Patients with FM & CFS show increased hsCRP compared to healthy controls

Posted on 06/24/2019 by wames

Patients with Fibromyalgia and Chronic Fatigue Syndrome show increased hsCRP compared to healthy controls, by Nina Groven, Egil A Fors, Solveig KlæboReitan, in Brain, Behavior, and Immunity [Available online 7 June 2019] https://doi.org/10.1016/j.bbi.2019.06.010

Highlights

  • CFS/ME and Fibromyalgia share common features of inflammation.
  • C-reactive protein (CRP) is elevated in CFS/ME and Fibromyalgia.
  • CRP remains high in CFS/ME and Fibromyalgia after controlling for age and BMI.

Research abstract:
Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) are both chronic disorders that have a devastating effect on the lives of the affected patients and their families. Both conditions have overlapping clinical features that partly resemble those of inflammatory disorders. The etiology is still not understood, and it is suggested that the immune system might be a contributing factor. So far, the results are inconclusive.

The purpose of this study was to compare the two conditions and investigate the level of the inflammatory marker high-sensitivity CRP (hsCRP) in CFS and FM patients compared to healthy controls.

Female participants aged 18–60 years were enrolled in this study. The group consisted of 49 CFS patients, 57 FM patients, and 54 healthy controls. hsCRP levels were significantly higher for both the CFS and the FM groups compared to healthy controls when adjusting for age, smoking, and BMI (p < .001). There was no difference between the two patient groups. The level of hsCRP was affected by BMI but not by age and smoking.

Patients with CFS and FM have higher concentrations of hsCRP compared to healthy controls. This remains significant even after adjusting for BMI. CFS and FM cannot be distinguished from each other on the basis of hsCRP in our study.

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Differential diagnosis between “chronic fatigue” and “chronic fatigue syndrome”

Posted on 06/21/2019 by wames

Differential diagnosis between “chronic fatigue” and “chronic fatigue syndrome”, by Chang-GueSon in Integrative Medicine Research, Volume 8, Issue 2, June 2019, Pages 89-91 [https://doi.org/10.1016/j.imr.2019.04.005]

Commentary:

Fatigue is a common complaint experienced by most of subjects during lifetime, which affects approximately 30–50% of general population as point prevalence.1 According to the fatigue-lasting duration, it is classified as acute (<1 month), prolonged (>1 month, <6 months), and chronic fatigue (≥6 months), respectively. Acute fatigue is generally disappears after taking a rest or treating the causative diseases, while uncontrolled prolonged and chronic fatigue limit the physical and social activities.2 Especially, medically unexplained chronic fatigue is a debilitating status, such as idiopathic chronic fatigue (ICF) and chronic fatigue syndrome (CFS).

On the other hand, to distinguish CFS from chronic fatigue or ICF is very important in clinical practice. The reason is that although patients present fatigue symptom as their main complaint in subjects suffering from chronic fatigue or CFS, CFS is considered as to being in totally different pathologic illness.3 In 2015, US Institute of Medicine (IOM) reported diagnostic criteria for CFS as follows; three mandatory symptoms, a substantial impairment in activities accompanied by fatigue persisting for more than 6 months, post-exertional malaise (PEM) and unrefreshing sleep, and one optional symptom among cognitive impairment or orthostatic intolerance.4

Unlike chronic fatigue, CFS has characteristics of brain and CNS symptom and is counted as a complex, multisystem neuroimmune disease. As commonly referred to myalgic encephalomyelitis (ME)/CFS together, brain inflammation is frequently implied in pathology of CFS.5

Above facts brought a necessity of new name which distinguishes CFS from chronic fatigue, without the word “fatigue”. IOM therefore recommended “systemic exertion intolerance disease (SEID)” instead of CFS. The changed conception of CFS is summarized in Fig. 1. The accumulated evidences may indicate the possibility that CFS is not a part of chronic fatigue-related diseases but rather an isolated and different disease with chronic fatigue.6, 7 The major differences may come from the pathogenesis related to neuroinflammation in brain of CFS patients.8, 9

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Fig. 1. Chronic fatigue and CFS. The conventional concept (A) and newly changed concept (B) are presented.

Regarding therapeutics for CFS, a large-scale clinical study (called the PACE trial) results supported the cognitive behavior therapy (CBT) and graded exercise therapy (GET) as more effective therapies improving both fatigue and physical function.10 They were however abandoned or revised in both the U.S. and UK due to serious criticism by both scientists and patients. The criticisms were for the biases and limitations of their results as well as the unmatched recommendation of GET in contrary to PEM, a main feature of CFS by IOM diagnosis criteria.11, 12 Another trial using rituximab, anti-CD20 antibody, did not show therapeutic effects, and then no curable therapy exists to date.13 Unlike CFS, chronic fatigue generally shows the favorable clinical course. One systemic study revealed the recovery rate of 54–94% chronic fatigue, but <10% of CFS.14

Thus it is essential and therapeutically effective to stratify chronic fatigue-related diseases, at least chronic fatigue and CFS, for clinical practitioners.15, 16 Briefly, the differential diagnosis between chronic fatigue and CFS can be produced as show in Fig. 2. This was modified based on the diagnostic algorism for ME/CFS suggested by IOM in 2015.17 In this differential diagnosis, the keys are the severity of impaired individual activities due to fatigue, and complaints of PEM, unrefreshing sleep, cognitive dysfunction.

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Fig. 2. Suggested algorism for chronic fatigue, ICF and CFS.

ICF is another group with unexplained chronic fatigue, but does not meet the criteria for CFS. Prevalence of CFS is estimated approximately 1%, while ICF is higher by 10-fold of CFS in general population worldwide including in Korea.18, 19, 20 Many patients suffering from chronic fatigue traditionally have used alternative medicines including traditional herbal drugs.21 There is expectation that herbal remedies would be a suitable strategy for chronic fatigue-associated disorders in aspect of “multiple compounds and multiple targets” linked to especially CFS treatment. This article hopefully will provide a concise guide to manage patients with chronic fatigue-related complaints.

See references

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Illness duration, mood and symptom impact in adolescents with CFS/ME

Posted on 06/19/2019 by wames

Illness duration, mood and symptom impact in adolescents with chronic fatigue syndrome/ myalgic encephalomyelitis?, by Francesca K Neale, Deborah Christie, Dougal S Hargreaves, Terry Y Segal in Archives of Disease in Childhood, Jun 13 2019

Letter excerpt:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling condition that affects 0.4% to 2.4% of adolescents in the UK.

Previous studies have reported high levels of anxiety, depression and worry among adolescents with CFS/ME. In adult studies, concerns have been raised about delays in accessing specialist CFS/ME services and the impact of delays on patients’ health and well-being.

In this study, we aimed first to assess the prevalence of self-reported anxiety/depression, worry and degree of symptom impact among our patient population of adolescents with CFS/ME. We then investigated whether longer illness duration was associated with higher prevalence of self-reported anxiety/depression, worry and symptom impact at initial assessment…

Consistent with previous research, young people with CFS/ME had high levels of worry and mood disturbance; these concerns were more marked among patients who reported illness duration of greater than 24 months before specialist assessment. Although our study could not investigate the cause of delay in accessing specialist care, limited awareness of CFS/ME among young people, families, teachers and general practitioners is likely to be an important contributing factor, as well as the closure of many CFS/ME services.

Further research is needed to investigate whether earlier access to specialist services improves clinical outcomes (both in the short-term and long-term).

Read full letter

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Orthostatic intolerance in CFS

Posted on 06/17/2019 by wames

Orthostatic intolerance in chronic fatigue syndrome, by Richard Garner and James N Baraniuk in Journal of Translational Medicine 2019 17:185 [Published: 3 June 2019]
https://doi.org/10.1186/s12967-019-1935-y

 

Research abstract:

Background:
Orthostatic intolerance (OI) is a significant problem for those with chronic fatigue syndrome (CFS). We aimed to characterize orthostatic intolerance in CFS and to study the effects of exercise on OI.

Methods:
CFS (n = 39) and control (n = 25) subjects had recumbent and standing symptoms assessed using the 20-point, anchored, ordinal Gracely Box Scale before and after submaximal exercise. The change in heart rate (ΔHR ≥ 30 bpm) identified Postural Orthostatic Tachycardia Syndrome (POTS) before and after exercise, and the transient, exercise-induced postural tachycardia Stress Test Activated Reversible Tachycardia (START) phenotype only after exercise.

Results:
Dizziness and lightheadedness were found in 41% of recumbent CFS subjects and in 72% of standing CFS subjects. Orthostatic tachycardia did not account for OI symptoms in CFS. ROC analysis with a threshold ≥ 2/20 on the Gracely Box Scale stratified CFS subjects into three groups: No OI (symptoms < 2), Postural OI (only standing symptoms ≥ 2), and Persistent OI (recumbent and standing symptoms ≥ 2).

Conclusions:
Dizziness and Lightheadedness symptoms while recumbent are an underreported finding in CFS and should be measured when doing a clinical evaluation to diagnose orthostatic intolerance. POTS was found in 6 and START was found in 10 CFS subjects. Persistent OI had symptoms while recumbent and standing, highest symptom severity, and lability in symptoms after exercise.

Trial registration:  https://clinicaltrials.gov/ct2/show/NCT03567811

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Clinical symptoms & markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection

Posted on 06/14/2019 by wames

Clinical symptoms and markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection: an exploratory cross-sectional study, by Miriam Skjerven Kristiansen, Julie Stabursvik, Elise Catriona O’Leary, Maria Pedersen, Tarjei Tørre Asprusten, Truls Leegaard, Liv Toril Osnes, Trygve Tjade, Eva Skovlund, Kristin Godang, Vegard Bruun Bratholm Wyller in Brain, Behavior, and Immunity [Available online 27 April 2019] https://doi.org/10.1016/j.bbi.2019.04.040

Highlights

  • Post-infective fatigue is common, but disease mechanisms remain obscure.
  • Symptoms and disease markers were studied in post-EBV fatigue and non-fatigue cases.
  • Post-EBV fatigue has high symptom burden, but subtle alterations of disease markers.
  • Sympathetic predominance might explain increased CRP levels in post-EBV fatigue.

Research abstract:

Introduction:
Acute Epstein-Barr virus (EBV) infection is a trigger of chronic fatigue (CF) and Chronic Fatigue Syndrome (CFS). The aim of this cross-sectional study was to explore clinical symptoms as well as markers of disease mechanisms in fatigued and non-fatigued adolescents 6 months after EBV-infection, and in healthy controls.

Materials and methods:
A total of 200 adolescents (12–20 years old) with acute EBV infection were assessed 6 months after the initial infectious event and divided into fatigued (EBV CF+) and non-fatigued (EBV CF−) cases based on questionnaire score. The EBV CF+ cases were further sub-divided according to case definitions of CFS. In addition, a group of 70 healthy controls with similar distribution of sex and age was included. Symptoms were mapped with a questionnaire. Laboratory assays included EBV PCR and serology; detailed blood leukocyte phenotyping and serum high-sensitive C-reactive protein; and plasma and urine cortisol and catecholamines.

Assessment of autonomic activity was performed with continuous, non-invasive monitoring of cardiovascular variables during supine rest, controlled breathing and upright standing. Differences between EBV CF+ and EBV CF− were assessed by simple and multiple linear regression adjusting for sex as well as symptoms of depression and anxiety. A p-value ≤ 0.05 was considered statistically significant. This study is part of the CEBA-project (Chronic fatigue following acute Epstein-Barr virus infection in adolescents).

Results:
The EBV CF+ group had significantly higher scores for all clinical symptoms. All markers of infection and most immune, neuroendocrine and autonomic markers were similar across the EBV CF+ and EBV CF− group. However, the EBV CF+ group had slightly higher serum C-reactive protein (0.48 vs 0.43 mg/L, p = 0.031, high-sensitive assay), total T cell (CD3+) count (median 1573 vs 1481 × 106 cells/L, p = 0.012), plasma norepinephrine (1420 vs 1113 pmol/L, p = 0.01) and plasma epinephrine (363 vs 237 nmol/L, p = 0.032); lower low-frequency:high frequency (LF/HF) ratio of heart rate variability at supine rest (0.63 vs 0.76, p = 0.008); and an attenuated decline in LF/HF ratio during controlled breathing (−0.11 vs −0.25, p = 0.002).

Subgrouping according to different CFS diagnostic criteria did not significantly alter the results. Within the EBV CF+ group, there were no strong correlations between clinical symptoms and markers of disease mechanisms. In a multiple regression analysis, serum CRP levels were independently associated with serum cortisol (B = 4.5 × 10−4, p < 0.001), urine norepinephrine (B = 9.6 × 10−2, p = 0.044) and high-frequency power of heart rate variability (B = –3.7 × 10−2, p = 0.024).

Conclusions:
In adolescents, CF and CFS 6 months after acute EBV infection are associated with high symptom burden, but no signs of increased viral load and only subtle alterations of immune, autonomic, and neuroendocrine markers of which no one is strongly correlated with symptom scores. A slight sympathetic over parasympathetic predominance is evident in CF and might explain slightly increased CRP levels.

 

Michiel Tack offers suggestions for the findings of  subtle differences in immune, autonomic, and neuroendocrine markers between both groups: On the study of adolescents who do not recover from Epstein-Barr virus infection

Vegard Bruun Bratholm Wyller, one of the researchers responds to M Tack’s suggestions: Chronic fatigue is characterized by a relative lack of abnormalities in biological markers

 

 

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Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS

Posted on 06/13/2019 by wames

Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome, by Katarina Lien, Bjørn Johansen, Marit B Veierød, Annicke S Haslestad, Siv K Bøhn, Morten N Melsom, Kristin R Kardel, Per O Iversen in Physiological reports vol 7, issue 11, June 2019 [Published: 03 June 2019] https://doi.org/10.14814/phy2.14138

 

Research abstract:

Post‐exertional malaise and delayed recovery are hallmark symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Studies on repeated cardiopulmonary exercise testing (CPET) show that previous exercise negatively affects oxygen uptake (VO2) and power output (PO) in ME/CFS. Whether this affects arterial lactate concentrations ([Laa]) is unknown.

We studied 18 female patients (18–50 years) fulfilling the Canadian Consensus Criteria for ME/CFS and 15 healthy females (18–50 years) who underwent repeated CPETs 24 h apart (CPET1 and CPET2) with [Laa] measured every 30th second.

VO2 at peak exercise (VO2peak) was lower in patients than in controls on CPET1 (P < 0.001) and decreased in patients on CPET2 (P < 0.001). However, the difference in VO2peak between CPETs did not differ significantly between groups. [Laa] per PO was higher in patients during both CPETs (Pinteraction < 0.001), but increased in patients and decreased in controls from CPET1 to CPET2 (Pinteraction < 0.001).

Patients had lower VO2 (P = 0.02) and PO (P = 0.002) at the gas exchange threshold (GET, the point where CO2 production increases relative to VO2), but relative intensity (%VO2peak) and [Laa] at GET did not differ significantly from controls on CPET1. Patients had a reduction in VO2 (P = 0.02) and PO (P = 0.01) at GET on CPET2, but no significant differences in %VO2peak and [Laa] at GET between CPETs.

Controls had no significant differences in VO2, PO or %VO2peak at GET between CPETs, but [Laa] at GET was reduced on CPET2(P = 0.008).

In conclusion, previous exercise deteriorates physical performance and increases [Laa] during exercise in patients with ME/CFS while it lowers [Laa] in healthy subjects.

Funding Information: The Norwegian Extra Foundation and The Norwegian ME‐Association.

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PEM: It’s time to retire the term

Posted on 06/12/2019 by wames

PEM: It’s time to retire the term, by Pete Hanauer in The Solve ME/CFS Chronicle, Spring 2018

 

FOR MANY YEARS, people who suffered the pain and disruption to their lives caused by ME/CFS also suffered the indignity of being thought, even by many doctors, to have a mental disorder or worse yet, to be malingerers. Fortunately, the medical community is now nearly unanimous in realizing that ME/CFS is very much a physical disease, with very
severe consequences.

And yet, a remnant of the past remains in the terms still used to describe the primary symptom of the disease, namely the sheer exhaustion experienced by patients following even slight physical or mental exertion. The term, Post Exertional Malaise, or PEM, not only fails to accurately describe what happens to patients, but actually reinforces the
idea that they have a mental or psychological condition.

According to Merriam Webster, there are two definitions of the word “malaise”

  1. An indefinite feeling of debility or lack of health often indicative of or
    accompanying the onset of an illness
  2. A vague sense of mental or moral ill-being

The first definition describes a “feeling” accompanying the onset of a disease—not the effect of the disease. The second relates totally to a mental condition. Moreover, a list of synonyms for the word “malaise” includes “unhappiness, uneasiness, unease, discomfort, melancholy, depression, despondency, dejection, angst, ennui; lassitude, listlessness,
languor, weariness; indisposition, ailment, infirmity, illness, sickness, disease,” all but the last few of which are mental or psychological conditions.

In short, the term currently used to describe the principal symptom of ME/CFS strongly points to a mental or psychological illness rather than a physical one.

It is long past time to retire the term PEM and replace it with something that accurately reflects what happens to ME/CFS patients after physical or mental exertion and that respects their dignity. We suggest the term Post Exertional Disability, or PED. When patients must sit down or lie down after the slightest exertion, or are confined to bed or home, because they lack the energy to perform even routine tasks, they are, in
a very real sense, disabled.

A guest editorial by ME/CFS advocate Pete Hanauer. Mr Hanauer was a law book editor for 35 years, after which he joined the staff at Americans for Nonsmokers’ Rights, an organization he co-founded in 1976. He worked there for 16 years, analyzing thousands of tobacco control laws for a national database, until his chronic fatigue forced him to retire last summer. He lives in Berkeley, CA.

The Solve ME/CFS Initiative (SMCI) is a US charity that funds research, and lobbies for expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support.

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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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