Is health anxiety aka hypochondria common in people with CFS?

Hypochondria (health anxiety) is excessive worrying about your health, to the point where it causes great distress and affects your everyday life.

Some people with health anxiety have a medical condition, which they worry about excessively. Others have medically unexplained symptoms, such as chest pain or headaches, which they are concerned may be a sign of a serious illness, despite the doctor’s reassurance.   [from: NHS Direct Wales]

Research from the Bristol Chronic Fatigue Syndrome/ME Service and Department of Psychology, University of Bath, UK:

Abstract:

Objectives:
There is a lack of research examining the incidence of health anxiety in chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME), despite this being an important research area with potentially significant clinical implications. This preliminary study aimed to determine the incidence of anxiety and depression, more specifically health anxiety, in a sample of CFS/ME patients over a 3-month period.

Design:
The research was a cross-sectional questionnaire-based study, using a consecutive sample of patients who were assessed in a CFS/ME service.

Method:
Data were taken from the Short Health Anxiety Inventory and the Hospital Anxiety and Depression Scale to identify incidence of anxiety, depression, and health anxiety.

Results:
Data were collected from 45 CFS/ME patients over the sampling period. Thirty-one patients (68.9%) scored above the normal range but within the subclinical range of health anxiety, and 19 patients (42.2%) scored within the clinically significant health anxiety range. Anxiety and depression were common, with prevalence rates of 42.2% and 33.3% respectively, which is comparable to data found in a recent large-scale trial.

Conclusions:
Health anxiety in CFS/ME patients is likely to be common and warrants further investigation to provide a better insight into how this may influence treatment and symptom management.

Practitioner points

  • Anxiety and depression were common in a sample of chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) patients, with a high proportion meeting criteria for severe health anxiety.
  • While CFS/ME and health anxiety are distinct and separate conditions, it is unsurprising that patients with CFS/ME, who commonly report feeling ‘delegitimized’, may experience high levels of anxiety relating to their physical symptoms.
  • Clinicians should consider screening for health anxiety due to the possible clinical implications for treatment; mutual maintenance may negatively influence treatment success in a complex condition such as CFS/ME.
  • Health anxiety has been found to be common across other chronic medical conditions but has been shown to be effectively treated with appropriately tailored interventions.

Anxiety and depression in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): Examining the incidence of health anxiety in CFS/ME, by Jo Daniels, Amberly Brigden, Adela Kacorova in Psychology and Psychotherapy [Preprint February 28, 2017]

Comment:

As the researchers indicate, health anxiety has been researched and found to exist in other chronic conditions e.g. in Multiple sclerosis (Kehler, & Korostil).  The treatment often recommended for this is CBT.

 

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Cytokine inhibition in CFS

Research abstract:

Background:

Interleukin-1 (IL-1), an important proinflammatory cytokine, is suspected to play a role in chronic fatigue syndrome (CFS).

Objective:

To evaluate the effect of subcutaneous anakinra versus placebo on fatigue severity in female patients with CFS.

Design:

Randomized, placebo-controlled trial from July 2014 to May 2016. Patients, providers, and researchers were blinded to treatment assignment. (ClinicalTrials.gov: NCT02108210)

Setting:

University hospital in the Netherlands.

Patients:

50 women aged 18 to 59 years with CFS and severe fatigue leading to functional impairment.

Intervention:

Participants were randomly assigned to daily subcutaneous anakinra, 100 mg (n = 25), or placebo (n = 25) for 4 weeks and were followed for an additional 20 weeks after treatment (n = 50).

Measurements:

The primary outcome was fatigue severity, measured by the Checklist Individual Strength subscale (CIS-fatigue) at 4 weeks.

Secondary outcomes were level of impairment, physical and social functioning, psychological distress, and pain severity at 4 and 24 weeks.

Results:

At 4 weeks, 8% (2 of 25) of anakinra recipients and 20% (5 of 25) of placebo recipients reached a fatigue level within the range reported by healthy persons. There were no clinically important or statistically significant differences between groups in CIS-fatigue score at 4 weeks (mean difference, 1.5 points [95% CI, −4.1 to 7.2 points]) or the end of follow-up. No statistically significant between-group differences were seen for any secondary outcome at 4 weeks or the end of follow-up. One patient in the anakinra group discontinued treatment because of an adverse event. Patients in the anakinra group had more injection site reactions (68% [17 of 25] vs. 4% [1 of 25]).

Limitation:

Small sample size and wide variability in symptom duration; inclusion was not limited to patients with postinfectious symptoms.

Conclusion:

Peripheral IL-1 inhibition using anakinra for 4 weeks does not result in a clinically significant reduction in fatigue severity in women with CFS and severe fatigue.

Primary Funding Source:

Interleukin Foundation and an independent donor who wishes to remain anonymous.

Cytokine Inhibition in Patients With Chronic Fatigue Syndrome: A Randomized Trial by Megan E. Roerink MD; Sebastian J.H. Bredie, MD, PhD; Michael Heijnen; Charles A. Dinarello, MD; Hans Knoop, PhD; Jos W.M. Van der Meer, MD, PhD in Annals of Internal Medicine [Published online: 7 March 2017]

Comments:

ME association blog post, 8 March 2017, Dr Charles Shepherd: Why we shouldn’t dismiss the role of pro-inflammatory cytokines in ME/CFS: comment on Annals of Internal Medicine paper

Phoenix rising ME/CFS Forum posts, 7 March+: Comments by Prof Jonathan Edwards and others

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Standard research criteria would aid ME/CFS research

Research abstract:

Background:

The Institute of Medicine (IOM) recently developed clinical criteria for what had been known as chronic fatigue syndrome.

Given the broad nature of the clinical IOM criteria, there is a need for a research definition that would select a more homogenous and impaired group of patients than the IOM clinical criteria. At the present time, it is unclear what will serve as the research definition.

Purpose:

The current study focused on a research definition which selected homebound individuals who met the four IOM criteria, excluding medical and psychiatric co-morbidities.

Methods:

Our research criteria were compared to those participants meeting the IOM criteria. Those not meeting either of these criteria sets were placed in a separate group defined by six or more months of fatigue. Data analyzed were from the DePaul Symptom Questionnaire and the 36-item Short-Form Health Survey (SF-36). Due to unequal sample sizes and variances, Welch’s F tests and Games-Howell post-hoc tests were conducted.

Results:

Using a large database of over 1000 patients from several countries, we found that those meeting a more restrictive research definition were even more impaired and more symptomatic than those meeting criteria for the other two groups.

Conclusion:

Deciding on a particular research case definition would allow researchers to select more comparable patient samples across settings, and this would represent one of the most significant methodologic advances for this field of study.

Clinical criteria versus a possible research case definition in chronic fatigue syndrome/ myalgic encephalomyelitis by Leonard A. Jason, Stephanie McManimen, Madison Sunnquist, Julia L. Newton & Elin Bolle Strand in Fatigue: Biomedicine, Health & Behavior [Published online: 06 Mar 2017]

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Two year follow-up of sleep diaries & polysomnography in CFS

Research abstract:

Background:
Chronic fatigue syndrome (CFS) is a prevalent and debilitating symptom complex of unknown aetiology. Up to 96.8% of people with CFS report unrefreshing sleep and many describe, in qualitative interviews, changes in sleep over the course of their illness.

Purpose:
To establish whether subjective and objective sleep parameters change over a two-year follow-up period in patients with CFS.

Methods
Twenty-two participants with CFS were recruited during routine consultations at a clinic in the North-East of England. All had their sleep characterised in a previously published cross-sectional study. Two were excluded from this analysis because they fulfilled criteria for a primary sleep disorder. The remaining 20 were contacted and 15 repeated fatigue- and sleep-quality questionnaires and sleep diaries, two years after their sleep was first characterised. Seven participants also repeated two consecutive nights of polysomnography. Paired statistical tests were used to compare follow-up with baseline measures.

Results:
Subjective questionnaires and sleep dairies did not show differences over two years follow-up. However, polysomnography demonstrated a higher proportion of stage one sleep (P < .01) and more awakenings per hour (P = .04) at follow-up.

Conclusions:
This study is the first to longitudinally assess sleep parameters in people with CFS. The results suggest that subjective perceptions of sleep remain stable, although objective measures indicated a tendency towards increased periods of lighter sleep. However, the small number of participants increases the likelihood that observed differences are Type
I errors.

Two year follow-up of sleep diaries and polysomnography in chronic fatigue syndrome: A cohort study, by Sean L. Davidson, Zoe M. Gotts, Jason G. Ellis & Julia L. Newton in Fatigue: Biomedicine, Health & Behavior  [Preprint March 2, 2017]

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Inquiry into loneliness & isolation closing date 10 March 2017

The Welsh Government Health, Social Care and Sport Committee has launched an inquiry into loneliness and isolation. The closing date for responses is 10 March 2017

The Committee would welcome your views on any or all of the following points:

  • the evidence for the scale and causes of the problems of isolation and loneliness, including factors such as housing, transport, community facilities, health and wellbeing services;
  • the impact of loneliness and isolation on older people in terms of physical and mental health and wellbeing, including whether they disproportionately affect certain groups such as those with dementia;
  • the impact of loneliness and isolation on the use of public services, particularly health and social care;
  • ways of addressing problems of loneliness and isolation in older people, including interventions to specifically address the problems and other projects with wider aims.  Evidence for what works and the outcomes for older people in terms of health and wellbeing;
  • the extent to which initiatives to combat loneliness and isolation experienced by other groups may also help to address these issues for older people;
  • current policy solutions in Wales and their cost effectiveness, including the Ageing Well in Wales programme.  The approach taken by the Welsh Government in terms of maintaining community infrastructure and support, and using the legislative framework created in the Fourth Assembly, e.g. the Social Services and Wellbeing (Wales) Act 2014 and the Wellbeing of Future Generations (Wales) Act 2015.

Guidance

Submissions should be no longer than five sides of A4, with numbered paragraphs, and should focus on matters set out above. Please see guidance for those providing evidence for committees.

The deadline for responses is 10 March 2017.

Please send your views to: SeneddHealth@assembly.wales

Bilingual Policy

The Committee welcomes contributions in English or Welsh.

Disclosure of Information

You can find further details about how we will use your information at www.assembly.wales/InquiryPrivacy. Please ensure that you have considered these details carefully before submitting information to the Committee.

Committee address

Clerk: Sian Thomas

National Assembly for Wales
Cardiff Bay
Cardiff
CF99 1NA

Phone: 0300 200 6291

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Age Cymru Wales forecasts loneliness & isolation epidemic

WAMES is continually being made aware of  the isolation people with ME can feel.

Unfortunately years of limited contact with friends and family due to poor health can mean that loneliness becomes an even greater issue as people age and friends and family get in touch less often.

Finding the balance between giving people with ME space and support is very important for our mental health and quality of life.

Age Cymru Wales is campaigning against loneliness: No one should have no one – tackling loneliness and isolation in Wales

Loneliness and isolation are a daily reality for many older people – 75,000 older people in Wales have reported ‘always or often’ feeling lonely.

Age Cymru believes loneliness and isolation should be recognised and treated as a public health priority and we want local authorities to take the following steps:

  • Create safe, accessible built environments with places to meet that are easily accessible by integrated local public and community transport;
  • Involve older people in identifying and developing solutions to isolation;
  • Work with housing, transport, health, care, voluntary sector organisations and GPs to deliver practical and emotional help to tackle loneliness;
  • Provide services that prevent or manage loneliness and isolation at life stages  which are likely to increase loneliness, such as bereavement, having to stop driving or moving to a new home or residential care;
  • Agree specific local actions to reduce loneliness and monitor and evaluate their impact.

More stories:

BBC Wales: Wales ‘facing loneliness epidemic’ among elderly

South Wales evening post article, by E Perkins, 2 Mar 2017: Fears of loneliness epidemic will hit Wales unless action is taken

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‘Betwixt & between’ liminality in recovery stories from people with ME or CFS

Research abstract:

This paper explores experiences of 16 people claiming to have recovered from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) using the concept of liminality.

Liminality describes the status of those falling between socially recognised and medically sanctioned categories, and illuminates both the experience of illness and the process of recovery from ME/CFS.

The liminality experienced during illness was akin to that described by Turner with a degree of communitas among sufferers. As recovery progressed, participants stressed the percentage to which they had improved, and compared themselves with peers and themselves prior to the illness.

Recovery did not mean transition into a post-liminal phase, but involved a new liminality, characterised by straddling boundaries between illness and wellness.

Participants continued strategies such as rest, pacing and meditation. This second liminal state included difficulty in communicating the experience convincingly, and estrangement from the ME/CFS community.

Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.

‘Betwixt and between’; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), by Brian Brown, Kate Huszar, Rosemary Chapman in Sociology of Health & Illness 39:2 2017 [Preprint: February 27, 2017]

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Dyfed High Sheriff Awards for support groups

The Carmarthenshire ME Support Group and Cwtch-Pembrokeshire support group received awards from the High Sheriff of Dyfed for service to the community at a reception in Carmarthen on 15 February 2017.

Western Telegraph, 21 Feb 2017: CWTCH Pembrokeshire’s outstanding contribution recognised by Professor Medwin Hughes DL, High Sheriff of Dyfed

Carmarthen Journal, 25 February 2017: Shrievalty Awards – Carmarthenshire ME support group (Left to right: Rob Messenger, John James, Prof Medwin Hughes – High Sheriff)

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Caution needed when using online prescription services

BBC news article, by Dr Faye Kirkland, 3 March 2017: Buying medications online ‘can put health at risk’

People should be wary of buying medications on the internet after an investigation found “widespread failings” at some online providers, the Care Quality Commission (CQC) has said.

The watchdog inspected 11 internet prescription services in England, finding some “potentially presenting a significant risk to patients”.

The regulator said while some providers were well-run, others “cut corners”.

The CQC says it will visit providers and shut any putting patients at risk.

It follows a BBC Radio 5 Live investigation into online pharmacies selling antibiotics.

The CQC has published reports on urgent inspections of two websites: Treated.com, run by HR Healthcare, and MD Direct, which traded through Assetchemist.co.uk.

Prof Steve Field, the CQC’s chief inspector of general practice, said there was “little clinical oversight” in the way many websites sold medications.      Read more

More stories:

Daily Mail: Millions at risk as web chemists with little or no medical training dish out dangerous drugs without checks 

i news: Online health services could pose ‘significant’ risk to public

Guardian: CQC warns online doctor services may pose risk to public 

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Increased levels of intramuscular cytokines in patients with jaw muscle pain

Prof Julia Newton highlighted in 2015 that a high proportion of people with ME also have TMD

Research abstract:

BACKGROUND:

The aim of this study was to investigate cytokine levels in the masseter muscle, their response to experimental tooth-clenching and their relation to pain, fatigue and psychological distress in patients with temporomandibular disorders (TMD) myalgia.

METHODS:

Forty women, 20 with TMD myalgia (Diagnostic Criteria for TMD) and 20 age-matched healthy controls participated. Intramuscular microdialysis was performed to sample masseter muscle cytokines. After 140 min (baseline), a 20-minute tooth-clenching task was performed (50% of maximal voluntary contraction force). Pain (Numeric rating scale 0-10) and fatigue (Borg’s Ratings of Perceived Exertion 6-20) were assessed throughout microdialysis, while pressure-pain thresholds (PPT) were assessed before and after microdialysis. Perceived stress (PSS-10) and Trait Anxiety (STAI) were assessed before microdialysis.

RESULTS:

The levels of IL-6, IL-7, IL-8 and IL-13 were higher in patients than controls (Mann Whitney U-test; P’s < 0.05) during the entire microdialysis. IL-6, IL-8 and IL-13 changed during microdialysis in both groups (Friedman; P’s < 0.05), while IL-1β, IL-7 and GM-CSF changed only in patients (P’s < 0.01). IL-6 and IL-8 increased in response to tooth-clenching in both groups (Wilcoxon test; P’s < 0.05), while IL-7, IL-13 and TNF increased only in patients (P’s < 0.05). Patients had higher pain and fatigue than controls before and after tooth-clenching (P < 0.001), and lower PPTs before and after microdialysis (P < 0.05). There were no correlations between cytokine levels, pain or fatigue. Also, there were no differences in stress or anxiety levels between groups.

CONCLUSIONS:

In conclusion, the masseter levels of IL-6, IL-7, IL-8 and IL-13 were elevated in patients with TMD myalgia and increased in response to tooth-clenching. Tooth-clenching increased jaw muscle pain and fatigue, but without correlations to cytokine levels. This implies that subclinical muscle inflammation may be involved in TMD myalgia pathophysiology, but that there is no direct cause-relation between inflammation and pain.

Increased levels of intramuscular cytokines in patients with jaw muscle pain, by S Louca Jounger, N Christidis, P Svensson, T List, Emberg in J Headache Pain. 2017 Dec;18(1):30 [Epub 2017 Feb 27]

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