Alternative medical interventions used in the treatment and management of myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia

Abstract:

BACKGROUND: There have been several systematic reviews attempting to evaluate the efficacy of possible treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). However, information regarding the efficacy of complementary and alternative medicine (CAM) has not been comprehensively or systematically covered in these reviews, despite its frequent use in the patient community.

PURPOSE: The purpose of this study was to systematically review and evaluate the current literature related to alternative and complementary treatments for ME/CFS and FM. It should be stressed that the treatments evaluated in this review do not reflect the clinical approach used by most practitioners to treat these illnesses, which include a mix of natural and unconventionally used medications and natural hormones tailored to each individual case. However, nearly all clinical research has focused on the utility of single CAM interventions, and thus is the primary focus of this review.

METHODS: Several databases (e.g., PubMed, MEDLINE,((R)) PsychInfo) were systematically searched for randomized and nonrandomized controlled trials of alternative treatments and nonpharmacological supplements. Included studies were checked for references and several experts were contacted for referred articles. Two leading subspecialty journals were also searched by hand. Data were then extracted from included studies and quality assessments were conducted using the Jadad scale.

RESULTS: Upon completion of the literature search and the exclusion of studies not meeting criterion, a total of 70 controlled clinical trials were included in the review. Sixty (60) of the 70 studies found at least one positive effect of the intervention (86%), and 52 studies also found improvement in an illness-specific symptom (74%). The methodological quality of reporting was generally poor.

CONCLUSIONS: Several types of alternative medicine have some potential for future clinical research. However, due to methodological inconsistencies across studies and the small body of evidence, no firm conclusions can be made at this time. Regarding alternative treatments, acupuncture and several types of meditative practice show the most promise for future scientific investigation. Likewise, magnesium, l-carnitine, and S-adenosylmethionine are nonpharmacological supplements with the most potential for further research. Individualized treatment plans that involve several pharmacological agents and natural remedies appear promising as well.

 

Source: Porter NS, Jason LA, Boulton A, Bothne N, Coleman B. Alternative medical interventions used in the treatment and management of myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia. J Altern Complement Med. 2010 Mar;16(3):235-49. doi: 10.1089/acm.2008.0376. https://www.ncbi.nlm.nih.gov/pubmed/20192908

 

Chronic fatigue syndrome, fibromyalgia, and related illnesses: a clinical model of assessment and intervention

Abstract:

A clinically informative behavioral literature on chronic fatigue syndrome (CFS) and fibromyalgia (FM) has emerged over the past decade. The purpose of this article is to (a) define these conditions and their less severe counterparts, i.e., unexplained chronic fatigue (UCF) and chronic widespread pain; (b) briefly review the behavioral theory and intervention literature on CFS and FM; and (c) describe a user-friendly clinical model of assessment and intervention for these illnesses. The assessments described will facilitate understanding of the somewhat unusual and puzzling somatic presentations that characterize these patients. Using an individualized cognitive-behavioral approach the mental health clinician can offer significant help to these often stigmatized and medically underserved patients.

(c) 2010 Wiley Periodicals, Inc.

 

Source: Friedberg F. Chronic fatigue syndrome, fibromyalgia, and related illnesses: a clinical model of assessment and intervention. J Clin Psychol. 2010 Jun;66(6):641-65. doi: 10.1002/jclp.20676. https://www.ncbi.nlm.nih.gov/pubmed/20186721

 

Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

Fatigue is one of the most common reasons why people consult health care providers. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is one cause of clinically debilitating fatigue. The underdiagnosis of CFS/ME, along with the spectrum of symptoms that represent multiple reasons for entry into physical therapy settings, places physical therapists in a unique position to identify this health condition and direct its appropriate management. The diagnosis and clinical correlates of CFS/ME are becoming better understood, although the optimal clinical management of this condition remains controversial.

The 4 aims of this perspective article are: (1) to summarize the diagnosis of CFS/ME with the goal of promoting the optimal recognition of this condition by physical therapists; (2) to discuss aerobic system and cognitive deficits that may lead to the clinical presentation of CFS/ME; (3) to review the evidence for graded exercise with the goal of addressing limitations in body structures and functions, activity, and participation in people with CFS/ME; and (4) to present a conceptual model for the clinical management of CFS/ME by physical therapists.

 

Source: Davenport TE, Stevens SR, VanNess MJ, Snell CR, Little T. Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis. Phys Ther. 2010 Apr;90(4):602-14. doi: 10.2522/ptj.20090047. Epub 2010 Feb 25. http://ptjournal.apta.org/content/90/4/602.long (Full article)

 

Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort

Abstract:

OBJECTIVE: The presence of the retrovirus xenotropic murine leukaemia virus-related virus (XMRV) has been reported in peripheral blood mononuclear cells of patients with chronic fatigue syndrome. Considering the potentially great medical and social relevance of such a discovery, we investigated whether this finding could be confirmed in an independent European cohort of patients with chronic fatigue syndrome.

DESIGN: Analysis of a well defined cohort of patients and matched neighbourhood controls by polymerase chain reaction.

SETTING: Certified (ISO 15189) laboratory of clinical virology in a university hospital in the Netherlands. Population Between December 1991 and April 1992, peripheral blood mononuclear cells were isolated from 76 patients and 69 matched neighbourhood controls. In this study we tested cells from 32 patients and 43 controls from whom original cryopreserved phials were still available.

MAIN OUTCOME MEASURES: Detection of XMRV in peripheral blood mononuclear cells by real time polymerase chain reaction assay targeting the XMRV integrase gene and/or a nested polymerase chain reaction assay targeting the XMRV gag gene.

RESULTS: We detected no XMRV sequences in any of the patients or controls in either of the assays, in which relevant positive and negative isolation controls and polymerase chain reaction controls were included. Spiking experiments showed that we were able to detect at least 10 copies of XMRV sequences per 10(5) peripheral blood mononuclear cells by real time as well as by nested polymerase chain reaction, demonstrating high sensitivity of both assays.

CONCLUSIONS: This study failed to show the presence of XMRV in peripheral blood mononuclear cells of patients with chronic fatigue syndrome from a Dutch cohort. These data cast doubt on the claim that XMRV is associated with chronic fatigue syndrome in the majority of patients.

Comment in: Chronic fatigue syndrome and human retrovirus XMRV. [BMJ. 2010]

 

Source: van Kuppeveld FJ, de Jong AS, Lanke KH, Verhaegh GW, Melchers WJ, Swanink CM, Bleijenberg G, Netea MG, Galama JM, van der Meer JW. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. BMJ. 2010 Feb 25;340:c1018. doi: 10.1136/bmj.c1018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2829122/ (Full article)

 

Classification of myalgic encephalomyelitis/chronic fatigue syndrome by types of fatigue

Abstract:

Persons with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often complain of fatigue states (eg, postexertional malaise, brain fog) that are qualitatively different than normal, daily fatigue. Given the heterogeneous nature of ME/CFS, it is likely that individuals with this illness experience these fatigue types differently in terms of severity and frequency. It is also possible that meaningful subgroups of patients exist that exhibit different patterns of the fatigue experience. The purpose of this study was to investigate whether individuals with ME/CFS can be classified in a meaningful way according to the different types of fatigue they experience.

One hundred individuals with ME/CFS participated in the study. Individuals that met inclusion criteria were administered the Multiple Fatigue Types Questionnaire (MFTQ), a 5-factor instrument that distinguishes between different types of fatigue. A cluster analysis was used to classify patients into various clusters based on factor subscale scores. Using a 3-factor solution, individuals were classified according to illness severity (low, moderate, severe) across the different fatigue factors.

However, a 5-cluster solution enabled participants with moderate to severe fatigue levels to fall into more differentiated clusters and demonstrate distinct fatigue state patterns. These results suggest that fatigue patterns of individuals with ME/CFS are heterogeneous, and that patients may be classified into meaningful subgroups.

 

Source: Jason LA, Boulton A, Porter NS, Jessen T, Njoku MG, Friedberg F. Classification of myalgic encephalomyelitis/chronic fatigue syndrome by types of fatigue. Behav Med. 2010 Jan-Mar;36(1):24-31. Doi: 10.1080/08964280903521370. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852700/ (Full article)

 

Cytokines across the night in chronic fatigue syndrome with and without fibromyalgia

Abstract:

The symptoms of chronic fatigue syndrome (CFS) are consistent with cytokine dysregulation. This has led to the hypothesis of immune dysregulation as the cause of this illness. To further test this hypothesis, we did repeated blood sampling for cytokines while patients and matched healthy controls slept in the sleep lab.

Because no one method for assaying cytokines is acknowledged to be better than another, we assayed for protein in serum, message in peripheral blood lymphocytes (PBLs), and function in resting and stimulated PBLs.

We found no evidence of proinflammatory cytokine upregulation. Instead, in line with some of our earlier studies, we did find some evidence to support a role for an increase in interleukin-10, an anti-inflammatory cytokine. Although the changes were small, they may contribute to the common complaint in CFS patients of disrupted sleep.

 

Source: Nakamura T, Schwander SK, Donnelly R, Ortega F, Togo F, Broderick G, Yamamoto Y, Cherniack NS, Rapoport D, Natelson BH. Cytokines across the night in chronic fatigue syndrome with and without fibromyalgia. Clin Vaccine Immunol. 2010 Apr;17(4):582-7. doi: 10.1128/CVI.00379-09. Epub 2010 Feb 24. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2849324/ (Full article)

 

A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome

Abstract:

The aim of this study is to provide a qualitative perspective of adolescents’ experiences of Chronic Fatigue Syndrome (CFS). Five adolescents who were considered to have recovered from CFS participated in semistructured interviews regarding their experience. The transcripts were then analysed using interpretative phenomenological analysis.

Five main themes were identified to represent common shared experiences across participants.These related to seeking understanding around the illness, experiences of loss, perceived influences on the illness, difficult emotional experiences, and adolescents’ status post recovery.

While significant efforts are being made to increase knowledge and understanding of CFS within the child and adolescent population there is still much to be learned, as is evident from this direct account of adolescents’ experiences. We identify implications for clinical practice and suggestions for future research in light of listening to the adolescents’ stories.

 

Source: Jelbert R, Stedmon J, Stephens A. A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome. Clin Child Psychol Psychiatry. 2010 Apr;15(2):267-83. doi: 10.1177/1359104509340940. Epub 2010 Feb 23. https://www.ncbi.nlm.nih.gov/pubmed/20179018

 

Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study

Abstract:

BACKGROUND: NICE guidelines emphasise the role of the primary care team in the management of patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME). A key stage in effective management is making an accurate early diagnosis, supported by appropriate referral.

METHODS: A nested qualitative study within a multi-centre randomised controlled trial which aimed to explore GPs’ views on their role in making the diagnosis of CFS/ME and subsequent management of patients in primary care. Semi-structured interviews with 22 GPs. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

RESULTS: GPs described difficulties in defining CFS/ME and suggested that their role in making a diagnosis was to exclude physical causes for the patient’s symptoms, but they reported little confidence in positively attributing the label of CFS/ME to a patient and their symptoms. GPs suggested that the label of CFS/ME could be potentially harmful for the patient. The role of referral to secondary care was debated and GPs struggled defining their own role in management of this group of patients.

CONCLUSIONS: Until GPs feel comfortable making the diagnosis of CFS/ME and facilitating initial management, and have appropriate services to refer patients to, there will continue to be delays in confirming the diagnosis and patients presenting in primary care with fatigue may not receive appropriate care.

TRIAL REGISTRATION: ISRCTN 74156610.

 

Source: Chew-Graham C, Dowrick C, Wearden A, Richardson V, Peters S. Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study. BMC Fam Pract. 2010 Feb 23;11:16. doi: 10.1186/1471-2296-11-16. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2836312/ (Full article)

 

Adolescent offspring of mothers with chronic fatigue syndrome

Abstract:

PURPOSE: The goal of this study was to determine whether adolescent offspring of mothers with chronic fatigue syndrome(CFS) have higher prevalence of CFS and report more fatigue, greater pain sensitivity, more sleep problems, and poorer cardiopulmonary fitness in comparison with offspring with no exposure to maternal CFS.

METHODS: A total of 26 adolescent offspring of 20 mothers diagnosed with CFS were compared with 45 adolescent offspring of 30 age-matched healthy control mothers. Study measures included structured interviews and medical and laboratory examinations for CFS; tender point examination; maximum oxygen uptake and perceived exertion; dolorimetry pain ratings; and questionnaires on fatigue severity and sleepiness.

RESULTS: In comparison with offspring of healthy mothers, those exposed to mothers with CFS reported higher prevalence of fatigue of at least 1-month duration (23% vs. 4%), fatigue of 6 months or longer (15% vs. 2%), and met criteria for CFS (12% vs. 2%), although these differences only approached statistical significance. CFS and healthy mothers differed on almost all study outcomes, but offspring groups did not differ on measures of current fatigue severity, pain sensitivity, sleep, mean number of tender points, and cardiopulmonary fitness.

CONCLUSIONS: The higher prevalence of fatiguing states in offspring of CFS mothers, despite the lack of statistical significance, suggests that familial factors may potentially play a role in developing chronically fatiguing states. Alternately, perturbations in pain sensitivity and cardiopulmonary fitness may be consequences of CFS. Future studies should focus on examining the impact of maternal CFS and associated disability on psychosocial functioning of offspring.

 

Source: Smith MS, Buchwald DS, Bogart A, Goldberg J, Smith WR, Afari N. Adolescent offspring of mothers with chronic fatigue syndrome. J Adolesc Health. 2010 Mar;46(3):284-91. doi: 10.1016/j.jadohealth.2009.08.001. Epub 2009 Oct 13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824612/ (Full article)

 

Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome

Abstract:

BACKGROUND: Detection of a retrovirus, xenotropic murine leukaemia virus-related virus (XMRV), has recently been reported in 67% of patients with chronic fatigue syndrome. We have studied a total of 170 samples from chronic fatigue syndromepatients from two UK cohorts and 395 controls for evidence of XMRV infection by looking either for the presence of viral nucleic acids using quantitative PCR (limit of detection <16 viral copies) or for the presence of serological responses using a virus neutralisation assay.

RESULTS: We have not identified XMRV DNA in any samples by PCR (0/299). Some serum samples showed XMRV neutralising activity (26/565) but only one of these positive sera came from a CFS patient. Most of the positive sera were also able to neutralise MLV particles pseudotyped with envelope proteins from other viruses, including vesicular stomatitis virus, indicating significant cross-reactivity in serological responses. Four positive samples were specific for XMRV.

CONCLUSIONS: No association between XMRV infection and CFS was observed in the samples tested, either by PCR or serological methodologies. The non-specific neutralisation observed in multiple serum samples suggests that it is unlikely that these responses were elicited by XMRV and highlights the danger of over-estimating XMRV frequency based on serological assays. In spite of this, we believe that the detection of neutralising activity that did not inhibit VSV-G pseudotyped MLV in at least four human serum samples indicates that XMRV infection may occur in the general population, although with currently uncertain outcomes.

 

Source: Groom HC, Boucherit VC, Makinson K, Randal E, Baptista S, Hagan S, Gow JW, Mattes FM, Breuer J, Kerr JR, Stoye JP, Bishop KN. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology. 2010 Feb 15;7:10. doi: 10.1186/1742-4690-7-10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2839973/ (Full article)