The interface between CFS & depression

Posted on 02/02/2017 by wames

Research abstract:

The chronic fatigue syndrome (CFS) remains a contentious and controversial presentation despite decades of systematic research into the presentation from a variety of specialties within the medical and associated disciplines.

Variously championed as an aetiology of immunological, neurological, neurophysiological, psychiatric and psychological origin, consensus on a cogent and evidenced-based pathway  has yet to be achieved. Irrespective of the ambiguity regarding aetiology, what is incontrovertible regarding this most distressing of clinical presentations is the experience of significant depression which often accompanies this disorder.

The current paper examines the potential underlying mechanisms which may determine and explain this relationship between CFS and depression and in doing so offer some insights which may be of value in the development of evidence based and scientifically-anchored interventions to improve outcomes in relation to depression specifically and improve quality of life generally, in individuals experiencing this diagnosis.

The interface between Chronic Fatigue Syndrome and Depression: a psychobiological and neurophysiological conundrum, by Derek Larkin, Colin Martin in Neurophysiologie Clinique/Clinical Neurophysiology [Preprint Date: January 26, 2017]

Posted in News | Tagged , , , | Comments Off on The interface between CFS & depression

Treatment and management of CFS/ME: all roads lead to Rome

Posted on 02/01/2017 by wames

Review abstract:

This comprehensive review explores the current evidence on benefits and harms of therapeutic interventions in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and makes recommendations.

CFS/ME is a complex, multi-system, chronic medical condition whose pathophysiology remains unknown. No established diagnostic tests exist; nor are any FDA-approved drugs available for treatment. Because of the range of symptoms of CFS/ME, treatment approaches vary widely.

Studies undertaken have heterogeneous designs and are limited by sample size, length of follow-up, applicability and methodological quality. The use of rintatolimod and rituximab as well as counselling, behavioural and rehabilitation therapy programs may be of benefit for CFS/ME, but the evidence of their effectiveness is still limited.

Similarly, adaptive pacing appears to offer some benefits, but the results are debatable: so is the use of nutritional supplements, which may be of value to CFS/ME patients with lab-proven deficiencies.

To summarize, then, the recommended treatment strategies should include proper administration of nutritional supplements in CFS/ME patients with demonstrated deficiencies and personalized pacing programs to relieve symptoms and improve performance of daily activities, but a larger RCT evaluation is required to confirm these preliminary observations.

At present no firm conclusions can be drawn because the few RCTs undertaken to date have been small-scale, with a high risk of bias, and have used different case definitions. Further RCTs are now urgently needed with rigorous experimental designs and appropriate data analysis, focusing particularly on the comparison of outcomes measures according to clinical presentation, patient characteristics, case criteria and degree of disability (i.e., severely ill ME cases or bedridden).

Treatment and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: all roads lead to Rome, by Jesus Castro-Marrero, Naia Sáez-Francàs, Dafna Santillo, Jose Alegre, in British Journal of Clinical Pharmacology [Published online: 4 January 2017]

This article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record.

 

Posted in News | Tagged , | Comments Off on Treatment and management of CFS/ME: all roads lead to Rome

Team Shareth raises over £420 for WAMES

Posted on 01/31/2017 by wames

Sharon Price writes:

Yesterday evening Gareth and I completed our 5 mile swimathon for WAMES! Woop woop!

322 lengths of 25 metres; so two and a half miles each. A long way!

We are aching but feeling very proud of ourselves. We have been supported by many kind people and have so far managed to raise just over £420. We hope this will increase before we close our fundraising page. There is still time to donate!

We also hope that other people will follow our lead and raise funds for WAMES’ vital work.

Finally, I hope that it inspires people with ME to never give up; I never believed I would have been able to achieve such a feat after 20 years of chronic ME, so never forget that sometimes there are better times to come.

Sharon Price’s Team Shareth’s Sponsored Swim for WAMES on BT MyDonate

Posted in News | Tagged , , | Comments Off on Team Shareth raises over £420 for WAMES

Giardia-specific cellular immune responses in post-giardiasis CFS

Posted on 01/31/2017 by wames

Research abstract:

Background: The role of pathogen specific cellular immune responses against the eliciting pathogen in development of post-infectious chronic fatigue syndrome (PI-CFS) is not known and such studies are difficult to perform.

The aim of this study was to evaluate specific anti-Giardia cellular immunity in cases that developed CFS after Giardia infection compared to cases that recovered well. Patients reporting chronic fatigue in a questionnaire study three years after a Giardia outbreak were clinically evaluated five years after the outbreak and grouped according to Fukuda criteria for CFS and idiopathic chronic fatigue.

Giardia specific immune responses were evaluated in 39 of these patients by proliferation assay, T cell activation and cytokine release analysis. 20 Giardia exposed non-fatigued individuals and 10 healthy unexposed individuals were recruited as controls.

Results: Patients were clinically classified into CFS (n = 15), idiopathic chronic fatigue (n = 5), fatigue from other causes (n = 9) and recovered from fatigue (n = 10). There were statistically significant antigen specific differences between these Giardia exposed groups and unexposed controls.

However, we did not find differences between the Giardia exposed fatigue classification groups with regard to CD4 T cell activation, proliferation or cytokine levels in 6 days cultured PBMCs. Interestingly, sCD40L was increased in patients with PI-CFS and other persons with fatigue after Giardia infection compared to the non-fatigued group, and correlated well with fatigue levels at the time of sampling.

Conclusion: Our data show antigen specific cellular immune responses in the groups previously exposed to Giardia and increased sCD40L in fatigued patients.

Giardia-specific cellular immune responses in post-giardiasis chronic fatigue syndrome, by Kurt Hanevik, Einar Kristoffersen, Kristine Mørch, Kristin Paulsen Rye, Steinar Sørnes, Staffan Svärd, Øystein Bruserud and Nina Langeland in BMC Immunology 2017 18:5 [Published: 28 January 2017]

 

Posted in News | Tagged , | Comments Off on Giardia-specific cellular immune responses in post-giardiasis CFS

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

 

Posted in News | Tagged , , | Comments Off on Naviaux & Gordon respond to criticisms of their metabolomics research

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]

Posted in News | Comments Off on Recent CFS research from psychological perspective

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.

Posted in News | Tagged , | Comments Off on Families with ME wanted for TV show

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.

Posted in News | Tagged , , , , , | Comments Off on The search for a non invasive diagnostic test for ME/CFS

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

 

Posted in News | Tagged , , , , , , , , , | Comments Off on Children with ME need relevant science, not pressure to do more, more, more

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

 

Posted in News | Tagged | Comments Off on Which treatments help people with ME?