Withdrawn – Traditional Chinese medicinal herbs for the treatment of idiopathic chronic fatigue and chronic fatigue syndrome

Posted on 10/19/2018 by wames

Traditional Chinese medicinal herbs for the treatment of idiopathic chronic fatigue and chronic fatigue syndrome – This review has been withdrawn from the Cochrane Database of Systematic Reviews

Cochrane Systematic Review – Intervention Version published: 15 October 2018

Reason for withdrawal from publication

Supporting better health for those receiving care is central to Cochrane’s mission to promote evidence‐informed health decision‐making by producing high quality, relevant, accessible systematic reviews and other synthesized research evidence.

The Cochrane Common Mental Disorders Group is currently undertaking a strategic portfolio assessment of all existing and planned reviews and protocols, including those relating to Chronic Fatigue Syndrome (CFS).

During the course of our portfolio assessment, we are aiming to ensure that the most up to date evidence is available in the Cochrane Library to inform decision‐making. This latest version of the review was published in 2009. The Cochrane Common Mental Disorders Group are therefore temporarily withdrawing this review, with the full support of the author team, to allow time to determine whether the evidence is up‐to‐date.

The editorial group responsible for this previously published document have withdrawn it from publication.

More about the publication

 

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Final ME/CFS NICE guideline scope published, Oct 2018

Posted on 10/18/2018 by wames

Communication RE: NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020)

The final scope and equality impact assessment for this NICE guideline have now been published [Oct 16th], along with all the stakeholder comments that were received during consultation and our responses to these comments: documents

We would like to thank you for your continued involvement and interest in this guideline. The comments received during the consultation period helped us to develop and refine the scope.

Your organisation [WAMES] has been identified as a key stakeholder for this topic; we will contact you again when the draft guideline is released for consultation and ask that you please prioritise sending us your comments.

Provisional Schedule

Draft guidance consultation    21 April 2020 – 02 June 2020
Expected publication                14 October 2020

Committee members [more appointments to come]

Chair

  • Peter Barry Consultant Paediatric Intensivist, University Hospitals of Leicester

Vice Chair

  • Ilora Finlay Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales,Velindre NHS Trust, Cardiff

Core members / Members

  • Secondary care paediatrician: Theo Anbu (Alder Hey, Liverpool)
  • Physician with an interest in ME/CFS:   Mike Beadsworth (Consultant
    Infectious Diseases, Liverpool)
  • Physiotherapist:   Joanne Bond-Kendall, Bath (MAGENTA & FITNET researcher)
  • Social worker:   Tony Crouch (Social work advisor – works with 25% Group & TYMES Trust)
  • Psychologist:    Jo Daniels, Bath   (Interests: CBT, anxiety disorders)
  • GP:               Luis Nacul (leads the CureMEteam and the UK ME/CFS Biobank)
  • Occupational therapist: Susan Watson, (Leeds & West Yorkshire CFS/ME Service)
  • Community paediatrician:
  • Dietician:
  • Epidemiologist:
  • Nurse with specialist interest in ME/CFS:
  • Community children’s nurse:
  • Lay member:  Saran Bonser
  • Lay member:  Sally Burch (http://sallyjustme.blogspot.com)
  • Lay member:  Nicola Kidby
  • Lay member:  Adam Lowe  (#MEAction)
  • Lay member:  Dorinda Jack
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Chronic Fatigue Syndrome: from chronic fatigue to more specific syndromes

Posted on 10/17/2018 by wames

Chronic Fatigue Syndrome: from Chronic Fatigue to More Specific Syndromes, by S Blitshteyn, P Chopra in Eur Neurol 2018; 80:73–77

 

Research Article:

In the last decade, a group of chronic disorders associated with fatigue (CDAF) emerged as the leading cause of chronic fatigue, chronic pain, and functional impairment, all of which have been often labeled in clinical practice as chronic fatigue syndrome (CFS) or fibromyalgia.

While these chronic disorders arise from various pathophysiologic mechanisms, a shared autoimmune or immune-mediated etiology could shift the focus from symptomatic treatment of fatigue and pain to targeted immunomodulatory and biological therapy.

A clinical paradigm shift is necessary to reevaluate CFS and fibromyalgia diagnoses and its relationship to the CDAF entities, which would ultimately lead to a change in diagnostic and therapeutic algorithm for patients with chronic fatigue and chronic pain. Rather than uniformly apply the diagnoses of CFS or fibromyalgia to any patient presenting with unexplained chronic fatigue or chronic pain, it may be more beneficial and therapeutically effective to stratify these patients into more specific diagnoses in the CDAF group.

Read full article

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Immunosignature analysis of ME/CFS – promising diagnostic biomarker

Posted on 10/15/2018 by wames

Immunosignature Analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Oliver P Günther, Jennifer L Gardy, Phillip Stafford, Øystein Fluge, Olav Mella, Patrick Tang, Ruth R Miller, Shoshana M Parker, Stephen A Johnston, David M Patrick in Molecular Neurobiology (2018) pp 1-9 [Published online: 8 October 2018]

Research abstract:

A random-sequence peptide microarray can interrogate serum antibodies in a broad, unbiased fashion to generate disease-specific immunosignatures. This approach has been applied to cancer detection, diagnosis of infections, and interrogation of vaccine response.

We hypothesized that there is an immunosignature specific to ME/CFS and that this could aid in the diagnosis. We studied two subject groups meeting the Canadian Consensus Definition of ME/CFS. ME/CFS (n = 25) and matched control (n = 25) sera were obtained from a Canadian study.

ME/CFS (n = 25) sera were obtained from phase 1/2 Norwegian trials (NCT01156909). Sera from six healthy controls from the USA were included in the analysis. Canadian cases and controls were tested for a disease immunosignature.

By combining results from unsupervised and supervised analyses, a candidate immunosignature with 654 peptides was able to differentiate ME/CFS from controls. The immunosignature was tested and further refined using the Norwegian and USA samples. This resulted in a 256-peptide immunosignature with the ability to separate ME/CFS cases from controls in the international data sets.

We were able to identify a 256-peptide signature that separates ME/CFS samples from healthy controls, suggesting that the hit-and-run hypothesis of immune dysfunction merits further investigation. By extending testing of both our signature and one previously reported in the literature to larger cohorts, and further interrogating the specific peptides we and others have identified, we may deepen our understanding of the origins of ME/CFS and work towards a clinically meaningful diagnostic biomarker.

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GET for ME/CFS is not effective & unsafe – re-analysis of a Cochrane review

Posted on 10/10/2018 by wames

Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review, by Mark Vink & Alexandra Vink-Niese in Health Psychology Open, Vol 5, issue: 2 [First Published October 8, 2018]

 

Review article abstract:

The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective.

Because of the failure to report harms adequately in the trials covered by the review, it cannot be said that graded exercise therapy is safe.

The analysis of the objective outcomes in the trials provides sufficient evidence to conclude that graded exercise therapy is an ineffective treatment for myalgic encephalomyelitis/chronic fatigue syndrome.

Article Conclusion:

The GET trials reviewed here are inherently biased: use of exercise may attract only the mildly affected and may deter the more disabled patients from participating. These trials go back for more than two decades, at the cost of considerable money and involving large numbers of patients. The flaws in the review and the trials, as discussed above, all created a bias in favour of the exercise intervention. Despite these flaws, they have found no significant evidence of objective improvement. The analysis of the objective outcomes in the trials provides sufficient evidence to conclude GET is an ineffective treatment for ME/CFS.

Most studies failed to report on safety or adverse reactions, and White et al. (2011), one of the two studies that did, used an unrealistic definition. ME is characterised by an abnormally delayed muscle recovery after trivial exertion (Ramsay, 1988), commonly referred to as PEM. Exercise physiology studies reveal abnormalities in patients’ responses to exertion.

Yet PEM is not a requirement for diagnosis according to the Oxford criteria, used by five of the studies, and only an optional criterion according to the Fukuda criteria, used by the other three studies in the review. If patients do not suffer from PEM, it is likely that they will have no problems exercising. This might be an important reason why outside of clinical trials things are different with many patients, who do suffer from PEM, reporting deterioration with GET. Given these considerations, one cannot conclude that GET is safe.

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School nurses can improve the lives of students with ME/CFS

Posted on 10/05/2018 by wames

School nurses can improve the lives of students with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Kenneth J. Friedman, Beth Mattey, Faith Newton in NASN School Nurse  [First Published September 15, 2018]

Article abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that is defined and diagnosed by its symptoms: extreme fatigue made worse by physical and mental activity, pain and decreased mental stamina, among others.

A long-held, erroneous belief that ME/CFS is not a physiological illness has persisted among some clinicians, leading to the denial of a patient’s physical illness and attributing the symptoms to other causes.

The debilitating effects of ME/CFS in the pediatric population can affect all aspects of academic, social, emotional, and physical development. ME/CFS has been diagnosed in children younger than 10 years. Therefore, the school nurse is likely to encounter one or more students in the various stages of this disease, putting the school nurse in a position to ameliorate the impact of this potentially devastating chronic condition.

Read full article              Excerpt:

Role of the School Nurse
The role of the school nurse in assisting a student with ME/CFS falls into three main categories:

(1) being informed about the disease,

(2) recognizing the signs and symptoms of the disease in the student, and educating school staff and families about the disease and its impact, and

(3) advocating for accommodations and modifications in the school setting, and assisting the student in managing what is most likely to be a modified educational program on his or her return to school (Centers for Disease Control and Prevention [CDC], 2017b).

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Chronic viral infections in ME/CFS

Posted on 10/04/2018 by wames

Chronic viral infections in myalgic encephalomyelitis/ chronic fatigue syndrome  (ME/CFS), by Santa Rasa, Zaiga Nora-Krukle, Nina Henning, Eva Eliassen, Evelina Shikova, Thomas Harrer, Carmen Scheibenbogen, Modra Murovska, Bhupesh K Prusty and the European Network on ME/CFS (EUROMENE) in Journal of Translation Medicine 2018, #16 p 268, August 2, 2018 [Published: 1 October 2018]

Review abstract:

Background and main text:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and controversial clinical condition without having established causative factors. Increasing numbers of cases during past decade have created awareness among patients as well as healthcare professionals.

Chronic viral infection as a cause of ME/CFS has long been debated. However, lack of large studies involving well-designed patient groups and validated experimental set ups have hindered our knowledge about this disease. Moreover, recent developments regarding molecular mechanism of pathogenesis of various infectious agents cast doubts over validity of several of the past studies.

Conclusions:
This review aims to compile all the studies done so far to investigate various viral agents that could be associated with ME/CFS. Furthermore, we suggest strategies to better design future studies on the role of viral infections in ME/CFS.

Review Conclusions:

Currently available data on the role of chronic viral infection with ME/CFS is still controversial, showing potential viral involvement for at least a subgroup of ME/CFS patients. Therefore, it is necessary to assess the presence and markers of viral activity at the initial stage of the disease to evaluate possible etiological factors and conduct longitudinal studies in order to assess active viral infection and symptom severity variations over time. Moreover, results should be compared not only between ME/CFS patients and controls, but also with other co-morbidities to assess specificity of suggested biomarkers.

Considering ME/CFS heterogeneity, the use of clinical characteristics and biomarkers to enable definition of the disease subtypes is crucial. In addition, longitudinal and standardized studies determining ME/CFS course and therapy effectiveness with follow-up measurements in dynamics should be accomplished. This will allow prognosis of the disease development and promote development of a specific definition for diagnostics and a treatment plan.

Future strategies for development of infection biomarkers in ME/CFS

  1. Use of quantitative assays rather than qualitative assays to assess the extent of the viral load instead of simple detection of presence or absence. This may facilitate monitoring of a response to treatment; however, diurnal variations and individual response on treatment should be taken into account. Further comprehensive serological testing may help to identify a signature of active infection.
  2. Use of additional biological samples together with blood and serum will be useful in determining the localization and distribution of biomarkers, as well as pathogenicity. Using hair follicles, virus integration can be detected. Similarly throat swab and stool samples can be used for detection of enteroviruses.
  3. Functional studies to compliment clinical biomarker studies in order to clarify functions and interactions of genes, transcripts, proteins, and immune cells and molecules in cases of ME/CFS. This will facilitate understanding of the disease aetiology as well as development and maintenance pathways, and thereby, potential prevention and treatment strategies. However, this strategy requires definition of ME/CFS subgroups.
  4. Use of high throughput methods to gain broader insight into potential biomarkers for infections by obtaining and analysing large-scale data, which will raise the quality and significance of the research.
  5. Confirmation of results by validation studies and multi-centre cohort studies to obtain generalizability of the study and promote implementation of credible biomarkers usable worldwide.
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Why do some ME/CFS patients benefit from treatment with sodium dichloroacetate, but others do not?

Posted on 10/02/2018 by wames

Why do some ME/CFS patients benefit from treatment with sodium dichloroacetate, but others do not?, by Frank Comhaire in Med Hypotheses 2018 Nov;120:65-67 [Epub 2018 Aug 25]

Research abstract:

Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) is an enigmatic disease the pathogenesis of which remains elusive.

Pragmatic proof-of-principle of the hypothetical mechanisms causing the clinical symptoms has been delivered, but it is hard to explain why some patients do respond favourably to treatment with sodium dichloroacetate (DCA), which enhances the activity of the mitochondrial enzyme pyruvate dehydrogenase, but other patients experience no benefit from this substance.

In a prospective trial including 35 ME/CFS patients, logistic regression analysis with stepwise elimination has identified 6 pre-treatment characteristics allowing for the differentiation between responders (n = 13) and non-reponders (n = 22) with high accuracy (P < 0.0001; area under the ROC-curve = 0.92).

A formula was derived generating the probability of belonging to the group of responders. This finding may assist in selecting ME/CFS patients suitable for treatment with DCA, but requires further studies as to the predictive capacity of the derived formula.

Read full paper

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EUROMENE – European co-operation to address gaps in ME/CFS understanding

Posted on 09/27/2018 by wames

EUROMENE – the European Network on ME/CFS

Funded by COST – a European framework supporting trans-national cooperation among researchers, engineers and scholars across Europe – EUROMENE aims to create an integrated network of researchers on ME/CFS in Europe and beyond.

The network will promote multidisciplinarity in ME/CFS research and foster a full chain of translational research to further develop much-needed treatment and prevention strategies for improvement of patients’ quality of life.

  •  to develop strategies to collect population-based data on the prevalence of ME/CFS in Europe
  • to promote co-operation and involvement of research groups
  • to define a standardized clinical diagnosis for ME/CFS for clinicians and researchers
  • to coordinate efforts to determine the social impact of ME/CFS and to appraise the economic damage from the disease.
  • to establish communication links with industrial organisations
  • to develop strategies to collect population-based data on the prevalence of ME/CFS

CA COST Action CA15111 Grant period from 1st May 2018 – 30th April 2019

Recent events:

  • A seminar about “Diagnostics & Therapy in CFS” in Berlin, 26 Sep 2018
  • Call No 3 for Short Term Scientific Missions (STSM) Applications
  • Epidemiology & Socio-economics Working groups met in London 13 Sep
  • Summer school for translational research in ME/CFS June 2018, Berlin
  • Euromene meeting: Clinical research enablers and diagnostic criteria, Paris, April 2018

Dr Derek Pheby from Buckinghamshire New University in the UK is on the Socio-economics work group

Dr Luis Nacul from Cure ME and the ME/CFS Biobank in London is on the Clinical Research Working Group

Find out more: EUROMENE website

 

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The effects of warm water immersion on people with CFS

Posted on 09/27/2018 by wames

The effects of warm water immersion on blood pressure, heart rate and heart rate variability in people with chronic fatigue syndrome, by Romy Parker, Zeenath Higgins, Zandiswa N.P. Mlombile, Michaela J. Mohr, and Tarryn L Wagner in S Afr J Physiother. 2018; 74(1): 442. [Published online 2018 Aug 28]

Research abstract:

Background:
Chronic fatigue syndrome (CFS) is a central sensitisation syndrome with abnormalities in autonomic regulation of blood pressure (BP), heart rate (HR) and heart rate variability (HRV). Prior to exploring the effects of hydrotherapy as a treatment for this population, changes in BP, HR and HRV during warm water immersion need to be established.

Objectives:
The study aimed to determine the effects of warm water immersion on BP, HR and HRV in adults with CFS compared to matched-pair healthy adults.

Method:
A quasi-experimental, single-blinded study design was used with nine CFS participants and nine matched controls. Participants’ BP, HR and HRV were measured before, after 5 minutes and post warm water immersion at the depth of the fourth intercostal space, using the Ithlete® System and Dräger BP monitor.

Results:
There was a significant difference between groups in HRV prior to immersion (control group: 73 [55–74] vs. chronic fatigue syndrome group: 63 [50–70]; p = 0.04). There was no difference in HRV post-immersion. A significant difference in HR after immersion was recorded with the control group having a lower HR than those with CFS (78 [60–86] vs. 86 [65–112]; p = 0.03). The low HRV present in the CFS group prior to immersion suggests autonomic dysregulation. Individuals with CFS may have reduced vagal nerve activation post-immersion. During immersion, HRV of the CFS participants improved similar to that of the healthy controls.

Conclusion:
Prior to immersion, differences were present in the HRV of the participants with CFS compared to healthy controls. These differences were no longer present post-immersion.

Clinical implications:
Warm water immersion appears safe and may be beneficial in the management of individuals with CFS.

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