Naviaux & Gordon respond to criticisms of their metabolomics research

Posted on 01/31/2017 by wames

Reply to Roerink et al.: Metabolomics of chronic fatigue syndrome, by Robert K. Naviaux and Eric Gordon in PNAS 2017 114 (6) E911-E912; [published ahead of print January 26, 2017]

We thank Roerink et al. (1) for their comments. We respond to their two points in order.

Their first point asked about the effect of physical  activity on sphingolipids.  The phingolipid response to exercise is  complex. It differs in healthy trained and untrained individuals and has not yet been studied using methods that can distinguish the classes of sphingosines, ceramides, sphingomyelins, and glycosphingolipids measured
in our analysis of myalgic encephalomyelitis (ME)/chronic fatigue  syndrome (CFS) (2)…

Second, Roerink et al. (1) raise questions about the standard statistical methods used in metabolomics studies. We used multivariate analysis by partial least squares discriminate analysis (PLSDA), area under the receiver operator characteristic (AUROC) curve analysis,
random forest methods for biomarker discovery, repeated double cross-validation, and permutation analysis…

Read the full response at bottom of page

 

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Recent CFS research from psychological perspective

Posted on 01/30/2017 by wames

Recent CFS research fron psychological perspective

Heterogeneity in chronic fatigue syndrome – empirically defined subgroups from the PACE trial by Williams TE, Chalder T, Sharpe M, White PD in Psychological Medicine [Preprint January 23, 2017]

Long-term economic evaluation of cognitive-behavioural group treatment versus enhanced usual care for functional somatic syndromes, by Andreas Schroder, Eva Ornbol, Jens S. Jensen, Michael Sharpe, Per Fink in Journal of Psychosomatic Research [Available online 10 January]

Chronic Fatigue Syndrome: Cognitive, behavioural and emotional processing vulnerability factors, by Samantha K. Brooks, Trudie Chalder, Katharine A. Rimes in Behavioural and Cognitive Psychotherapy, [Preprint January 18, 2017]

Activity perception in chronic fatigue syndrome and asthma: Development of a new measure, by I. Alexeeva, M. Martin in Bulletin of the European Health Psychology Society  vol 18. Supp. page 892, 2016

Illness specific cognitive biases in chronic fatigue syndrome independent of mood and attentional control deficits, by A. Hughes, T. Chalder, C. Hirsch, R. Moss-Morris in Bulletin of the European Health Psychology Society  Vol 18. Supp. page 696   2016

The relationship of partner support and expressed emotion to cortisol reactivity in a community sample, by K. Dienes, K. Engel, S. Torres-Harding, A. Wearden in Bulletin of the European Health Psychology Society  Vol 18. Supp. page 903  2016

The role of emotions in the perpetuation of symptoms and disability in chronic fatigue syndrome, by C. Willis in Bulletin of the European Health Psychology Society   Vol 18. Supp. page 883  2016

Predictors of on-going fatigue after acute infection: a systematic review, by K. Hulme, J. Hudson, P. Rojczyk, P. Little, R. Moss-Morris in Bulletin of the European Health Psychology Society   Vol 18. Suppl. page 624   2016

Fatigue in an adult attention deficit hyperactivity disorder population: A trans-diagnostic approach, by Denise C. Rogers, Antonia J. Dittner, Katharine A. Rimes, Trudie Chalder, in British Journal of Clinical Psychology [Preprint December 5, 2016]

An attention and interpretation bias for illness-specific information in chronic fatigue syndrome A.M. Hughes, T. Chalder, C.R. Hirsch, R. Moss-Morris in Psychological Medicine [Preprint November 29, 2016]

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Families with ME wanted for TV show

Posted on 01/30/2017 by wames

EXTRAORDINARY FAMILIES
Do you have a family member living with ME or CFS? Is your family different
from the norm? Do you celebrate your uniqueness and embrace your
differences?

7Wonder want to celebrate the diversity of families in the UK as part of a project for
a major UK TV Broadcaster.

Do you feel your family stands out? Are you proud of your family? Would you like to
show the world how great and unique your family is?

7Wonder would like to hear from anyone who thinks their family is a little bit different!
Email: familycasting@7wonder.co.uk

Please pass on this flyer to anyone who might be interested.

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The search for a non invasive diagnostic test for ME/CFS

Posted on 01/27/2017 by wames

Solve ME/CFS Initiative blog post, 13 January 2013: Non-Invasive Diagnostic Test Project Seeks to Detect ME/CFS

This week, we highlight the Cathleen J. Gleeson PhD Fund and our collaborative partnership with the University of Washington on diagnostic testing in ME/CFS.

This study of diagnostics and metabolic imaging uses advanced, non-invasive magnetic resonance spectroscopy (MRS) to measure muscle metabolites in ME/CFS patients before and after fatiguing exercise.

Pilot testing conducted earlier through this project compared a single patient with ME/CFS to that of a matched healthy control. Preliminary analysis revealed abnormal levels of certain metabolites, most notably NAD (P) H, in the ME/CFS subject compared to the healthy control. This result points to cellular metabolic dysfunction in a specific pathway that may itself promote and suffer from oxidative stress. The difference in metabolic profile was most pronounced the day following fatiguing exercise, mirroring a commonly reported timeline of symptoms for those with ME/CFS.

This preliminary data suggests that an abnormal response of NADP and its cofactor, NAD(P)H, may be a molecular marker for ME/CFS-related oxidative stress at the cellular level.

The proposed experiments are designed to test whether this abnormality is also observed in a larger set of subjects diagnosed with ME/CFS. Confirmation of the result would establish MRS as a powerful tool to non-invasively detect and measure a molecular signature of this disease. If successful, our research would establish a new, breakthrough research platform for understanding the molecular basis of ME/CFS.

This study is made possible by a grant from the Cathleen J. Gleeson PhD Fund and is led by Kevin Conley, PhD, professor of radiology and co-director of the Translational Center for Metabolic Imaging at the University of Washington and David Maughan, PhD, a professor emeritus of molecular physiology & biophysics at the University of Vermont and visiting scholar in radiology at the University of Washington.

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Children with ME need relevant science, not pressure to do more, more, more

Posted on 01/26/2017 by wames

Bristol cable article, by Jenny Horner, 24 January 2017: Children with ME need relevant science, not pressure to do more, more, more”

An advocate and campaigner living with ME explains why she opposes Bristol University’s trials on children with the condition.

In November, Bristol University made national headlines for a £1m trial attempting to treat child ME sufferers using a specific form of cognitive behaviour therapy (CBT) over the internet. In chronic conditions, talking therapies can be useful support for the uncertainty and loss caused by illness.

However, CBT is being used differently in ME with a strong agenda to increase activity, without treating the underlying disease. Bristol is also trialling a controversial ‘graded exercise therapy’ (MAGENTA). As an ME sufferer myself, I am deeply troubled to see the continued use of approaches to treat ME that can harm sick children instead of helping them…

Adults with ME feel that our views on these issues are usually ignored or caricatured. Children with ME have even less of a voice.

Read full article

 

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Which treatments help people with ME?

Posted on 01/23/2017 by wames

An Australian blogger with ME has produced a list of  treatments that have been suggested over the years as of possible help to people with ME. This is not an exhaustive list, nor is it necessarily a recommendation.

To help us in our talks with Health Boards, WAMES would be interested in hearing which treatments you have tried, successfully or otherwise.

Prescription Treatments for ME/CFS

Azithromycin                          Dr. Brewer’s Protocol
Clonazepam                            Dexedrine
DHEA                                       Fludrocortisone
Gabapentin (Neurontin)      Heparin
Isoprinosine (Immunovir)   Low Dose Naltrexone (LDN)
Magnesium Injections           Melatonin
Myers’ Cocktail                       Nexavir (Kutapressin)
Nimodipine                              Oxytocin
Pentoxifylline                          Rifaximin (Xifaxan)
Sleep Aids                                 Vitamin B12 Injections

Over-the-Counter Treatments for ME/CFS (Non Prescription)

Artesunate                                    Benfotiamine and Allithiamine
Biotin                                             Butyrate
Coenzyme Q10                             Cordyceps Sinensis and Shiitake Mushroom
Curcumin                                      D-Ribose
Energy Revitalization System   Epicor
Essential fatty acids (EFA)        Far Infrared Sauna
Fucoidan                                        Germanium
Hawthorn                                       Inosine
IP-6 (Inositol Hexaphosphate)  L-Carnitine
L-Serine                                           Magnesium
NADH                                              Nicotine Gum
Oxymatrine (Equilibrant)            Piracetam

PEM Treatments                            ProBoost
Propax with NT Factor                 Ranitidine
Selenium (high dose)                    Sleep Aids
Sulforaphane                                  Thiamine (high dose)
Vagus Nerve Stimulation             Vitamin D

Other treatments

various probiotics                                Glutathione
N-Acetyl Cysteine                                methylation cycle treatments
MAF 314                                                IV saline solution
Gamma Globulin injections/IV         Lidocaine IV
Valtrex                                                    Valcyte
Ergoloid                                                  Levofolinic Acid
Nifedipine                                              Galantamine
Ampligen                                                Rituximab

Read the blog post for more info about many of these treatments:     Treatments for ME/CFS

 

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Natural course of chronic disabling fatigue in adolescents

Posted on 01/23/2017 by wames

Research abstract

Objective:   Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents. Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.

Design:   Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.

Setting:  Avon, UK.

Participants:   We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.

Results:   The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16.

Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.

Conclusions:  The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.

What is already known on this topic?

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is relatively common and disabling in children and adolescents. Previous studies (typically with small samples) have reported inconsistent estimates of persistence of CFS/ME during adolescence. The long-term prognosis of the condition in those not receiving treatment is not known.

What this study adds?

The prevalence of chronic disabling fatigue (CDF), a proxy for clinically diagnosed CFS/ME, increases during adolescence.

Approximately 25% persist over a 2–3-year follow-up. Only 8% of children with CDF at age 13 had CDF at 16 and 18 years.

Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents, by Tom Norris, Simon M Collin, Kate Tilling, Roberto Nuevo, Stephen A Stansfeld, Jonathan AC Sterne, Jon Heron, Esther Crawley in Arch Dis Child [Published Online 19 January 2017]

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What happens when you have a disease doctors can’t diagnose

Posted on 01/20/2017 by wames

TED Summit video, filmed June 2016, of a talk by film maker Jennifer Brea: What happens when you have a disease doctors can’t diagnose  January 2017


Five years ago, American Jennifer Brea became progressively ill with myalgic encephalomyelitis, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable.

In this poignant talk, Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects we don’t fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.

She also highlights the attitudes that have caused many medical conditions over the years to have been classified as psychological, thus delaying scientific research and the search for a cure.

Watch the video [17 mins]

Jennifer Brea’s website           Meet the artist video

Her film Unrest, previously Canary in a coal mine, will premiere in the documentary competition at the 2017 Sundance Film Festival.

ParkRecord blog post by Frances Moody, 17 January: ‘Unrest’ documents lives of ME patients       The documentary shows the struggle of those who suffer from ME or CFS

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Life stories & photo-elicited diaries of people with severe ME/CFS

Posted on 01/20/2017 by wames

Thesis abstract:

Myalgic Encephalomyelitis (ME) remains a controversial disease, shrouded in medical and social uncertainty. This thesis examines connections between language, space and representations of becoming diagnosed and living with the often severe effects of this chronic illness.

Dominant medical and political institutions, often successful in funding, hold the power to drive the medical debates surrounding aetiology and treatment. As these institutions govern and wrangle over the ‘making’ of a definable truth, people are living with the ‘reality’ of illness.

In order to address the issues of living with this chronic illness, this thesis examines 9 life stories and 8 subsequent Photo-Elicited Diaries of 2 males and 7 females diagnosed with ME (also known as Chronic Fatigue Syndrome).

This thesis adopts a transdisciplinary approach and employs critical discourse and narrative analyses to both the bio-political and socio-cultural contexts. A kaleidoscopic view was applied to examine the discursive, material and relational aspects of living with a particular chronic illness. This method identified issues of ‘doing’ illness whilst ‘being’ chronically ill.

Taking such an approach exposed the power relations, social practices and subjective experiences of becoming and mastering illness, often within the enclosed  spaces of homes/hospitals and house/bedbound. The findings reflected on the severe effects as a causal agent for displacing personal and social truths, for continually plugging in and out of social worlds and the conditions of possibilities for resisting and surviving chronic illness.

By combining narrative and visual accounts the rich complexities of living with a severe chronic illness could be better explored. This study advocates the benefits of combining spoken and visual experiences of illness for future studies and has the potential to impact approaches employed within the therapeutic setting.

As the house/bedbound tend to remain the missing voices within medical and social research, this study joins an urgent call for research to focus not merely on disability  issues, but impairments and the associated effects – relapsing,  recovering and surviving chronic illness.

ME and its discontents: life stories and photo-elicited diaries of a severe chronic illness, by Sharon Gallagher. MPhil thesis,  University of East London, June 2016

UEL website entry

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ME/CFS presents a medical education challenge in the US

Posted on 01/19/2017 by wames

Dr Kenneth Friedman submits evidence to the US Chronic Fatigue Syndrome Advisory Committee (CFSAC) which he hopes will stimulate a long overdue, effective, national ME/CFS Medical Education program:

Introduction:

ME/CFS presents a medical education challenge in the United States.[1]   Perhaps because it is an illness diagnosed by a patient’s report of symptoms, with variable pathophysiological findings among patients, and no known biomarker to support a diagnosis, many healthcare providers doubt a physical basis of the illness. The questioned etiology of ME/CFS in the minds of practicing physicians may discourage the inclusion of ME/CFS in medical school curricula. [2]  But others factors, such as disproportionately lower research funding for this illness,[3] and the majority of research studies being statistically underpowered, [4] make curriculum development difficult.

Recently, the credibility of some published data and their interpretation has been challenged, and the data only opened to public inspection after court order. [5]

The federal government has both directly and indirectly contributed to the lack of medical education and medical education materials.

Read more for details of the history of medical education for ME/CFS in the US.

Download: Meeting the ME/CFS Medical Education Challenge Testimony for the Chronic Fatigue Syndrome Advisory Committee (CFSAC), by Kenneth J. Friedman, Ph.D. January 2017

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