NICE investigates if there’s a need to update CFS/ME guideline

Posted on 12/07/2016 by wames

As a stakeholder WAMES has been informed about NICE plans regarding the 2007 CFS/ME guideline and will be participating fully:

I am writing to advise you that NICE has commenced its formal check of the need to update the clinical guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management.

In 2014 this guideline was added to the clinical guidelines static list as no quality standard had been commissioned for this topic and no major ongoing studies completing within the next 3-5 years were identified. Guidelines on the static list remain in existence and will be considered for new evidence at 5-year intervals. In the case of CG53 the static list review was due in 2019. However, if important new evidence is notified we can remove the guideline from the static list and carry out a full guideline surveillance review.

In 2015 we were advised of 3 US reports that indicated there are likely to be changes in the diagnostic criteria in this field that will have implications for the guideline in the future, but not until after the proposed 2 year validation of the diagnostic criteria is completed.  In view of these reports we have decided to commence a formal check of the need to update the guideline earlier than the 5 year interval.  We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the review.

The guideline surveillance review has been scheduled for review at the beginning of 2017 and a decision is expected to be published by summer 2017. A surveillance report will be developed to communicate the update decision and provide a commentary on approximately 3 articles felt to be of particular interest within this topic.  The exact publication date will depend on the progress of the review and the proposed update decision.  We will email stakeholders when the report has been published.

There will be a 2-week consultation with registered stakeholders if information summarised indicates that a ‘no update’ decision should be considered.  There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders. It is important to note that if the decision is to update the guideline then the update will be developed in accordance with NICE processes for updating guidelines.  The timescales for any update of the guideline will depend on the size and extent of the required update and available capacity.

Consultation dates and times are posted in advance on the guideline page on the NICE website, and stakeholders are reminded by email.

Administrator Surveillance Reviews

NICE Centre for Guidelines

National Institute for Health and Care Excellence Level 1A, City Tower, Piccadilly Plaza, Manchester M1 4BT     www.nice.org.uk

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Epistemic injustice in healthcare encounters: evidence from CFS/ME

Posted on 12/06/2016 by wames

Research abstract:

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice.

While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors (and medical students) display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by healthcare professionals, and many patients vocally oppose the effectiveness, and the conceptualisation, of their illness as psychologically treatable.

We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice (2007). We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the (often unintentional) marginalisation of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness.

Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome by Charlotte Blease, Havi Carel, Keith Geraghty in J Med Ethics [Published Online 5 December 2016]

Comment on this article:

BMJ blogs: Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome. Guest Post: Charlotte Blease & Keith Geraghty, 6 Dec 2016

Some illnesses are uncool.

That might sound like an inflammatory comment – especially for a medical journal, yet perhaps the biggest concealed fact in medicine is that hierarchies of diseases exist among patients and healthcare professionals. A caste system of illness influences how patients perceive their health complaints, whilst health professionals also hold biases that influence how they treat and rank patients in the medical pecking order.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list.   read more

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Newcastle University experts in hunt for “smoking gun” of CFS/ME

Posted on 11/30/2016 by wames

Northern echo news article, by Tony Kearney, 29 Nov 2016: Newcastle University experts in hunt for “smoking gun” of chronic fatigue syndrome ME

UNIVERSITY scientists are leading research to develop a simple blood test for the chronic fatigue syndrome ME.

Researchers from Newcastle and Oxford Universities have been awarded £50,000 funding from the ME Association to spend 12 months analysing nearly 300 blood samples, looking at metabolomics – chemical clues that are left behind after changes in cells.

Finding similarities in the cells of patients diagnosed with ME could help identify a test for the condition – and ultimately a cure.

Dr Charles Shepherd, medical adviser for the ME Association, said: “Put simply, this is the hunt for a smoking gun.

“This could be a major breakthrough.

He added: “Once and for all, we would be able to dispel the myth that ME should be treated as a psychological illness which is primarily in the mind.”

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Podcast about CFS/ME research with Melbourne researcher Chris Armstrong

Posted on 11/30/2016 by wames

insidestory.com.au, 24 Nov 2016: In Melbourne, progress on chronic fatigue

Peter Clarke talks to Bio21 researcher Chris Armstrong about new research that challenges popular views of this enigmatic illness

With its debiliating symptoms – fatigue, “brain fog,” pain, gastrointestinal disorders – and its elusive causes, chronic fatigue syndrome has been one of the great unsolved medical mysteries. Now, a growing number of research teams around the world are tackling the challenge of diagnosing and treating the illness using new medical research techniques.

By looking at patients’ genetics and the changing pattern of their metabolites – the molecules produced by their individual metabolisms – these researchers have made enormous progress in uncovering patterns exclusive to the condition and countering once-popular psychological explanations.

Among the research centres working on CFS (also known as myalgic encephalomyoletis) is the Bio21 Institute at the University of Melbourne. Earlier this month, amid the centrifuges, mass spectrometers and NMR cylinders used to identify shifts in biological material, Peter Clarke spoke to Bio21 researcher Chris Armstrong.

The Institute’s work is supported by the Mason Foundation, with assistance for NMR equipment from the Australian Research Council.

Read more and listen to podcast. Duration: 24 mins 11 secs

PETER CLARKE
Peter Clarke is a Melbourne-based broadcaster, writer and educator who pioneered national talkback on Australian radio as the inaugural presenter of Offspring (now Life Matters) on ABC Radio National.

Article on Chris Armstrong by Cort Johnson

University of Melbourne blog post, by Florienne Loder, University of Melbourne: Chronic fatigue syndrome a kick in the guts,

Research suggests that chronic fatigue is linked to gut bacteria and how our bodies convert food into energy

 

 

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Experiences of GP continuity among women with CFS/ME in Norway

Posted on 11/29/2016 by wames

Research abstract:

Background:  Continuity of care is important for patients with chronic illness in need of coordinated healthcare services from multiple providers. Little is known about how patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience continuity of GP care.

This study explores how women with CFS/ME experience GP care across the three dimensions of continuity: informational, management, and relational continuity.

Methods:  This cross-sectional study uses questionnaire data collected from members of The Norwegian ME Association. Descriptive statistics and logistic regressions were used to estimate experiences of continuity, and associations with age, education, self-rated degree of CFS/ME, duration of the GP relation (GP duration), and number of GP visits for
CFS/ME-related issues during the previous year (GP frequency).

Results: Almost two-thirds of participants reported positive experiences across all three dimensions of GP continuity of care; 64.4% for informational, 64.1% for management, and 77.2% for relational continuity. Lower educational attainment was associated with more negative experiences of informational continuity (primary school only compared to university educated: odds ratio [OR] 0.12, confidence interval [CI] 0.03-0.49, p = 0.003).

Compared to participants aged 40-59 years, those aged 60+ years were significantly less likely to have experienced poor (negative) management continuity (OR 0.25, CI 0.09-0.76, p = 0.014). A GP relationship of three or more years was associated with positive
experiences of relational continuity (OR 2.32, CI 1.09-4.95, p = 0.030).

Compared to those with moderate CFS/ME, those who graded their CFS/ME as severe or very severe were significantly more likely to have negative experiences of relational continuity (OR 0.38, CI 0.14-0.99, p = 0.047).

Conclusions:  A large proportion of participants experienced all three aspects of
continuity of GP care (especially the relational dimension) positively. Informational and management continuity scores were moderately lower. Our results suggest greater emphasis on information giving, feedback, and better coordination of care to be good strategies for practice improvement for this patient group.

Experiences of general practitioner continuity among women with chronic fatigue syndrome/myalgic encephalomyelitis: a cross-sectional study, by Anne Helen Hansen, Olaug S. Lian in BMC Health Services Research Vol 16, #1, p 650, Published: 14 November 2016

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A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors

Posted on 11/28/2016 by wames

Research abstract:

BACKGROUND:
Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME) is a debilitating condition of unknown aetiology. It is characterized by a range of physiological effects including neurological, sensory and motor disturbances. This study examined candidate genes for the above clinical manifestations to identify single nucleotide polymorphism (SNP) alleles associated with CFS/ME compared with healthy controls.

METHODS:
DNA was extracted and whole genome genotyping was performed using the HumanOmniExpress BeadChip array. Gene families for transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors, and acetylcholinesterase were targeted. The frequency of each SNP and their association between CFS/ME and healthy controls was examined using Fisher’s exact test, and to adjust for multiple testing, False Detection Rate (FDR) and Bonferroni corrections were applied (p < 0.05).

RESULTS:
The study included 172 participants, consisting of 95 Fukuda defined CFS/ME patients (45.8 ± 8.9; 69 % female) and 77 healthy controls (42.3 ± 10.3; 63 % female). A total of 950 SNPs were included for analysis. 60 significant SNPs were associated with CFS/ME compared with healthy controls. After applying FDR and Bonferroni corrections, SNP rs2322333 in adrenergic receptor α1 (ADRA1A) was higher in CFS/ME compared with healthy controls (45.3 % vs. 23.4 %; p = 0.059). The genotype class that was homozygous minor (AA) was substantially lower in CFS/ME compared with healthy controls (4.2 % vs. 24.7 %).

CONCLUSIONS:
This study reports for the first time the identification of ADRA1A and a possible association between CFS/ME and genotype classes. Further examination of the functional role of this class of adrenergic receptors may elucidate the cause of particular clinical manifestations observed in CFS/ME.

A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by Johnston S, Staines D, Klein A, Marshall-Gradisnik S in BMC Med Genet. 2016 Nov 11;17(1):79.

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Dr Phil Hammond writes about the ‘ME cluster bomb’

Posted on 11/28/2016 by wames

Private eye Medicine Balls column, 25 November 2016: ‘ME cluster bomb’  [Written by ‘M.D.’, the nom de plume of Dr Phil Hammond and reproduced by the ME Association]:

MD’s greatest regret as a junior doctor was not to take the time to understand ME (myalgic encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME was largely psychological, and an illness of the middle classes (“yuppie flu”).

Both Beliefs are entirely wrong and have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring sleight that it’s “all in the mind” or due to “faulty beliefs”. Although ample evidence exists of biological abnormalities in patients with ME, we are still some way from definitive pathological tests and effective drug treatments.

ME is often used synonymously with chronic fatigue syndrome (CFS) but the illness is far more than fatigue. MD’s view – working in an NHS clinic for young people with chronic fatigue – is that “CFS/ME” is a cluster of disorders which centre not just on severe, disabling fatigue but on post-exertional malaise (PEM), This means that previously very active patients can suddenly crash after physical or cognitive activity, which completely wipes them out for at least 24 hours and often much longer, with multiple unpleasant symptoms. Anyone who has lived through or observed such crashes is left in no doubt that the disease isn’t psychological.

Read more

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Making a difference for ME in Wales – WAMES team coordinator opportunities

Posted on 11/24/2016 by wames

Would you like to help make a difference for ME in Wales but are not sure you have enough time or good health to volunteer in a big way?

To make it easier for people to join in we are setting up Teams in 2017 so people can work together in a way that suits them. The teams will look for ways for a wide range of people to get involved whether you:

  • are ill   or   healthy
  • mobile   or   bedbound
  • knowledgeable about ME   or   know very little
  • have lots of free time   or   just a few minutes each week
  • can commit regularly   or   prefer one-off activities
  • are retired   or   need work experience
  • want to work on your own   or   with others

 

Together we can make more of a difference!

 

We are advertising widely for  volunteer Team coordinators to help oversee our activities. They will build up an overview of what needs to be done, how we can achieve it and will help individuals to play a part.

Download adverts for:                                   Volunteering coordinator

Fundraising coordinator     Communications coordinator

If you are unable to apply for a Team coordinator role please help by passing on the info to others

Teams – find out more about the teams we are developing.  We are building up to getting underway in early 2017. team-hands

Register your willingness to do something for ME in Wales:

I want to make a difference for ME in Wales

Once you let us know what you are interested in or experienced in, we can discuss how you can get involved.

 

More about: Making a difference for ME in Wales

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Prevalence of POTS in Dutch people with CFS

Posted on 11/23/2016 by wames

Research abstract:

BACKGROUND: Postural orthostatic tachycardia syndrome (POTS) is considered a diagnostic marker for chronic fatigue syndrome (CFS).

OBJECTIVES: The aims of this study were to (i) compare POTS prevalence in a CFS cohort with fatigued patients not meeting CFS criteria, and (ii) assess activity, impairment and response to cognitive behavioural therapy (CBT) in CFS patients with POTS (POTS-CFS) and without POTS (non-POTS-CFS).

METHODS: Prospective cohort study at the Radboud University Medical Centre in the Netherlands. Between June 2013 and December 2014, 863 consecutive patients with persistent fatigue were screened. Patients underwent an active standing test, filled out questionnaires and wore an activity-sensing device for a period of 12 days.

RESULTS: A total of 419 patients with CFS and 341 non-CFS fatigued patients were included in the study. POTS prevalence in adult patients with CFS was 5.7% vs. 6.9% in non-CFS adults (P = 0.54). In adolescents, prevalence rates were 18.2% and 17.4%, respectively (P = 0.93). Adult patients with POTS-CFS were younger (30 ± 12 vs. 40 ± 13 years, P = 0.001) and had a higher supine heart rate (71 ± 11 vs. 65 ± 9 beats per min, P = 0.009) compared with non-POTS-CFS patients. Severity and activity patterns did not differ between groups.

In patients with CFS, criteria for Systemic Exertion Intolerance Disease (SEID) were met in 76% of adults and 67% of adolescents. In these patients with CFS fulfilling the SEID criteria, the prevalence of POTS was not different from that in the overall CFS population. POTS-CFS adolescents had less clinically significant improvement after CBT than non-POTS-CFS adolescents (58% vs. 88%, P = 0.017).

CONCLUSION: In adults with CFS, the prevalence of POTS was low, was not different from the rate in non-CFS fatigued patients and was not related to disease severity or treatment outcome. In POTS-CFS adolescents, CBT was less successful than in non-POTS-CFS patients. The evaluation of POTS appears to be of limited value for the diagnosis of CFS.

Postural orthostatic tachycardia is not a useful diagnostic marker for chronic fatigue syndrome, by Roerink ME, Lenders JW, Schmits IC, Pistorius AM, Smit JW, Knoop H, van der Meer JW in J Intern Med. 2016 Oct 2 [Epub ahead of print]

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WAMES challenge – Easyfundraising for Black Friday

Posted on 11/23/2016 by wames

Did you know that when you’re shopping online for Black Friday deals you could be raising a free donation for WAMES?

 

There are over 3,100 shops and sites on board ready to make a donation, including Amazon, John Lewis and eBay and it doesn’t cost you a penny extra!

To get started, all you have to do is:   Join   Shop   Raise

468x60_ef_banner1. Join          Head to  https://www.easyfundraising.org.uk/causes/wames/ and sign up for free.

2. Shop       Every time you shop online, go to easyfundraising first, pick the retailer you want and start shopping.

3. Raise       After you’ve checked out, that retailer will make a donation to us and it won’t cost you a penny extra!

Please help us when you’re shopping online for Black Friday deals – there are no catches or hidden charges and WAMES will be really grateful for your donations.

PS you can download an app for Android & iOS a ‘donation reminder’ for your PC

Thank you for your support.

easyfundraising-logowall-500x400-3

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