This update comes hot on the heels of an historic AGM on Saturday 8th December which saw a complete change of committee members.
A big thank you to all those who could make it and thank you to all those who voted and sent in their proxy votes. To those unable to make it, we hope to see you one way or another over the coming months.
Most of all, thank you to all the previous committee members past and present.
The AGM saw the end of an era with Catherine and Sandra standing down as Chair and Vice Chair, roles they have worked tirelessly in, with their tenacious efforts over the years ensuring WellME is what it is today. We thank them for their efforts in not only steering WellME on its course, but keeping it afloat, which is not an easy task.
Announcing the new WellME committee nominated at the AGM:
Matt Thom: Chair / Treasurer (acting),
Victoria Fernando: Secretary,
Gerda Smit: Committee,
Keri Eagan: Committee.
So from the new committee and all the members, many thanks again to Catherine, Sandra, Jen, Don, Kara, Cami, and all the past and present committee members that have helped ensure all 400 members are not only receiving this email right now, but have been getting the support they need.
Since the AGM the new committee have been working with two people from the wider ME/CFS community, Sam Featherstone and Rose Silvester about standing in and filling the two vacant positions.
Sam and Rose have both agreed to be interim members, holding positions until March where the committee intends to hold a Special General Meeting (SGM) to review many aspects of WellME’s support, including committee positions.
Armed with a full quorum, the new committee met with Catherine and Sandra yesterday, Saturday 18th December for a formal handover of all things WellME.
Unfortunately with Christmas fast approaching, and as some committee members are already away on holiday, WellME is closing from December 19th 5pm to February 4th 8am, during this time we will be unavailable.
After returning from recharging our batteries, the committee will meet to review all the documents, processes, and financials from the Committee Handover Session.
Once we have read and caught up with everything from the handover and have a clear understanding of WellME’s situation, we will send out an update including information on Support Group and Coffee Group times and locations.
Until then, Merry Christmas everyone from Matt, Vic, Gerda, Keri, Sam, Rose
The afternoon will start promptly at 1:00pm with Guest Speaker
Dr L Hodges on her research:
‘The timeline of Post Exertional Malaise in ME/CFS’
Dr Lynette Hodges is a Senior Lecturer in Exercise and Sports Science at the School of Sport, Exercise and Nutrition. She last spoke to our group in Wellington in 2016 on the first phase of this research programme. Lynette is now back to talk about the results of her extended trial.
For those unable to make this presentation, Alex Watts of Wattsloungestudios will be filming the presentation and the film will be made available on YouTube.
The presentation will then be followed by the Annual General Meeting
AGENDA
Apologies from Members
Confirmation of the Minutes of the AGM held on 5December 2017
Chair’s Report
Presentation of the Annual Performance Reportfor the period ended 30 June 2018
Election of the Executive Committee
Election of Office Bearers:
Chairb) Treasurer c) Secretary
Appointment of Reviewer/Auditor
General Business
Close of Meeting.
About Dr Hodges Research:“The timeline of Post Exertional Malaise in ME/CFS”
Dr L Hodges, 1Miss T Neilsen, Ass/Prof D Cochrane, 2Dr D Baken.
School of Sport Exercise and Nutrition, Massey University, School of Psychology
BACKGROUND: Subjective studies investigating post exertional malaise (PEM) suggest that it may extend beyond 24-hours and become worse at 48-72 hours following exercise. If PEM does become worse beyond 24-hours, 2- hour repeated protocols may under-diagnose those whom experience a later onset of PEM.
PURPOSE: To investigate whether PEM in Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) becomes worse 48-72 hours following a graded maximal exercise test. The secondary aim was to analyse subjective patterns of fatigue during PEM.
METHODS: Sixteen ME/CFS and 16 age and gender matched controls participated in the study. Participants were randomly assigned to either a 48-hour or 72-hour repeated cardiopulmonary exercise test protocol on a cycle ergometer. Objective measures were recorded at anaerobic threshold (AT), respiratory exchange ratio (RER) and maximal exercise. All ME/CFS participants recorded their subjective fatigue 7-days prior to and 10-days post exercise utilising the daily diary of fatigue.
RESULTS:Results from the 48-hour and 72-hour protocol indicated no decline in functional capacity in any group across days.There was a significant increase in workload and %VO2max at anaerobic threshold within the 72-hour ME/CFS group only. Subjective timelines of fatigue showed significant differences between the 48-hour and 72-hour protocol, with the 48-hour ME/CFS group taking significantly longer to recover (mean 11 days) than the 72-hour ME/CFS group (mean 5 days). Conversely, both control groups were recovered in less than a day. However, there was high variation across measures of subjective fatigue among ME/CFS participants.
CONCLUSIONS: The results of this study further support the use of 24-hour repeated protocols to determine functional decline during PEM. Results also provide new information regarding a potential improvement in function 72-hours after an initial exercise bout in ME/CFS. Subjective results indicate no identifiable pattern in relation to subjective fatigue during PEM. Future research should focus on a larger clinical trial to further understand the implications and consistency of the data from this study.
Another great research development and welcome news for those who experience chronic pain (sent for those not on Facebook).
A test developed by neuro-scientist Mark Hutchinson identifies the intensity of chronic pain by colour bio-markers. Professor Hutchinson says it will mean better diagnosing of pain in people who can’t communicate the extent or source of pain such as babies, people with dementia, and those whose English is not their first language. He is the Director of the Australian Research Council Centre of Excellence for Nanoscale BioPhotonics at the University of Adelaide.
“This proposal aims to uncover the immunological basis of ME/CFS”. Ron Davis – grant application
Sometimes the third time is the charm. Ron Davis has gotten (and been turned down for) many NIH grants but even he was shocked by the response to his first couple of attempts to get an NIH grant for chronic fatigue syndrome (ME/CFS).
Ron Davis and the Open Medicine Foundation have come a long way in three years.
This time, though, the NIH came through. Davis’s first try at a NINDS review panel was rejected by reviewers who refused to even assess the grant. His second try for an NIH ME/CFS research center was met with such a weird response that he went before an NIH committee to protest. His third try, the first apparently through the grant review panel for ME/CFS (Special Emphasis Panel [ZRG1-CFS-M (80)S]), thankfully, met with success.
The big multi-year, multi-million dollar RO1 grant to the Stanford Genome Center titled “Molecular and Single Cell Immunology of ME/CFS” lasts for five years and pays out a cool $745,000 this year.
Remarkably, Davis, at 76, was the first and is still the only ME/CFS research center grant applicant to flip his big, NIH Center’s grant application into a smaller – but still quite hefty – grant application since the Research Centers were announced in the fall of last year.
This was a grant application, in truth, that one would have expected to succeed. It ticked all the boxes; it features cutting-edge technologies featuring two highly respected researchers from a top academic institution. It’s the kind of application the NIH has said it’s wanted from ME/CFS researchers for years.
A rejection would have raised a big red flag about bias, but this time the grant review panel came through giving Davis’s application extremely high scores and the NIAID funded it.
The grant combines Stanford immunologist Mark Davis’s work on T-cells with Ron Davis’s work on HLA genes. Mark Davis is a T-cell expert – he’s spent 35 years studying these prime movers of the immune system. T-cell and B-cells are the big guns of the adaptive immune response which swoop in later in an infection to clear it out. T-cells are unique in their refined approach to pathogens; while other immune cells react to whole antigens, T-cells need only a fragment of an antigen to respond. Their job is a staggeringly complex one; to produce literally billions of potential binding sites that are able to capture small bits of pathogenic proteins and then lift them to the surface of the cell so that the immune system can respond to them.
Once a pathogen is found, T-cells create specially designed copies (clones) of themselves that swarm through the body targeting infected cells or the actual pathogen itself. As Mark Davis explains in the video below, that process is occurring in ME/CFS; ME/CFS patients’ T-cells are busily churning out identical copies of themselves; they’ve responded to something with a fury.
The best candidate is a pathogen – a virus, bacteria, fungus, etc. – which may be gone, but which has ticked off an overactive immune response that is now attacking the body, producing an autoimmune disease.
In this study, Mark Davis will look at an array of T-cells to determine the breadth and extent of the T-cell activation in ME/CFS. He’ll pair that with new technology developed by Ron Davis which gives researchers a better handle on the genes used to capture those pathogenic antigens. They’re found in the most mysterious part of our genome in the HLA locus.
Because the HLA genes also help the immune system differentiate “self” from “non-self” cells, they also play a major role in autoimmunity. Studies indicate that people with certain HLA types are more at risk for autoimmune diseases such as type I diabetes, lupus, myasthenia gravis, Sjögren’s syndrome, narcolepsy, and others. This study will assess the HLA locus of a large number of ME/CFS patients.
Finally, the study will use new techniques developed at Stanford to try and determine what those activated T cells in ME/CFS are targeting.
By the time the study is done, we could know if ME/CFS is an autoimmune disease or is caused by a pathogen (or both!); plus, we could know what specifically has tweaked our immune systems. Plus, Ron Davis, in a section of the grant, and which shows his predilection for long-term thinking, envisions the study as the opportunity to build a new (and precise) molecular framework for understanding, diagnosing and treating ME/CFS.
“This project will build a precise framework for ME/CFS as a molecular and immunological disease, opening up broad new possibilities for research, diagnosis, and treatment.”
Davis is all about getting at the molecular nature – the very basic building blocks – of ME/CFS – a pursuit he believes will illuminate other diseases.
“Moreover, the similarity of ME/CFS to other medically challenging diseases like Lyme disease, multiple sclerosis, Gulf War Illness, fibromyalgia, and more means that the insights derived here could be relevant to many millions of patients.”
Just a couple of months ago, Davis was so concerned that the OMF’s inability to secure funding for an NIH research center grant would impact donations that he publicly shared some of the head-shaking comments by the reviewers.
Boy was he wrong. On Giving Tuesday the OMF hoped for $150K and got $450K. They parlayed that and other donations to fund a $1.2 million Collaborative Research Center Ron Davis has built at Stanford. Financially that put them on par with the three NIH funded ME/CFS research centers for at least this year.
That money is going to fund Mark Davis’s enticing T-cell work, Mike Snyder’s huge genetics, genomic and immune family study and Ron Davis’s nano-needle and other work.
Pineapple Fund Steps In Again
Then a couple of weeks ago came a $1 million grant from the Pineapple Fund. Yesterday, impressed and probably shocked by the outpouring of thanks from the ME/CFS community – plus strong support from the research community – Pine just added in another $4 million to the $1 million donation.
Get this – with all the many worthy projects the Pineapple Fund is supporting – the sub Saharan water project, the healthcare for everyone project, the fighting aging project – Pine has chosen to give the OMF one of his biggest donations
Pine’s clearly got it about ME/CFS. He/she knows the disease affects a lot of people, is very serious, and yet gets very little resources. Pine was looking to make a difference in people’s lives – and ME/CFS is a great place to do that. If any disease is due for a big jump in support it’s ME/CFS.
“I had known about ME/CFS for a while, and I know it is a serious condition without much in the way of treatment or research. I’ve recently received letters of support from esteemed academics in the field strongly supporting OMF, and that helped me make the decision!”
From the Open Medicine Foundation announcement:
“Thank you, Pineapple Fund, for seeing beyond the cloak of invisibility laid upon this horrid illness and recognizing the desperate need. The hope this provides is palpable.” Liane B.
A Harbinger of the Future?
The huge Pineapple Fund donation is hopefully a harbinger of the future. It suggests – as we know – that when people really get it about ME/CFS they’re often moved to support it.
Our story is our greatest asset which is why sharing it is so critical. It’s a horrible story – millions of ill people ignored by the NIH and doctors for decades – but it’s also a moving one. Davis’s sharing it again and again at Stanford has elicited strong support there. It recently elicited strong support and interest at the University of Texas. The shares from the patients surely helped Pine support the research so generously. For people who really want to make a difference ME/CFS is a natural.
From the Open Medicine Foundation Announcement:
“Thank you for giving hope to people suffering with this disease. My son has had it for about 10 years, most of that time it was not recognized as an illness, let alone a serious one. A life full of exhaustion and pain may come to an end soon for him and other sufferers.” Ann W.
A New Problem
Now Ron Davis has a new problem. How to best spend all that money. The donation will quadruple the resources of the collaborative Research Institute and allow him to greatly accelerate his efforts. He’ll be able to hire researchers for multi-year stints – something he’s wanted to do for years.
All the work at Davis’s research center is exciting. I’m particularly intrigued to see if Davis can use the nano-needle to bring clarity to the energy problems in ME/CFS, uncover possible factors in the serum that are playing a role, develop a diagnostic test and test treatments. The Mark Davis T-cell study could determine what’s tweaking the immune system of ME/CFS patients. Then there’s the SJSU blood vessel study and the big Mike Snyder family study. Plus we’re waiting on the results of the severe patient study.
That’s a lot of work and a tremendous amount of movement for the Open Medicine Foundation in just five years. That movement is all the more remarkable given that neither Ron Davis nor Linda Tanenbaum had done anything like this before. Their creative approach to ME/CFS has been inspiring.
We shouldn’t expect that the $5 million is going to bring us the answer to ME/CFS – major diseases get hundreds of millions of dollars a year – but it’s going to jump start Ron Davis’s work – and who knows where that will lead…
The National Institute for Health and Care Excellence (NICE) announced yesterday they are to begin a review of its 2010 guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) following a recent public consultation with patient and professional groups.
According to the ME Association in the UK, ‘they will now commence a FULL REVIEW of the guideline for ME/CFS, effectively overturning previous expert advice not to update it’.
Sir Andrew Dillon, NICE Chief Executive, said: “The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline.”
“We will now recruit a guideline committee which will include people with the condition and their carers, the healthcare professionals who treat them and the organisations which commission that treatment. As with all the guidance we produce, we will also ensure that stakeholders have the opportunity to provide evidence and insights throughout the development of the guideline.”
Further details about the review, including a scope outlining what it will cover and information about recruitment to the guideline committee, will be published on the NICE website as they become available.
This is excellent news for people with ME/CFS both in the UK and in New Zealand. This review comes at a time when research is yielding promising results. Most relevant to the NICE guidelines review, is the research into the impact of exercise on the disease being conducted here at our own Massey University and in the US. Our Ministry of Health very much looks to the UK for clinical models and guidelines, so we hope that this review will result in better outcomes for people diagnosed with ME/CFS.
On August 12, 2017, the Community Symposium on the Molecular Basis of ME/CFS convened ~300 researchers, clinicians, patients, caregivers, families, and advocates at Stanford University – and nearly 3000 more via livestream. Here’s what happened.
The symposium was chaired by genomics and biotech giant Dr. Ron Davis, Professor of Biochemistry and of Genetics at Stanford University. Ron is Director of: 1) the Stanford Genome Technology Center, 2) the Chronic Fatigue Syndrome Research Center at Stanford University, and 3) the Open Medicine Foundation Scientific Advisory Board. Recognized as one of the greatest living inventors, Ron is credited with helping to launch the field of recombinant DNA, facilitating the Human Genome Project, and creating technologies that have shaped modern genetics.
“The Human Genome Project taught us that we can take on a large project like this and succeed,” said Ron. His approach to ME/CFS research reflects his lessons from the Human Genome Project: think big, try new technologies, and bring together interdisciplinary experts.
The week’s events were focused on a molecular perspective of ME/CFS. Why is this exciting? Because it means we can study ME/CFS with a powerful array of molecular and omics techniques now reaching maturity, and it means we can look for molecular therapies. In short, a molecular approach opens up the possibilities for this disease as it has for so many others. With a major issue in ME/CFS being a massive depletion of energy, it stands to reason that mitochondria, the centers of cellular energy metabolism, are a great place to look.
Ron reminded the audience of the goal behind all of this work. “Our holy grail is a cure, but we’ll take treatment,” he said. “When we see a result, we always ask, ‘what does this mean for treatment?'”
The theme of collaboration was evident throughout. The willingness of researchers to share unpublished data in a public symposium speaks to their dedication to moving the field forward by working together. What was especially exciting to see, as Capecchi noted, is how many researchers in different fields are being drawn to ME/CFS. “This is not a disease that can be solved by one person. It needs a community, and lots of expertise,” said Ron. “I will work with anybody to do this.”The collaborations in ME/CFS extend in a unique way to the patients.
“The patient community has been phenomenal in participating in our research,” said Ron. He noted how valuable partnering with patient organizations, communities, and individuals has been for our efforts in advocacy, fundraising, and research.
For more on the Symposium go to: https://storify.com/raekaaiyar/2017-community-symposium-mecfs
For Cort Johnson’s (patient advocate and author of Health Rising website) summary go to: https://www.healthrising.org/forums/threads/omf-symposium-to-provide-first-look-at-metabolomic-immune-results-in-me-cfs.5521/
If really up for it, follow the live streamed conference below:
