The physical & mental strain of caring “jeopardising” unpaid carers’ ability to care in the future in Wales

Posted on 06/12/2018 by wames

Carers Wales blog post: Carers Week (11-17 June 2018):  The physical and mental strain of caring “jeopardising” unpaid carers’ ability to care in the future in Wales

The physical and mental strain of caring “jeopardising” unpaid carers’ ability to care in the future in Wales, warns charities

Lack of sleep, performing care tasks and filling in forms for financial or practical support named as top stressors by unpaid carers.

The Carers Week charities have come together to call for urgent support for unpaid carers to be Healthy and Connected as new research released at the start of Carers Week reveals the toll that caring can take on many carers’ own health and wellbeing.

Released for Carers Week 11th – 17th June, the research reveals:

Almost three quarters (74%) of carers in Wales said they had suffered mental ill health as a result of caring, while well over half (61%) said their physical health had worsened.

Unless more support is provided, charities are warning that the carers in Wales won’t be healthy enough to care for loved ones in the future.

Carers worry about coping in the future

The research shows:

  • Over half of carers in Wales said they expect their physical (55%) and mental (57%) health and well-being to get worse in the next two years.
  • Over two in five (45%) carers said that they expect to be be able to provide less care or no care in the future because of poor physical health.
  • Over one third of carers (37%) felt that poor mental health would mean they will be able to provide less or no care in the future.

Main stressors for carers

Carers were most likely to say that the impact of stress and anxiety on their own health was their main worry about the impact of caring on their own health and wellbeing.

Carers named the main stressors contributing most to their stress and anxiety as not getting enough sleep, providing hands on care for the person they care for, and filling in forms for financial or practical support for themselves or the person they care for.

Claire Morgan, on behalf of Carers Week, said:

“This new research is a stark reminder that the enormous contribution made by Wales’s 370,000 unpaid carers.  They must not be taken for granted. Without the unpaid care provided every year by family and friends, our health and care services would collapse. Yet the physical and mental strain of caring, without enough support, is jeopardising carers’ ability to care in the future.

Caring for a loved one all too often means that carers neglect their own mental and physical health.  Finding the time and space to be healthy, get enough sleep and maintain relationships with others are all huge challenges identified by carers. Being left unprepared for carrying out care tasks and  battling with a complex health, benefits and social care system are piling yet more stress on to carers.

We can all act to ensure carers know about and access help and support as early as possible in their caring journey.

There is a key role for Government too.  Welsh Government must ensure that local councils across Wales are fulfilling their legal duties under the Social Services and Well-being (Wales) Act.  Councils must identify carers and provide  appropriate information and advice to support to enable them to look after their own health and well-being”.

This year the Carers Week charities are calling on communities, health care professionals, employers, and the wider public to support carers to get connected to health and wellbeing services and support. The week-long celebration of the enormous contribution that unpaid carers make to our communities is also a time of intensive local activity, with hundreds of awareness-raising events taking place right across the UK.

Carers Week 2018 is made possible by Carers UK working together with Age UK, Carers Trust, Independent Age, Macmillan Cancer Support, Motor Neurone Disease Association, MS Society and Which? Elderly Care, and kindly supported by Nutricia Advanced Medical Nutrition. For more information, visit: www.carersweek.org

 

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Cortical hypoactivation during resting EEG suggests central nervous system pathology in patients with CFS

Posted on 06/12/2018 by wames

Research abstract:

Cortical hypoactivation during resting EEG suggests central nervous system pathology in patients with chronic fatigue syndrome, by MA Zinn, ML Zinna, I Valencia, LA Jason, JG Montoya in Biological Psychology Vol 136, July 2018, Pages 87-99

We investigated central fatigue in 50 patients with chronic fatigue syndrome (CFS) and 50 matched healthy controls (HC).

Resting state EEG was collected from 19 scalp locations during a 3 min, eyes-closed condition. Current densities were localized using exact low-resolution electromagnetic tomography (eLORETA).

The Multidimensional Fatigue Inventory (MFI-20) and the Fatigue Severity Scale (FSS) were administered to all participants. Independent t-tests and linear regression analyses were used to evaluate group differences in current densities, followed by statistical non-parametric mapping (SnPM) correction procedures.

Significant differences were found in the delta (1–3 Hz) and beta-2 (19–21 Hz) frequencybands. Delta sources were found predominately in the frontal lobe, while beta-2 sources were found in the medial and superior parietal lobe. Left-lateralized, frontal delta sources were associated with a clinical reduction in motivation.

The implications of abnormal cortical sources in patients with CFS are discussed.

5. Conclusions
Overall, the present study revealed a pattern of global central nervous system hypoactivation in patients with CFS. Most research points to a common finding of cognitive slowing in CFS and we identified this with quantifiable increases in delta and decreases in beta-2 frequency bands. Focal increases in delta sources in regions with language and limbic underpinnings were related to a reduced motivation factor of
fatigue.

Our findings add to the existing literature demonstrating evidence of central nervous system involvement in patients with CFS.

Identifying the subtle aspects of brain dysfunction underscores the need for studies of CFS examining EEG signals that reflect cellular electrical conductivity without time-delay and different frequency bands for added information about synchronous brain region activities.

Finally, our study demonstrates that eLORETA is a promising tool for recognizing CFS pathogenesis in spatial locations of the brain on a time scale of milliseconds (Pascual-Marqui et al., 2011; Zinn et al., 2016a)

Read full paper

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Structural brain changes versus self-report: machine-learning classification of CFS patients

Posted on 06/11/2018 by wames

Research abstract:

Structural brain changes versus self-report: machine-learning classification of CFS patients, by Landrew S Sevel, Jeff Boissoneault, Janelle E Letzen, Michael E Robinson, Roland Staud in  Exp Brain Res (2018):1-9 [Published Online: 30 May 2018]

Chronic fatigue syndrome (CFS) is a disorder associated with fatigue, pain, and structural/functional abnormalities seen during magnetic resonance brain imaging (MRI).

Therefore, we evaluated the performance of structural MRI (sMRI) abnormalities in the classification of CFS patients versus healthy controls and compared it to machine learning (ML) classification based upon self-report (SR).

Participants included 18 CFS patients and 15 healthy controls (HC). All subjects underwent T1-weighted sMRI and provided visual analogue-scale ratings of fatigue, pain intensity, anxiety, depression, anger, and sleep quality. sMRI data were segmented using FreeSurfer and 61 regions based on functional and structural abnormalities previously reported in patients with CFS. Classification was performed in RapidMiner using a linear support vector machine and bootstrap optimism correction.

We compared ML classifiers based on (1) 61 a priori sMRI regional estimates and (2) SR ratings. The sMRI model achieved 79.58% classification accuracy. The SR (accuracy = 95.95%) outperformed both sMRI models. Estimates from multiple brain areas related to cognition, emotion, and memory contributed strongly to group classification.

This is the first ML-based group classification of CFS. Our findings suggest that sMRI abnormalities are useful for discriminating CFS patients from HC, but SR ratings remain most effective in classification tasks.

Read the full paper

 

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Comparing post-exertional symptoms following serial exercise tests

Posted on 06/08/2018 by wames

Research poster abstract:

Comparing post-exertional symptoms following serial exercise tests, by Lariel J Mateo, Lily Chu, S Stevens, J Stevens, CR Snell, Todd E Davenport, and J Mark Van Ness – Workwell Foundation Presentation, April 2018

Post-exertional malaise (PEM) is an exacerbation of symptoms that leads to a reduction in functional ability. Recognizing the triggers, onset, symptoms and duration of PEM is important for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). PEM following serial exercise tests has not been examined.

PURPOSE
To compare descriptions of symptoms by ME/CFS and control subjects after two maximal exercise tests, each separated by 24 hours.

METHODS
Open-ended questionnaires were provided to 10 control subjects and 49 ME/CFS patients who underwent two maximal exercise tests, 24 hours apart. Each subject evaluated how they felt immediately after the first exercise test, before and immediately after the second exercise test, 24 hours after the second exercise test and in the week following the tests. Responses were analyzed and categorized by two reviewers, blinded to subject diagnosis.

RESULTS
Over the two days of testing, ME/CFS subjects reported an average of 15.4 p/m 7.7 symptoms compared to 5.5 p/m 1.8 in the control group. Following the tests, ME/CFS subjects reported an average of 5.0 p/m 2.8 symptoms compared to 0.1 p/m 0.3 in the control group. Among the ME/CFS subjects, fatigue, cognitive dysfunction, and sleep problems were reported with the greatest frequency. Out of the eighteen symptom categories, ME/CFS subjects reported seventeen at a higher frequency than control subjects.

The largest differences were observed in cognitive dysfunction, headache, light-headedness, muscle/joint pain and weakness. Other symptoms included decreased function, pain, flu-like and gastrointestinal symptoms. Forty-nine percent of ME/CFS subjects recovered within an average of 4.5 days while fifty-one percent had not recovered by day seven. In contrast, all but one control subject recovered within 1 day.

CONCLUSION
A standardized exertional stimulus produces prolonged and more diverse symptoms in ME/CFS subjects compared with those seen in control subjects. Understanding PEM more comprehensively may provide clues to the underlying pathophysiology of ME/CFS and lead to improved diagnosis and treatment.

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Deconstructing post-exertional malaise in ME/CFS

Posted on 06/06/2018 by wames

Research abstract:

Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey, by Lily Chu, Ian J. Valencia, Donn W. Garvert, Jose G. Montoya in PLOS one 13(6): e0197811 [Published: June 1, 2018]

Background:
Post-exertional malaise (PEM) is considered to be the hallmark characteristic of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Yet, patients have rarely been asked in formal studies to describe their experience of PEM.

Objectives:
To describe symptoms associated with and the time course of PEM.

Methods:
One hundred and fifty subjects, diagnosed via the 1994 Fukuda CFS criteria, completed a survey concerning 11 symptoms they could experience after exposure to two different types of triggers. We also inquired about onset and duration of PEM and included space for subjects to write in any additional symptoms. Results were summarized with descriptive statistics; McNemar’s, paired t-, Fisher’s exact and chi-square goodness-of-fit tests were used to assess for statistical significance.

Results:
One hundred and twenty-nine subjects (90%) experienced PEM with both physical and cognitive exertion and emotional distress. Almost all were affected by exertion but 14 (10%) reported no effect with emotion. Fatigue was the most commonly exacerbated symptom but cognitive difficulties, sleep disturbances, headaches, muscle pain, and flu-like feelings were cited by over 30% of subjects. Sixty percent of subjects experienced at least one inflammatory/ immune-related symptom. Subjects also cited gastrointestinal, orthostatic, mood-related, neurologic and other symptoms. Exertion precipitated significantly more symptoms than emotional distress (7±2.8 vs. 5±3.3 symptoms (median, standard deviation), p<0.001). Onset and duration of PEM varied for most subjects. However, 11% reported a consistent post-trigger delay of at least 24 hours before onset and 84% endure PEM for 24 hours or more.

Conclusions:
This study provides exact symptom and time patterns for PEM that is generated in the course of patients’ lives. PEM involves exacerbation of multiple, atypical symptoms, is occasionally delayed, and persists for extended periods. Highlighting these characteristics may improve diagnosis of ME/CFS. Incorporating them into the design of future research will accelerate our understanding of ME/CFS.

A statement from one of the authors, Lily Chu, MD, MSHS:

We have just published an article about symptoms and timing associated with post-exertional malaise (PEM) in PLOS One.

The article is open access for anyone who wants to read it in full, thanks to funding from Stanford ME/CFS Initiative supporters.

Although PEM has been discussed before in clinical articles, some studies,  and patient accounts, formal studies directly and open-endedly asking patients about their symptoms and timing of PEM are lacking.  Few studies examine the breadth of symptoms nor timing in the same study with the exception of 2 published studies by the Workwell Foundation (here https://www.ncbi.nlm.nih.gov/pubmed/20095909 and here https://www.ncbi.nlm.nih.gov/pubmed/21208154 ).  However those studies covered a younger group who were all females and could undergo back-to-back CPET (Cardiopulmonary Exercise Testing). Our study includes men, older people, and asked about PEM symptoms during the course of regular life. We also examined differential effects of physical/ cognitive vs. emotional stressors and examined timing in greater detail.

We hope the article will help mainstream clinicians better diagnose ME/CFS.

It is not enough to say that “symptoms” are exacerbated in PEM: clinicians need more specific guidance about which symptoms to recognize PEM and avoid thinking it is only post-exertional fatigue.

We also hope that the article will help inform the design, analysis, and interpretation of future PEM studies. Finally,  the published article may provide support for any work/ school accommodations and other situations when it comes to describing what symptoms commonly make up PEM and its delayed/ prolonged nature.

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Cerebral blood flow & heart rate variability predict fatigue severity in patients with CFS

Posted on 06/05/2018 by wames

Research abstract:

Cerebral blood flow and heart rate variability predict fatigue severity in patients with chronic fatigue syndrome, by Jeff Boissoneault, Janelle Letzen, Michael Robinson, & Roland Staud in Brain Imaging Behav. 2018 May 31 [Epub ahead of print]

Prolonged, disabling fatigue is the hallmark of chronic fatigue syndrome (CFS). Previous neuroimaging studies have provided evidence for nervous system involvement in CFS etiology, including perturbations in brain structure/function.

In this arterial spin labeling (ASL) MRI study, we examined variability in cerebral blood flow (CBFV) and heart rate (HRV) in 28 women: 14 with CFS and 14 healthy controls. We hypothesized that CBFV would be reduced in individuals with CFS compared to healthy controls, and that increased CBFV and HRV would be associated with lower levels of fatigue in affected individuals.

Our results provided support for these hypotheses. Although no group differences in CBFV or HRV were detected, greater CBFV and more HRV power were both associated with lower fatigue symptom severity in individuals with CFS. Exploratory statistical analyses suggested that protective effects of high CBFV were greatest in individuals with low HRV. We also found novel evidence of bidirectional association between the very high frequency (VHF) band of HRV and CBFV.

Taken together, the results of this study suggest that CBFV and HRV are potentially important measures of adaptive capacity in chronic illnesses like CFS. Future studies should address these measures as potential therapeutic targets to improve outcomes and reduce symptom severity in individuals with CFS.

Read full paper

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Antibodies against GPCR – their role in CFS/ME

Posted on 06/04/2018 by wames

Review abstract:

Antibodies Against GPCR, by Carlotta Meyer, Harald Heidecke in Front Biosci (Landmark Ed). 2018 Jun 1;23:2177-2194.

G-protein-coupled receptors (GPCRs) are the largest family of receptors in humans.

GPCRs are seven-transmembrane receptors that are activated by the binding of a ligand to the extracellular domain. In addition to the endogenous ligands, auto-antibodies (aab) can also bind to the GPCRs. They can activate different and specific cellular pathways which contribute to various diseases.

In this review, the authors summarize the knowledge about antibodies targeting GPCRs and their effects and relevance in the pathogenesis of various diseases and their use in clinical diagnostics. We highlight the role of different activating anti-GPCR aab in solid organ transplantations, stem cell transplantations, systemic sclerosis, preeclampsia, chronic fatigue syndrome, cardiovascular diseases, Alzheimer’s disease, and cancer.

Ligand–receptor interactions provide the fundamental basis for the mechanism of action of all drugs.  (Motiejunas & Wade 2007)

5.1. Chronic Fatigue Syndrome (CFS/ME)

Chronic Fatigue Syndrome has an estimated prevalence of 0.2–0.3% (82); it is a frequent and severe chronic disease. Scheibenbogen et al. determined antibodies against alpha and beta adrenergic receptors, muscarinic cholinergic receptors 1-5, dopamine receptors, serotonin receptors, AT1R, and ETAR by ELISA (CellTrend GmbH) in sera from chronic fatigue syndrome patients (n=268) and healthy controls (n=108). Anti-beta-2 adrenergic receptors, anti-muscarinic cholinergic receptors 3 and anti-muscarinic cholinergic receptors 4 aab were significantly elevated in CFS patients compared to controls (83).

In addition, pre and post-treatment samples from 25 patients treated during the KTS-2 rituximab trial were analyzed for aab against GPCR (84, 85). In patients receiving rituximab and responded to therapy, anti-beta-2 adrenergic receptor and anti-muscarinic cholinergic receptor 4 aab significantly decreased. In contrast, the aab levels in non-responders did not reduce. This is the first sign that anti-beta-2 adrenergic receptor and the anti-muscarinic cholinergic receptor 4 aab could be used as a companion diagnostic for rituximab treatment in chronic fatigue syndrome.

In addition, Scheibenbogen et al. showed that immunoadsorption (IA) was effective to remove anti-beta-2 adrenergic receptors aab in chronic fatigue syndrome patients and improve their outcome (86). In detail, elevated anti-beta-2 adrenergic receptor aab rapidly decreased during IA in 9 of 10 patients. Furthermore 6 months later anti-beta-2 adrenergic receptors aab were significantly lower compared to pretreatment. A rapid improvement of symptoms was reported by 7 patients during the IA. 3 of these patients had long lasting and ongoing moderate to marked improvement for 6 – 12 months, 2 patients had short improvement only and 2 patients improved for several months following initial worsening.

Kämpf et al. described for the first time an association between anti-muscarinic cholinergic receptors 3 and anti-muscarinic cholinergic receptors 4 aab and cancer related fatigue syndrome (87).

8. CONCLUSIONS

Antibodies against GPCR are present in autoimmune and non-autoimmune diseases. Both elevated as well as decreased anti-GPCR ab are present in diseases (119). There are a growing number of antibodies against different GPCR. Current researches indicate the role of anti-GPCR aab patterns as markers of diseases. The role of anti-GPCR aab in disease pathogenesis is an emerging field in different diseases. In addition, studies determining quantity and quality biological spectrum of aab targeting GPCRs in healthy subjects according to sex, age and geographic areas will bring valuable parameters for future investigations.

A major challenge in the field of anti-GPCR aab is the determination of the aab with reliable assays. There are two methods in general, functional assays (so called bioassays) and IgG-binding assays using a variety of antigenic target molecules (ELISAs or similar methods). Many ELISAs employ peptid homologues of the presumed target epitope as capture antigen. Current belief holds that these may not be useful in many cases (63). ELISAs using the full GPCR protein are reliable and have high-through-put ability. A few of these (e.g. anti-AT1R-Ab and anti-ETAR-Ab, CellTrend GmbH) are registered as in vitro diagnostics (IvD). Table 1 gives an overview of, which type of assay has been used in the characterisation of GPCR-aab in the various diseases discussed here.

Anti-GPCR aab are another ligand of the receptor with specific effects on the receptor. They are a target for the development of a new class of drugs as well as for new diagnostic tools for the personalized medicine.

Read full paper

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WAMES AGM 23 June 2018 – a time to take stock!

Posted on 06/04/2018 by wames

WAMES AGM

The WAMES Annual General Meeting will take place on Saturday 23 June 2018 – time still to be confirmed.

This will be a short business meeting to report on the activities of the past year and plan the priorities for the coming year.

Attracting funding remains a priority. Without it we will be unable to maintain and develop all our volunteers, campaigning, information and support activities.

Contact Jan jan@wames.org.uk if you have any comments about WAMES, issues you would like the committee to consider or ideas for finding funding. There may be an option to join us via Skype.

We would love to hear from anyone who would like to take part in our mission to:

make a difference for ME in Wales

as a trustee on the management committee, a volunteer, small steps supporter, fundraiser or donor.

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Decreased Expression of TRPM3 & mAChRM3 in the small intestine in ME/CFS

Posted on 06/01/2018 by wames

Decreased Expression of TRPM3 and mAChRM3 in the Small Intestine in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by Sonya Marshall-Gradisnik, Marshall Fretel, Natalie Eaton, Helene Cabanas, Cassandra Balinas, Vinod Gopalan, Daniel Petersen, Rachel Passmore, Kevin Tang, Mazhar Haque, Alfred Lam, Donald Staines in IJCM Vol.9 No.5, May 2018, PP. 467-480

 

Research abstract:

Introduction: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is often associated with gastrointestinal disturbance and inflammatory markers; however, there have been no histological studies performed in the small intestine from CFS/ME patients.

The aim of this investigation was to assess the expression of certain inflammatory markers and inflammatory receptors, namely transient receptor potential melastin 3 (TRPM3) ion channels and muscarinic acetylcholine M3 (mAChRM3) receptors, in small intestinal tissues in a case controlled study comprising a CFS/ME patient and a healthy non-fatigued control.

Method: Immunohistochemistry was performed on a small intestinal biopsy from a CFS/ME patient (age = 50; female) with self-reported symptoms of gastrointestinal disturbance and a non-fatigued control (NFC), (age = 28; female). Semi-quantitative analysis of expression was undertaken for interferon-gamma (IFNy), interleukin-1 alpha (IL-1α), tumour necrosis factor-alpha (TNFα), TRPM3 ion channels and mAChRM3 acetylcholine receptors.

Results: There was significantly decreased expression of TRPM3 in the CFS/ME patient (35% ± 9%) and a significant decrease in mAChRM3 in the CFS/ME patient (54% ± 9%). There was no difference in IL-1α between CFS/ME patient and NFC, however; there was an increase in IFNy (13% ± 6%) in the CFS/ME patient compared to NFC. There was a difference observed in TNFα in CFS/ME compared to NFC.

Conclusion: Differences were noted in the expression of specific TRP ion channels and cholinergic receptors in CFS/ME compared with NFC, with CFS/ME demonstrating decreased TRPM3 and mAChRM3. Further, IFNy was increased, and TNFα decreased, in the small intestine of the CFS/ME patient with reported gastrointestinal disturbance.

 

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Poetry – a life-saver for Ffion

Posted on 05/31/2018 by wames

Ffion Original Poems

Ffion has a degree in English and French and loves languages, literature, and writing. She also used to love opera, film, theatre, concerts, walking, socialising and, especially, travelling. But her life changed totally when she was diagnosed with ME and, subsequently, Fibromyalgia.

A couple of years ago, poems started to pour out! Poetry is a life-saver, as is making cards for charities for them to sell to raise funds.

Her poems are very varied – not just about ME and FM, but also humorous, about animals, about landscape and nature, for children etc.

She is publishing her poems on her Blog: Ffion original poems

Out of the blue!

It seems that, no matter what you do,
ME and FM arrive out of the blue.

You try to live healthily, in body and mind.
You try to live mindfully, you try to be kind.

Then, these two arrive, uninvited body-squatters,
And don’t go, won’t go, abhorrent Life-blockers!

But at least we know we are not alone.
No need to face this on our own.

There are many people on-side out there.
They want to cure us, we know they care.

We know they won’t leave us in the lurch
Good people in ME and FM research!

THANK YOU!

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