetic nervous system neurotransmitter, acteylcholine. Dr. Jay Goldstein recommended it in ME/CFS decades ago but it’s hardly been used in ME/CFS until Systrom came upon the scene.
Check out the story, though, of a person with a longtime case of ME/CFS who is now able to exercise after getting Mestinon (from Systrom).
Systrom is also starting to do muscle biopsies and is incorporating the Seahorse and mitochondrial studies into his work. He has found positive acetylcholine autoantibody results (using the Mayo tests – he has not used the new German tests yet). Also, it’s important to note that all Systrom’s results disappear when the patient is tested while supine. He also noted that the results he’s finding in ME/CFS are not found in deconditioning.
Systrom’s first presentation at an ME/CFS conference was for me the highlight of the conference – not only because he brings such exciting results but because he’s clearly now immersed in this field. His first pure ME/CFS project is being funded through a grant from the Solve ME/CFS Intiative (SMCI).
Systrom has taken exercise testing to a new and exciting level in ME/CFS, but as Dr. Keller, the next presenter, will show, the non-invasive CPET studies are still providing plenty of juice.
A Critical Look at the NIH’s Accelerating Research Conference This chronic fatigue syndrome (ME/CFS) conference was different. Besides the normal goal of bringing researchers together to share their latest results, it had an ulterior motive – getting NIH researchers involved and highlighting the...
We have a number of events planned for ME and fibromyalgia May Awareness this year. Hopefully this will give us a chance to meet with more of our members and supporters who can’t travel to Newry for monthly meetings.
This year we are targeting the stigma which surrounds our illnesses, head-on!
Save the date for Lisburn on 20th May!
Hashtags #StigmaAndME #FibroIsReal
More and more medical professionals are speaking out but unfortunately not until they actually experience #ME for themselves. #StigmaAndME
“Ten months after developing acute Epstein Barr Virus Glandular Fever I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by my outstanding and well-informed GP. Prior to becoming ill, I had a vague notion that ME/CFS was an illness related to deconditioning. How wrong I was. The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).” https://www.rcplondon.ac.uk/news/do-you-really-believe-me
A Time To Say Thank You.
It has been a great honour to have had Dr. Vance as a dear friend and as Scientific Adviser to the charity. We were privileged to be able to met up each year for the Irish ME Trust, Therapy Week, where many plans and dreams were devised to change the world!
Vance presented some of the mighty research work undertaken since he co-founded ME Research U.K. at our annual conference in 2014. Pictured below in Stormont, with Professor Mark VanNess, Dr. J McVeigh and Dr. Weir.
The photo of Vance taken with Craigmore Viaduct (our main logo) in the background is of a very special time we will treasure forever.
The charity will be forever indebted for Vance’s guidance, vision and determination to find answers to this disease.
“Many, many thanks
At our AGM on 9th April, Dr Vance Spence, our Chairman and one of our Founding Trustees, announced his intention to step down from his Board roles. Vance, not only had the vision of creating a biomedical research-driven ME charity but also the skills and dedication to make it a reality.
As Vance said "Since the year 2000, when Roger Jefcoate, Bob McRae and I laid the foundations of the charity, I dared not hope that 18 years’ later we would have invested almost £1.6 million in 49 distinct studies world-wide. Much has changed in the scientific community since then but what has remained is the cold, hard necessity that much more biomedical research into the causes and consequences of ME/CFS still requires to be done."
Vance will continue to contribute to the scientific work of the charity and has accepted the role of joint Honorary President.
For all his work with the ME community at large and for our charity, we are really grateful Vance!