Fatigue & psychosocial variables in autoimmune rheumatic disease & CFS

Posted on 01/06/2017 by wames

Research abstract:

Objective:  Fatigue is common in autoimmune rheumatic diseases (ARD). This study  compared symptom-related cognitions, beliefs, behaviours, quality of sleep, lack of acceptance and distress in participants with ARD such as rheumatoid arthritis (RA), seronegative spondyloarthropathy (SpA), and connective tissue disease (CTD), and participants with chronic fatigue syndrome (CFS).

Methods:  303 participants with RA, SpA, CTD and CFS completed questionnaire  measures of fatigue, social adjustment, cognitive-behavioural responses, lack of acceptance, distress and quality of sleep. The RA, SpA and CTD groups were first compared with each other. They were then combined into one group and compared with the CFS group.

Results:  There were no statistically significant differences between the RA, SpA
or CTD groups for any of the measures. The CFS group was more fatigued, reported more distress and sleep disturbance and had worse social adjustment than the ARD group after adjustment for age and illness duration. After adjustment for fatigue, age, and illness duration, the CFS group scored more highly on lack of acceptance and avoidance/resting
behaviour while the ARD group showed significantly higher levels of catastrophizing, damage beliefs, and symptom focusing than the CFS group.

Conclusion:  Fatigue in rheumatic diseases may be perpetuated by similar underlying transdiagnostic processes. The ARD and CFS groups showed similarities but also key differences in their responses to symptoms. Specific aspects of treatment may need to be tailored towards each group. For example, lack of acceptance and avoidance behaviour may be particularly important in perpetuating fatigue in CFS.

Fatigue and psychosocial variables in autoimmune rheumatic disease and chronic fatigue syndrome: a cross-sectional comparison, by Sheila Ali, Faith Matcham, Katherine Irving, Trudie  Chalder in Journal of Psychosomatic Research, vol 92, Jan 2017 [Available online 14 November 2016]

NB Prof Chalder’s assumption of the existence of avoidance behaviour in CFS was presented in an analysis of the debunked PACE trial results: Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial

Posted in News | Tagged , , , , | Comments Off on Fatigue & psychosocial variables in autoimmune rheumatic disease & CFS

Efficacy of 4-steps physical activity self-regulation programme for chronic fatigue

Posted on 01/05/2017 by wames

Research highlights:

  • 4-STEPS yielded sustained small to moderate sustained effects on self-reported fatigue severity, impact, and health-related quality of life.
  • There were modest effects on physical activity. There were no significant effects on psychological and somatic distress.
  • Benefits on fatigue severity at 12 months were partially explained by physical activity goal progress.

Research abstract:

Objective: Examine the medium-term effects of a brief physical activity (PA) self-regulation (SR) based intervention (4-STEPS program) for chronic fatigue, and explore the mediating effects of PA related variables and SR skills.

Methods: A two-arm randomized controlled trial (Usual Care vs 4-STEPS) was carried out. The 4-STEPS program consisted of Motivational Interviewing and SR-skills training. Fatigue severity (primary outcome) and impact, PA, health-related quality of life (HrQoL), and somatic and psychological distress were assessed at baseline, post-treatment (12 weeks) and 12 months follow-up.

Results: Ninety-one patients (45 intervention and 46 controls) were included. At follow-up, there were significant treatment effects on fatigue severity (g = 0.72) and fatigue impact, leisure-time PA, and physical and psychological HrQoL. No significant effects were found for number of daily steps and somatic and psychological distress.

Fatigue severity at follow-up was partially mediated by post-treatment progress on a personal PA goal (effect ratio = 18%).

Conclusion: Results suggest that a brief intervention, focusing on the formulation and pursuit of personal PA goals and the use of SR skills, produces sustained benefits for fatigue severity. Despite these promising results, dropout was high and the intervention was not beneficial for all secondary outcomes.

Efficacy of a randomized controlled brief physical activity self-regulation intervention for chronic fatigue: Mediation effects of physical activity progress and self-regulation skills, by MM. Marques, V De Gucht, I. Leal, S. Maes in Journal of Psychosomatic research, [Published online: December 26, 2016]

 

Posted in News | Tagged , , , , , , | Comments Off on Efficacy of 4-steps physical activity self-regulation programme for chronic fatigue

Metabolic profiling reveals disturbances in fatty acid & lipid metabolism in ME/CFS

Posted on 01/05/2017 by wames

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) remains a continuum spectrum disease without biomarkers or simple objective tests, and therefore relies on a diagnosis from a set of symptoms to link the assortment of brain and body disorders to ME/CFS. Although recent studies show various affected pathways, the underlying basis of ME/CFS has yet to be established.

In this pilot study, we compare plasma metabolic signatures in a discovery cohort, 17 patients and 15 matched controls, and explore potential metabolic perturbations as the aftermath of the complex interactions between genes, transcripts and proteins.

This approach to examine the complex array of symptoms and underlying foundation of ME/CFS revealed 74 differentially accumulating metabolites, out of 361 (P<0.05), and 35 significantly altered after statistical correction (Q<0.15). The latter list includes several essential energy-related compounds which could theoretically be linked to the general lack of energy observed in ME/CFS patients.

Pathway analysis points to a few pathways with high impact and therefore potential disturbances in patients, mainly taurine metabolism and glycerophospholipid metabolism, combined with primary bile acid metabolism, as well as glyoxylate and dicarboxylate metabolism and a few other pathways, all involved broadly in fatty acid metabolism.

Purines, including ADP and ATP, pyrimidines and several amino acid metabolic pathways were found to be significantly disturbed. Finally, glucose and oxaloacetate were two main metabolites affected that have a major effect on sugar and energy levels. Our work provides a prospective path for diagnosis and understanding of underlying mechanisms of ME/CFS.

Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism by Arnaud Germain, David Ruppert, Susan M Levine and Maureen R Hanson in Mol. BioSyst. [First published online 23 Dec 2016]

Posted in News | Tagged , , , , , , , | Comments Off on Metabolic profiling reveals disturbances in fatty acid & lipid metabolism in ME/CFS

Poor sleep quality, greater circulating pro-inflammatory cytokines & severity & frequency of CFS/ME

Posted on 01/04/2017 by wames

Research highlights:

  • Sleep quality, inflammation, and CFS/ME symptoms were analyzed.
  • Poor sleep quality predicted pro-inflammatory cytokines IL-1β, IL-6, and TNF-α.
  • Worse sleep quality related to greater fatigue severity and daily interference.
  • Worse sleep quality related to more severe and frequent CFS/ME symptoms.
  • Further research is needed to identify the etiology of sleep disruptions in CFS/ME.

Research abstract:
Objective
Poor sleep quality has been linked to inflammatory processes and worse disease outcomes in the context of many chronic illnesses, but less is known in conditions such as chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). This study examines the relationships between sleep quality, pro-inflammatory cytokines, and CFS/ME symptoms.

Methods
Sixty women diagnosed with CFS/ME were assessed using the Pittsburgh Sleep Quality Index (PSQI), Fatigue Symptom Inventory (FSI) and Center for Disease Control and Prevention (CDC)-based CFS/ME symptom questionnaires. Circulating plasma pro-inflammatory cytokine levels were measured by ELISA. Multiple regression analyses examined associations between sleep, cytokines and symptoms, controlling for age, education, and body mass index.

Results
Poor sleep quality (PSQI global score) was associated with greater pro-inflammatory cytokine levels: interleukin-1β (IL-1β) (β = 0.258, p = 0.043), IL-6 (β = 0.281, p = 0.033), and tumor necrosis factor-alpha (TNF-α) (β = 0.263, p = 0.044). Worse sleep quality related to greater fatigue severity (β = 0.395, p = 0.003) and fatigue-related interference with daily activities (β = 0.464, p < 0.001), and more severe and frequent CDC-defined core CFS/ME symptoms (β = 0.499, p < 0.001, and β = 0.556, p < 0.001, respectively).

Conclusions
Results underscore the importance of managing sleep-related difficulties in this patient population. Further research is needed to identify the etiology of sleep disruptions in CFS/ME and mechanistic factors linking sleep quality to symptom severity and inflammatory processes.

Poor sleep quality is associated with greater circulating pro-inflammatory cytokines and severity and frequency of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) symptoms in women by Sara F. Milrad, Daniel L. Hall, Devika R. Jutagir, Emily G. Lattie, Gail H. Ironson, William Wohlgemuth, Maria Vera Nunez, Lina Garcia, Sara J. Czaja, Dolores M. Perdomo, Mary Ann Fletcher, Nancy Klimas, Michael H. Antoni in Journal of Neuroimmunology, 13 December 2016.

Posted in News | Tagged , , , , , , | Comments Off on Poor sleep quality, greater circulating pro-inflammatory cytokines & severity & frequency of CFS/ME

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

Posted in News | Tagged , , | Comments Off on The potential role of the Advanced Nurse Practitioner in CFS

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

Posted in News | Tagged , , , , | Comments Off on UK ME/CFS Biobank update – 30,000 samples banked

Christmas greetings to all from WAMES

Posted on 12/23/2016 by wames

xmas-2016

Posted in News | Comments Off on Christmas greetings to all from WAMES

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

Posted in News | Tagged , , , , , , | Comments Off on Metabolic profiling indicates impaired pyruvate dehydrogenase function in ME/CFS

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]

Posted in News | Tagged , , | Comments Off on Hanson & co defend mtDNA research findings

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]

Posted in News | Tagged , , , , , , , | Comments Off on Identifying key symptoms differentiating ME & CFS from MS