Dr. Ros Vallings discusses COVID-19 long-haulers and ME/CFS on Nine to Noon on Radio New Zealand.
News
All the latest news from ANZMES.
New research shows ME/CFS is not psychosomatic
News articles regarding Professor Warren Tate’s research that shows physiological and biochemical changes and dysregulation in people with ME/CFS compared to healthy controls. Read more here:
https://www.nzdoctor.co.nz/article/undoctored/proof-chronic-fatigue-syndrome-not-psychsomatic
Prof. Tate: ME/CFS is not psychosomatic
University of Otago researchers have proved in two studies that chronic fatigue is not psychosomatic, despite the widely held belief.
The Panel on RNZ speak to Emeritus Professor Warren Tate, from the University of Otago’s department of Biochemistry.
Richie Barnett and Prof. Tate on Breakfast
Watch Jenny-May Clarkson interview Richie Barnett and Professor Warren Tate on Breakfast (via Facebook Watch).
New Answers for People Suffering with Chronic Fatigue – A new study on Chronic Fatigue Disorder (ME/CFS) is set to help health services better support those living with the disease. While it’s often labelled as depression or made up symptoms, the research confirmed ME/CFS is not a psychosomatic illness. Former rugby league football captain Richie Barnett shares his story with chronic fatigue this morning, along with Professor Warren Tate who has undertaken extensive research.
https://www.facebook.com/Breakfaston1/videos/1001270763701266
Lightning Process
There are some therapies which are commercially based, and they come under many names. The Lightning Process is one that has been widely known. This is a psychological approach based on neuro-linguistic programming, a therapy which may have benefits to some people with ME/CFS, especially those who have depression or anxiety.
There have been claims made that the Lightning Process is a cure and some have said it did cure or significantly help them, but as yet no scientific trials have been done with a group selected from stringent ME/CFS research guidelines. It is possible responders may have conditions other than ME/CFS.
We are concerned by its promotion of it as a “cure” for ME/CFS. At present this is not scientifically proven. We have received reports from those who have spent a great deal of money to try this or similar treatments who have made no improvement, were not cured or have relapsed severely. The guilt experienced by those who are not cured can be devastating. On 27 September, 2017, the ME Association in the UK published this article on their website:
The following is a quote from Dr Charles Shepherd, medical advisor to the ME Association: “The Lightning Process” is not a treatment that we endorse or recommend for people with ME/CFS.
“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms. “Others who have gone through the LP programme report that they have spent huge amounts of money with no obvious benefit. “It may well be that there are some people with a general fatigue state, resulting from stress, emotional or psychological problems who could benefit from a ‘mind over matter’ retraining approach such as this. Such fatigue states are a separate entity and not to be confused with ME/CFS. “There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.”
Since Dr Shepherd wrote this statement, there has been even more robust scientific research into ME/FS as a neuro-inflammatory disease. One might do well to remember that multiple sclerosis was once seen as a kind of “hysteria,” until MRI machines were able to identify the lesions associated with this disease on the myelin sheath of the spinal cord. Research into the biomedical causes and potential treatments of ME/CFS is proceeding at a rapid rate and new therapies are being developed, including the possibility of using existing medications to treat the illness.
Along with providing support, it is the aim of ANZMES to provide sufferers of ME/CFS with accurate and up-to-date medical information. We encourage all patients, medical practitioners, family members or the general public to contact us with any questions you may have.
Associated Myalgic Encephalomyelitis Society of New Zealand
Gavin McGregor’s photography project
ANZMES is supporting Gavin in his project and will be using his work
for awareness raising and to advocate for those with ME/CFS. We thank
Gavin for this opportunity.
I am a photographer working on a portrait series on living with ME/CFS.
For this series, I am looking for people who are willing to sit for a
portrait and talk about how ME/CFS has impacted them.
The purpose of the project is to increase awareness and understanding
of how living with the condition impacts people’s lives in a very real
way.
This series will consist of a portrait series and personal stories of
those living with ME/CFS and will culminate in an online exhibition.
As well as ANZMES having the images and stories for their use as a
resource to further their advocacy work.
My partner lives with ME/CFS so I have an understanding of the
condition and a motivation to increase awareness of it.
If you are interested in being involved and telling your story. Please
don’t hesitate to get in touch
Gavin McGregor
0212774788
gavmc23@mac.com
https://www.gavinmcgregor.com
ME Day – 12th May 2020
Today, 12th of May 2020 is ME Day!
As part of ANZMES awareness raising we are sending out these posters.
Could you please share them far and wide so many people get the message
that ME is an invisible Illness.
You can see a broken leg or arm as you have a cast on but many of the symptoms of ME are invisible and can not be seen.
Sharing these posters helps raise awareness and understanding.
Take Care and be kind to yourselves.
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
