Solving the ME/CFS criteria & name conundrum: the aftermath of IOM

Solving the ME/CFS criteria and name conundrum: The aftermath of IOM, by Leonard A Jason, Madeline Johnson in Fatigue: Biomedicine, Health & Behavior, 28 Apr 2020

 

Article abstract:

In 2015, the Institute of Medicine (IOM) proposed a new name and set of clinical criteria for what had previously been referred to as Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). This committee recommended the adoption of the term systemic exertion intolerance disease (SEID) and clinical criteria that required specific symptoms such as post-exertional malaise and unrefreshing sleep.

This article reviews efforts to evaluate the revised criteria as well as reactions to the new criteria and name. Since these recommendations have been made, the proposed name change has not been widely adopted by the scientific or patient community.

Even though the IOM’s proposed criteria were intended to be a clinical rather than a research case definition, over the past few years, an increasing number of studies have employed these criteria for research purposes. One unwitting consequence of the IOM criteria, which excludes few other illnesses, is the broadening of the number of individuals who are diagnosed and included in research studies.

There is still a need to implement the IOM’s recommendation to form a multidisciplinary committee to review research and policy changes following the release of the new criteria.

We conclude by presenting a possible roadmap for overcoming barriers in order to make progress on developing a consensus for a name and criteria.

Read full paper

 

Posted in News | Tagged , , , , , , , | Comments Off on Solving the ME/CFS criteria & name conundrum: the aftermath of IOM

Patient experiences & the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study

Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study, by  Suzanne Broadbent, Sonja Coetzee Rosalind Beavers &  Louise Horstmanshof in Fatigue: Biomedicine, Health & Behavior, [DOI: 10.1080/21641846.2020.1751455]  Published online: 11 Apr 2020

 

Research abstract:

Background:

The aim of the study was to explore the experiences of participants in a short aquatic exercise programme for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to gain insight into the perceived psychosocial benefits.

Methods:

The exercise programme was of five-weeks duration, with two self-paced aquatic sessions per week. Eleven female participants (mean age 54.8 ± 12.4 yr) reported the onset and changes (24–48 h) in post-exercise fatigue, pain and other symptoms after each session, and completed a post-intervention interview comprising nine open-ended questions, with additional discussions. The reported symptoms and interview responses were entered into a spreadsheet, grouped and coded to identify the themes and subthemes.

Results:

The main themes were ‘symptoms’, ‘benefits’, ‘engagement and compliance’, and ‘limitations’. The analysis found that group aquatic exercises reduced social isolation through shared experiences and enhanced support; were beneficial and enjoyable without exacerbating symptoms; were preferable to other modes of exercise; and were seen as a long-term exercise option. Participants reported a reduction in pain, fatigue and anxiety after the intervention.

Conclusions:

Psychosocial benefits suggest that self-paced group aquatic exercise is a safe, enjoyable and effective mode of exercise rehabilitation for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Read full article

Posted in News | Tagged , , , , | Comments Off on Patient experiences & the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study

Human Herpesvirus-6 reactivation, mitochondrial fragmentation, & the coordination of antiviral & metabolic phenotypes in ME/CFS

Human Herpesvirus-6 reactivation, mitochondrial fragmentation, and the coordination of antiviral and metabolic phenotypes in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Philipp Schreiner, Thomas Harrer, Carmen Scheibenbogen, Stephanie Lamer, Andreas Schlosser, Robert K Naviaux and Bhupesh K Prusty in ImmunoHorizons April 1, 2020, 4 (4) 201-215 [doi.org/10.4049]

 

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multifactorial disorder with many possible triggers. Human herpesvirus (HHV)–6 and HHV-7 are two infectious triggers for which evidence has been growing.

To understand possible causative role of HHV-6 in ME/CFS, metabolic and antiviral phenotypes of U2-OS cells were studied with and without chromosomally integrated HHV-6 and with or without virus reactivation using the histone deacetylase inhibitor trichostatin-A.

Proteomic analysis was conducted by pulsed stable isotope labeling by amino acids in cell culture analysis. Antiviral properties that were induced by HHV-6 transactivation were studied in virus-naive A549 cells challenged by infection with influenza-A (H1N1) or HSV-1.

Mitochondria were fragmented and 1-carbon metabolism, dUTPase, and thymidylate synthase were strongly induced by HHV-6 reactivation, whereas superoxide dismutase 2 and proteins required for mitochondrial oxidation of fatty acid, amino acid, and glucose metabolism, including pyruvate dehydrogenase, were strongly inhibited.

Adoptive transfer of U2-OS cell supernatants after reactivation of HHV-6A led to an antiviral state in A549 cells that prevented superinfection with influenza-A and HSV-1. Adoptive transfer of serum from 10 patients with ME/CFS produced a similar fragmentation of mitochondria and the associated antiviral state in the A549 cell assay.

Antiviral-immunity-in-ME/CFS (BK Prusty

In conclusion, HHV-6 reactivation in ME/CFS patients activates a multisystem, proinflammatory, cell danger response that protects against certain RNA and DNA virus infections but comes at the cost of mitochondrial fragmentation and severely compromised energy metabolism.

Comment by Cort Johnson: Explaining ME/CFS? Prusty / Naviaux Study Ties Infections to Energy Breakdowns

EurekAlert: For ME/CFS patients, viral immunities come at a devastating, lifelong cost

UCSDSNews: For ME/CFS Patients, Viral Immunities Come at a Devastating, Lifelong Cost

Posted in News | Tagged , , , , , , , , , , | Comments Off on Human Herpesvirus-6 reactivation, mitochondrial fragmentation, & the coordination of antiviral & metabolic phenotypes in ME/CFS

Altered muscle membrane potential & redox status differentiates two subgroups of patients with CFS

Altered muscle membrane potential and redox status differentiates two subgroups of patients with chronic fatigue syndrome, by Yves Jammes, Nabil Adjriou, Nathalie Kipson, Christine Criado, Caroline Charpin, Stanislas Rebaudet, Chloé Stavris, Régis Guieu, Emmanuel Fenouillet & Frédérique Retornaz in Journal of Translational Medicine vol 18, no: 173 (2020)

 

Research abstract:

Background
In myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), altered membrane excitability often occurs in exercising muscles demonstrating muscle dysfunction regardless of any psychiatric disorder. Increased oxidative stress is also present in many ME/CFS patients and could affect the membrane excitability of resting muscles.

Methods
Seventy-two patients were examined at rest, during an incremental cycling exercise and during a 10-min post-exercise recovery period. All patients had at least four criteria leading to a diagnosis of ME/CFS. To explore muscle membrane excitability, M-waves were recorded during exercise (rectus femoris (RF) muscle) and at rest (flexor digitorum longus (FDL) muscle). Two plasma markers of oxidative stress (thiobarbituric acid reactive substance (TBARS) and oxidation–reduction potential (ORP)) were measured. Plasma potassium (K+) concentration was also measured at rest and at the end of exercise to explore K+ outflow.

Results
Thirty-nine patients had marked M-wave alterations in both the RF and FDL muscles during and after exercise while the resting values of plasma TBARS and ORP were increased and exercise-induced K+ outflow was decreased. In contrast, 33 other patients with a diagnosis of ME/CFS had no M-wave alterations and had lower baseline levels of TBARS and ORP. M-wave changes were inversely proportional to TBARS and ORP levels.

Conclusions
Resting muscles of ME/CFS patients have altered muscle membrane excitability. However, our data reveal heterogeneity in some major biomarkers in ME/CFS patients. Measurement of ORP may help to improve the diagnosis of ME/CFS.

Trial registration Ethics Committee “Ouest II” of Angers (May 17, 2019) RCB ID: number 2019-A00611-56

Posted in News | Tagged , , , , , , , , , , , , , , , | Comments Off on Altered muscle membrane potential & redox status differentiates two subgroups of patients with CFS

Self-isolating with ME – Tell your story for ME Awareness week

Self-isolating with ME

Tell your story for ME Awareness week

 

We’re hearing a lot about the joys and trials of being restricted to home when healthy or ‘at risk’. Many people with ME are however practised at ‘staying home’ (or being housebound) while feeling very ill.

ME Awareness week, 10-17 May 2020

 

Help WAMES tell what self-isolation means for people with ME.

How does your ME self-isolation experience compare with the Covid-19 experience?

  • View from my window – 2 years 2 months

    the struggle to understand what was wrong with you
    grieving for your lost life

  • learning to cope with new & frightening symptoms
    depending on others in new & unwelcome ways
  • the uncertainty about recovery
  • a changed relationship with your family and friends
  • your contact, or lack of it, with the outside world
  • how did you adapt & find a quality of life – hobbies, education, work

Isolated with ME – 2014-17

How has the C-19 lockdown affected you?

  • has it made life more difficult?
  • has it opened up new experiences?
  • brought back bad memories of being housebound in the past?
  • is this your first experience of being housebound?
  • is life less stressful, more lonely?
  • have people understood your experience better?

Tell us

  • in prose, rhyme, photos, or through the arts
  • one paragraph or photo, or a longer story
  • send as many contributions as you like
  • in English or Welsh
  • use your name or pseudonym
  • give us your permission to use your contributions to raise awareness
  • send to jan@wames.org.uk  or helpline@wames.org.uk
    Or via the online form www.wames.org.uk

There may never be a better time to communicate our experience.
So many people now know something of the frustrations of losing control of their future.
Or have watched others suffer.

Download this page in pdf

Posted in News | Tagged | Comments Off on Self-isolating with ME – Tell your story for ME Awareness week

Potential role of microbiome in CFS/ME

Potential role of microbiome in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), by Guiseppe Lupo. PhD thesis, Università Cattolica del Sacro Cuore,  XXXII ciclo, a.a. 2018/19, Piacenza, 8 April 2020

 

Research abstract:

The Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), is a severe multisystemic disease characterized by immunological abnormalities and dysfunction of energy metabolism. Recent evidence suggest that there is a strong correlation between dysbiosis and pathological condition.

The present research investigated the composition of the intestinal and oral microbiota in CFS/ME patients in comparison to healthy controls and determined whether any observed differences could be useful for the identification of diagnostic biomarkers. The fecal and salivary bacterial composition in CFS/ME patients was investigated by Illumina sequencing of 16S rRNA gene amplicons.

The fecal microbiota of CFS/ME patients showed a significant reduction of Lachnospiraceae, particularly Anaerostipes, compared to the non-CFS/ME groups, and an increase of Phascolarctobacterium faecium and unclassified Ruminococcus. Bacteroides vulgatus, unclassified Bacteroides, Bacteroides uniformis and unclassified Barnesiella resulted significantly more abundant in CFS/ME patients. The oral microbiota of CFS/ME patients showed a significant increase of Rothia dentocariosa. The fecal metabolic profile of a subgroup of CFS/ME patients revealed an overall increase of SCFAs and indole derivatives compared to the non-CFS/ME groups, suggesting an increase in the fermentation processes.

Our results support the autoimmune hypothesis for CFS/ME condition and if confirmed by larger studies, the differences detected in the microbial profiles of CFS/ME patients may be used as markers for a more accurate diagnosis and for the development of specific therapeutic strategies.

Read more

Posted in News | Tagged , , , | Comments Off on Potential role of microbiome in CFS/ME

Unravelling ME/CFS: Gender‐specific changes in the microRNA expression profiling in ME/CFS

Unravelling ME/CFS: Gender‐specific changes in the microRNA expression profiling in ME/CFS by Amanpreet K Cheema, Leonor Sarria, Mina Bekheit, Fanny Collado, Eloy Almenar‐Pérez, Eva Martín‐Martínez, Jose Alegre, Jesus Castro‐Marrero, Mary A Fletcher, Nancy G Klimas,  Elisa Oltra, Lubov Nathanson in Journal of Cellular and Molecular Medicine 14 April 2020 [doi.org/10.1111/jcmm.15260]

 

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem illness characterized by medically unexplained debilitating fatigue with suggested altered immunological state.

Our study aimed to explore peripheral blood mononuclear cells (PBMCs) for microRNAs (miRNAs) expression in ME/CFS subjects under an exercise challenge.

The findings highlight the immune response and inflammation links to differential miRNA expression in ME/CFS. The present study is particularly important in being the first to uncover the differences that exist in miRNA expression patterns in males and females with ME/CFS in response to exercise. This provides new evidence for the understanding of differential miRNA expression patterns and post‐exertional malaise in ME/CFS.

We also report miRNA expression pattern differences associating with the nutritional status in individuals with ME/CFS, highlighting the effect of subjects’ metabolic state on molecular changes to be considered in clinical research within the NINDS/CDC ME/CFS Common Data Elements. The identification of gender‐based miRNAs importantly provides new insights into gender‐specific ME/CFS susceptibility and demands exploration of sex‐suited ME/CFS therapeutics.

Posted in News | Tagged , , , , , , , , , , , , , , , , , | Comments Off on Unravelling ME/CFS: Gender‐specific changes in the microRNA expression profiling in ME/CFS

Acupuncture for CFS: an overview of systematic reviews

Acupuncture for Chronic Fatigue Syndrome: an overview of systematic reviews, by Zi-han Yin, Lin-jia Wang, Ying Cheng, Jiao Chen, Xiao-juan Hong, Ling Zhao, Fan-rong Liang in Chin. J. Integr. Med. (2020). [https://doi.org/10.1007/s11655-020-3195-3]

 

Review abstract:

Objective

To evaluate the quality of the existing studies and summarize evidence of important outcomes of meta-analyses/systematic reviews (MAs/SRs) of CFS.

Methods

Potentially eligible studies were searched in the following electronic databases from inception to 1 September, 2019: Chinese Biomedical Literature Database (CBM), China Science and Technology Journal Database (VIP), China National Knowledge Infrastructure (CNKI), WanFang Database (WF), Web of Science, Embase, PubMed and Cochrane Library. Grades of Recommendation, Assessment, Development, and Evaluation (GRADE) was used to evaluate the quality of evidence.

The methodological quality of the literature was evaluated by A Measure Tool to Assess Systematic Reviews-2 (AMSTAR-2) and the quality of the report was assessed by Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA). The intra-class correlation coefficient was used to assess the consistency of the reviewers, with an overall intraclass correlation coefficient score of 0.967.

Results

Ten MAs/SRs were included. The overall conclusions were that acupuncture had good safety and efficacy in the treatment of CFS, but some of these results were contradictory. The GRADE indicated that out of the 17 outcomes, high-quality evidence was provided in 0 (0%), moderate in 3 (17.65%), low in 10 (58.82%), and very low in 4 (23.53%). The results of AMSTAR-2 showed that the methodological quality of all included studies was critically low. The PRISMA statement revealed that 8 articles (80%) were in line with 20 of the 27-item checklist, and 2 articles (20%) matched with 10–19 of the 27 items.

Conclusion

We found that acupuncture on treating CFS has the advantage for efficacy and safety, but the quality of SRs/MAs of acupuncture for CFS need to be improved

Read full paper

Posted in News | Tagged , , , , , , , | Comments Off on Acupuncture for CFS: an overview of systematic reviews

Autoimmunity-related risk variants in PTPN22 & CTLA4 are associated with ME/CFS with infectious onset

Autoimmunity-related risk variants in PTPN22 and CTLA4 are associated with ME/CFS with infectious onset, by Sophie Steiner, Sonya C Becker, Jelka Hartwig, Franziska Sotzny, Sebastian Lorenz, Sandra Bauer, Madlen Löbel, Anna B Stittrich, Patricia Grabowski and Carmen Scheibenbogen in Front. Immunol., 09 April 2020[doi.org/10.3389/fimmu.2020.00578]

 

Research abstract:

SNP model by David Eccles, Wiki commons

Single nucleotide polymorphisms (SNP) in various genes have been described to be associated with susceptibility to autoimmune disease.

In this study, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients and controls were genotyped for five immune gene SNPs in tyrosine phosphatase non-receptor type 22 (PTPN22, rs2476601), cytotoxic T-lymphocyte-associated protein 4 (CTLA4, rs3087243), tumor necrosis factor (TNF, rs1800629 and rs1799724), and interferon regulatory factor 5 (IRF5, rs3807306), which are among the most important risk variants for autoimmune diseases.

Analysis of 305 ME/CFS patients and 201 healthy controls showed significant associations of the PTPN22 rs2476601 and CTLA4 rs3087243 autoimmunity-risk alleles with ME/CFS. The associations were only found in ME/CFS patients, who reported an acute onset of disease with an infection (PTPN22 rs2476601: OR 1.63, CI 1.04–2.55, p = 0.016; CTLA4 rs3087243: OR 1.53, CI 1.17–2.03, p = 0.001), but not in ME/CFS patients without infection-triggered onset (PTPN22 rs2476601: OR 1.09, CI 0.56–2.14, p = 0.398; CTLA4 rs3087243: OR 0.89, CI 0.61–1.30, p = 0.268).

This finding provides evidence that autoimmunity might play a role in ME/CFS with an infection-triggered onset. Both genes play a key role in regulating B and T cell activation.

Meet The Researchers: Carmen Scheibenbogen

 

Posted in News | Tagged , , , , , , , , , , , , , , | Comments Off on Autoimmunity-related risk variants in PTPN22 & CTLA4 are associated with ME/CFS with infectious onset

Processing of Laser-Evoked Potentials in patients with Chronic Whiplash-Associated Disorders, CFS & healthy controls: a case–control study

Processing of Laser-Evoked Potentials in patients with Chronic Whiplash-Associated Disorders, Chronic Fatigue Syndrome, and healthy controls: a case–control study, by Lisa Goudman, PhD, Liesbeth Daenen, PhD, Andre Mouraux, PhD, Jo Nijs, PhD, Patrick Cras, PhD, Nathalie Roussel, PhD, Maarten Moens, PhD, Iris Coppieters, PhD, Eva Huysmans, MSc, Margot De Kooning, PhD in Pain Medicine, 14 April 2020 [https://doi.org/10.1093/pm/pnaa068]

 

Research abstract:

Objective
Laser-evoked potentials (LEPs) are among the reliable neurophysiological tools to investigate patients with neuropathic pain, as they can provide an objective account of the functional status of thermo-nociceptive pathways. The goal of this study was to explore the functioning of the nociceptive afferent pathways by examining LEPs in patients with chronic whiplash-associated disorders (cWAD), patients with chronic fatigue syndrome (CFS), and healthy controls (HCs).

Design
Case–control study.

Setting
A single medical center in Belgium.

Subjects
The LEPs of 21 patients with cWAD, 19 patients with CFS, and 18 HCs were analyzed in this study.

Methods
All participants received brief nociceptive CO2 laser stimuli applied to the dorsum of the left hand and left foot while brain activity was recorded with a 32-channel electroencephalogram (EEG). LEP signals and transient power modulations were compared between patient groups and HCs.

Results
No between-group differences were found for stimulus intensity, which was supraliminal for Aδ fibers. The amplitudes and latencies of LEP wave components N1, N2, and P2 in patients with cWAD and CFS were statistically similar to those of HCs. There were no significant differences between the time–frequency maps of EEG oscillation amplitude between HCs and both patient populations.

Conclusions
EEG responses of heat-sensitive Aδ fibers in patients with cWAD and CFS revealed no significant differences from the responses of HCs. These findings thus do not support a state of generalized central nervous system hyperexcitability in those patients.

Read full paper

Posted in News | Tagged , , , , , , , | Comments Off on Processing of Laser-Evoked Potentials in patients with Chronic Whiplash-Associated Disorders, CFS & healthy controls: a case–control study