Christmas greetings to all from WAMES
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Hanson & co defend mtDNA research findings
Article abstract:
Earlier this year, we described an analysis of mitochondrial DNA (mtDNA) variants in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) patients and healthy controls.
We reported that there was no significant association of haplogroups or singe nucleotide polymorphisms (SNPs) with disease status. Nevertheless, a commentary about our paper appeared (Finsterer and Zarrouk-Mahjoub. J Transl Med14:182, 2016) that criticized the association of mtDNA haplogroups with ME/CFS, a conclusion that was absent from our paper.
The aforementioned commentary also demanded experiments that were outside of the scope of our study, ones that we had suggested as follow-up studies. Because they failed to consult a published and cited report describing the cohorts we studied, the authors also cast aspersions on the method of selection of cases for inclusion.
We reiterate that we observed statistically significant association of mtDNA variants with particular symptoms and their severity, though we observed no association with disease status.
Association of mitochondrial DNA variants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms, by Maureen R. Hanson, Zhenglong Gu, Alon Keinan, Kaixiong Ye, Arnaud Germain and Paul Billing-Ross in Journal of Translational Medicine 201614:342 [Published: 20 December 2016]
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Identifying key symptoms differentiating ME & CFS from MS
Research abstract:
It is unclear what key symptoms differentiate Myalgic Encephalomyelitis (ME) and Chronic Fatigue syndrome (CFS) from Multiple Sclerosis (MS).
The current study compared self-report symptom data of patients with ME or CFS with those with MS. The self-report data is from the DePaul Symptom Questionnaire, and participants were recruited to take the questionnaire online.
Data were analyzed using a machine learning technique called decision trees.
Five symptoms best differentiated the groups. The best discriminating symptoms were from the immune domain (i.e., flu-like symptoms and tender lymph nodes), and the trees correctly categorized MS from ME or CFS 81.2% of the time, with those with ME or CFS having more severe symptoms.
Our findings support the use of machine learning to further explore the unique nature of these different chronic diseases.
Identifying Key Symptoms Differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis, by Diana Ohanian, Abigail Brown, Madison Sunnquist, Jacob Furst, Laura Nicholson, Lauren Klebek and Leonard A Jason in EC Neurology 4.1 (2016): 41-45. [Published: December 19, 2016]
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Tagged Abigail A Brown, decision trees, Diana Ohanian, machine learning, Madison L Sunnquist, MS, Multiple Sclerosis, Prof Leonard Jason
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MEA to fund new research into biomarkers and markers of disease activity in people with severe ME/CFS
ME Association announcement, 20 December 2016: MEA to fund new research into biomarkers and markers of disease activity in people with severe ME/CFS
We are pleased to announce that – following the normal rigorous peer review procedures – the MEA Ramsay Research Fund has agreed to fund a study that will be examining what are termed microRNA profiles in peripheral blood mononuclear cells (PBMCs) and exosome-enriched vesicles.
The study will involve the use of ME Biobank blood samples that have been obtained from people with severe ME/CFS and from our Biobank group of healthy controls.
The research will be carried out by Professor Elisa Oltra and colleagues in Spain and we are hoping that there will also be additional UK collaboration to the involvement of the ME Biobank in supplying the samples.
The study will start early in the New Year and will take 12 months to complete.
Total RRF funding = approx £50,000
Find a brief CV for Professor Oltra HERE.
Read more about the project
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Tagged ME Association, microRNAs, PBMC, peripheral blood mononuclear cells, Prof Elisa Oltra, Ramsay Research Fund, severe ME, UK ME/CFS Biobank
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Vagus Nerve Stimulation in FM & ME/CFS: a trial of one
Health rising forum post, by Cort Johnson, 8 Dec 2016: Vagus Nerve Stimulation in Fibromyalgia and ME/CFS: A Trial of One
An Emerging Treatment
My interest in vagus nerve stimulation was prompted by a number of factors. Fibromyalgia (FM) and/or chronic fatigue syndrome (ME/CFS) studies indicate that reduced heart rate variability – a sign of vagus nerve withdrawal – was not just present in these diseases, but was associated with poor sleep and reduced cognition in them. Other studies indicate that sympathetic nervous system activation – a sign of vagal withdrawal – is common in all the diseases associated with ME/CFS and FM; e.g. irritable bowel syndrome, interstitial cystitis, migraine, and Gulf War Illness. The fact that low heart rate variability is associated with a higher risk of death even in healthy individuals was a bit of an eye-opener as well.
There was my firm conviction that the “arousal” that has been with me from day one must has its roots in sympathetic nervous system activity. It was a small fibromyalgia study, though, that really piqued my interest. That study – which involved surgically implanting a vagus nerve stimulator in the neck – caused the usually pretty buttoned-down Dr. Ben Natelson to state “The results blew me away. I have never seen an effect as powerful as this.”
In a year Jean Hasse went from being bedbound and on high doses of opioid painkillers (clearly not working!) to getting her Master’s degree and regularly exercising. Many of the FM patients in the small study no longer met the criteria for FM at the end of it. The study was far too small to be definitive but these were extraordinary results. Another remarkable story concerned a woman crippled by a severe case of rheumatoid arthritis who was able to resume her normal activities.
Natelson is currently involved in a Gulf War Illness study using a non-invasive ear-attached vagus nerve stimulator (VNS) that he believes may be every bit as powerful as the surgically implanted one.
Living with ME/CFS holiday survival guide
Bateman Horne Center article, by Leigh Reynolds, 13 Dec 2016: Holiday Survival Guide
Living with ME/CFS and FM changes most everything, including how we celebrate the holidays. Perhaps one of the greatest gifts you can give yourself, or a loved one, is a ‘free pass’ on the guilt you may be tempted take on when you are unable to do it all. We all want a happy and peaceful holiday season; celebrating within the boundaries of your illness can help make that a reality. Sometimes simply discussing your needs and expectations with family and friends can make a big difference.
The article goes on to discuss:
- Focus on the meaning of the holiday
- Challenge traditions, create new ones
- Give yourself the gift of self-care
- Allow yourself to receive
- Set boundaries
- Coping with unresolved family/friend problems
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Dr VanElzakker’s ME research using PET, MRI and Tesla-7 scans
MEAction blog post, by Jaime S, 12Dec 2016: Dr VanElzakker: two new ME/CFS studies at Harvard
#MEAction recently interviewed Dr. Michael VanElzakker regarding two, new studies on ME/CFS.
The first aims to discover evidence of increased activity where the sensory vagus nerve enters the brainstem – a subtle effect that requires some intricate scans.
In order to measure the activity in the vagus nerve, Dr. VanElzakker will use a scanner that is capable of concurrently performing two different types of scans: PET and MRI. A PET scan allows researchers to pick up very subtle differences in biological function, while an MRI captures more detailed anatomy.
The study is well underway: Dr. VanElzakker has scanned six patients and two controls so far. It’s a small study, VanElzakker revealed, with the hope of using the results to apply for a grant down the line. Right now, the pilot study is funded solely through Massachusetts General Hospital / Harvard Medical School’s Martinos Center for Biomedical Imaging.
The second study, still in the grant-application stage, will be a post-exercise test, using MRI to pick up the activity of different metabolites in patients’ brains. VanElzakker plans to use a 7-Tesla scanner – a very high strength scanner – in order to produce especially high-quality images; he also hopes to perform autonomic testing.
Dr. VanElzakker is basing his study design off of previous exercise challenge studies. He hopes to replicate their findings, as well as uncover new evidence about autonomic dysfunction and post-exertional metabolic changes in the brains of ME patients.
Dr. VanElzakker’s position about ME’s biomedical nature is unequivocal.
“People at teaching hospitals are following the research,” he said. “Everyone here recognizes that it’s a neuroimmune condition and approaches it that way.”
“When a condition is ‘medically unexplained,’ some seem to assume that means that it must be psychogenic. We would say that if medicine cannot yet explain something, perhaps the fault lies with medicine,” he added. “There are plenty of things [in biology] we aren’t able to image, yet. We aren’t able to measure this thing with rudimentary scans and blood tests.” VanElzakker laughs. “We don’t have a test yet, therefore it’s psychogenic? That reveals a tragic lack of humility about what we know and what we don’t know.”
An Interview with Michael VanElzakker Ph.d, 14 Feb 2014
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Tagged Dr Michael VanElzakker, Harvard Medical School, Jaime S, MEAction, MRI, PET scan, sensory vagus nerve, Tesla-7 scan
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Heart rate variability biofeedback therapy (HRV-BT) & GET in management of CFS
Research highlights:
- Heart rate biofeedback and graded exercise training improve fatigue as core symptom of CFS.
- Heart rate biofeedback improves quality of life and depression in patients with CFS.
- Graded exercise training reduces physical fatigue and betters physical functioning in patients with CFS.
Research abstract:
OBJECTIVE
Chronic fatigue syndrome (CFS) is characterised by persistent fatigue, exhaustion, and several physical complaints. Research has shown cognitive behavioural therapy (CBT) and graded exercise training (GET) to be the most effective treatments. In a first step we aimed to assess the efficacy of heart rate variability biofeedback therapy (HRV-BF) as a treatment method comprising cognitive and behavioural strategies and GET in the pilot trial. In a second step we aimed to compare both interventions with regard to specific parameters.
METHODS
The study was conducted in an outpatient treatment setting. A total of 28 women with CFS (50.3 ± 9.3 years) were randomly assigned to receive either eight sessions of HRV-BF or GET. The primary outcome was fatigue severity. Secondary outcomes were mental and physical quality of life and depression. Data were collected before and after the intervention as well as at a 5-month follow-up.
RESULTS
General fatigue improved significantly after both HRV-BF and GET. Specific cognitive components of fatigue, mental quality of life, and depression improved significantly after HRV-BF only. Physical quality of life improved significantly after GET. There were significant differences between groups regarding mental quality of life and depression favouring HRV-BF.
CONCLUSION
Both interventions reduce fatigue. HRV-BF seems to have additional effects on components of mental health, including depression, whereas GET seems to emphasise components of physical health. These data offer implications for further research on combining HRV-BF and GET in patients with CFS.
Heart rate variability biofeedback therapy and graded exercise training in management of chronic fatigue syndrome: An exploratory pilot study, by Petra Windthorst, Nazar Mazurak1, Marvin Kuske, Arno Hipp, Katrin E. Giele, Paul Enck, Andreas Nieß, Stephan Zipfel, Martin Teufel in the Journal of Psychosomatic Research, February 2017, Vol 93, Pages 6–13 [published online December 2016]
TRIAL REGISTRATION
The described trial has been registered at the International Clinical Trials Registry Platform following the number DRKS00005445.
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