2013 – Page 3 – American ME and CFS Society

Recovery of upper limb muscle function in chronic fatigue syndrome with and without fibromyalgia

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) patients frequently complain of muscle fatigue and abnormally slow recovery, especially of the upper limb muscles during and after activities of daily living. Furthermore, disease heterogeneity has not yet been studied in relation to recovery of muscle function in CFS. Here, we examine recovery of upper limb muscle function from a fatiguing exercise in CFS patients with (CFS+FM) and without (CFS-only) comorbid fibromyalgia and compare their results with a matched inactive control group.

DESIGN: In this case-control study, 18 CFS-only patients, 30 CFS+FM patients and 30 healthy inactive controls performed a fatiguing upper limb exercise test with subsequent recovery measures.

RESULTS: There was no significant difference among the three groups for maximal handgrip strength of the non-dominant hand. A significant worse recovery of upper limb muscle function was found in the CFS+FM, but not in de CFS-only group compared with the controls (P < 0·05).

CONCLUSIONS: This study reveals, for the first time, delayed recovery of upper limb muscle function in CFS+FM, but not in CFS-only patients. The results underline that CFS is a heterogeneous disorder suggesting that reducing the heterogeneity of the disorder in future research is important to make progress towards a better understanding and uncovering of mechanisms regarding the nature of divers impairments in these patients.

Source: Ickmans K, Meeus M, De Kooning M, Lambrecht L, Nijs J. Recovery of upper limb muscle function in chronic fatigue syndrome with and without fibromyalgia. Eur J Clin Invest. 2014 Feb;44(2):153-9. doi: 10.1111/eci.12201. Epub 2013 Dec 9. https://www.ncbi.nlm.nih.gov/pubmed/24313704

Conditions, controversies and contradictions between Central Sensitivity Syndrome and Depressive Disorders

Abstract:

We present a description of the Central Sensitivity Syndrome (CSS) and some of its main components such as Multiple Chemical Sensitivity Syndrome, Chronic Fatigue Syndrome and Fibromyalgia. We review the changes in pain perception, describing the physiology and pathophysiology of the painful experience from the medulla horn to the CNS. We explain the theory of central sensitization as the basis to the syndrome. We refer to the differences between fibromyalgia and depressive disorders, is spite of their frequent presentation in comorbidity.

We state the main clinical and neurobiological differences. We point out the main psychoneuroimmunoendocrinologic differences such as adrenal activity (hypoactivity vs. hyperactivity, DST hypersuppressive response vs. DST non suppression, hypersensitivity of central glucocorticoid receptors vs. desensitization of these, among others), thyroid (probable reverse T3 vs. flat stimuli TSH response curve) and growth hormone secretion (probable increase vs. disruption of normal circadian rhythm) that makes CSS resemble PTSD. We describe differential changes in sleep patterns (alpha-delta intrusion vs. altered sleep time, REM latency, and stage 3/4) and immunological disturbances almost opposite in each pathological entity. We finally argue which medical specialty should treat these complex syndromes.

Source: Maresca T, Covini E, Mato AM. Conditions, controversies and contradictions between Central Sensitivity Syndrome and Depressive Disorders.Vertex. 2013 Sep-Oct;24(111):373-91. [Article in Spanish] https://www.ncbi.nlm.nih.gov/pubmed/24312923

Epitopes of microbial and human heat shock protein 60 and their recognition in myalgic encephalomyelitis

Abstract:

Myalgic encephalomyelitis (ME, also called Chronic Fatigue Syndrome), a common disease with chronic fatigability, cognitive dysfunction and myalgia of unknown etiology, often starts with an infection. The chaperonin human heat shock protein 60 (HSP60) occurs in mitochondria and in bacteria, is highly conserved, antigenic and a major autoantigen.

The anti-HSP60 humoral (IgG and IgM) immune response was studied in 69 ME patients and 76 blood donors (BD) (the Training set) with recombinant human and E coli HSP60, and 136 30-mer overlapping and targeted peptides from HSP60 of humans, Chlamydia, Mycoplasma and 26 other species in a multiplex suspension array. Peptides from HSP60 helix I had a chaperonin-like activity, but these and other HSP60 peptides also bound IgG and IgM with an ME preference, theoretically indicating a competition between HSP60 function and antibody binding. A HSP60-based panel of 25 antigens was selected.

When evaluated with 61 other ME and 399 non-ME samples (331 BD, 20 Multiple Sclerosis and 48 Systemic Lupus Erythematosus patients), a peptide from Chlamydia pneumoniae HSP60 detected IgM in 15 of 61 (24%) of ME, and in 1 of 399 non-ME at a high cutoff (p<0.0001). IgM to specific cross-reactive epitopes of human and microbial HSP60 occurs in a subset of ME, compatible with infection-induced autoimmunity.

Source: Elfaitouri A, Herrmann B, Bölin-Wiener A, Wang Y, Gottfries CG, Zachrisson O, Pipkorn R, Rönnblom L, Blomberg J. Epitopes of microbial and human heat shock protein 60 and their recognition in myalgic encephalomyelitis. PLoS One. 2013 Nov 28;8(11):e81155. doi: 10.1371/journal.pone.0081155. ECollection 2013. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3842916/ (Full article)

The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study)

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is relatively common in children with limited evidence for treatment. The Phil Parker Lightning Process (LP) is a trademarked intervention, which >250 children use annually. There are no reported studies investigating the effectiveness or possible side effects of LP.

METHODS: The trial population was drawn from the Bath and Bristol NHS specialist paediatric CFS or ME service. The study was designed as a pilot randomized trial with children (aged 12 to 18 years) comparing specialist medical care with specialist medical care plus the Lightning Process. Integrated qualitative methodology was used to explore the feasibility and acceptability of the recruitment, randomization and interventions.

RESULTS: A total of 56 children were recruited from 156 eligible children (1 October 2010 to 16 June 2012). Recruitment, randomization and both interventions were feasible and acceptable. Participants suggested changes to improve feasibility and acceptability and we incorporated the following in the trial protocol: stopped collecting 6-week outcomes; introduced a second reminder letter; used phone calls to collect primary outcomes from nonresponders; informed participants about different approaches of each intervention and changed our recommendation for the primary outcome for the full study from school attendance to disability (SF-36 physical function subscale) and fatigue (Chalder Fatigue Scale).

CONCLUSIONS:Conducting randomized controlled trials (RCTs) to investigate an alternative treatment such as LP is feasible and acceptable for children with CFS or ME. Feasibility studies that incorporate qualitative methodology enable changes to be made to trial protocols to improve acceptability to participants. This is likely to improve recruitment rate and trial retention.

TRIAL REGISTRATION: Feasibility study first randomization: 29 September 2010. Trial registration: Current Controlled Trials ISRCTN81456207 (31 July 2012). Full trial first randomization: 19 September 2012.

Source: Crawley E, Mills N, Beasant L, Johnson D, Collin SM, Deans Z, White K, Montgomery A. The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study). Trials. 2013 Dec 5;14:415. doi: 10.1186/1745-6215-14-415. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235039/ (Full article)

News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos - a novel approach to educating medical students about CFS

The Centers for Disease Control and Prevention (CDC), Division of High-Consequence Pathogens and Pathology, Chronic Viral Diseases Branch houses CDC’s chronic fatigue syndrome (CFS) research and education program. The program’s provider education and outreach initiative has conducted research and implemented activities to educate healthcare professionals about CFS diagnosis and management, including evaluating knowledge, attitudes, and beliefs among US providers [1], assessing best methods for CFS continuing medical education (CME) [2], and developing a train-the-trainer program [3]. In 2012, meetings with stakeholders and evaluations of existing outreach efforts informed the program’s decision to target medical students and residents as a way to influence CFS education at the beginning of the medical education process. This report describes the background and process for developing a CFS education curriculum using standardized patients and plans to disseminate the curriculum using MedEd Portal.

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/

Source: Brimmer DJ, Campbell C, Bonner K, Lin JM. News from the CDC: chronic fatigue syndrome (CFS) and standardized patient videos - a novel approach to educating medical students about CFS. Transl Behav Med. 2013 Dec;3(4):338-9. doi: 10.1007/s13142-013-0229-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830016/ (Full article)

Natural killer cells in patients with severe chronic fatigue syndrome

Abstract:

Maintenance of health and physiological homeostasis is a synergistic process involving tight regulation of proteins, transcription factors and other molecular processes. The immune system consists of innate and adaptive immune cells that are required to sustain immunity. The presence of pathogens and tumour cells activates innate immune cells, in particular Natural Killer (NK) cells.

Stochastic expression of NK receptors activates either inhibitory or activating signals and results in cytokine production and activation of pathways that result in apoptosis of target cells. Thus, NK cells are a necessary component of the immunological process and aberrations in their functional processes, including equivocal levels of NK cells and cytotoxic activity pre-empts recurrent viral infections, autoimmune diseases and altered inflammatory responses. NK cells are implicated in a number of diseases including chronic fatigue syndrome (CFS). The purpose of this review is to highlight the different profiles of NK cells reported in CFS patients and to determine the extent of NK immune dysfunction in subtypes of CFS patients based on severity in symptoms.

Source: Brenu EW, Hardcastle SL, Atkinson GM, van Driel ML, Kreijkamp-Kaspers S, Ashton KJ, Staines DR, Marshall-Gradisnik SM. Natural killer cells in patients with severe chronic fatigue syndrome. Auto Immun Highlights. 2013 Apr 16;4(3):69-80. doi: 10.1007/s13317-013-0051-x. ECollection 2013. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389023/ (Full article)

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Symptom Severity: Stress Management Skills are Related to Lower Illness Burden

Abstract:

BACKGROUND: The onset of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) typically involves reductions in activities of daily living and social interactions (jointly referred to as “illness burden”). Emotional distress has been linked to increased reported symptoms, and stress management skills have been related to lower fatigue severity in CFS patients. Symptom severity and illness burden are highly correlated. The ability to manage stress may attenuate this relationship, allowing individuals to feel less burdened by the illness independent of the severity of their symptoms.

PURPOSE: This study aimed to evaluate if perceived stress management skills affect illness burden via emotional distress, independent of ME/CFS symptom severity.

METHODS: A total of 117 adults with ME/CFS completed measures of perceived stress management skills, emotional distress, ME/CFS symptom severity and illness burden.

RESULTS: Regression analyses revealed that greater perceived stress management skills related to less social and fatigue-related illness burden, via lower emotional distress. This relationship existed independent of the association of symptom severity on illness burden, and was stronger among those not currently employed.

CONCLUSIONS: Ability to manage stress is associated with a lower illness burden for individuals with ME/CFS. Future studies should evaluate the efficacy of psychosocial interventions in lowering illness burden by targeting stress management skills.

Source: Lattie EG, Antoni MH, Fletcher MA, Czaja S, Perdomo D, Sala A, Nair S, Fu SH, Penedo FJ, Klimas N. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Symptom Severity: Stress Management Skills are Related to Lower Illness Burden. Fatigue. 2013;1(4). doi: 10.1080/21641846.2013.843255. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837381/ (Full article)

A metagenomic approach to investigate the microbial causes of myalgic encephalomyelitis/chronic fatigue syndrome: moving beyond XMRV

Three years ago, a novel association between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the murine retrovirus XMRV was published.[1] Since then, 191 papers have been published on the subject (NCBI PubMed, accessed 6 November 2012), largely disproving the initial association, a trend confirmed by a recent multicentre blinded trial which definitively concluded that there is no association between ME/CFS and XMRV.[2] It is therefore time to revisit the investigation of ME/CFS aetiology. Metagenomics offers a promising new opportunity for hypothesis discovery in microbial associations with ME/CFS, and we describe herein the technical basis of this approach and its advantages in aetiological agent investigation.

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3835061/

Source: Miller RR, Gardy JL, Tang P, Patrick DM. A metagenomic approach to investigate the microbial causes of myalgic encephalomyelitis/chronic fatigue syndrome: moving beyond XMRV. Fatigue. 2013 Oct;1(4):185-189. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3835061/ (Full article)

Treatment of 741 Italian patients with chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic Fatigue Syndrome (CFS) is a distinctive syndrome characterized by specific symptoms cluster. CFS mostly affects women and often results in severe functional limitation. Its prevalence varies from 0.4 to 2.5% in the general population. In our prior studies on the clinical features of 205 CFS patients we founded immunological and brain abnormalities. In this paper we illustrate our caseload on CFS treatment.

PATIENTS AND METHODS: From January 2000 to December 2005, we evaluated all the patients admitted at the CFS Unit of the Aviano National Cancer Institute, for staging procedures and treatments. Patients not meeting the Fukuda diagnostic criteria were excluded.

RESULTS: 250 male and 491 female (median age 35.5 and 39.3 years, respectively) were enrolled and treated for CFS. As expected, CFS resulted from previous infectious disease in all patients. Female patients showed to be more affected by symptoms than male patients. The treatment schedules followed by the patients included nutritional supplements alone, corticosteroids, antidepressant/sedative drugs, and antiviral/immunoglobulin drugs. Antiviral/ immunoglobulin drugs achieved the best response (15.3% positive responses vs. 8.3% negative responses; OR 0.44, CI 0.26-0.74, p = 0.002). The carrying out of 4 or more treatments showed a protective effect (OR 0.46, CI 0.28-0.77, p = 0.003). This finding was confirmed in the multivariate analysis, adjusted by type of drugs (OR 0.49, CI 0.28-0.84, p = 0.009) and number of treatments carried out (OR 0.51, CI 0.30-0.86, p = 0.01); these two variables were independent.

CONCLUSIONS: These findings show that the antiviral/immunoglobulin approach has a longer positive disease free survival in comparison with other approaches. However, CFS still remains a difficult disease to be effectively treated.

Source: Tirelli U, Lleshi A, Berretta M, Spina M, Talamini R, Giacalone A. Treatment of 741 Italian patients with chronic fatigue syndrome. Eur Rev Med Pharmacol Sci. 2013 Nov;17(21):2847-52. http://www.europeanreview.org/article/5782 (Full article available as PDF)

Paediatric chronic fatigue syndrome: complex presentations and protracted time to diagnosis

Abstract:

AIM: The diagnosis and management of paediatric chronic fatigue syndrome (CFS) remain ongoing challenges for paediatric clinicians, particularly given its unknown aetiology and the little research on effective treatments for this condition. The aim of this study was to describe the presenting features of new patients attending a specialist chronic fatigue clinic at a tertiary-level Australian children’s hospital.

METHOD: The medical records of all patients with an initial consultation at the chronic fatigue clinic over a 12-month period were reviewed using a standardised data collection template. Functional impact was based on school attendance and classified according to the National Institute of Health and Clinical Excellence guidelines (2007).

RESULTS: A total of 99 patients attending the clinic were identified. Of these, 59 were diagnosed with CFS. Median age was 15.4 years with almost two-thirds of patients of female sex. Median time between symptom onset and diagnosis was 15.5 months. There was a high occurrence of fatigue, sleep disturbance, pain, postexertional malaise, and autonomic and cognitive symptoms in the group. The functional impact of CFS was classified as mild for 20%, moderate for 66% and severe for 14% of patients.

CONCLUSIONS: Most young people diagnosed with CFS experience symptoms for a protracted period, with considerable functional impact prior to initial tertiary service consultation. This audit has identified important areas for research, practice development and education in relation to the management of patients with CFS.

Source: Knight S, Harvey A, Lubitz L, Rowe K, Reveley C, Veit F, Hennel S, Scheinberg A. Paediatric chronic fatigue syndrome: complex presentations and protracted time to diagnosis. J Paediatr Child Health. 2013 Nov;49(11):919-24. doi: 10.1111/jpc.12425. Epub 2013 Oct 31. https://www.ncbi.nlm.nih.gov/pubmed/24251657