ACTivate your life course Pontypool, 5 Sep 2019

ACTivate Your Life course in Pontypool

a four session course that aims to teach people about stress and suffering caused by emotional issues and offers a slightly different approach to more conventional methods of dealing with emotional and physical problems.

  • Venue: Pontypool Leisure Centre,  Trosnant Street, Pontypool  NP4 8AT
  • Thurs 5 – 26 Sep 2019    12 – 2pm

All courses are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

Check out the self help resources

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope.

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Stress management courses Newport Gwent, 4 & 11 Sep 2019

Stress control course

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Newport

  • Wed 4th Sep – 9th Oct 2019, 6-8 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

Newport

  • Wed 11th Sep – 16th Oct 2019, 1-2.45 pm
  • Venue: Llyfrgell Maindee Library, 79 Chepstow Road, Newport NP19 8BY

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope

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NICE call for evidence of management strategies & review methods for ME/CFS

NICE call for evidence

NICE guidance: Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management

In development [GID-NG10091]

Expected publication date: 14 October 2020

Consultation: Call for evidence

What we need:
We need evidence from the areas listed below for the guideline we are developing on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome:

1. Studies that evaluate:

Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS.
Methods of monitoring and/or reviewing people with a diagnosis of ME/CFS
We are looking for trials that compare different strategies or different methods of monitoring and review. Systematic reviews, randomised controlled trials, non- randomised trials that are prospective or retrospective cohort studies will be considered for inclusion in the guideline.

We would like studies that report measurable outcomes on:

  • Mortality
  • Quality of life
  • Fatigue /fatiguability
  • Physical functioning
  • Cognitive function
  • Psychological status
  • Pain
  • Sleep quality
  • Treatment-related adverse effects
  • Activity levels
  • Return to school or work
  • Exercise performance measures.
  • Care needs
  • Impact on families and carers

We cannot accept non comparative studies, promotional material, non-evidence-based assertions of effectiveness or opinion pieces.

2. Evidence on the experience of people who have had interventions for ME/CFS.

We are looking for evidence that explores and evaluates people’s experience of interventions for ME/CFS. Qualitative studies evaluating focus groups and interviews and surveys will be considered for inclusion in the guideline.

We cannot accept case series, case studies, individual accounts of experience, promotional material, non-evidence-based assertions of effectiveness or opinion pieces.

We are particularly interested in information promoting equality of opportunity relating to age, disability, gender, gender identity, ethnicity, religion and belief, sexual orientation or socio-economic status.

Sending information

For published information, send only the details (to include author/s, title, date, journal or publication details, including volume and issue number, and page numbers). Do not send a pdf/Word document or paper copy.

For unpublished information, send:

  • a link to any relevant trials registered with the Cochrane Central Register of Controlled Trials, or with the US National Institutes of Health trials registry
  • paper or electronic copies of other relevant unpublished information.

Highlight any confidential sections (unpublished research or commercially sensitive information) in unpublished information. For more details about this, see our guidelines manual.

Complete the call for evidence response form and the checklist for confidential information form, including the declaration of any links with, or funding from, the tobacco industry. Please email these forms with any relevant information by 5:00 p.m. on Friday 4th October 2019 to:  MECFSCallForEvidence@rcplondon.ac.uk

Alternatively, please send hard copies to:
Kate Ashmore
Project Manager
National Guideline Centre
Care Quality Improvement Department
Royal College of Physicians
11 St Andrews Place
Regent’s Park, London
NW1 4LE

We look forward to receiving this information and thank you in advance for your help.

More information

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ACTivate your life well-being course, Caerphilly 4 Sep 2019

ACTivate Your Life course in Caerphilly

a four session course that aims to teach people about stress and suffering caused by emotional issues and offers a slightly different approach to more conventional methods of dealing with emotional and physical problems.

  • Venue: Caerphilly Library, The Twyn, Caerphilly CF83 1JL
  • Wed 4 – 28 September 2019    10-12 am

All courses are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

Check out the self help resources

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope.

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Academics object to the continued publication of the Lightning Process for children study

Trial By Error: an open letter to Dr Godlee about BMJ’s ethically bankrupt actions, by David Tuller in Virology blog, 28 August 2019

 

I have sent the following letter to Dr Fiona Godlee, editorial director of BMJ, about Archives of Disease in Childhood’s egregious decision to re-publish Bristol University’s Lightning Process trial with the original findings intact. Given the Bristol team’s flagrant methodological violations, the journal should have retracted the paper.

Failing that, Archives should have required the investigators to re-publish the paper with the initial primary outcome–school attendance at six months, which generated null results–as the final primary outcome. Dr Godlee was well aware of the issues involved, so she presumably endorsed the journal’s actions. The documented facts suggest that BMJ’s ethical compass is broken and that editors are more concerned about possible reputational damage than about the integrity of the medical literature or the health and well-being of children. That is presumably why dozens of scientists, clinicians and other experts from top academic institutions were so eager to sign this letter.

**********

Dear Dr Godlee,

We are writing about the correction appended last month [1] to the pediatric study of the Lightning Process conducted by investigators from the University of Bristol and published by Archives of Disease in Childhood in September, 2017. The study appeared under the following title: “Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial.” [2]

As Virology Blog documented shortly after publication [3], the investigators recruited more than half the sample before trial registration as part of a feasibility study, swapped primary and secondary outcomes after gathering data from these early participants, and did not disclose these salient details in the paper. With the recent correction and an accompanying editor’s note, Archives of Disease in Childhood has acknowledged the validity of Virology Blog’s criticisms. Yet the journal has allowed the investigators to reassert their main conclusion–that the Lightning Process is “effective” in treating pediatric illness. This decision is untenable.

The Lightning Process is a commercial program combining life-coaching, neuro-linguistic programming and positive affirmations. Participants are taught that they can overcome illness by controlling and changing their thought patterns. Lightning Process practitioners have declared that they can successfully treat multiple sclerosis, eating disorders and other serious conditions. Government regulators have admonished practitioners for making misleading claims.

Beyond concerns about the Lightning Process itself, the Bristol study was an open-label trial with self-reported outcomes—a combination of design features that can lead to significant bias. Furthermore, in violating core methodological and ethical principles of scientific inquiry, the investigators also breached BMJ’s own strict policy against publishing any trials in which participants have been recruited before registration. Since all major medical journals adopted this policy in 2005, experienced investigators, including members of the Bristol team, should have been well aware of it.

BMJ has been a leader in the movement to require prospective registration as a condition for trials to be considered for publication. In 2013, in testimony before the House of Common’s Science and Technology Committee, you touted BMJ’s success in implementing a zero-tolerance approach to such trials. “As far as we are aware, in the last two years we have not published any trial that has not been prospectively registered,” you stated—a claim you could not accurately repeat today. [4] A 2015 editorial in The BMJ called the prospective registration policy “the single most valuable tool we have to ensure unbiased reporting of research studies.” [5]

Given BMJ’s longstanding position that prospective registration is essential for safeguarding the integrity of the medical literature, it is unclear why you are now willing to exempt the Lightning Process study from this requirement. The editor’s note posted with the correction declared that lack of prospective registration was not grounds for retraction. [6] No explanation or justification was provided for this determination, which appears to be incompatible with the zero-tolerance approach you advocated in your parliamentary testimony.

As you certainly know, a key goal of prospective registration is to prevent selective outcome reporting. Yet selective outcome reporting is exactly what occurred in the Lightning Process study when the investigators swapped primary and secondary outcomes mid-way through. In the published paper, the investigators reported positive results for the revised primary outcome of self-reported physical function at six months, which had initially been designated a secondary outcome. In contrast, they reported null results for the original primary outcome of school attendance at six months, which by the end had been demoted to a secondary outcome.

The swap thus ensured that the investigators were able to report positive rather than null results for their official primary outcome. Not surprisingly, this change had a major impact on how the information was presented in Archives of Disease in Childhood and interpreted by news organizations. The positive findings for the primary outcome that was selected after more than half the participants had provided data were prominently highlighted in the published paper. These findings received widespread media attention [7] and have recently been cited in a systematic review as evidence that the intervention is “effective.” [8] The null findings for the original primary outcome were ignored.

The editor’s note explains that the journal examined the outcome-swapping issue by “seeking assurance from the authors that the change in primary outcome was not influenced by (positive) findings in the feasibility phase.” This statement is perplexing. Individuals subject to potential bias are not generally considered impartial and authoritative arbiters of whether this potential bias has influenced their decision-making. Study design is supposed to seek to minimize bias precisely because humans tend to be blind to their own biases. Reputable science in high-impact journals should not have to rely on investigators’ “assurance” that they have resisted the natural temptation to let their perceived interests guide their selection of primary outcomes.

Moreover, in relation to any assurances provided by the Bristol investigators, it is worth remembering that they withheld important information about trial registration and outcome-swapping from their public version of events. Archives of Disease in Childhood would not have published the paper in the first place except for two major failures: 1) The investigators’ failure to provide an accurate account of how they conducted the trial; and 2) The journal’s failure to detect disqualifying flaws, despite its obligation to subject the paper to rigorous peer review and editorial oversight.

Archives of Disease in Childhood has now re-published positive primary results generated by outcome-swapping in a study that did not meet a strict publication requirement specifically intended to prevent outcome-swapping and other kinds of selective outcome reporting. In doing so, the journal has rewarded the Bristol investigators for their lack of candor and their methodological missteps and has contradicted BMJ’s and your own past statements about the critical importance of prospective registration.

In this case, BMJ’s actions are scientifically and ethically indefensible. They are also potentially harmful to the health and well-being of children. Thank you for your prompt attention to this troubling matter.

Best–

Dharam V. Ablashi, DVM, MS, Dip Bact
Scientific Director
HHV-6 Foundation
Santa Barbara, California, USA
Former Senior Investigator
National Cancer Institute
National Institutes of Health
Bethesda, Maryland, USA

Michael Allen, PhD
Clinical Psychologist (retired)
San Francisco, California, USA

James N. Baraniuk, MD
Professor of Medicine
Georgetown University
Washington, DC, USA

Lisa F. Barcellos, MPH, PhD
Professor of Epidemiology
School of Public Health
California Institute for Quantitative Biosciences
University of California, Berkeley
Berkeley, California, USA

Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, USA

Alison C. Bested, MD, FRCPC
Clinical Director
Institute for Neuro-Immune Medicine
Associate Professor
Nova Southeastern University
Fort Lauderdale, Florida, USA

Charlotte Blease, PhD
Fulbright and Marie Curie Research Fellow
General Medicine and Primary Care
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, Massachusetts, USA

Molly Brown, PhD
Assistant Professor
Department of Psychology
DePaul University
Chicago, Illinois, USA

Robin Callender Smith, PhD
Professor of Media Law
Centre for Commercial Law Studies
Queen Mary University of London
Barrister and Information Rights Judge
London, England, UK

Janet L Dafoe, PhD
Child Psychologist in Private Practice
Palo Alto, California, USA

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, USA

Simon Duffy, PhD, FRSA
Director
Centre for Welfare Reform
Sheffield, England, UK

Jonathan C.W. Edwards, MD
Emeritus Professor of Medicine
University College London
London, England, UK

Valerie Eliot Smith
Barrister and Visiting Scholar
Centre for Commercial Law Studies
Queen Mary University of London
London, England, UK

Margaret C Fernald, PhD
Clinical Child Psychologist
Clinical Associate of Psychology
University of Maine
Orono, Maine, USA

Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, USA

Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, USA

Claudia Gillberg, PhD
Fellow, Centre for Welfare Reform
Sheffield, England, UK
Senior Research Associate
National Centre for Lifelong Learning
Jonkoping University
Jonkoping, Sweden

Rebecca Goldin, PhD
Professor of Mathematics
George Mason University
Fairfax, Virginia, USA

Alan Gurwitt, MD
Psychiatrist in Private Practice (retired)
Associate Clinical Professor
Yale Child Study Center (retired)
New Haven, Connecticut, USA
Associate Clinical Professor
University of Connecticut Dept of Psychiatry (retired)
Storrs, Connecticut, USA
Lecturer, Harvard Medical School (retired)
Boston, Massachusetts, USA

Geoffrey Hallmann, LLB, DipLegPrac, DipFinPrac
Specialist in Disability and Compensation Law (retired)
Lismore, New South Wales, Australia

Brian M. Hughes, PhD, FPsSI
Professor of Psychology
National University of Ireland, Galway
Galway, Ireland

Leonard A. Jason, PhD
Professor of Psychology
DePaul University
Chicago, Illinois, USA

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, USA

Keith Kahn-Harris, PhD
Associate Lecturer in Sociology
Birkbeck, University of London
London, England, UK

Jon D. Kaiser, M.D.
Clinical Faculty
Department of Medicine
University of California, San Francisco
San Francisco, California, USA

Nancy Klimas MD
Director, Institute for Neuro-Immune Medicine
Nova Southeastern University
Director, Miami VA Medical Center GWI and CFS/ME Program
Miami, Florida, USA

Eliana M. Lacerda, MD, MSc, PhD
Clinical Assistant Professor
International Centre for Evidence in Disability
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, England, UK

Bruce Levin, PhD
Professor of Biostatistics
Columbia University
New York, New York, USA

Rogier Louwen, PhD
Assistant Professor
Department of Medical Microbiology and Infectious Diseases
Erasmus University Medical Center
Rotterdam, The Netherlands

Steven Lubet, JD
Williams Memorial Professor of Law
Northwestern University Pritzker School of Law
Chicago, Illinois, USA

Marlon Maus, MD, DrPH, FACS
Director, DrPH Program
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Patrick E. McKnight, PhD
Professor of Psychology
George Mason University
Fairfax, Virginia, USA

Heidi Nicholl, PhD
Chief Executive Officer
Emerge Australia
Melbourne, Victoria, Australia

Steve Olson, MD
Family Physician
Large Medical Group Executive and Regional Physician Director
Oakland, California, USA

Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain

Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, USA

Arthur L. Reingold, MD
Professor of Epidemiology
University of California, Berkeley
Berkeley, California, USA

Ola Didrik Saugstad, MD, PhD
Professor Emeritus
Division of Paediatric and Adolescent Medicine
University of Oslo
Oslo, Norway
Adjunct Professor of Pediatrics
Feinberg School of Medicine
Northwestern University
Chicago, Illinois, USA

David Scales MPhil, MD, PhD
Assistant Professor of Medicine
Division of Hospital Medicine
Weill Cornell Medicine
New York, New York, USA

Michael Scott, PhD
Clinician and Researcher
Psychological Therapies Unit
Liverpool, England, UK

Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA

Eleanor Stein, MD, FRCP(C)
Psychiatrist in Private Practice
Assistant Clinical Professor
University of Calgary
Calgary, Alberta, Canada

Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, England, UK

John Swartzberg, MD
Clinical Professor Emeritus
School of Public Health
University of California, Berkeley
Berkeley, California, USA

Ronald G. Tompkins, MD, ScD
Summer M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA

Samuel Tucker, MD
Assistant Clinical Professor of Psychiatry (retired)
University of California, San Francisco
San Francisco, California, USA

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
University of California, Berkeley
Berkeley, California, USA

Rosamund Vallings, MNZM, MBBS
General Practitioner
Auckland, New Zealand

Linda van Campen, MD
Cardiologist
Stichting Cardiozorg
Hoofddorp, The Netherlands

Mark Vink, MD
Family Physician
Soerabaja Research Center
Amsterdam, The Netherlands

Frans Visser, MD
Cardiologist
Stichting Cardiozorg
Hoofddorp, The Netherlands

Tony Ward, MA (Hons), PhD, DipClinPsyc
Registered Clinical Psychologist
Professor of Clinical Psychology
School of Psychology
Victoria University of Wellington
Wellington, New Zealand
Adjunct Professor, School of Psychology
University of Birmingham
Birmingham, England, UK
Adjunct Professor, School of Psychology
University of Kent
Canterbury, England, UK

John Whiting, MD
Specialist Physician in Private Practice
Brisbane, Queensland, Australia

Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand

1] Crawley E, Gaunt D, Garfield K, et al. Notice of correction and clarification: Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial. Archives of Disease in Childhood; 2019. Accessed at: https://adc.bmj.com/content/early/2019/08/17/archdischild-2017-313375corr1[2] Crawley E, Gaunt D, Garfield K, et al. Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial. Archives of Disease in Childhood; 2018; 103:155-164

[3] Tuller D. Trial by error: the SMILE trial’s undisclosed outcome-swapping. Virology Blog; Dec 13, 2017. Accessed at: http://www.virology.ws/2017/12/13/trial-by-error-the-smile-trials-undisclosed-outcomes/

[4] Clinical trials: Hearings before the Science and Technology Committee, House of Commons; March 13, 2003. (Testimony of Fiona Godlee) Accessed at: https://publications.parliament.uk/pa/cm201213/cmselect/cmsctech/uc1054-i/uc105401.htm

[5] Weber W, Merino J, Loder E. Editorial: trial registration 10 years on. BMJ; 2015; 351. Accessed at: https://www.bmj.com/content/351/bmj.h3572

[6] Brown N. Editor’s note on correction to Crawley et al (2018). Archives of Disease in Childhood; 2019. Accessed at: https://adc.bmj.com/content/early/2019/08/17/archdischild-2017-313375ednote

[7] Bosely, S. Controversial Lightning Process ‘helps children with chronic fatigue syndrome.’ The Guardian; September 20, 2017. Accessed at: https://www.theguardian.com/society/2017/sep/20/controversial-lightning-process-helps-children-with-chronic-fatigue-syndrome-me

[8] Gregorowski A, Simpson J, Segal T. Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis; where are we now? Current Opinion in Pediatrics; 2019; 31: 462-46.

See also: Trial By Error: Joan McParland’s Lightning Process Experience

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Stress management course in Blackwood & Cwmbran, 3 Sep 2019

The 6-week course in Stress Control will help you to understand stress, how it can affect you and how to control it. Each week you will learn new Stress Control skills and will learn how to fit these into your own personal Stress Control toolkit.

The six sessions are:

  • Learning about stress
  • Controlling your body
  • Controlling your thoughts
  • Controlling your actions
  • Controlling panic and sleep problems
  • Boosting wellbeing and looking to the future

Each person on the course receives a free Stress Control manual, containing course information, home activities and an audio CD of various mindfulness and relaxation activities. You can download the separate sections of the manual and access the audio here

Stress can affect all of us, whether we are young or old, male or female, rich or poor. Experiencing problems with stress doesn’t mean that we’re stupid, weak or mad. Stress is normal.

Blackwood, Caerphilly

  • Tues 3rd Sep – 8th Oct 2019,     5.30-7 pm
  • Venue: Groundwork Wales, Ty Mynyddislwyn Environment Centre, Bryn Road,
    Pontllanfraith, Blackwood, NP12 2BH

Cwmbran

  • Tues 3rd Sep – 8th Oct 2019,     5.30-7 pm
  • Venue: The Victory Church,  Green Forge Way,  Cwmbran  NP44 3BA

All courses above are designed to be as accessible as possible, no personal details are taken, no referral or prior booking is required, and the non-interactive format ensures that nobody is put on the spot or asked to discuss any personal problems. You are welcome to bring a friend or relative, all are welcome. Just turn up!

More info:  see the Aneurin Bevan Health Board website or contact the information centre on 0330 053 5596  & select option 2

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to cope.

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A systematic review of cytokines in CFS/ME/SEID

A systematic review of cytokines in chronic fatigue syndrome /myalgic encephalomyelitis/ systemic exertion intolerance disease (CFS/ME/SEID) by Matthew Corbitt, Natalie Eaton-Fitch, Donald Staines, Hélène Cabanas & Sonya Marshall-Gradisnik in BMC Neurology volume 19, Article number: 207 (2019) [Published: 24 August 2019]

 

Research abstract:

Background: Cytokines in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/ Systemic Exertion Intolerance Disease (CFS/ME/SEID) patients compared with healthy controls have been extensively studied. However, the evidence regarding whether a baseline difference between CFS/ME/SEID patients and the normal population remains unclear.

The aim of this study was to conduct a systematic review of the literature regarding cytokines in CFS/ME/SEID and whether there is a significant difference in cytokine levels between this patient group and the normal population.

Methods: Pubmed, Scopus, Medline (EBSCOHost), and EMBASE databases were searched to source relevant studies for CFS/ME/SEID. The review included any studies examining cytokines in CFS/ME/SEID patients compared with healthy controls. Results of the literature search were summarised according to aspects of their study design and outcome measures, namely, cytokines. Quality assessment was also completed to summarise the level of evidence available.

Results: A total of 16,702 publications were returned using our search terms. After screening of papers according to our inclusion and exclusion criteria, 15 studies were included in the review. All the included studies were observational case control studies. Ten of the studies identified measured serum cytokines in CFS/ME/SEID patients, and four measured cytokines in other physiological fluids of CFS/ME/SEID patients. The overall quality assessment revealed most papers included in this systematic review to be consistent.

Conclusions: Despite the availability of moderate quality studies, the findings of this review are inconclusive as to whether cytokines play any definitive role in CFS/ME/SEID, and consequently, they would not serve as reliable biomarkers. Therefore, in light of these results, it is recommended that further efforts toward a diagnostic test and treatment for CFS/ME/SEID continue to be developed in a range of research fields.

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MESiG ME Support group meets Cardiff, 2 Sep 2019

MESiG Support Group invites you to join them from 2 – 3.30 pm on Monday 2 September 2019 at Bethel Church Community Centre, Llangranog Road, Llanishen,  Cardiff, CF14 5BJ

They hope to be joined by Emma Jones, an experienced Naturopath who herself had ME and was cured by another Naturopath. She then went on to be trained by her and now she has a partner and two children.

Come and share your experiences of what helps you and what doesn’t, so all can learn and support each other, over tea/coffee and biscuits. All are welcome, please note that people with similar conditions are also welcome to come along.

 

More info: mesigwales@gmail.com      website

Next meeting: Oct 7th

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Dr Nina Muirhead – video Q&A

Interviews with Dr Nina Muirhead

ME Suppport in Glamorgan (MESIG) has posted videos with Dr Nina Muirhead, who is a  dermatologist and person with ME.

Video 1: She answers the following questions:

  • What are your experiences as a ME sufferer?
  • How did you get diagnosed with ME?
  • How does ME affect your life?
  • How does ME affect the relationship to your children?

Video 2:

  • What is your perception of ME as a doctor?
  • What is the current biomedical research on ME?

Video 3:

  • What is your perception on educating doctors about ME?
  • What is the importance of local charities?
  • How has ME affected your working life?

Video 4:

  • What is your advice for other sufferers?
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Antibodies to Human Herpesviruses in ME/CFS patients

Antibodies to Human Herpesviruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, by Jonas Blomberg, Muhammad Rizwan, Agnes Böhlin-Wiener, Amal Elfaitouri, Per Julin, Olof Zachrisson, Anders Rosén and Carl-Gerhard Gottfries in Front. Immunol., 14 August 2019, [https://doi.org/10.3389/fimmu.2019.01946]

 

Research abstract:

Myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS) is a debilitating disease characterized by myalgia and a sometimes severe limitation of physical activity and cognition. It is exacerbated by physical and mental activity. Its cause is unknown, but frequently starts with an infection.

The eliciting infection (commonly infectious mononucleosis or an upper respiratory infection) can be more or less well diagnosed. Among the human herpesviruses (HHV-1-8), HHV-4 (Epstein-Barr virus; EBV), HHV-6 (including HHV-6A and HHV-6B), and HHV-7, have been implicated in the pathogenesis of ME/CFS.

It was therefore logical to search for serological evidence of past herpesvirus infection/ reactivation in several cohorts of ME/CFS patients (all diagnosed using the Canada criteria). Control samples were from Swedish blood donors. We used whole purified virus, recombinant proteins, and synthetic peptides as antigens in a suspension multiplex immunoassay (SMIA) for immunoglobulin G (IgG).

The study on herpesviral peptides based on antigenicity with human sera yielded novel epitope information. Overall, IgG anti-herpes-viral reactivities of ME/CFS patients and controls did not show significant differences. However, the high precision and internally controlled format allowed us to observe minor relative differences between antibody reactivities of some herpesviral antigens in ME/CFS versus controls.

ME/CFS samples reacted somewhat differently from controls with whole virus HHV-1 antigens and recombinant EBV EBNA6 and EA antigens. We conclude that ME/CFS samples had similar levels of IgG reactivity as blood donor samples with HHV-1-7 antigens. The subtle serological differences should not be over-interpreted, but they may indicate that the immune system of some ME/CFS patients interact with the ubiquitous herpesviruses in a way different from that of healthy controls.

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