Patient perspectives on self-management technologies for CFS

Posted on 06/11/2019 by wames

Patient perspectives on self-management technologies for Chronic Fatigue Syndrome, by Tabby Davies, Simon Jones, Ryan Kelly in CHI Conference on Human Factors in Computing Systems Proceedings (CHI 2019), May 4–9, 2019, Glasgow, Scotland UK, 13 pages. https://doi.org/10.1145/3290605. 3300452

 

Research abstract:

Chronic Fatigue Syndrome (CFS) is a debilitating condition that is characterised by a range of physical, cognitive and social impairments. However, a lack of clinical consensus around effective treatments for CFS means that patients typically engage in self-management of their symptoms.

In this paper we investigate CFS patients’ perspectives on the potential for technological support for their self-management practices.

We report findings from three studies in which people living with CFS

  1. prioritised symptoms that they would like technologies to address,
  2. articulated their current approaches to self-management alongside
    challenges they face, and
  3. reflected on their experiences with three existing smartphone apps related to symptom management.

The findings provide insight into the specific needs of CFS patients and show how
their self-management goals diverge from the general notion of ‘self-tracking’ as currently understood by the HCI (Human-Computer Interaction) community. We also reflect on the ability of researchers to engage in a participatory process with individuals suffering from severely debilitating medical
symptoms.

CONCLUSION AND FUTUREWORK

This paper has explored the design of self-management technologies for people living with ME/CFS. Study 1 identified a list of symptoms prioritized by people with ME/CFS, giving immediate direction for the design of condition-specific support. Study 2 identified a need for solutions that assist existing self-management practices such as activity pacing and fatigue monitoring. Study 3 revealed specific positive and negative design features through participants’ responses to a series of commercial apps. Collectively, our studies illustrate the specific needs of people with ME/CFS and provide further evidence that chronic conditions bring unique concerns that must influence technology design [11, 56].

Based on our study, we see several opportunities for future work.

First, our recommendations can support the design of tailored self-management applications that should be tested in conjunction with ME/CFS patients, such that they have an ongoing stake in the design process [42].

Second, our design recommendations are based on patients’ needs and existing practices. However, it is important to recognise that our work does not incorporate the perspectives of clinicians, and these may be complementary in terms of understanding opportunities for self-management [48].

Finally, there may be opportunities to explore how technologies could support the collaboration that occurs between ME/CFS patients and their caregivers [55]. A number of participants in Study 2 acknowledged that they relied on family members for additional support. Future work could explore the design of collaborative applications that provide caregivers with a stake in the condition management process.

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Healthcare services for people with ME & CFS in Wales – your views needed

Posted on 06/10/2019 by wames

Healthcare services for people with ME & CFS in Wales

a clinical research study by a third-year medical student at Cardiff University

Aim of the project:

 

The aim of this project is to better understand healthcare services for people with ME/CFS in all areas of Wales.

 

You are invited to give your experiences of healthcare services:

  • all participants must be at least 18 years of age
  • participants should have a diagnosis of ME/CFS made by a doctor or practicing healthcare professional
  • participation is voluntary and your responses will be kept confidential
  • it is important to get an accurate picture of services (both good and bad) in every part of Wales – please encourage as many people to take part as possible. Download flyer: Healthcare services for people with ME

The results will also be presented to health boards and the national steering group for ME/CFS services, to aid future planning for services.

The questionnaire is online and the deadline for responses is 20th June 2019

Please note

There is an opportunity to add comments about your experience, but you will be unable to save your answers and complete the questionnaire over more than one sitting.

To make it easier to pace yourself, you should read all the questions before beginning to answer. Then, if you wish to take time to write some comments, you can add them by cutting and pasting into the questionnaire.  https://tinyurl.com/y2vu2vfq

Do you have questions?

The person with ME/CFS, (or primary carer if severely affected) should email the researcher Richardsonh5@cardiff.ac.uk or research supervisor Dr Nina Muirhead nina.muirhead@nhs.net

University of Cardiff, School of Medicine
UHW Main Building, Heath Park
Cardiff       CF14 4XN

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ME treatment in Wales investigated on Y byd ar bedwar (S4C)

Posted on 06/05/2019 by wames

Y byd ar bedwar – 4th June 2019

 

S4C’s excellent documentary programme Y Byd ar Bedwar talks to Jonathan Vaughan, carer of his fiancé 28 year old Natalie Price who is severely ill with ME.  The lack of care and support for people with ME in Wales is explored as Jonathan and fellow sufferer Rhian Linecar talk about how the illness affects them and how they have turned to alternative medicine for help.

The controversial treatments of GET and CBT are mentioned along with the PACE trial. Dr Charles Shepherd, Cardiff medical students and Ben Lake MP (Plaid Cymru) give their experience of the lack of care the need to provide specialist care and increase funding for research.

Dr Neil Harrison at CUBRIC, Cardiff University’s Brain Imaging Centre discusses the research he is embarking on into the effects of ME on the brain and immune system. Dr Ian Harris explains the frustrations of doctors looking for ways to help patients and how their hands are tied by the NICE guidelines.

Watch the programme – available for 29 days – subtitles are available – 24 minutes

 

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A possible role for mitochondrial-derived peptides humanin & MOTS-c in patients with Q fever & CFS

Posted on 06/04/2019 by wames

A possible role for mitochondrial-derived peptides humanin and MOTS-c in patients with Q fever fatigue syndrome and chronic fatigue syndrome, by Ruud PH Raijmakers, Anne F M Jansen, Stephan P Keijmel, Rob ter Horst, Megan E Roerink, Boris Novakovic, Leo AB Joosten, Jos W M van der Meer, Mihai G Netea and Chantal P Bleeker-Roversen, in Journal of Translational Medicine 2019 17:157 [https://doi.org/10.1186/s12967-019-1906-3]

 

Research abstract:

Background:

Q fever fatigue syndrome (QFS) is a well-documented state of prolonged fatigue following around 20% of acute Q fever infections.

General schema showing the relationships of the genome, transcriptome, proteome, and metabolome (lipidome).

It has been hypothesized that low grade inflammation plays a role in its aetiology. In this study, we aimed to identify transcriptome profiles that could aid to better understand the pathophysiology of QFS.

Methods:

RNA of monocytes was collected from QFS patients (n = 10), chronic fatigue syndrome patients (CFS, n = 10), Q fever seropositive controls (n = 10), and healthy controls (n = 10) who were age- (± 5 years) and sex-matched. Transcriptome analysis was performed using RNA sequencing.

Results:

Mitochondrial-derived peptide (MDP)-coding genes MT-RNR2 (humanin) and MT-RNR1 (MOTS-c) were differentially expressed when comparing QFS (− 4.8 log2-fold-change P = 2.19 × 10−9 and − 4.9 log2-fold-change P = 4.69 × 10−8), CFS (− 5.2 log2-fold-change, P =3.49 × 10−11 − 4.4 log2-fold-change, P = 2.71 × 10−9), and Q fever seropositive control (− 3.7 log2-fold-change P = 1.78 × 10−6 and − 3.2 log2-fold-change P = 1.12 × 10−5) groups with healthy controls, resulting in a decreased median production of humanin in QFS patients (371 pg/mL; Interquartile range, IQR, 325–384), CFS patients (364 pg/mL; IQR 316–387), and asymptomatic Q fever seropositive controls (354 pg/mL; 292–393).

Conclusions:

Expression of MDP-coding genes MT-RNR1 (MOTS-c) and MT-RNR2 (humanin) is decreased in CFS, QFS, and, to a lesser extent, in Q fever seropositive controls, resulting in a decreased production of humanin. These novel peptides might indeed be important in the pathophysiology of both QFS and CFS.

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Autonomic function in ME & CFS: comparing self-report & objective measures

Posted on 06/03/2019 by wames

Autonomic dysfunction in myalgic encephalomyelitis and chronic fatigue syndrome: comparing self-report and objective measures, by Jane Kemp, Madison Sunnquist, Leonard A Jason, Julia L Newton in Clin Auton Res [Preprint 21 May 2019]

 

Letter extracts:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have debilitating impacts on affected individuals. Core symptoms include post-exertional malaise, neurocognitive challenges, and sleep dysfunction [1]. Additionally, a significant minority of patients experience autonomic symptoms, including orthostatic intolerance, gastrointestinal disturbances, and circulation issues [2].

Several case definitions for ME and CFS require the presence of autonomic dysfunction for diagnosis [2], while other researchers have proposed an ‘autonomic dysfunction’ subtype of ME and CFS [3]. Identifying the appropriate measures of autonomic symptomatology for individuals with ME and CFS will further contribute to understanding the role of the autonomic system in this illness.

Heart rate variability (HRV), a measure of the variation in time between heart beats, has been utilized as an objective measurement of autonomic functioning in ME and CFS research, and some researchers have suggested that HRV could be utilized as a “potential bedside diagnostic tool” for ME and CFS [4]. HRV can be divided into two major components, the low-frequency (LF) component, indicative of sympathetic dominance, and the high-frequency (HF) component, indicative of parasympathetic dominance. In
addition, the LF to HF ratio is considered to be an indicator of sympatho-vagal balance [5].

As objective measures can be costly and time-intensive, some researchers utilize self-report measures of autonomic symptoms. Previous research has compared results from the self-report Composite Autonomic Symptom Scale (COMPASS) [6] and HRV and found a significant negative correlation between LF-HRV and COMPASS scores [7].

The aim of the study reported here was to extend upon this body of literature by examining the association between HRV and autonomic items from another self-report measure, the DePaul Symptom Questionnaire (DSQ) [8].

The study protocol was approved by the ethical review board (ethical approval number: 12/NE/0146) of the Royal Victoria Infirmary (Newcastle upon Tyne, UK). Informed consent from participants was obtained by staff trained in Good Clinical Practice guidelines. All participants (n = 141) met the Fukuda et al. (1994) criteria for CFS [9]. After completing the DSQ, participants underwent a battery of autonomic tests (described below) using the Task Force® Monitor program version 2.2 (CNSystems Medizintechnik
GmbH, Graz, Austria).

The mean age of the participant cohort was 45.9 (standard deviation 13.6) years; 80.9% were female, and 98.6% were Caucasian. While over half of the participants (51.5%) held Bachelor’s or graduate degrees, only 35.8% were working at the time of the study. Additionally, 35.0% of the sample reported being on disability (the remainder of the sample comprised students, homemakers, and individuals who were unemployed or retired).

The DSQ is a freely-available, reliable diagnostic measure of both core and subtyped symptoms of ME/CFS [3, 8] and includes seven items related to autonomic symptoms:
bladder problems; irritable bowel problems; nausea; feeling unsteady on feet (like you might fall); shortness of breath or trouble catching your breath; dizziness or fainting; and
irregular heartbeats. Participants rated the frequency and severity of each symptom for the preceding 6 months. Frequency ratings ranged from 0 (symptom not present) to 4 (all
of the time). Severity ratings ranged from 0 (symptom not present) to 4 (very severe). A composite score was calculated for each symptom by multiplying the frequency and severity ratings by 25 (to form a 100-point scale) and averaging the symptom’s frequency and severity scores….

… The results of this analysis provide some support for consistency between participants’ reports of autonomic symptoms on the DSQ and objective measures of autonomic symptomatology. As the self-report items in the current study referred to the preceding 6 months of an individual’s symptoms, while the objective tests measured symptoms at the exact moment of the study, high correlation coefficients were not expected. The results further support previous research [7] indicating that individuals are accurate reporters of autonomic symptoms.

This study had several limitations: its sample was small, demographically homogenous, and referral based; therefore, additional research is required to verify the study’s findings.

Despite these limitations, the results provide initial evidence of the construct validity of the DSQ’s autonomic items and indicate that individuals with ME and CFS are accurate reporters of autonomic symptoms.

In addition to providing evidence for the construct validity of DSQ items, this finding of accurate self-reporting of autonomic symptoms by individuals is significant in that previous studies have found that individuals with ME and CFS often face de-legitimization by physicians and loved ones [10]. Validating the individual’s self-reported symptoms using objective data, such as HRV, may help in reducing stigma towards individuals with ME and CFS.

Read full letter

 

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Genetic predisposition for immune system, hormone, & metabolic dysfunction in ME/CFS

Posted on 05/31/2019 by wames

Genetic predisposition for immune system, hormone, and metabolic dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a pilot study, by Melanie Perez,  Rajeev Jaundoo,  Kelly Hilton,  Ana Del Alamo,  Kristina Gemayel,  Nancy G. Klimas,  Travis J A Craddock and  Lubov Nathanson in Front. Pediatr., 24 May 2019 [https://doi.org/10.3389/fped.2019.00206]

 

Introduction:

SNP model by David Eccles, Wiki commons

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a multifactorial illness of unknown etiology with considerable social and economic impact. To investigate a putative genetic predisposition to ME/CFS we conducted genome-wide single-nucleotide polymorphism (SNP) analysis to identify possible variants.

Methods:
383 ME/CFS participants underwent DNA testing using the commercial company 23andMe. The deidentified genetic data was then filtered to include only non-synonymous and nonsense SNPs from exons and microRNAs, and SNPs close to splice sites. The frequencies of each SNP were calculated within our cohort and compared to frequencies from the Kaviar reference database. Functional annotation of pathway sets containing SNP genes with high frequency in ME/CFS was performed using over-representation analysis via ConsensusPathDB. Furthermore, these SNPs were also scored using the Combined Annotation Dependent Depletion (CADD) algorithm to gauge their deleteriousness.

Results:
5693 SNPs were found to have at least 10% frequency in at least one cohort (ME/CFS or reference) and at least two-fold absolute difference for ME/CFS. Functional analysis identified the majority of SNPs as related to immune system, hormone, metabolic, and extracellular matrix organization. CADD scoring identified 517 SNPs in these pathways that are among the 10% most deleteriousness substitutions to the human genome.

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Searching for serum antibodies to neuronal proteins in patients with ME/CFS

Posted on 05/29/2019 by wames

Searching for serum antibodies to neuronal proteins in patients with Myalgic Encephalopathy/Chronic Fatigue Syndrome, by Maria Pia Giannoccaro, Judith Cossins, Kari Sorland, Oystein Fluge, Angela Vincent in Clinical Therapeutics Vol 41, Issue 5, May 2019, Pages 836-847

 

Research abstract:

Purpose:
A role for the immune system in causing myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) is long suspected, but few studies have looked for specific autoantibodies that might contribute to the symptoms. Our aim was to look for evidence of antibodies to neuronal proteins in patients with ME/CSF.

Methods:
Sera samples from 50 patients and 50 healthy individuals were sent coded to the Neuroimmunology Laboratory in Oxford. Screening for antibody binding to neuronal tissue was performed on brain tissue and neuronal cultures. Specific serum antibodies were assessed by antigen-specific cell-based assays and radioimmunoassays. After antibody testing, the associations between seropositive status and clinical data were
investigated.

Findings:
Overall, 8 patients and 11 participants were found to have some serum immunoreactivity toward neuronal or neuromuscular junction proteins, but only 1 patient and 2 participants had specific serum antibodies. Nevertheless, seropositive status in patients with ME was associated with shorter duration since onset and a more severe disease.

Implications:
The results indicate no overall increased frequency of antibodies to neuronal proteins in ME/CSF and no evidence of a specific antibody that might be causative or contribute to clinical features in patients. However, the association of seropositive status with shorter duration of disease and more severe symptoms suggests a possible role of antibodies
at onset in some patients and should be the focus of future studies.

Read full article

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Biotransformation profiles from a cohort of chronic fatigue women in response to a hepatic detoxification challenge

Posted on 05/28/2019 by wames

Biotransformation profiles from a cohort of chronic fatigue women in response to a hepatic detoxification challenge, by Elardus Erasmus, Francois E Steffens, Mari van Reenen, B Chris Vorster, Carolus J Reinecke in  PLoS ONE 14 (5) May 2019 [https://doi.org/10.1371/journal.pone.0216298]

 

Research abstract:

Chronic fatigue, in its various manifestations, frequently co-occur with pain, sleep disturbances and depression and is a non-communicable condition which is rapidly becoming endemic worldwide. However, it is handicapped by a lack of objective definitions and diagnostic measures.

This has prompted the World Health Organization to develop an international instrument whose intended purpose is to improve quality of life (QOL), with energy and fatigue as one domain of focus. To complement this objective, the interface between detoxification, the exposome, and xenobiotic-sensing by nuclear receptors that mediate induction of biotransformation-linked genes, is stimulating renewed attention to a rational development of strategies to identify the metabolic profiles in complex multifactorial conditions like fatigue.

Here we present results from a seven-year study of a cohort of 576 female patients suffering from low to high levels of chronic fatigue, in which phase I and phase II biotransformation was assessed. The biotransformation profiles used were based on hepatic detoxification challenge tests through oral caffeine, acetaminophen and acetylsalicylic acid ingestion coupled with oxidative stress analyses.

The interventions indicated normal phase I but increased phase II glucuronidation and glycination conjugation. Complementarity was indicated between a fatigue scale, medical symptoms and associated energy-related parameters by application of Chi-square Automatic Interaction Detector (CHAID) analysis.

The presented study provides a cluster of data from which we propose that multidisciplinary inputs from the combination of a fatigue scale, medical symptoms and biotransformation profiles provide the rationale for the development of a comprehensive laboratory instrument for improved diagnostics and personalized interventions in patients with chronic fatigue with a view to improving their QOL.

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Health services for ME in Wales – a 20 year WAMES update

Posted on 05/27/2019 by wames

Health services for ME in Wales – a WAMES update

 

WAMES in Wales

It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services.  Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.

That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?

Welsh Government & ME

  • Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
  • In 2004 a series of Masterclasses were planned around the country.  The interest shown by GPs was so low, only one took place.
  • In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
  • WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
  • The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
  • In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
  • In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.

Has healthcare for ME improved?

It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.

WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.

The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.

Why is progress so slow?

There are many possible reasons contributing to this:

  • Continuing reorganisation and financial difficulties in Health Boards
  • Constantly changing personnel in HBs and Welsh Government
  • Lack of a clinical champion for Wales
  • No funding from the Welsh Government
  • Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
  • No obligation for HBs to implement improvements
  • Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
  • An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
  • A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.

WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose.   Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.

What next?

The All Wales Implementation Group (AWIG) has a new government policy lead.

Current work priorities are:

  • Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
  • Redesigning a clinical pathway
  • Developing patient information sheets
    Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)

WAMES will:

  • continue to represent people with ME on AWiG
  • continue to explore awareness raising possibilities with the RCGP;
  • work with the NHS in devising an ME self-management programme
  • represent Welsh people with ME on the NICE guideline review
  • take every opportunity to raise awareness of neurological ME in NHS Wales

Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales  jan@wames.org.uk

 

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WAMES AGM 15th June 2019

Posted on 05/24/2019 by wames

Annual General Meeting of WAMES

 

The annual business meeting of the Welsh Association of ME & CFS Support will be held by Skype to review past events and plan future activities.

Please contact jan@wames.org.uk if you have anything to report to WAMES, or topics you wish us to discuss or more importantly, if you would like to join the team or volunteer in a any way.  Let Jan know if you wish to attend.

When:

Saturday 15th June 2019   at  10.30am

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