Are current CFS criteria diagnosing different disease phenotypes?

Research abstract:

Are current chronic fatigue syndrome criteria diagnosing different disease phenotypes? by Laura Maclachlan, Stuart Watson, Peter Gallagher, Andreas Finkelmeyer, Leonard A. Jason, Madison Sunnquist, Julia L. Newton, in PLoS ONE 12(10) [Published: October 20, 2017]

Importance:

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms diagnosed with a number of different polythetic criteria. Heterogeneity across these diagnostic criteria is likely to be confounding research into the as-yet-unknown pathophysiology underlying this stigmatised and debilitating condition and may diagnose a disease spectrum with significant implications for clinical management. No studies to date have objectively investigated this possibility using a validated measure of CFS symptoms–the DePaul Symptom Questionnaire (DSQ).

Objective:

To examine whether current CFS diagnostic criteria are identifying different disease phenotypes using the DSQ.

Design:

Case control study.

Setting:

Clinical Research Facility of the Royal Victoria Infirmary, Newcastle upon Tyne, UK.

Participants:

49 CFS subjects and ten matched, sedentary community controls, excluded for co-morbid depression.

Main outcomes and measures:

Self-reported autonomic and cognitive features were assessed with the Composite Autonomic Symptom Score (COMPASS) and Cognitive Failures Questionnaire (COGFAIL) respectively.

Objective autonomic cardiovascular parameters were examined using the Task Force® Monitor and a battery of neuropsychological tests administered for objective cognitive assessment.

Results:

Self-reported autonomic and cognitive symptoms were significantly greater in CFS subjects compared to controls. There were no statistically significant differences in objective autonomic measures between CFS and controls. There were clinically significant differences between DSQ subgroups on objective autonomic testing.

Visuospatial memory, verbal memory and psychomotor speed were significantly different between DSQ subgroups.

Conclusions and relevance:

The finding of no significant differences in objective autonomic testing between CFS and control subjects may reflect the inclusion of sedentary controls or exclusion for co-morbid depression. Consistent exclusion criteria would enable better delineation of these two conditions and their presenting symptoms.

Findings across CFS subgroups suggest subjects have a different disease burden on subjective and objective measures of function, autonomic parameters and cognitive impairment when categorised using the DSQ. Different CFS criteria may at best be diagnosing a spectrum of disease severities and at worst different CFS phenotypes or even different diseases. This complicates research and disease management and may contribute to the significant stigma associated with the condition.

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Jennifer Brea speaks about her film Unrest in UK media

Jennifer Brea and her film Unrest

Film director Jennifer Brea is visiting the UK to support the screening of her film Unrest in Parliament in London on 25 October 2017.

BBC Radio Bristol Interview with Dr Phil Hammond  26 October 2017.  Starts at 2 hrs 21 [Available until 18 Nov 2017

BBC World Service programme Outlook, 26 Oct 2017, features the background story of Jennifer Brea. Starts at 26 mins

thebmjopionion, 4 October 2017: Julian Sheather: Unrest

Unrest is heroic filmmaking. It takes a mysterious, stigmatized and invisible disorder and brings the condition and its sufferers into clear light. It is a tribute to the filmmaker and her extraordinary husband. And also a reminder, if we need it, that the world of human suffering has not been mapped in its entirety by medicine.

The Telegraph, 24 October 2017: Could this documentary change the way we perceive chronic fatigue syndrome?

Express, 23 October 2017: THIS mysterious condition affects millions more than MS – but you probably don’t know it

ME Association review of Unrest in Parliament: “I cannot recall a parliamentary meeting where we have had so much genuine interest in ME/CFS” 26 October 2017

ITV news interview with Jennifer Brea and Omar Wasow, 18 October 2017

Times, 17 October 2017:  Our lives were frozen by chronic fatigue syndrome

As Jennifer Brea’s chronic illness worsened and she spent more and more time confined to bed, she became increasingly active in her dreams. “Every night I’d have these incredibly kinetic dreams. I was flying or running up mountains. I’d wake up in the morning and realise that I was still in the same bedroom, and many mornings felt really disappointed that I was still alive.”

Guardian, 19 October 2017: Unrest review – powerful documentary about chronic fatigue syndrome

Jennifer Brea uses her own experience and others to build up a multifaceted portrait of the condition and the toll it takes

Cosmopolitan, 18 Oct 2017: What it’s like to live with an incurable illness no-one believes is real

Jennifer Brea was 28 when ME began to suck the life out of her. She was eventually left bed-bound, but doctors insisted tests showed there was nothing biologically wrong.

theupcoming.co.uk, 20 October 2017: “Picking up the camera was really an act of survival”: An interview with Unrest filmmaker Jennifer Brea 

Ahead of the UK release of Jennifer Brea’s widely acclaimed documentary Unrest, which details her experiences coping with chronic fatigue syndrome, we caught up with the filmmaker to discuss finding meaning in a meaningless experience, and how she finally found her voice again through the “magic” of film.

Join WAMES in bringing Jennifer’s film and campaign to Wales: read about #TimeForUnrestWales campaign

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NHS retrospective healthcare funding claims – register your intent to claim

NHS Retrospective Healthcare Funding Claims

People who believe their care should have been funded by the NHS are being encouraged by the Welsh Government to register their intent to make a claim.

 

People who think they, or someone they care for, may have been eligible for Continuing NHS Healthcare but paid for all, or part, of their care can submit a claim.

 

Potential claimants have until October 31st 2017 to register their intent to make a claim for continuing healthcare costs which were incurred between 1 October 2015 and 31 October 2016.

The NHS will provide advice to claimants and will complete all of the work required to review their case free of charge. This is not a legal process and there is no requirement for people to appoint a solicitor. However, if a solicitor is used, these costs cannot be reimbursed. All claims will be reviewed within six months of the NHS having all the information that it needs. Information on how to submit a claim can be found here

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Show others what living with ME is like through the WAMES’ photo project

ME and my world – a WAMES photo project

ME is a complex and often misunderstood illness.

Throughout 2018 WAMES will be exploring a number of ways to raise awareness of our condition.

To begin with, through a series of portraits and snapshots, the ‘ME and my world’ project aims to show others just what living with the illness is like.

We want to show what your ME world is, what happens when things are really bad, the small things you do to keep yourself going and the interests you have that helped get you through. We want to show the way ME affects people’s lives and how it affects their world and those around them.

Show others what your ME world is like

Take part by observing and recording your life over the next few months.  If you would be willing to be photographed or just want to know more, then please email us at WAMES admin@wames.org.uk

Alternatively aim to send in your own photos that you feel illustrate your struggle with ME.

Tom Martin, photographer (and person with ME) will be overseeing this project.

 

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Rethinking childhood adversity in CFS

Research abstract:

Rethinking childhood adversity in chronic fatigue syndrome, by James E Clark, Sean L Davidson, Laura Maclachlan, Julia L Newton, Stuart Watson in Fatigue: Biomedicine, Health & Behavior [Published online: 10 Oct 2017]

Background:
Previous studies have consistently shown increased rates of childhood
adversity in chronic fatigue syndrome (CFS). However, such
aetiopathogenic studies of CFS are potentially confounded by
co-morbidity and misdiagnosis particularly with depression.

Purpose:
We examined the relationship between rates of childhood adversity using
two complimentary approaches (1) a sample of CFS patients who had no
lifetime history of depression and (2) a modelling approach.

Methods:
Childhood trauma questionnaire (CTQ) administered to a sample of 52
participants with chronic fatigue syndrome and 19 controls who did not
meet criteria for a psychiatric disorder (confirmed using the Structured
Clinical Interview for DSM-IV). Subsequently, Mediation Analysis (Baye’s
Rules) was used to establish the risk childhood adversity poses for CFS
with and without depression.

Results:
In a cohort of CFS patients with depression comprehensively excluded,
CTQ scores were markedly lower than in all previous studies and, in
contrast to these previous studies, not increased compared with healthy
controls. Post-hoc analysis showed that CTQ scores correlated with the
number of depressive symptoms during the lifetime worst period of low
mood. The probability of developing CFS given a history of childhood
trauma is 4%, a two-fold increased risk compared to the general
population. However, much of this risk is mediated by the concomitant
development of major depression.

Conclusions
The data suggests that previous studies showing a relationship between
childhood adversity and CFS may be attributable to the confounding
effects of co-morbid or misdiagnosed depressive disorder.

Keywords: Childhood adversity, chronic fatigue syndrome, modelling,
childhood trauma, depression

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WAMES is looking for a new treasurer

Are you good with figures?

Liz Chandler has been our treasurer for over 10 years, but now needs to step down.

The role of the treasurer is to:

  • Maintain an overview of WAMES’ financial affairs and advise the committee on budgets
  • Ensure that proper financial records and procedures are maintained

To find out more contact Jan jan@wames.org.uk

Please note:

  • Training can be arranged
  • Most tasks can be carried out from home
  • The post is available as ‘role share’
  • You don’t have to be knowledgeable about ME
  • Your work will be critical for continued campaigning and awareness raising in Wales!
  • A minimum 3 year commitment would be preferred
  • Volunteer roles are good preparation for job hunting, and can be included on CVs
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Report Hate Crime!

This week is National Hate Crime Awareness week

14th to 21st October 2017

A hate crime is where an individual is targeted because of their identity or perceived difference. It could be an act of violence or hostility or discrimination. Victims may have been bullied harassed or abused.

Hate crime destroys lives and isolates vulnerable individuals and communities. It is known to happen but it remains under reported. Left unreported, offenders are free to continue committing this crime. We want this to change. We want everyone to encourage and support people to talk about hate crime and most importantly REPORT IT.

  • If anyone tells you that they have been a victim, listen to their story and encourage them to report it
  • If you witness it, report it… You don’t have to be a victim to make a report
  • In an emergency call the police 999, if it is not an emergency call  101
  • If you don’t want to report to the police you could contact your local council.
  • Report online https://www.reporthate.victimsupport.org.uk/ or ring 0300 30 31 982 (FREE) 24/7
  • Download Hate Crime is wrong leaflet
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#TimeForUnrestWales campaign

WAMES will be supporting the international #TimeForUnrest campaign over the next year alongside our own Wales specific campaigns.

#TimeForUnrest
is a global campaign to grow and strengthen the global movement for equal recognition, education, research, and funding for ME.

The campaign focuses around the powerful award winning film Unrest, by Jennifer Brea.

Find out more about the film at https://www.unrest.film/trailer/

Can you help WAMES raise awareness and get the film screened  around Wales during 2018?

Join one of the groups organising a screening:

  • Welsh Government
  • Cardiff MEDSOC – medical students
  • Aberystwyth – Jan Russell
  • Cardiff – MESiG

Please get in touch with Jan if you would like to know more about how to arrange a screening in your area. Email her at jan@wames.org.uk

Read more about the social media campaign at https://www.unrest.film/time-for-unrest/

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Sleep-wake rhythm disturbances & perceived sleep in adolescent CFS

Research abstract:

Sleep-wake rhythm disturbances and perceived sleep in adolescent chronic fatigue syndrome, by M Pedersen, M Ekstedt, MC Småstuen, VB Wyller, D Sulheim, E Fagermoen, A Winger, E Pedersen, H Hrubos-Strøm in J Sleep Res. 2017 Oct; 26(5):595-601. [Epub 2017 May 4]

Chronic fatigue syndrome (CFS) is characterized by long-lasting, disabling and unexplained fatigue that is often accompanied by unrefreshing sleep.

The aim of this cross-sectional study was to investigate sleep-wake rhythm and perceived sleep in adolescent CFS patients compared to healthy individuals. We analysed baseline data on 120 adolescent CFS patients and 39 healthy individuals included in the NorCAPITAL project.

Activity measures from a uniaxial accelerometer (activPAL) were used to estimate mid-sleep time (mid-point of a period with sleep) and time in bed. Scores from the Karolinska Sleep Questionnaire (KSQ) were also assessed.

The activity measures showed that the CFS patients stayed significantly longer in bed, had a significantly delayed mid-sleep time and a more varied sleep-wake rhythm during weekdays compared with healthy individuals.

On the KSQ, the CFS patients reported significantly more insomnia symptoms, sleepiness, awakening problems and a longer sleep onset latency than healthy individuals.

These results might indicate that disrupted sleep-wake phase could contribute to adolescent CFS; however, further investigations are warranted.

 

– The activity measures showed that the CFS patients stayed significantly longer in bed, had a significantly delayed mid-sleep time and a more varied sleep-wake rhythm during weekdays compared with healthy individuals. On the KSQ, the CFS patients reported significantly more insomnia symptoms, sleepiness, awakening problems and a longer sleep onset latency than healthy individuals. These results might indicate that disrupted sleep-wake phase could contribute to adolescent CFS; however, further investigations are warranted

 

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AfME invites PhD proposals for biomedical research pilot projects

Action for ME blog post, 10 Oct 2017: Call for biomedical PhD research proposals now open

Action for M.E. is inviting PhD proposals for high-quality biomedical research pilot projects that will address the biology of Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS). This call builds on priorities identified by people affected by M.E. through an Action for M.E. survey and is targeted at supporting a PhD studentship for up to three years with up to £46,500, with 50% funding to be matched by the applicant’s university.

 

The focus of this initiative is to support high-quality, innovative biomedical research ideas that have the potential to increase the current knowledge base of M.E./CFS and to support new career researchers into the field.

This call is open to UK-based researchers, including those working in partnerships, who can show they will direct the proposed research and be actively engaged in carrying it through.

If you’re interested in applying, you can find more information and a copy of the research proposal form that you’ll need to fill out on our research page. Proposals must be submitted by email to research@actionforme.org.uk by 4pm, Monday 27 November 2017

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