Open Medicine Foundation Community Symposium on the Molecular Basis of 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 BoardRecognized 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 The willingness of researchers to share unpublished data in a public symposium speaks to their dedication to moving the field forward by working together.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:

 

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Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) is an Inflammatory Disorder

http://simmaronresearch.com/2017/08/major-stanford-study-indicates-chronic-fatigue-syndrome-mecfs-is-inflammatory-disorder/

Conclusion (copied from the link above)

lighthouse

This study, as did the Lipkin/Hornig study, suggested you have to approach ME/CFS differently than other diseases to be successful.

One of the things that emerged from this study is that ME/CFS really, really is different and woe to any researcher who assumes that it’s not. The regular rules of the road do not apply – you can’t just measure cytokine levels and expect to get anything. You have to dig deeper, and what this study and the large Lipkin/Hornig study before it demonstrated was that if you do dig deeper, you might stumble on something extraordinary.

The study’s excellent pedigree – it’s size, the lab it took place in and the journal it was published in – guarantees it will get noticed and that’s a good thing. The most important aspect of the study may be the legitimization it confers on the illness. Hopefully the study will introduce new researchers intrigued by what could be a new type of inflammatory disorder to the field.  While more work is needed, the study also points to possible future effective treatment options. Lastly, the study indicates, as did the Lipkin/Hornig study, that bigger really is much, much better in ME/CFS research. Hopefully funders will take a cue from these large studies, and support the bigger and more definitive studies this disease needs to move forward

Street Appeal Collection Thursday 15 June 2017 Wellington CBD

 

Empowering People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia & Related Conditions

 

We are having an Street Appeal on

Thursday 15 June 2017

10am – 2pm

We need your help

Can you hold a collection bucket for an hour or more? 

Can you ask a family member or friend to hold a bucket on the way to work or during their lunch hour?

Four locations in Wellington CBD

To assist please email

information@wellme.org.nz

Professor Anne La Flamme to speak on ‘When the Body’s Immune system changes from Friend to Foe’ at St Johns in the City Tuesday 9 May: 6:00pm

WellMe is pleased to announce Professor Anne La Flamme as our keynote speaker at its Keynote Speaker Wellington meeting to be held at 6 pm, Tuesday, 9 May at St Johns in the City conference room, Ground Floor, corner of Willis Street, Dixon Street, Te Aro, Wellington 6011.

Professor La Flamme has been in New Zealand for eleven years, and is a Professor in Cell and Immunobiology at the School of Biological Sciences, Victoria University of Wellington. She is also Head of the MS Research Programme at the Malaghan Institute of Medical Research. Professor La Flamme is one of New Zealand’s leading Multiple Sclerosis (MS) researchers and is focused on finding a cure for this immune mediated disease, and in particular aims to find a treatment that will benefit the sub-set of MS patients that do not respond to any existing treatment.

Professor La Flamme received her BSc in Life Sciences from the Massachusetts Institute of Technology and her Masters in Molecular Parasitology and PhD in Immunoparasitology from the University of Washington, Seattle. After receiving her doctorate, Professor La Flamme spent several years at Cornell University studying how parasites alter the host’s immune response and cause immune-mediated pathology.

Recently, Professor La Flamme’s laboratory found that a commonly used anti-psychotic drug is effective at modifying MS in an experimental model of the disease. Through a Neurological Foundation-funded project, she is investigating the potential of this drug to treat MS and the findings will guide future trials of the drug in MS patients. If this drug is effective for the treatment of MS, new insights into immune dysfunction and its contribution to disease pathogenesis will emerge.

Professor La Flamme will talk on ‘When the Body’s Immune System Changes from Friend to Foe and its impact on our health’.

Dr Rosamund Vallings spoke on the latest international research on ME/CFS

In September we held our AGM. Guest speaker Dr Ros Vallings, spoke to the meeting about recent research findings presented at the 11th Invest in ME – Research International conference in London, June 2016 – the theme being ‘A New Decade of Invest in ME – Research’.

Dr Rosamund Vallings: MNZM, MB BS (Lond), MRCS LRCP, Dip Clin Hyp, BA (Massey)

Dr3

Dr Vallings has run a medical practice in Auckland since 1966 which for the past 35 years has specialised in those suffering from Chronic Fatigue Syndrome (CFS/ME)  and related conditions. Dr Vallings has been involved in diagnosing and managing these patients, running regular seminars for these patients and producing an education booklet and a number of information sheets. Dr Vallings has published two books –‘Diagnosis and management of CFS/ME’ and ‘”Managing ME/CFS” a  guide for young people.’

Dr Vallings is the medical adviser to the ANZMES–the national organisation supporting those with CFS/ME and has been involved in GP and student education at the University of Auckland speaking to medical groups around NZ. Dr Vallings has regularly attended international CFS/ME conferences and presented papers.She has visited a number of CFS/ME centres overseas and maintains contact with many overseas CFS/ME organisations

Dr Vallings is a member of the International Association for CFS/ME (IACFS), has reviewed the overseas guidelines for diagnosis and management of CFS/ME for the NZ Guidelines Group, with a view to providing a set of NZ Guidelines. Dr Vallings is also a co-author of the IACFS/ME Physicians’ Primer, and has participated in the international group producing the Canadian and International Consensus Definitions for CFS/ME. She is currently involved with an international group writing a Paediatric Primer for Physicians and has frequently been involved in collaborative research both in New Zealand and overseas.

In January 2008, Dr Vallings was awarded Membership of the New Zealand Order of Merit for services to CFS/ME.

In October 2016, Dr Vallings was presented with the prestigious Nelson Gantz Clinicians Award. The Award is given to a physician each year who emulates Gantz’s clinical acumen, his passion for medicine, and his empathy for people with CFS/FMD. Congratulations Ros!

Michael Turner’s not lazy: he’s just been ‘tired my whole life’

 JOEL MAXWELL – Dominion Post 14 May 2016

Michael Turner, with dog Softy, now studies from home after a diagnosis of fibromyalgia.

 

Michael Turner, 18, has been tired his entire life: even sleep is exhausting. Just don’t tell him he’s lazy.

Each day at home, before he starts his lessons, he does gentle exercises such as kung fu stretches to help beat the “heavy gravity, heavy pain” bearing down on his body.

Turner has become the young face of chronic fatigue, speaking out on Friday to help people understand why he’s not just a lazy teen, and to help other teens with his condition.

The pain kicked in through his body from the age of 10.

“I knew something was up, and that’s when doctors did many tests. All the tests known to mankind basically.”

The diagnosis was eventually fibromyalgia, a disorder that causes pain in muscles and around joints, exhaustion and concentration problems.

Michael Turner, with dog Softy, now studies from home after a diagnosis of fibromyalgia.

“I do sleep a lot, but unfortunately that sleep is not a deep sleep, so I still get tired from that.”

Last year he stopped studying at school, where his condition was not understood. He said school life pushed him so hard that he couldn’t cope with the pain and exhaustion.

He started learning from home on the Kapiti Coast, through correspondence school, which was more flexible.

On a normal school day he’ll get up around nine, have breakfast and then gradually get into his school work. He’s leaning towards a career in IT or web development.

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“Unfortunately when you talk [to people] about the problem, they do believe you, it’s just they don’t take it seriously.”

People with the disorder might seem lazy, he said, but that was not because they wanted to be.

“If you had the same condition you would be taking it easy, because of the pain. We’re listening to our bodies, instead of breaking them.”

Turner said he wanted to help other young people with a similar diagnosis connect with support groups like WellMe in the region.

Dad Darryl Turner said the process of gaining a diagnosis, which took years, was a “real journey” for their family.

He, mum Gundy Turner and their son had to use teamwork to get through the challenge.

“It’s very tough to see a child in pain, and with fatigue issues all the time. Waking up tired and foggy.”

Sandra Forsyth, vice-chairwoman ofWellMe, said fibromyalgia was one of a group of overlapping auto-immune disorders including chronic fatigue syndrome, which was now called ME/CFS.

“Chronic fatigue is not just being tired but absolutely bone-numbingly exhausted. For those who run or swim or train vigorously it is akin to that feeling of lactic buildup and exhaustion that follows a huge training session.”

New Zealand expert Rosamund Vallings said ME/CFS was usually triggered by viral illnesses such as the flu or glandular fever.

That set off abnormalities in the immune system, which produced “a whole lot of chemicals and hormones which cause all the symptoms, including extreme fatigue”.

Chronic fatigue was “a big issue” for young people, she said, with some data suggesting as many as one in 100 were affected after catching common teen disease glandular fever.

“The rate generally for the population at large is four per thousand … but it is definitely more common in young people.”

BONE TIRED

Sandra Forsyth said most people found chronic fatigue-inducing diseases rendered them invisible to friends and the wider community, “as they lack the energy to participate in everyday life”.

“This social isolation is very real and support can be hard to obtain.”

WellMe, has branches throughout the Wellington region.
– Stuff

If you, or your child has  Fibromyalgia or ME/Chronic Fatigue Syndrome and would like to speak with one of our Community Support Coordinators, call free:

0800 632 847 (Claire – Wellington Region)

0800 600 113 (Judy – Horowhenua)

Donate to WellMe and support  the 2000 + people living in the Wellington/Horowhenua Region with ME/CFS & Fibromyalgia.

Account name: Wellington Region ME/CFS Support Group Group Inc

Account number: 03-0521-0243307-00