CFS patients have no reason to accept the PACE trial results

Posted on 07/12/2017 by wames

Article abstract:

Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman, by Susanna Agardy in Journal of Health Psychology [First Published June 27, 2017]

Petrie and Weinman urge chronic fatigue syndrome patients to move on from their beliefs about their illness and accept the findings of thePACE trial. This is unreasonable in view of the failure of PACE to achieve evidence of recovery through cognitive behaviour therapy and graded exercise therapy in either self-reports or the objective measure of the 6-minute walking test.

Contrary to their suggestion, the Institute of Medicine describes chronic fatigue syndrome not as psychological but as a serious, chronic, systemic disease, with post-exertional malaise as its main feature which inhibits exercise.

Linking debate about PACE with intimidation of researchers is unjustifiable and damaging to patients.

 

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Impact of Rantes from jawbone on CFS

Posted on 07/10/2017 by wames

Impact of Rantes from jawbone on Chronic Fatigue Syndrome by  Johann Lechner, Katrin Huesker, Volker von Baehr in J Biol Regul Homeost Agents. 2017 Apr-Jun;31(2):321-327

 

This study elucidates the question of whether chronic inflammation in the jawbone contributes to the development of Chronic Fatigue Syndrome (CFS).

Fatty degenerative osteonecrosis in jawbone (FDOJ) may contribute to CFS by induction of inflammatory mediators. We examined seven cytokines by multiplex analysis in jawbone samples from two groups of patients. In order to clarify neurological interrelations, specimens from 21 CFS patients were analyzed from areas of previous surgery in the retromolar wisdom tooth area.

Each of the retromolar jawbone samples showed clinically fatty degenerated and osteonecrotic medullary changes. As control, healthy jawbone specimens from 19 healthy patients were analyzed. All fatty necrotic and osteolytic jawbone (FDOJ) samples showed high expression of RANTES and fibroblast growth factor (FGF)-2. FDOJ cohorts showed a 30-fold mean overexpression of RANTES and a 20-fold overexpressed level of FGF-2 when compared to healthy controls. As RANTES is discussed in the literature as a possible contributor to inflammatory diseases, we hypothesize that FDOJ in areas of improper and incomplete wound healing in the jawbone may hyperactivate signaling pathways.

Constituting a hidden source of “silent inflammation” FDOJ may represent a hitherto unknown cause for the development of CFS.

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Unperturbed Cytotoxic Lymphocyte Phenotype & Function in ME/CFS Patients

Posted on 07/04/2017 by wames

Research abstract:

Unperturbed Cytotoxic Lymphocyte Phenotype and Function in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Patients, by Jakob Theorell, Indre Bileviciute-Ljungar, Bianca Tesi, Heinrich Schlums, Mette Sophie Johnsgaard, Babak Asadi-Azarbaijani, Elin Bolle Strand and Yenan T. Bryceson in Front. Immunol., 26 June 2017

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a debilitating disorder linked to diverse intracellular infections as well as physiological stress. Cytotoxic lymphocytes combat intracellular infections. Their function is attenuated by stress.

Despite numerous studies, the role of cytotoxic lymphocytes in ME/CFS remains unclear. Prompted by advances in the understanding of defects in lymphocyte cytotoxicity, the discovery of adaptive natural killer (NK) cell subsets associated with certain viral infections, and compelling links between stress, adrenaline, and cytotoxic lymphocyte function, we reassessed the role of cytotoxic lymphocytes in ME/CFS.

Forty-eight patients from two independent cohorts fulfilling the Canada 2003 criteria for ME/CFS were evaluated with respect to cytotoxic lymphocyte phenotype and function.

Results were compared to values from matched healthy controls. Reproducible differences between patients and controls were not found in cytotoxic lymphocyte numbers, cytotoxic granule content, activation status, exocytotic capacity, target cell killing, or cytokine production.

One patient expressed low levels of perforin, explained by homozygosity for the PRF1 p.A91V variant. However, overall, this variant was present in a heterozygous state at the expected population frequency among ME/CFS patients. No single patient displayed any pathological patterns of cellular responses. Increased expansions of adaptive NK cells or deviant cytotoxic lymphocyte adrenaline-mediated inhibition were not observed.

In addition, supervised dimensionality reduction analyses of the full, multidimensional datasets did not reveal any reproducible patient/control discriminators. In summary, employing sensitive assays and analyses for quantification of cytotoxic lymphocyte differentiation and function, cytotoxicity lymphocyte aberrances were not found among ME/CFS patients. These assessments of cytotoxic lymphocytes therefore do not provide useful biomarkers for the diagnosis of ME/CFS.

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Development of a new activity measure: Activity perception in healthy population and in people with chronic illness

Posted on 07/01/2017 by wames

Research abstract:

Development of a new activity measure: Activity perception in healthy population and in people with chronic illness, by M Martin & I Alexeeva in European Psychiatry
Vol 41, Supplement, p S796 [30 June 2017]  Full article behind paywall

Introduction:
Self-reports provide rich information about the types of activities people engage in. Reviewing current activity measures two issues become  evident. Firstly, they were developed and validated in healthy populations. Secondly, they are diverse in their applications and measured domains. Thus, to assess the construct of activity fully large
numbers of measures need to be used.

Objectives:
The study aimed to explore different dimensions of activity (e.g. work, physical, mental, leisure, sedentary behaviours) using a new scale assessing multiple domains of daily activities.

Methods:
A new activity scale was used to investigate the types of activity and inactivity in people with chronic illness (asthma, chronic fatigue syndrome (CFS)) and in a healthy group. The types of activities measured included; leisure and sport, home and outside, social activity, work and education, and mental activity. The scale also aimed to measure the
construct of inactivity, represented by sedentary behaviours, such as staying in bed during the day.

Results:
The results showed a pattern of significant correlations between the new activity scale, specifically its two major domains of activity and inactivity, and other measures of functioning and activity in the illness groups, but not in the healthy group.

Conclusions:
The lack of significant associations between the new activity scale and other measures of activity and functioning within the healthy group indicated the measure may be more suitable for assessing activity in people with chronic illness than in healthy people. Additionally, the results underscore the importance of measuring inactivity as a separate
domain.

 

How can a self report scale be valid in ill people but not healthy people? Honest to goodness.

Objective measures need to correlate with self report. Not tricky to research…… Perhaps all this effort is pointing to the unreliability of self report measures of activity. Which relies on subjective recollection of memory……. That’ll be prone to bias.

Why no objective measures. Fitbits are cheap for heavens sake.

Waste of energy and research effort. Not great from any institution but Oxford. Wow ?

Joan x

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Practical management of CFS or ME in childhood

Posted on 06/30/2017 by wames

Article abstract:

Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood, by A Brigden, M Loades M, A Abbott, J Bond-Kendall, E Crawley in Archives of Disease in Childhood [Preprint June 28 2017] Full article behind paywall

Paediatric chronic fatigue syndrome or myalgic encephalomyelitis affects at least 1% of secondary school children in the UK and is very disabling. Treatment is effective but few children get a diagnosis or access treatment. This paper summarises what we currently know about diagnosing and treating this important illness in childhood.

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Postural Stability Exercise classes Ceredigion

Posted on 06/30/2017 by wames

Are you concerned about yourself or a friend / family member who has had a fall or is afraid of falling?

Ceredigion’s National Exercise Referral Scheme are now conducting Postural Stability Exercise Classes across Ceredigion.

For some these classes can reduce the chance of falling by up to 54%.

For more information contact your GP

or Paul Jones, Ceredigion Actif            01970 633610        paul.jones@ceredigion.gov.uk

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BBC ‘Doctor in the house’ helps person diagnosed with ME & FM

Posted on 06/30/2017 by wames

BBC One TV Programme: Doctor in The House

Broadcast 27 June 2017

Available on iplayer until 25 July 2017

Dr Rangan Chatterjee helps 2 people suffering from exhaustion:

Nicola has been diagnosed with ten different conditions, including fibromyalgia, ME, sciatica and depression. Her pain and exhaustion have led her to become reliant on painkillers and she struggles to get through the day. Can Dr Chatterjee help Nicola find the cause of her problems and improve her health so that she can enjoy life again with her three young sons?

La-Vern is suffering from stress and severe exhaustion and is at risk of developing life-threatening type 2 diabetes. As a single mother, she works two jobs as a car saleswoman and a nightclub bouncer whilst juggling the demands of her two young sons. Rangan must find a way to completely overhaul her lifestyle, including her diet, sleeping habits and work-life balance.

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Prevalence of & risk factors for severe cognitive & sleep symptoms in ME/CFS & MS

Posted on 06/29/2017 by wames

Research abstract:

Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS, by Jain V, Arunkumar A, Kingdon C, Lacerda E, Nacul L in BMC Neurol. 2017 Jun 20;17(1):117

Background:

There are considerable phenotypic and neuroimmune overlaps between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and multiple sclerosis (MS).

While the precise aetiologies of both MS and ME/CFS are unclear, evidence suggests that deterioration in cognitive function is widely prevalent in patients with either condition.

Little is known about differing risk factors or exposures, which may lead to severe cognitive or sleep symptoms. This study aims to gauge the extent of cognitive and sleep symptoms in ME/CFS and MS patients participating in the UK ME/CFS Biobank and identify the characteristics of those experiencing severe symptoms.

Methods:

This was a cross-sectional study of 395 UK ME/CFS Biobank participants, recruited from primary care and the community, using similar standardised protocols, and matched by age, sex and geographical area. Data were collected from participants using a standardized written questionnaire at clinical visits.

Cognitive symptoms included problems with short-term memory, attention, and executive function. Sleep symptoms included unrefreshing sleep and poor quality or inadequate duration of sleep. All participants reported symptoms based on an ordinal severity scale. Multivariable logistic regression was carried out in the ME/CFS group to investigate socio-demographic factors associated with severe symptoms.

Results:

All cognitive and sleep symptoms were more prevalent in the ME/CFS group, with ‘trouble concentrating’ (98.3%) the most commonly reported symptom. Severe symptoms were also more commonly reported in the ME/CFS group, with 55% reporting ‘severe, unrefreshing sleep’.

Similarly, in the MS group, the most commonly reported severe symptoms were sleep-related. Logistic regression analysis revealed that ME/CFS patients aged over 50 years were more than three times as likely to experience severe symptoms than those younger than 30 (OR 3.23, p = 0.031). Current smoking was associated with severe symptoms, increasing the risk by approximately three times (OR 2.93, p = 0.003) and those with household incomes of more than £15,000 per year were less likely to experience severe symptoms compared to those earning less than this (OR 0.31, p = 0.017).

Conclusions:

Cognitive and sleep symptoms are more common in ME/CFS patients than in MS patients and healthy controls, providing further support for existing evidence of central nervous system abnormalities in ME/CFS. Our findings suggest that people with ME/CFS who are smokers, or have a low income, are more likely to report severe cognitive and sleep symptoms. Future research should aim to develop strategies to prevent the progression of severe cognitive and sleep symptoms through early interventions that prioritise patients identified as being at highest risk.

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No increased risk of CFS after HPV vaccination

Posted on 06/28/2017 by wames

Research abstract:

HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway by Berit Feiring, Ida Laake, Inger Johanne Bakken, Margrethe Greve-Isdahl, Vegard Bruun Wyller, Siri E. Haberg, Per Magnus, Lill Trogstad in Vaccine [Available online 23 June 2017]

Background:

Vaccination has been suggested to be involved in the aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). HPV vaccine was introduced in the Norwegian Childhood Immunisation Programme and offered 12 year old girls from 2009. We studied the association between HPV vaccination and risk of CFS/ME and also assessed medical history in relation to both risk of CFS/ME and HPV vaccine uptake.

Methods:

Individual data from national registries, including the Norwegian Population Registry, the Norwegian Patient Registry and the Norwegian Immunisation Registry were linked using the unique personal identification number. Yearly incidence rates of CFS/ME for 2009-2014 were calculated among the 824,133 boys and girls, aged 10-17 living in Norway during these 6 years. A total of 176,453 girls born 1997-2002 were eligible for HPV vaccination and included in further analyses.

Hazard ratios (HRs) of CFS/ME were estimated using Cox regression.

Risk differences (RDs) of vaccine uptake were estimated with binomial regression.

Results:

A similar yearly increase in incidence rate of CFS/ME was observed among girls and boys, IRR=1.15 (95% confidence interval (CI)

1.10-1.19) and 1.15 (95% CI 1.09-1.22), respectively. HPV vaccination was not associated with CFS/ME, HR=0.86 (95% CI 0.69-1.08) for the entire follow-up period and 0.96 (95% CI 0.64-1.43) for the first two years after vaccination. The risk of CFS/ME increased with increasing number of previous hospital contacts, HR=5.23 (95% CI 3.66-7.49) for 7 or more contacts as compared to no contacts. Girls with 7 or more hospital contacts were less likely to be vaccinated than girls with no previous hospital contacts, RD=−5.5% (95% CI −6.7% to −4.2%).

Conclusions:

No indication of increased risk of CFS/ME following HPV vaccination was observed among girls in the first 6 birth cohorts offered HPV vaccine through the national immunisation programme in Norway.

Articles on the research:

Norwegian Institute of Public Health news blog: No increased risk of chronic fatigue syndrome after HPV vaccination

Daily mail article, 24 June: Controversial HPV vaccine DOESN’T cause chronic fatigue syndrome in teenage girls, major study confirms

Some girls have reported signs of chronic fatigue syndrome after having the jab
However, health officials across the world have always strongly denied the link
And new research on more than 175,000 Norwegian girls shows they are right

Pheonix rising forum comments

Science blog post, By Gretchen Vogel, 27 June 2017: Decision by Europe’s top court alarms vaccine experts

Did the European Union’s highest court just deal a blow to science? “Vaccines can be blamed for illness without scientific proof,”

In a major landmark ruling, the European Court of Justice has determined that a vaccine can be blamed for triggering a disease or causing harm even when there isn’t any scientific evidence to establish a link.

This opens the door to claims from the many thousands of parents who have been blocked from being awarded damages after their child suffered a long-term health problem following vaccination.

The Telegraph online post, by Sarah Knapton, 22 June 2017: European Court of Justice ruling could open floodgates for spurious vaccination claims 

The European Court of Justice has been accused of undermining Britain’s vaccination programme after ruling that patients can sue for illnesses they believe were caused by jabs, even when there is no scientific evidence.

The EU’s highest court said that if a number of healthy people developed a disease shortly after receiving a vaccine then that would serve as enough proof to bring a claim.

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Carers of children with ME ‘accused of fabrication’

Posted on 06/28/2017 by wames

BBC News England, 27 June 2017: Carers of children with ME ‘accused of fabrication’

Chronic Fatigue Syndrome, or ME, affects about 25,000 children in the UK
A “significant number” of those caring for children with ME have been accused of fabricating their child’s illness, a survey has found.

The charity Action for ME said a safeguarding referral to a child protection team had been made against one in five respondents.

Its chief executive said children and their carers faced the “double whammy” of an ME diagnosis and not being believed about their condition.

NHS England has been asked to comment.

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a debilitating disease that has a major impact on the lives of those affected. It causes persistent fatigue that does not go away with rest or sleep.

It affects about 25,000 children in the UK.

Out of 270 respondents to the survey, one in five said they had had a safeguarding referral to a child protection team made against them.

Half of the referrals involved allegations that parents had fabricated or induced their child’s illness, although 70% of all the cases referred to social services were dropped within a year.

‘Lives stolen’
Sonya Chowdhury, CEO of Action for ME, which is based in Keynsham, near Bristol, said:

“Ninety-six per cent of the parents felt that their children’s care had been affected by a lack of understanding of ME and nearly 100% of parents were concerned their child had not been believed.

“If people are not believing a child about an illness even when there is a diagnosis, those children are facing a double whammy.

“Not only have they had their lives stolen as a result of illness, they’ve had their lives affected and traumatised as a result of the system.”

She said the charity would be carrying out further investigations into the claims.

England’s chief social worker Isabelle Trowler said:

“It’s important that all the professionals who work with young people have a firm understanding of conditions like ME and the impact these can have on their daily lives, so they can access the same opportunities as their peers.

“I have met and continue to meet with groups and organisations including Forward-ME, and will work collaboratively with them and a national network of social workers to further professional understanding of children with ME.”

An investigation of the survey and treatments for ME was on Radio 4’s File on 4 on Tuesday at 20:00 BST. Listen again

Read Dr Charles Shepherd’s comments on the programme in the comments section at our post: ‘Believe ME’ on BBC Radio 4 Tues 27 June 2017 at 8pm

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