The potential role of the Advanced Nurse Practitioner in CFS

Posted on 01/04/2017 by wames

Research abstract:

Aims:
To explore the experiences and expectations of patients with Chronic Fatigue Syndrome and general practitioners in order to develop the potential role of an Advanced Nurse Practitioner at the diagnostic care path of abnormal fatigue developed for regional transmural implementation in the Belgian provinces of East and West Flanders.

Background:
Patients with Chronic Fatigue Syndrome experience an incapacitating chronic fatigue that is present for at least six months. Since many uncertainties exist about the causes and progression of the disease, patients have to cope with disbelief and scepticism. Access to health care may be hampered, which could lead to inappropriate treatments and guidance.

Methods:
Individual semi-structured interviews were conducted with patients with Chronic Fatigue Syndrome and general practitioners in Belgium. Data were collected over 9 months in 2014-2015. All interviews were audio recorded and transcribed for qualitative analysis using open explorative thematic coding.

Results:
Fifteen patients and fifteen general practitioners were interviewed. Three themes were identified: mixed feelings with the diagnosis, lack of one central intermediator and insufficient coordination. Participants stressed the need for education, knowledge and an intermediator to provide relevant information at the right time and to build up a trust relationship.

Conclusion:
This qualitative exploration underscores some clear deficiencies in the guidance of patients suffering from Chronic Fatigue Syndrome and abnormal fatigue. An Advanced Nurse Practitioner as a central intermediator in the transmural care of these patients could promote interdisciplinary/multidisciplinary collaboration and effective communication, provide education and ensure a structured and coordinated approach.

Exploring the potential role of the Advanced Nurse Practitioner within a care path for patients with Chronic Fatigue Syndrome, by Hannah Ryckeghem, Liesbeth Delesie, Els Tobback, Stefaan Lievens, Dirk Vogelaers, An Mariman in Journal of Advanced Nursing, 21 December 2016

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UK ME/CFS Biobank update – 30,000 samples banked

Posted on 01/03/2017 by wames

CureME newsletter December 2016:

UK ME/CFS Biobank are delighted to announce that we have reached our participant recruitment goals and have now banked close to 30,000 aliquots (blood samples) in the Biobank.

Our samples represent people with mild/moderate ME/CFS, severe ME/CFS, multiple sclerosis and non ME/CFS chronic fatigue as well as healthy participants – providing a unique cohort in the field of ME/CFS research. As you may already know our research and recruitment to the biobank has involved a longitudinal study so we have also collected samples from many participants at two points in time (baseline and another point 6-12 months later).

Some of the Biobank samples have already been accessed and are being used by teams of researchers here at the LSHTM (London School of Hygiene & Tropical Medicine) as part of the work planned for the original NIH grant. We were excited to hear that Professor Eleanor Riley has been awarded $132,224 to further her team’s work exploring the associations between human herpes virus infection and ME/CFS.

On International ME Awareness Day (13th May 2016), the opening of the UK ME/CFS Biobank to researchers both nationally and internationally was announced with a launch held at LSHTM. We were humbled by the number of researchers, participants, stakeholders and participant advocates who made the effort to attend this landmark event, and we would like to thank those who were unable to attend but cheered us on from afar.

Since opening we have had significant interest in the Biobank from researchers across Europe and the United States with a number of applications expected in the New Year. As you can imagine, the research application process is a long-winded affair as ethical approval and funds need to be secured; thankfully we have built strong relationships with those interested in our samples and are offering our support in this process. This is an exciting time for biomedical research in ME/CFS and we are pleased to be able to offer premium quality samples to enable cost-effective research in an area where funds have been limited.

We know how precious and valuable each of these tiny tubes is, and the process for their distribution ensures that research proposals are robust and ethical and will help better understanding of the mechanisms of and possible treatments for ME/CFS. We wish to reassure our participants that any intention to use our samples by any research group will have to comply with the Biobank’s mission. We will prioritise research proposals that intend to test or generate new hypotheses on the pathophysiology of ME/CFS, improve diagnosis (biomarkers) and phenotyping, and/or basic science. Stringent application and review procedures will continue to be monitored by our Steering Committee.

Spring meetings planned

In the spirit of continuing to work alongside our participants to seek the best way of doing things, we hope to meet with some project participants with ME/CFS to discuss the results and how these can be most effectively disseminated. We hope to hold participatory meetings in London and Norwich, and news of such will be available on the Biobank website and social media outlets soon.

Stay Connected with CureME

During 2016 we launched our new website (cureme.lshtm.ac.uk) and social media accounts on Twitter and Facebook (@mecfsbiobank). If you are interested in finding out more about our research and the Biobank, please follow us or have a look at our webpage (where you can also sign up to our newsletter distribution list if you aren’t already on there).

Read more from the newsletter

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Christmas greetings to all from WAMES

Posted on 12/23/2016 by wames

xmas-2016

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Metabolic profiling indicates impaired pyruvate dehydrogenase function in ME/CFS

Posted on 12/23/2016 by wames

Research abstract:

Myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) is a debilitating disease of unknown etiology, with hallmark symptoms including postexertional malaise and poor recovery.

Metabolic dysfunction is a plausible contributing factor. We hypothesized that changes in serum amino acids may disclose specific defects in energy metabolism in ME/CFS.

Analysis in 200 ME/CFS patients and 102 healthy individuals showed a specific reduction of amino acids that fuel oxidative metabolism via the TCA cycle, mainly in female ME/CFS patients. Serum 3-methylhistidine, a marker of endogenous protein catabolism, was significantly increased in male patients.

The amino acid pattern suggested functional impairment of pyruvate dehydrogenase (PDH), supported by increased mRNA expression of the inhibitory PDH kinases 1, 2, and 4; sirtuin 4; and PPARδ in peripheral blood mononuclear cells from both sexes.

Myoblasts grown in presence of serum from patients with severe ME/CFS showed metabolic adaptations, including increased mitochondrial respiration and excessive lactate secretion. The amino acid changes could not be explained by symptom severity, disease duration, age, BMI, or physical activity level among patients. These findings are in agreement with the clinical disease presentation of ME/CFS, with inadequate ATP generation by oxidative phosphorylation and excessive lactate generation upon exertion.

Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome,by Øystein Fluge, Olav Mella, Ove Bruland, Kristin Risa, Sissel E. Dyrstad, Kine Alme, Ingrid G. Rekeland, Dipak Sapkota, Gro V. Røsland, Alexander Fosså, Irini Ktoridou-Valen, Sigrid Lunde, Kari Sørland, Katarina Lien, Ingrid Herder, Hanne Thürmer, Merete E. Gotaas, Katarzyna A. Baranowska, Louis M.L.J. Bohnen, Christoph Schäfer, Adrian McCann, Kristian Sommerfelt, Lars Helgeland, Per M. Ueland, Olav Dahl, and Karl J. Tronstad in JCI Insight. 2016;1(21) [Published December 22, 2016]

Kavlifondet blog post, 22 Dec 2016: New study on pathological mechanisms in ME from Bergen research group

A new study, partly funded by the Kavli Trust, suggests that the PDH enzyme is inhibited in ME/CFS patients, which may explain both energy shortage and increased lactate production in these patients. These findings have now been published in the Journal of Clinical Investigation Insight.  By Øystein Fluge, Karl Johan Tronstad and Olav Mella

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Hanson & co defend mtDNA research findings

Posted on 12/22/2016 by wames

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

Posted on 12/22/2016 by wames

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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MEA to fund new research into biomarkers and markers of disease activity in people with severe ME/CFS

Posted on 12/21/2016 by wames

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.

elisa_oltraThe 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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Vagus Nerve Stimulation in FM & ME/CFS: a trial of one

Posted on 12/21/2016 by wames

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.

Read more about vagus nerve stimulation 

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Living with ME/CFS holiday survival guide

Posted on 12/20/2016 by wames

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

Read the full article

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Dr VanElzakker’s ME research using PET, MRI and Tesla-7 scans

Posted on 12/20/2016 by wames

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.

michael-vanelzakkerThe 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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