NEW GUIDELINES FOR DIAGNOSING AND TREATING ME/CFS A resource for clinicians and patients

Please note: this is an American guide so some of the drugs that are suggested for use are not available here in New Zealand.

The U.S. ME/CFS Clinician Coalition,

A group of U.S. ME/CFS experts, has authored a handout on the basics of diagnosis and management of ME/CFS.  This handout is being made available for the medical community to help them better understand how to recognize ME/CFS and how to appropriately care for patients. Patients may also find it useful to provide this handout to their own providers.    ME/CFS experts in the U.S. formed the ME/CFS Clinician Coalition in March 2018 with the goals of advancing the clinical care of people with ME/CFS and providing clinical insights to researchers in the field. More information on the 2019 summit is available here. Linda Tannenbaum actively participated in these coalition meetings.   The handout on diagnosis and management provides a link for medical providers who are interested in getting more information on the coalition.

Help “Advances in ME/CFS Research and Clinical Care” win the Frontiers Spotlight Award!

Advances in ME/CFS Research and Clinical Care, a series of 24 papers on ME/CFS published in 2018-2019 in the online (open access, peer-reviewed) journals Frontiers in Neurology and Frontiers in Pediatrics, is in the running to win a $100,000 prize! The prize money must be used to fund a scientific conference on the topic. If it wins, Ken Friedman, the topic editor, has indicated he will donate the money to the IACFS/ME to help fund their 2020 International conference!

The editors of Frontiers determine the winner of the prize; there is no nomination process. The most active, collaborative and impactful Research Topics from the last year are shortlisted and then the Jury, drawn from members of the Frontiers Editorial Board, is tasked with choosing the final winner. Finalists are selected and judged on scientific and editorial excellence, international reach, subject novelty, and interdisciplinarity of their Research Topic. 

An important factor is the interest the topic generates around the world, based on article views and downloads, citations, and international reach. We can help by viewing/downloading articles, and encouraging others to do so, especially viewers outside the U.S.

It also helps to post article links on Facebook or Twitter, retweet, and discuss in blogs and on Reddit and Google+. All these metrics are tracked and count toward the impact score.

For a complete list of papers with links, visit https://www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles. This special issue was edited by Drs. Kenneth Friedman, Cindy Bateman, Alison Bested and Zaher Nahle.

The papers will be collected and published as a monograph, and cover a wide variety of topics in ME/CFS research. Find several that you are interested in and click away!

  • A brief history of the struggle for recognition of ME/CFS as a disease, and the struggles to establish ME/CFS research and clinical care
  • Identifying the cause or trigger(s) of ME/CFS
  • Case definition: What symptoms best characterize the disease?  What symptoms are mandatory to diagnose ME/CFS?  How can we make diagnosis as easy as possible for the clinician? 
  • Methodologies for validating a ME/CFS diagnosis
  • A new method to determine the number of individuals within a given population who suffer from the disease
  • A sampling of current, ongoing ME/CFS laboratory research: microbiome, the role of neuroinflammation and cytokines, using a bio-bank to study tissue abnormalities
  • Clinical research
  • Challenges of providing healthcare to the ME/CFS population
  • Special needs of pediatric and adolescent patients

Last year’s winner received more than 80 citations, 70,000 views and 9,000 downloads, and one of the papers was featured in The Washington Post. The 2017 winner brought together 630 authors, publishing 149 papers and receiving more than 1.2 million views and downloads. So far, the ME/CFS topic has nearly 140,000 views.

We know that Dr. Anthony Komaroff’s recent paper on ME/CFS in the Journal of the American Medical Association was one of the top five in JAMA in July, so there is great interest right now in ME/CFS. Let’s help publicize these papers and generate even more interest!

Here is a shorter version for Facebook or Twitter, if you could post this also.

This series of 24 of open-access, peer-reviewed articles on ME/CFS that appeared in the journal Frontiers in Pediatrics in 2018-19, is in the running to win a $100,000 prize based upon the decision of the editorial board, BUT INFLUENCED BY READER INTEREST (clicks, downloads, shares)…so please click, share or download: https://www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles

Thank you!

Charmian Proskauer
Massachusetts ME/CFS & FM Association
U.S. Action Working Group

Dry July – Energy Drink Free to raise awareness for ME/CFS

Hi there. My name is Jeremy and I’m an addict.
No my addiction isn’t alcohol – it’s something much worse…..Energy Drinks.
The first thing I do in the morning is crack open a can of ‘V’ and call that my breakfast.
Throughout the day I drink numerous cans and the end result becomes approximately a litre or more every day.
This may seem hilarious to some but it’s a major addiction and a serious problem.
The amount of caffeine and sugar inside energy drinks is ridiculous and I’ve become completely dependent on it to function in my day to day life.
You can view Jeremy’s Givealittle page here

Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome – Jama network

When does an illness become a disease? When the underlying biological abnormalities that cause the symptoms and signs of the illness are clarified.

Over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong. Moreover, most of the abnormalities are not detected by standard laboratory tests. In 2015, the Institute of Medicine of the National Academy of Sciences concluded that ME/CFS “is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients,” affects up to an estimated 2.5 million people in the United States, and generates direct and indirect expenses of approximately $17 billion to $24 billion annually.

To read the full article see this link https://jamanetwork.com/journals/

Congratulations to the Winners of ANZMES Writing Competition

We had some great entries and would like to thank everyone who entered. These are the winning entries; with 1st prize winning a free membership subscription for a year, 2nd prize a $20 Gift Voucher and 3rd prize a $10 gift voucher.

Research into ME/CFS means

Progress
It
Reveals hope
Reflects care
Fosters understanding
It
Inspires compassion
Legitimises suffering
Encourages solidarity
It
Voices frustration
Confronts ignorance
Silences detractors
It
Sparks interest
Promotes awareness
Educates others
It
Builds knowledge
Supports initiative
Justifies funding
It
Demands attention
Requires recognition
Urges action

Bethne Dodd. ©

Hope

There are times when hope
for a cure or treatment for ME/CFS
can seem elusive
time moves slowly
the view from my sofa
an unrelenting grey

At such times it helps to remember
in laboratories, offices, hospitals and
universities around the world
there are teams dedicated
to finding the answers
to our particular puzzle

Theories as to cause and cure
put forward and tested
and all, regardless of success
are steps towards the goal
the process of discovering the answer
includes discovering what the answer
is not

I believe the day will arrive
when we will have our answer
I feel immense gratitude
to all those working to that end
testing theories, developing tests
and medicines
and all those participating in trials
people I will probably never know
but to whom I owe so much
not least the return of hope

Wendy Allen ©

The War Within
I used to be a soldier and so proud I was to serve. 
Active strong and healthy, with an impressively steady nerve. 
I always aspired to take a step and go further than the rest 
Beyond fatigue, aches and pain, to be the very best.   

And as a younger man, I dreamed big and was proactive when I played 
Hoping that in my older years, my dedication paid. 
Then one somber month alone, I began to feel unwell 
But the warrior inside of me, would never ever tell. 
So I fought and fought the hardest battle, I had ever had to fight 
But this battle was different and would not be beat by might. 
The more I fought, the more I tired, and down and down I went 
Even then I fought some more, until all I had was spent. 
That month grew to two, then three and four to five 
Too tired to fight anymore, I barely felt alive. 
It doesn’t matter how tough you are, M.E. don’t give a damn. 
The harder you try to fight it, the more it’ll drag you down.   

Life has changed a lot these days, my dreams no longer bold 
No more dreams of scaling mountain passes in search of Aztec gold. 
Holding down a part time job it seems, is challenging enough 
‘cause M.E is my full time now and the pay is rather rough. 
Struggling financially, with a massive loss of pride 
If only there was ever a way, off this retched hellbent ride.   

Some confidence, pride and security, to walk the local hills 
To eat a spicy curry, to enjoy some simple thrills! 
To earn a buck, to make my mark and have some dignity 
That is what ME/CFS research has come to mean to me. 

Conway Judge ©

Harvard Collaboration Research Presentations Now Available

Great News!

Recordings of individual presentations from the OMF-funded Inaugural Harvard ME/CFS Collaboration Symposium “Finding Clarity” Community Day are now available. Symposium presentations included a clinician panel featuring Dr. Amel Karaa, Dr. Anthony Komaroff, and Dr. Donna Felsenstein and individual presentations by Dr. Michael VanElzakker, Dr. Ron Davis, Dr. Maureen Hanson, and Dr. Wenzhong Xiao. Introductory, overview and summary remarks were made by OMF Founder & CEO/President, Linda Tannenbaum and Dr. Ron Tompkins. View all recordings here.

Public Donations Towards Professor Warren Tate’s Research into ME/CFS Welcomed!

Professor Warren Tate’s biochemist research work is very well respected and has been presented on the international stage in recent times; he spoke at the 12th International ME Conference in London in November of 2017 (see his profile on this page) http://www.investinme.org/IIMEC12.shtml and a presentation was delivered by one his colleagues at the recent Griffith University CFS/ME conference in November last year.

Prof Tate’s research group continues to work towards a bio marker test
for ME/CFS.

More details about his research will be uploaded soon.

If you would like to donate towards his research please make donations through this link. https://alumni.otago.ac.nz/donate/myalgic-encephalitis

Report of Dr Vallings’ Meetings Held in Nelson; & Long Time Member of Nelson Group Honoured.

Dr Vallings and Clare Moody at the Recent Meeting in Nelson.

Dr Vallings’ Public Presentation on ME/CFS & FM Diagnosis and Management – based on the latest research held in Nelson on Monday 11th of February.  

There was a good turnout with around 90 people attending the meeting.

Dr Ros Vallings talk was very informative, helpful and well received; there were some great questions afterwards.  Dr Vallings was able to explain such a lot, so clearly in a relatively short period of time and yet give everyone something helpful to take away with them

A lot of positive feedback was received on the day of the meeting and afterwards via email.

Some of those in attendance expressed how Dr Vallings had helped to validate their experience of the illness which brought comfort to them.

A highlight of the meeting was that Doris Gilbertson, who has been an active member in the Nelson region for 40 years, (and who was known by Dr Vallings) celebrated her 93rd Birthday on the day of the meeting, so the Nelson group took the opportunity to honour her work and commemorate her birthday at the same time (see photograph below)

Two display tables were put out with both Local and National Resources.  Many of these resources were picked up. There were 14 people who signed up to join the Nelson group and email list on the day

A meeting for GP’s was also held and despite the fires at the time a good number turned out for the meeting. All in all it was a very beneficial visit by Dr Vallings.

Clare Moody (Report Abridged )

Doris Gilbertson and Clare Moody