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.
If you wish to add your own ME or Chronic Fatigue Syndrome news please feel free to share your wisdom and experience on the healing forum.
Below: This is me enjoying a change of scene on a local trip to Avebury, UK. I was well enough to go but not well enough to walk when I got there.
Click on a link when there is one, or please scroll down
Click through for a separate page of articles on research into CFS and exercise:
Click through for the following Chronic Fatigue Syndrome news prior to 2012 and for a list of CFS blogs by other people
Jonathan Edwards, a rheumatologist, and professor of connective tissue medicine at University College London found that patients with ME/CFS as well as rheumatoid arthritis reported a great reduction in CFS symptoms when they were treated with powerful anti-inflammatory drugs for their arthritis.
A trial of the drugs on the larger population of people with Chronic Fatigue Syndrome is under way as at August 2017.
Katherine: I am unsure of the dates of the original research or the expected date of completion of the current research. Please search further online if needed.
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.
ME/ Chronic Fatigue Syndrome News, December 2016
When was the research published:
Chris Armstrong, a researcher. Bio 21 research group director Associate Professor Paul Gooley. Clinician, Dr Donald Lewis. Dr Neil McGregor, former editor of the Journal of Chronic Fatigue Syndrome, and Dr Henry Butt, director of medical laboratory Bioscreen.
University of Melbourne’s Bio21 Molecular Science and Biotechnology Institute and the Department of Biochemistry and Molecular Biology, Australia
Research into metabolites and microbiota in faeces, blood and urine with ME/CFS. Urine, blood and faecal samples were taken (after overnight fasting) from 34 women diagnosed with ME and from 25 people in a control group without the illness.
Magnetic resonance spectrometry was used to investigate differences in the energy metabolism of people with ME/CFS.
The research suggests that the composition of the good gut bacteria versus bad gut bacteria in people with CFS/ME could be shifting the body away from obtaining energy from glucose to obtaining energy instead from fats and proteins.
Amino acid levels in patients with CFS/ME differ from those in the control group.
A similar process takes place in the body when it is starving. It may be a possible explanation for the lack of energy people have in ME/CFS.
Chris Armstrong is quoted as saying: “When people are facing starvation, the body uses amino acids and fatty acids to fuel energy for most cells in the body, to keep glucose levels vital for the brain and muscles as high as possible.”
More research is needed to confirm and extend these results.
Read the chronic fatigue syndrome research findings here.
Katherine (author of HealingCFSME.com) comments:
This research is of interest to me as I have been taking an amino acid supplement for Chronic Fatigue Syndrome for most of the last year. I have improved in that time - muscle use and energy production, and am now rarely aware of hypoglycemic symptoms, and am able to eat less often.
Other factors may of course be involved, but perhaps the amino acid supplement is working for me.
Who and Where:
Japan. Ryo Aoki et al.
Japanese research finds a test to differentiate between normal fatigue (someone recovers after rest) and pathological fatigue. The researchers measured salivary human herpesvirus HHV-6 and HHV-7. These responded differently in the different groups of test participants.
How can I find out more:
Click through here to read the ME Australian website.
ME/ Chronic Fatigue Syndrome News, August 2016
Robert Naviaux University of California, San Diego CFS, published 29 August 2016.
Blood samples were analysed from 45 people with Chronic Fatigue Syndrome and 39 healthy individuals of the same age.
A characteristic set of chemical changes were observed in the blood of those with Chronic Fatigue Syndrome which were absent in the healthy individuals.
Key chemicals in the body were often present in lower levels than normal.
Possible diagnostic marker:
The blood test designed by Dr R K Naviaux is over 90 per accurate in identifying people with CFS.
Possible cause of Chronic Fatigue Syndrome:
Robert Naviaux the scientist leading the research said something similar happens when animals dial down their metabolism to hibernate.
He surmised that in CFS, the body may get stuck in this state of hibernation and that pain and disability may result as a consequence.
Dr Naviaux said: ‘CFS is a very challenging disease. It affects multiple systems of the body. Symptoms vary and are common to many other diseases.’
He hopes his work will lead to new treatments, as well as providing patients with a quicker route to diagnosis.
ME/ Chronic Fatigue Syndrome News, October 24 2011, updated July 2015
Doctors treated someone for cancer and the CFS/ME disappeared. Let's hope this result gets replicated in studies.
I don't like the idea of chemotherapy, but I LOVE the idea of greater recognition for CFS/ME.
finding raises the possibility of identifying a diagnostic marker for
CFS/ME which would allow easier diagnosis that would be taken more
"Rituximab works by destroying a protein found on the surface of white blood cells that make antibodies, called B cells.
The scientists said the findings suggested that: 'CFS/ME, which is often preceded by an infection, may be a form of autoimmune disease in which B-cells are important'."
Theory for CFS cause: "An infection triggers the body to produce antibodies that then turn against a person's own tissues, perhaps stopping blood from circulating properly". (New Scientist Mag 4 July 2015) This prevents people getting sufficient oxygen and CFS symptoms result.
Who: Dr Oystein Fluge and Dr Olav Mella in 2004
What happened: They treated a patient for lymphoma who also had CFS. After a few months, the CFS symptoms had disappeared.
2011, one year trial, two-thirds of those taking rituximab had reduced CFS symptoms compared with none of the control group.
Follow up, reported July 2015
Trial of Rituximab involving 29 people with CFS. 11 of 18 people withChronic Fatigue Syndrome were in remission 3 years afterthe start of treatment. Typically, it took 4 to 6 months to see reduced symptoms.
Reference. PLoS One, DOI:10.1371/Journal.pone.012898
A new research study on 150 people with Chronic Fatigue Syndrome is already ongoing at July 2015.
What did they find?
The research showed specific patterns of immune molecules in patients who had CFS/ME for up to three years.
The CFS/ME patients who had had the disease for up to three years had higher levels of cytokines, particularly one called interferon gamma. Interferon gamma has been linked to the fatigue that follows many viral infections.
Healthy patients did not show the same pattern. Nor did those who had experienced the disease for longer than three years.
Possible conclusions and implications:
There are distinct stages to the disease CFS/ME.
In a BBC News article, Dr Charles Shepherd is quoted as saying that, if replicated, the results
"could be used to aid diagnosis and open the door to the use of anti-inflammatory drug treatments that would dampen down the abnormal immune system response".
Sample size? They tested blood samples from nearly 300 ME patients and 350 healthy volunteers.
Who: A US research team
Published where: The online journal of Science Advances. Main author, Dr Mady Hornig.
Other: Further experimentation is needed to confirm these results.
Comment by Katherine T Owen: I am not clear if there is an implication that the disease lessens after a three year period, corresponding with the drop in cytokines. I can say that sadly this is not my experience, or the experience of many other people I know living with CFS/ME.
From: the Institute of Medicine, a prestigious government advisory group in the U.S. (IOM)
Proposal: The illness CFS should be renamed Systemic Exertion Intolerance Disease, or SEID, to reflect that symptoms are worse after exertion.
Proposal: 3 core symptoms should be required to diagnose SEID along with 1 symptom out of cognitive impairment and orthostatic intolerance.
Click through to read more about these criteria and others for diagnosing CFS/ME.
Read the article or, if time has passed, visit IOM's website www.iom.edu where they plan to post a
guide for doctors.
ME/Chronic Fatigue Syndrome News October 2014
1) Method: MRI scan.
Result: Overall white-matter content of CFS patients’ brains was reduced compared
with that of healthy subjects’.
These are areas which process information and convey information from one part of the brain to another.
(Inflammation, is known to take a particular toll on white matter.)
2) Method: Advanced imaging technique – diffusion-tensor imaging.
Result: A consistent abnormality in a particular part of a nerve tract in the right hemisphere of CFS patients’ brains.
A fairly strong correlation with the abnormality revealed above and the level of illness of the patient.
3) A thickening of the gray matter at the two areas of the brain connected by the right arcuate fasciculus in the CFS patients, an observation which corresponds with the abnormality in the white matter joining them.
Note from webmaster Katherine T Owen: an MRI brain scan I had done back in 2002 showed "The frontal cerebral sulci appear a little prominent". I wonder if this is a connected result.
Who carried out the research:
Size of survey:
Michael Zeineh and colleagues
15 CFS patients
30 October 2014 in Radiology
The Stanford scientists are planning a larger study.
Additional statistic: CFS affects between 1 million and 4 million individuals in the United States.
Katherine adds: in the UK the estimate is 250,000 of which one quarter are housebound or bedbound.
ME/Chronic Fatigue Syndrome News October 2014
It has been found that chronic mycoplasma infection is present in 50% of CFS patients. Of those for whom this is true most recover after long-term antibiotic therapy.
Source of information:
Department of Rheumatology, The National Hospital, University of Oslo, Norway.
This isn't NEW CFS news as the post on http://niceguidelines.blogspot.co.uk is dated June 2011, but it is news to me.
A viral cause for CFS is most commonly suggested, but every now and again, someone suggests a bacterial cause instead.
I have certainly heard of someone who recovered significantly from Myalgic Encephalomyelitis on longterm antibiotics.
For myself, I was put on antibiotics this year for several weeks and my ME/CFS symptoms were worse as a result.
As always, it is early days my friends in terms of finding a cause and treatment for CFS.
ME/Chronic Fatigue Syndrome News May 2014
This was a small study.
Nonetheless PET scans showed significant increases in inflammation in certain regions of the brains of CFS patients who satisfied the criteria for Myalgic Encephalomyelitis.
Who? - Yasuyoshi Watanabe, director of the RIKEN Center for Life Science Technologies.
Where to read more? http://www.scientificamerican.com/article/baffling-chronic-fatigue-syndrome-set-for-diagnostic-overhaul/
Action for M.E. gave its members and supporters a choice of 5 possible research projects to explore the biology of ME/CFS.
On 12 May 2014 - ME Awareness day - it announced the results.
The first ME research project investigates whether people with M.E./CFS have patterns of mitochondrial DNA
variation different from those of healthy people.
This 18-month study costs £30,000.
The ME Association are giving a £5,000 donation.
second study looks at the role of immune responses in people with M.E./CFS.
The research project costs £19,500.
It is co-funded by the ME Association.
My thanks to the UK ME organisations for pushing forward with research which may lead to the discovery of the cause of CFS /ME or to finding a diagnostic marker or to finding a treatment for CFS. The sooner the better!
ME Illness/ Chronic Fatigue Syndrome News 2013
This study dealt with healthy subjects and not those living with chronic illness. Nevertheless, I am keen to include it here in Chronic Fatigue Syndrome news.
A study of 26 healthy adults undertook an 8-week training course in learning to activate the relaxation-response which is the opposite of the stress response.
Blood samples taken before and after the course were analyzed.
Pathways involved with energy metabolism, including mitochondrial function, were upregulated.
Low mitochondrial function is often implicated in those with Chronic Fatigue Syndrome.
Pathways were suppressed that are known to contribute to stress, trauma and cancer.
The Benson-Henry Institute for Mind/Body Medicine at Massachusetts General Hospital and Beth Israel Deaconess Medical Center
Read more on the Harvard website.
This study encourages me to take my relaxation sessions more seriously and carry them out with more consistency. Isn't it amazing that the research shows so clearly that we can change our genes - effectively turning them up or down?
ME Illness/ Chronic Fatigue Syndrome News 3 March 2013
Low-dose naltrexone may offer help for the millions of people worldwide with central nervous system disorders or autoimmune disorder.
"in people with diseases that are partially or largely triggered by a deficiency of endorphins (including auto immune disorders) ... restoration of the body's normal production of endorphins is the major therapeutic action of LDN."
See the complete article on
Here you can download an article to take to your Doctor to ask them to consider prescribing you with LDN to treat CFS.
A friend was prescribed LDN for cancer and her M.E. / CFS symptoms cleared significantly as a result.
ME / Chronic Fatigue Syndrome News at 25 Jan 2013
Guess what! I have a doctor who takes CFS seriously. (I prefer and use the name ME [Myalgic Encephelomyelitis], but he says that doctors take the term CFS more seriously. Ho hum.)
I have had more muscle fatigue and pain in my arms and hands this last year, and asked for help for pain relief.
He referred to research and said that Amitriptaline has been found to give pain relief in those with the illnesses MS, Parkinsons and CFS.
I was wary of taking a drug as I still have some Mulitple Chemical Sensitivity (MCS) and he was very easy going, said I could stop whenever I wanted to.
Amitriptaline is an anti-depressant. For my body weight if I was taking it as an anti-depressant I would take 150g. For pain relief it is prescribed at 10mg, so a much lower dose.
It knocked me out and for the first time I understood the idea of someone WANTING to be in bed and rest. I thought this might be good for me, but I didn't feel like my usual LIVE self. I cut the dose in half to 5mg and persevered for a while.
There was some pain relief, but it was inconclusive as I was so tired that I typed less. The ME/CFS pain comes with repetitive movement, so the pain relief could have been down to less use of my arms and hands.
However, I did SLEEP unusually well which I feel sure must have done me some good.
I stopped after a while as I prefer to be more alert and alive. But interestingly, I often sleep longer and better now. It seems the amitriptaline has reminded my body how to sleep.
My conclusion is
that amitriptaline is worth a go for pain relief, but PLEASE please make
your own decision. I have a friend who deeply regrets the years he
spent trying different drugs for ME with horrible side-effects. I can
well imagine how unpleasant it would have been if I had been given the
dose for depression.
Always remember, it is YOUR body and YOUR decision.
With Love, Katherine
Click here for another page of Chronic Fatigue Syndrome research projects and their findings.
Move to the home page: Healing Chronic Fatigue Syndrome.