Inquiry into loneliness & isolation closing date 10 March 2017

Posted on 03/06/2017 by wames

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

Posted on 03/06/2017 by wames

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

Posted on 03/06/2017 by wames

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

Posted on 03/06/2017 by wames

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

Posted on 03/03/2017 by wames

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

Posted on 03/03/2017 by wames

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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Review of potential causes of muscle dysfunction in ME/CFS

Posted on 03/02/2017 by wames

Review abstract:

Purpose of Review:
Here, we review potential causes of muscle dysfunction seen in many patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) such as the effects of oxidative and nitrosative stress (O&NS) and mitochondrial impairments together with reduced heat shock protein production and a range of metabolic abnormalities.

Recent Findings:
Several studies published in the last few years have highlighted the existence of chronic O&NS, inflammation, impaired mitochondrial function and reduced heat shock protein production in many patients with ME/CFS.

These studies have also highlighted the detrimental effects of chronically elevated O&NS on muscle functions such as reducing the time to muscle fatigue during exercise and impairing muscle contractility. Mechanisms have also been revealed by which chronic O&NS and or impaired heat shock production may impair muscle repair following exercise and indeed the adaptive responses in the striated muscle to acute and chronic increases in physical activity.

Summary:
The presence of chronic O&NS, low-grade inflammation and impaired heat shock protein production may well explain the objective findings of increased muscle fatigue, impaired contractility and multiple dimensions of exercise intolerance in many patients with ME/CFS.

Mechanisms explaining muscle fatigue and muscle pain in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a review of recent findings, by Morris Gerwyn, Michael Maes in Current Rheumatology Reports, January 2017, 19:1 [published online 23 Jan 2017]

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International wheelchair day 1 March 2017

Posted on 03/01/2017 by wames

Celebrate your wheelchair on International Wheelchair day

an annual day of events and activities which take place around the World when wheelchair users celebrate the positive impact a wheelchair has on their lives.

International wheelchair day website

 

Euan’s guide: Euan’s Guide features disabled access reviews from disabled people and their friends and families

“The aim of Euan’s Guide is to empower disabled people by providing information that will give confidence and choices for getting out and about.”

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Brain & spinal fluid abnormalities in CFS are not affected by psychiatric comorbidity

Posted on 03/01/2017 by wames

Research highlights:

  • As a group, CFS patients have higher brain ventricular lactate, more abnormal spinal fluid results, lower brain GSH, and reduced cerebral blood flow relative to healthy sedentary controls
  • Psychiatric comorbidity does not influence any of these potential biological markers of CFS
  • 50% of the patients had more than one of these abnormalities
  • The subgroup of patients with brain abnormalities may have an underlying encephalopathy producing their illness

Research abstract:

The purpose of this study was to investigate whether CFS patients without comorbid psychiatric diagnoses differ from CFS patients with comorbid psychiatric diagnoses and healthy control subjects in neuropsychological performance, the proportion with elevated spinal fluid protein or white cell counts, cerebral blood flow (CBF), brain ventricular lactate and cortical glutathione (GSH).

The results of the study did not show any differences in any of the outcome measures between CFS patients with and without psychiatric comorbidity, thus indicating that psychiatric status may not be an exacerbating factor in CFS.

Importantly, significant differences were found between the pooled samples of CFS compared to controls. These included lower GSH and CBF and higher ventricular lactate and rates of spinal fluid abnormalities in CFS patients compared to healthy controls.

Thirteen of 26 patients had abnormal values on two or more of these 4 brain-related variables. These findings, which replicate the results of several of our prior studies, support the presence of a number of neurobiological and spinal fluid abnormalities in CFS.

These results will lead to further investigation into objective biomarkers of the disorder to advance the understanding of CFS.

Multimodal and simultaneous assessments of brain and spinal fluid abnormalities in chronic fatigue syndrome and the effects of psychiatric comorbidity by Benjamin H Natelson, Xiangling Mao, Aaron J Stegner, Gudrun Lange, Diana Vu, Michelle Blate, Guoxin Kang, Eli Soto, Tolga Kapusuz, Dikoma C Shungu in Journal of the Neurological Sciences April 15, 2017 Vol 375, pp 411–416 [Published online Feb 2017]

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Effectiveness of long-term Doxycycline treatment & CBT on fatigue severity in patients with Q Fever Fatigue Syndrome

Posted on 02/28/2017 by wames

Research abstract:

Background: Approximately 20% of patients with acute Q fever will develop chronic fatigue, referred to as Q fever fatigue syndrome (QFS). The objective of this randomized controlled clinical trial was to assess the efficacy of either long-term treatment with doxycycline or cognitive-behavioral therapy (CBT) in reducing fatigue severity in patients with QFS.

Methods: Adult patients were included who met the QFS criteria according to the Dutch guideline: a new onset of severe fatigue lasting ≥6 months with significant disabilities, related to an acute Q fever infection, without other somatic or psychiatric comorbidity explaining the fatigue. Using block randomization, patients were randomized between oral study medication and CBT (2:1) for 24 weeks.

Second, a double-blind randomization between doxycycline (200 mg/day, once daily) and placebo was performed in the medication group. Primary outcome was fatigue severity at end of treatment (EOT; week 26), assessed with the Checklist Individual Strength subscale Fatigue Severity.

Results: Of 155 patients randomized, 154 were included in the intention-to-treat analysis (doxycycline, 52; placebo, 52; CBT, 50).

At EOT, fatigue severity was similar between doxycycline (40.8 [95% confidence interval {CI}, 37.3-44.3]) and placebo (37.8 [95% CI, 34.3-41.2]; difference, doxycycline vs placebo, -3.0 [97.5% CI, -8.7 to 2.6]; P = .45). Fatigue severity was significantly lower after CBT

(31.6 [95% CI, 28.0-35.1]) than after placebo (difference, CBT vs placebo, 6.2 [97.5% CI, .5-11.9]; P = .03).

Conclusions: CBT is effective in reducing fatigue severity in QFS patients. Long-term treatment with doxycycline does not reduce fatigue severity in QFS patients compared to placebo.

Effectiveness of Long-term Doxycycline Treatment and Cognitive-Behavioral Therapy on Fatigue Severity in Patients with Q Fever Fatigue Syndrome (Qure Study): A Randomized Controlled Trial, by Keijmel SP, Delsing CE, Bleijenberg G, van der Meer JW, Donders RT, Leclercq M, Kampschreur LM, van den Berg M, Sprong T, Nabuurs-Franssen MH, Knoop H, Bleeker-Rovers CP in Clin Infect Dis. 2017 Feb 27

Note: protocol for the Qure study

Clinical Trials Registration.: NCT01318356

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