Here I share Chronic Fatigue Syndrome news to communicate information about the chronic illness CFS (also known as ME - Myalgic Encephalomyelitis).
The articles below are likely to be of interest mainly to those with the auto-immune illnesses such as CFS, Myalgic Encephalomyelitis, CFIDs, SEID, Fibromyalgia and Post Viral Fatigue.
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Apologies but I haven't managed to keep up with much Chronic Fatigue Syndrome / ME research in 2018. Here are a few items!
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Katherine T Owen, webmaster at HealingCFSME.com
Click here for Chronic Fatigue Syndrome News for 2013-2016, or click on the year related to the CFS research of interest.
Click on the link above for all of the following Chronic Fatigue Syndrome news:
Click through for the following two articles on research into the brain and Myalgic Encephalomyelitis
The relaxation response can improve mitochondrial functionClick through for the following Chronic Fatigue Syndrome news prior to 2012 and for a list of CFS blogs by other people
The search for a drug for Myalgic Encephalomyelitis /CFS - what has been researched?
Click on the link above for all of the following CFS news:
South Africa - Prof Pretorius, University of Stellenbosch
UK - Prof Kell, Liverpool University
Blood samples from people with Long Covid show micro clotting.
Blood samples from people withME patients showed the same.
These clots cause problems in the vascular system. They clog up smaller blood vessels and deprive them of oxygen.
Oxygen deprivation and the affect on brain, muscles and other organs could explain the diverse symptoms in ME and long covid
Conclusion: only 9% recovery
More information here: https://www.mdpi.com/2077-0383/12/3/741
When: October 2021
Who and where:
Gustavo Aguirre Chang, National University of San Marcos
Aurora Natividad Trujillo Figueredo, SIGESA
Please copy and paste the link to find out more.
Abilify is a drug that is helping Whitney Dafoe with cognitive function at the time of writing.
There is an excellent article on the website Health Rising.
Abilify is usually used for conditions like bi-polar or schizophrenia and at a much higher dose.
The comments are also worth reading.
They suggest that for some Abilify is a solution that lasts for months rather than longterm.
Some find if they take a break and go back on, it is effective once again.
Even so... to find a treatment that works at all for CFS/ME is a beautiful thing and gives hope.
A study reports that having a close relative with the disease may increase your risk of developing Chronic Fatigue Syndrome by 13%.
Who and when: Chu L, Valencia IJ, Garvert DW, Montoya JG. Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome. Front Pediatr. 2019
More on this CFS news here.
12 November 2020: a blood biomarker
Where: Researchers from the University of Montreal and the CHU Sainte-Justine
Team leader: Professor Alain Moreau
What? The identification of a blood biomarker to identify patients with ME and CFS.
Published where: journal Scientific Reports
More information here: https://www.nature.com/articles/s41598-020-76438-y
DecodeME DNA research study announcement
Request for volunteers to send in saliva sample
Funding has been secured for a study to analyse DNA from the
saliva of 20,000 people with ME/CFS.
The aim is to see whether the disease is partly genetic.
If so, the aim is to help pinpoint the genetic component which causes it.
The study aims to help bring understanding of the disease and to find treatments.
Press Release: £3.2m funding for DecodeME, largest ever DNA study of ME
Website where you can read FAQs and sign up: http://www.decodeME.org.uk
focusing on recruiting from the UK for now and are already well on our
way with early sign-ups.
But we’ll expand to other countries if necessary,
so if you’re outside the UK, please do sign up now.
You must be 16 or over to take part. "
Katherine: please do share this as #MEAwareness on your social media channels. Thank you.
I am indebted to the following information to an article on the wonderful Health Rising website.
You can read more there.
Paul Fisher, an Australian specialist in neurodegenerative diseases and the mitochondria.
Part of the ME/CFS Discovery Research Network (MDRN), a group of Australian researchers collaborating on ME/CFS. The MDRN was set up in 2018.
"ATP production [in the blood of the sample of people with ME/CFS] was normal,
but once Fisher began stressing the energy production systems strange things began happening.
In particular, Fisher found that Complex V – the last of the five complexes and arguably the most important – responded poorly."
"The NIH reports that Complex V Deficiency can produce a wide variety of symptoms including extreme fatigue, low muscle tone (hypotonia), increased levels of lactic acid, rapid breathing, cognitive issues, etc."
"The end result was that the ME/CFS mitochondria were working harder than ever. They were able to get the cells’ ATP production up to normal – at rest – but this was not enough to handle stressful conditions."
He found "that the energy stressed ME/CFS patients’ cells had moved from breaking down glucose to breaking down the more ATP-rich fatty acids in order to squeeze out as much energy as possible."
"Fisher’s intuition [10 years ago] was correct. ME/CFS patients’ mitochondria are having problems producing energy."
Who: Stanford professor of biochemistry and genetics Ron Davis. And Dr Rahim Esfandyarpour.
Where: Stanford University, USA.
Method: The new test measures energy output from immune cells in the blood. The 'nanoelectronic assay' measures how much the energy outputs of these cells change when they are exposed to stress, in this case, modeled by salt. Those with ME/CFS had very reactive blood
Result: A chronic fatigue syndrome blood test from Stanford Uni gave 100% accuracy in a trial of 40 patients
Sample size: 40.
More information: https://www.dailymail.co.uk/health/article-6973391/A-chronic-fatigue-syndrome-blood-test-finally-prove-condition-exists-study-says.html
On May 21, 2019 the following CFS research was posted on the PNAS website which I believe is more on the same news.
ME/ Chronic Fatigue Syndrome News, April 2019
Who: Dr Helene Cabanas and the NCNED research teams
Where: Griffiths University in Australia
Method: "Whole-cell patch-clamp technique was used to measure TRPM3 activity in
isolated NK cells from twelve age- and sex-matched healthy controls and
CFS/ME patients, after activation with pregnenolone sulfate and
[the drug] nifedipine and inhibition with ononetin." Quote with grateful thanks to the Pubmed website - see link below.
Result: Diagnostic marker test developed for ME/CFS, along with a possible drug treatment.
Sample size: 12 or 24 (Katherine - not sure!)
The articles shares that "It’s All in Your Head" is true because there are problems with brain functioning in those with this chronic illness.
An interesting article outlining the work of Professor Leonard Jason who himself had or has the illness Chronic Fatigue Syndrome.Method:
Quantitative electroencephalography (qEEG) maps brain waves.
Low-resolution electromagnetic tomography (LORETA) software investigates the causes of brain dysregulation.
The technology is an upgrade on the MRI.
“A normally functioning brain depends on the neurons functioning within a certain time frame. For patients with ME, the neurons are either damaged or dead, which causes cognitive impairments because of the slowed speed and the first part of the processing hasn’t been resolved before they move on to the next,”
In addition, the research has shown how CFS/ME patients’ everyday waking brain is drowsy because of too many delta waves.
Marcie and Mark Zinn have studied the brains of more than 200 patients with ME/CFS
ME/ Chronic Fatigue Syndrome News, December 2018
When published: December 2018
Who: Center for Infection and Immunity (CII). Columbia University's Mailman School of Public Health. New York City, NY. Dr. Dorottya Nagy-Szakal, is one of the authors
What done: Examination of the blood samples of 50 people with ME/CFS. Comparison made with those of 50 age-matched healthy controls
Result: The discovery of 562 metabolites that the people with ME/CFS had in common.
ME/CFS quotes by the scientists behind the study:
"This is a strong predictive model that suggests we're getting close to the point where we'll have lab tests that will allow us to say with a high level of certainty who has this disorder,".
Dr W. Ian Lipkin:
"We're closing in on understanding how this disease works."
More information: https://www.nature.com/articles/s41598-018-28477-9
ME/ Chronic Fatigue Syndrome News, December 2018
Who? Scientists from the Institute of Psychiatry, Psychology and Neuroscience at King's Colleg, including Dr Alice Russell and Prof Carmine Pariante.
Sample size and type: 55 patients who had hepatitis C.
Intervention: The drug interferon-alpha.
Results: 18 patients developed CFS-like symptoms. In these patients there was a far stronger immune response to the medication. These patients corresponded with those who were measured to have had an overactive immune system prior to treatment .
Statement: "our results are the first step in identifying those at risk and catching the illness in its crucial early stages". Professor Carmine Pariante.
Funding by: Medical Research Council
Published where: the journal PsychoneuroendocrinologyLink to more information:
Interview with Doctor David M. Systrom, MD
Works at Brigham and Women's Hospital USA
Reported on youtube by ME/CFS Alert 98
The doctor is angry at his colleagues for mistreatment of ME/CFS patients.
Dr David Systrom's conversation includes a discussion about the connection between the autonomic nervous system (ANS), inflammation and auto immune dysfunction.
What was the research: A comparison of peripheral blood mononuclear cells.
When was the research published: End of October 2017.
Author of CFS research: Cara Thomas, Newcastle University Ph.D. student (Cara Thomas has lived with ME herself)
Sample size: 52 people with ME and 35 in the control group.
Findings: The cells from those participants living with ME are unable
to meet the energy demands of routine physical tasks. They become exhausted easily when put under
The suggestion is that chronic fatigue syndrome (CFS) is caused by the body swapping to inefficient methods of energy generation.
Research funded by: Action for ME, Medical Research Council, the ME Association, ME Research UK and the Newcastle Molecular Pathology Node.Where was this CFS News published:
The journal PLOS ONE
Cara Thomas is already planning a follow-up study in which she will test muscle cells in the same way as she has tested blood cells.
Where to read more: https://www.sciencealert.com/chronic-fatigue-syndrome-low-energy-production-in-cells-metabolic-disease
Stanford University, USA
Researchers include Jose Montoya, M.D., Mark Davis et al
The sample of people with chronic fatigue syndrome showed substantially higher levels of certain cytokines in their blood.
Changes in levels of these cytokines corresponded with the severity of symptoms of chronic fatigue syndrome.
Cytokines are substances from the immune system.
There is a possible link between excess inflammation and Chronic Fatigue Syndrome.
The findings of the research constitute “a solid basis for a diagnostic blood test.” Mark Davis
Where can I read more?
Published online in Proceedings of the National Academy of Sciences
ME/ Chronic Fatigue Syndrome News, June 2017
A UK only petition asking for an effective policy for the treatment of Myalgic Encephalomyelitis reached 10,992 signatures.
"The Government accepts the World Health Organisation’s classification of CFS/ME as a neurological condition of unknown origin."
"The guideline [The NICE guideline on CFS/ME] recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme."
Where can I read more?
Copy and paste this link for the full response:
ME/ Chronic Fatigue Syndrome News, April 2017
Just a quick note. There seems to be so much Chronic Fatigue Syndrome news at the moment for me that I can't keep up !
In ME/CFS subgroups, a correlation was shown between the intensity of symptoms including pain and fatigue the presence of distinct bacteria disturbances in the gut.
The trial was made up of 50 ME/CFS cases and 50 healthy controls in the USA.
Who: Dorottya Nagy-Szakal, Brent L. Williams, Nischay Mishra, Xiaoyu Che, Bohyun Lee, Lucinda Bateman, Nancy G. Klimas, Anthony L. Komaroff, Susan Levine, Jose G. Montoya, Daniel L. Peterson, Devi Ramanan, Komal Jain, Meredith L. Eddy, Mady Hornig and W. Ian Lipkin
Read more at:
ME/ Chronic Fatigue Syndrome News, April 2017
Who: Wilfred de Vega, a PhD student, and Associate Professor Patrick McGowan
Published where: The journal of BMC Medical Genomics
Findings: There are many variations in the genome in CFS patients as compared with the control group.These include sites relevant to metabolic processes where the epigenetics are different. (Epigenetics is the study of how genes switch themselves off and on.)
Implication: Researchers can start to develop ways of testing drugs
already in use or develop new therapies to address the differences in the Chronic Fatigue Syndrome population.
Read more at: https://medicalxpress.com/news/2017-04-chronic-fatigue-syndrome.html
ME/ Chronic Fatigue Syndrome News, March 2017
The following is from the website of the National Institutes of Health (NIH) in the USA.
"We recognize and empathize with the suffering experienced by people with ME/CFS and their frustration that so little is known and so little research has been done to find answers. We aim to change that.
The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition."
Click here for the full article.
ME/ Chronic Fatigue Syndrome News, February 2017
Dr Ron Davis works at Stanford university in the genome technology centre.
He has found that gene expression shows that people with CFS/ME are very ill.
Dr Ron's son has severe Myalgic Encephalomyelitis, so he feels great passion and urgency about the research work.
Read more about his work here.
(Another Doctor and researcher with a child with CFS/ME is Dr. Maureen Hanson of Cornell University (New York))
ME/ Chronic Fatigue Syndrome News, February 2017
When was the research published:
T. Nguyen, S. Johnston, L. Clarke, P. Smith, D Staines, S. Marshall‐Gradisnik
Griffith University's National Centre for Neuroimmunology and Emerging Diseases,
South East Queensland, Australia
40 (25 healthy, 15 with CFS/ME)
A faulty cell receptor appears to cause the immune system changes seen in
The cell receptor in question is called transient receptor potential melastatin 3 (TRPM3).
In healthy cells the cell receptor transfers calcium from outside the cell to the inside. Here it helps to regulate protein production and gene expression.
In people with CFS calcium isn't getting inside the cells as it should.
This cell receptor is found on every single cell in the body, which would explain the severity of CFS/ME.
It also explains why the illness CFS leads to different symptoms in different people. For example, this dysfunction of cell receptors affects the brain, the spinal cord, and the pancreas.
The research could lead to future CFS treatments and a long hoped for test for CFS.
Hypothesis, subject to further research:
The cause of faulty TRPM3 receptors could explain why many people experience
CFS/ME following a traumatic event or serious infection.
'Threat receptors' such as TRPM3 are upregulated when the body is under any kind of threat, such as infection, trauma, or even childbirth.
Katherine says: As usual, it is all too complicated for me! But how heartening that it provides a potential explanation for why the illness can follow both infection or trauma and why there are such different Chronic Fatigue Syndrome symptoms in different people.
Click through to this article on sciencealert.com to find out more.
Click here for another page of Chronic Fatigue Syndrome research projects and their findings.
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