A qualitative exploration of treatment preference in paediatric randomised control trials

A qualitative exploration of treatment preference in paediatric randomised controlled trials, by Lucy Beasant PhD thesis, University of Bristol, [Bristol Medical School (PHS), Bristol Population Health Science Institute] November 28, 2019. Supervisors: Esther M Crawley, Nicola J Mills & Bridget Young

 

Research abstract:

Randomised controlled trials (RCTs) rely on effective recruitment and retention for successful completion. Potential trial participants’ preference for a treatment (trial intervention) can affect recruitment, post randomisation drop-out and adherence to intervention groups in adult RCTs, but little is known about how they may affect paediatric
trials.

Communication of trial information in paediatric trial settings is complex as it needs to accommodate the parent’s as well as young person’s perspective, whilst at the same time maintaining high standards of trial conduct. This PhD explored how treatment preferences influenced recruitment and participation in paediatric RCTs by undertaking a systematic review of the literature and embedding qualitative research in four paediatric trials.

The systematic literature review focused on paediatric RCTs and qualitative studies that reported the treatment preferences of children and young people aged 0-17 years, and their parents. Fifty-two papers were identified, twelve of which contained qualitative data.

CONSORT figures reporting decline or withdrawal from trials due to treatment preference were tabulated and discussed descriptively. Techniques of meta-ethnography were drawn on to evaluate qualitative data. The systematic review showed treatment preferences acting as a barrier to recruitment to paediatric RCTs, particularly from a parental perspective. Parents’ understanding of trial processes and perceptions of the benefits and risks associated with treatments promoted discussion of preference. Few RCT papers reported the views of young people in relation to preference for treatment.

Qualitative methods were embedded in three chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) trials, and one surgical trial for acute, uncomplicated appendicitis. The QuinteT Recruitment Intervention (QRI) has been embedded successfully in adult RCTs to identify and address recruitment difficulties with the intention to optimise informed decision-making and recruitment.

Methods and approaches from the QRI (audio-recorded recruitment consultations,
interviews, recruiter training) were employed in the present research to explore the treatment preferences of young people, their parents, and to discuss issues of equipoise with recruiting health professionals. Data analyses drew on techniques of constant comparison, content and thematic analysis. All four RCTs were able to successfully recruit paediatric participants, but preference for treatment was a consistent reason for trial decline, post randomisation drop-out and discontinued treatment in the four trials under investigation.

Young people and their parents expressed treatment preferences when considering RCT participation in all four trials. However, young people were less likely to express preferences than their parents.

The views and equipoise of those recruiting and treating patients influenced families at all stages of recruitment, and during trial participation. Providing training for recruiters and wider clinical teams that promoted communicating equipoise, and the exploration of preference during discussions with families, had a positive effect on observed recruitment practices. More efforts are now needed to understand preference for treatment in paediatric RCT settings, particularly in relation to the impact on trial retention and the treatment outcomes under investigation.

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Post-viral fatigue in Covid-19

Post viral fatigue in Covid-19, by Karen Leslie, Dr Michelle Bull, Natalie Hilliard and Dr Nicola Clague-Baker in Frontline [Chartered Society of Physiotherapy (CSP) Journal] June 2020 no. 6

 

Excerpt:

What is post viral fatigue syndrome (PVFS), and how do I recognise it?
PVFS is a persistent state of ill health following a viral infection. Symptoms include fatigue, loss of energy, muscular aches and pains, intermittent flares of viral symptoms and an inability to return to previous levels of activity.  PVFS is not the same as being deconditioned. Ignoring or exacerbating the symptoms may worsen them.

If there has been a sustained change to daily life and if rehabilitation isn’t progressing as you think it should, consider PVFS.

Where, say, a person may have returned to work but uses their weekends to recover, or is struggling even with basic daily tasks, it’s worth considering PVFS.

With PVFS there is a possibility of development into Myalgic Encephalomyelitis (ME – often known as chronic fatigue syndrome or CFS). The link between severe viral infection and ME is clear. Previous outbreaks of SARS and Epstein Barr saw a 10 per cent rise in the number of patients diagnosed with ME1,2. ME affects approximately 250,000 people in the UK, more than multiple sclerosis and Parkinson’s disease combined. Around 25 per cent of patients are completely bedbound.

If I suspect someone recovering from Covid-19 is developing PVFS, what should I do?
Adapt to provide pacing strategies to work within energy levels, rather than push beyond limits. And make sure you are clearly communicating your concerns with the multidisciplinary team for ongoing monitoring and support.

The best approach is to ensure adequate:

  • rest
  • nutrition
  • sleep

How do I know if a person with PVFS has developed ME?
The hallmark feature of ME is post-exertional malaise (PEM), which is characterised by a set of symptoms including fever, muscle ache, headache, sensitivities, fatigue and dizziness. PEM is triggered by physical or cognitive exertion, which can be as simple as taking a shower or talking to a relative, and it can last days, weeks, or even months. PEM can manifest up to 24-48 hours after exertion, so it is not always apparent what activity was the trigger.

The authors continue with clinical signs to look for, advice on avoiding graded exercise therapy to avoid triggering PEM.

Read full article

Full article also available on ME Association site

 

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£3.2 million for new DecodeME DNA study

£3.2 million for new DecodeME DNA study

 

The ME/CFS Biomedical Partnership has received funding to begin the DecodeME DNA study. This will be a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should contribute to the understanding of the disease and ultimately find treatments.

They need 20,000 participants. Sign up now so that when the study launches in early 2021, they can start reaching out to potential participants and collecting samples immediately.

  • UK residents will be contacted first
  • You must be 16 or over to take part.

The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh in collaboration with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study is looking for differences in a person’s DNA that make them more likely (or less likely) to get ME/CFS, which should help pinpoint what causes the illness.

People with ME/CFS are at the heart of the study, with a patient and a carer as co-investigators alongside the scientists and a steering group of people with the illness, carers and charities. The work is funded by the Medical Research Council and the National Institute for Health Research.

 

Guardian: UK to launch world’s largest genetic study into chronic fatigue syndrome

Research aims to shine a light on condition that is believed to affect 250,000 people in UK

Times: Chronic fatigue syndrome: Search for genetic clues

British scientists are launching the world’s largest research project to unlock the genetic clues to a debilitating, poorly understood condition affecting 250,000 people in the UK and leaving many bedridden.

Times: Chronic fatigue syndrome: Debilitating condition that leaves opinion divided

The new study may help to pin down the mechanism patients are looking for. Or it may be more false hope.

One thing seems likely, though. With many researchers suspecting that the condition is triggered by a strong viral infection, the ranks of the post-pandemic patient-activists could soon be swelling.

Times: Chronic Fatigue Syndrome. It felt like I’d been in a car-crash

Case studies of people with ME: Dr Nina Muirhead; Danny Chowdhury (son of AfME’s CE Sonya); Ali McNamara, a personal trainer

MRC: The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched

Health rising: DecodeME – U.K. Funds Largest ME/CFS Study Ever In Attempt to Get at Genetic Roots of the Illness

While GWAS studies can provide incredible insights, though, they tend to find gene variants that account for only a modest proportion of the heritability of complex traits. One reason for this is that it’s just very hard to identify some types of variants (common variants with very small effects, rare variants with small effects, ultra-rare variants) which, when they are all added up together, can significantly contribute to heritability.

We know that the environment – the infection or toxin you encountered, the food you ate, the mold you were exposed to, the stressful childhood events you encountered – often plays a significant role in the production of disease. Chronic diseases are usually the result of gene-environment interactions.

Those factors have resulted in GWAS studies, that, oddly enough, often do not explain much of the risk for a disease.  Instead of pointing to X gene causing a disease, they tend to uncover arrays of genes and biological pathways that merit further study; i.e. they’re more likely to point fingers rather than directly pinpoint causes.

One geneticist reported that: “What GWASs do is plant a flag in the landscape and say “There’s something interesting here”. After that “It takes a lot of painstaking follow-up work to determine what that interesting thing is”.

ME/CFS Research Review: UK spends £3 million on the world’s biggest ME/CFS study

This is a landmark move from the UK government’s two health-research funders. The Medical Research Council (MRC) has only funded a few fairly small biomedical studies in ME/CFS before, and the National Institute of Health Research has never funded any. It looks as though both organisations are now serious about biomedical research for this disease.

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“The child’s got a complete circle around him ”. The care of younger children (5–11 years) with CFS/ME.

“The child’s got a complete circle around him ”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’, by Amberly Brigden, Alison Shaw, Rebecca Barnes, Emma Anderson, Esther Crawley in Health and Social Care in the Community, Published online 9 June 2020 [https://doi.org/10.1111/hsc.13029]

 

What is known about this topic

  • An increasing number of children are living with a chronic health condition.
  • Integrating care across educational and healthcare settings is important, particularly for younger children who are dependent on adults for their care.
  • However, these children are often not adequately supported at school and there is little evidence on how health and education systems might integrate practice.

What this paper adds

  • This is the first qualitative study to explore the care of younger children with CFS/ME; it suggests that a socio‐ecological conceptualisation of care may be beneficial.
  • Primary school teachers have close and consistent relationships with their pupils and are well‐placed to support their health needs.
  • There is little direct contact between clinic and school. This is appropriate for some families, but problematic for those with complex needs.

Research abstract:

Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice.

Our aim was to address this gap by examining how the care of children (aged 5–11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care.

We undertook semi‐structured interviews with families (22 participants), teachers (11 participants) and healthcare providers (9 participants), analysing the data thematically and comparatively. Our analysis of the data was informed by a socio‐ecological perspective as we sought to understand the complexity of the relationships and systems around the child.

The first theme focuses on the child (“individual level”); child‐centred care is seen as essential whilst acknowledging that the child has limited capacity to manage their own care.

The second theme presents the distinct roles of parents, teachers and clinicians (“interpersonal and organisational levels”).

The third describes how these three levels interact in the management of the child’s care, in the context of the health and education systems and policies (“policy levels”).

The fourth explores optimal ways to integrate care across home, school and clinical settings.

In conclusion, there is opportunity to support a child with complex health needs by targeting the systems around the child; parents, teachers and clinicians, as well as education and health policy that can enable shared‐care. Involving schools in assessment, communicating diagnosis across settings and using a stepped‐care approach to integrated care may be beneficial. Further work is needed to explore these recommendations, with attention to the policy factors that may act as barriers and enablers.

This paper is part of EXPLORER, a project lead by Amberly Brigden of the University of Bristol that aims to explore treatments for younger children with ME/CFS. One study plans to look into ME/CFS in younger children aged 5 to 7. https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/explorer/

Miss Brigden is funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF‐ DRF‐2017–10–169). Prof Crawley is funded by the NIHR Senior Research Fellowship, SRF‐2013–06–013). This report is independent research. The views expressed in this publication are those of the authors(s) and not necessarily those of the NHS, NIHR or the Department of Health and Social Care.

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Skeletal muscle weakness often occurs in patients with ME/CFS

Skeletal muscle weakness often occurs in patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome ME/CFS, by Yves Jammes, Frederique Retornaz in Journal of Experimental Neurology Vol 1, #2, pp 35-39, May 14, 2020

 

Highlights:

  • Altered muscle function often occurs in ME/CFS patients.
  • Reduced handgrip strength is proportional to lowered physical performance
  • Muscle fatigue could result from altered muscle excitability at work
  • Reduced central motor command is also documented in relation of encephalomyelitis
  • Subgroups of ME/CFS patients without muscle weakness are documented

Research abstract:

hand grip dynamometerThis commentary complements data reported in Clinical Biomechanics reporting reduced maximal handgrip strength in numerous patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in proportion to their lowered maximal physical performances.

The causes of muscle weakness in these patients are open to discussion. Literature data reveal a reduction of central command to skeletal muscles in some ME/CFS patients, related to encephalomyelitis.

Altered muscle membrane excitability, that is ‘peripheral fatigue’, is also described in
relation with an imbalance of the oxidant/anti-oxidant status. On the other hand, subgroups of chronically fatigued patients with clinical criteria of ME/CFS do not suffer from any muscle weakness.

Thus, clinical data do not sufficiently clarify homogeneous ME/CFS pathology.

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Myalgic Encephalomyelitis: MEPs call for more funds for research into complex illness

European Parliament Press Release: Myalgic Encephalomyelitis: MEPs call for more funds for research into complex illness  18 June 2020

  • An estimate of 2 million Europeans affected by the disease
  • ME/CFS is still poorly understood and consequently, underdiagnosed .
  • Increasing awareness is crucial to advance recognition of the illness
    and to improve lives of patients

Parliament wants to increase EU funding in order to advance research on diagnostic tests and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

In a resolution adopted on Wednesday with 676 votes in favour, 4 against and 8 abstentions, the European Parliament calls for additional EU funding for research on ME/CFS and the prioritisation of projects focused on biomedical research.

This comes after Parliament has received a number of petitions raising concerns over the absence of treatment and insufficient funding for research related to the disease that affects an estimate of 2 million people within the EU.

Support for biomedical research

“Myalgic encephalomyelitis is a chronic neuro-immune disease which affects many people, but unfortunately little is known about its causes and possible cure. We want to improve the everyday lives of patients and their families who are suffering and at risk of social exclusion.” said Dolors Montserrat (EPP, ES), Chair of the Petitions Committee.

“By adopting this resolution, Parliament gives voice to patients’ concerns and supports their legitimate requests for greater awareness and funding for research. We urge the Commission to allocate additional funds for EU biomedical research on ME/CFS, in order to quickly develop diagnostic tests and ensure patients have access to effective treatment.”

Promoting cooperation

The resolution calls for more European and international cooperation on research into ME/CSF, in order to speed up the development of objective diagnostics standards and treatment. In addition, the Commission should look into the feasibility of an EU fund for
prevention and treatment of ME/CFS, suggest MEPs.

Raising awareness

Due to insufficient knowledge among healthcare providers and absence of appropriate testing, ME/CFS is still poorly understood and as a result, underdiagnosed. Poor knowledge also can lead to stigmatisation and psychological distress, remind MEPs. The resolution emphasises the lack of recognition and awareness on this type of diseases and calls on the Commission and member states to launch information and awareness campaigns among health professionals and the public.

Background information

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity and progression are extremely variable. The absence of treatment and insufficient funding for research on the disease, which affects an estimate of 2 million people in the EU, was already highlighted in several questions to the Commission and petitions from citizens. The economic burden of the disease across Europe was estimated to amount to EUR 40 billion each year.

More info

MERUK: European Parliament Resolution

We await developments. The Resolution accepts the challenges face by those affected by the illness; the lack of support and recognition and, above all, the dearth of funding directed towards understanding this illness. However, Resolutions do not necessarily result in action.

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Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with ME

Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with Myalgic encephalomyelitis, by R Stephen Walsh, Andrew Denovan, Kenneth Drinkwater, Sean Reddington & Neil Dagnall in BMC Family Practice vol 21, no. 105 (2020)

 

Research abstract:

Background
Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. Some medical professionals regard it as a contentious illness. Others report a lack of confidence with diagnosis and management of the condition. The genesis of this paper was a complaint, made by an ME patient, about their treatment by a general practitioner. In response to the complaint, Healthwatch Trafford ran a patient experience-gathering project.

Method
Data was collected from 476 participants (411 women and 65 men), living with ME from across the UK. Multinomial logistic regression investigated the predictive utility of length of time with ME; geographic location (i.e. Manchester vs. rest of UK); trust in GP; whether the patient had received a formal diagnosis; time taken to diagnosis; and gender. The outcome variable was number of GP visits per year.

Results
All variables, with the exception of whether the patient had received a formal diagnosis, were significant predictors.

Conclusions
Relationships between ME patients and their GPs are discussed and argued to be key to the effective delivery of care to this patient cohort. Identifying potential barriers to doctor patient interactions in the context of ME is crucial.

 

Discussion
A significant proportion of ME suffers reported unsatisfactory relationships with their GP. This finding indicated that ME patients experience a troubled relationship with their primary health contact. Indeed, approximately half of the surveyed participants did not trust their GP. Trust was only evident within the monthly GP visit group. These are important outcomes because lack of trust can negatively affect the number of times patients visit GPs and condition management [17, 21, 27]. One strategy with the potential to address this issue is for GPs to cultivate a sense of “we-ness”. Shared GP/ME patient group membership and common goals may facilitate respect and trust [4, 24]. Building rapport with this cohort is vital.

Potential barriers to positive in-group inclination are depersonalization and stereotyping. From the perspective of GPs, the ME patient group are problematic because ME diagnosis is often considered contentious [15, 24], prevalence is low, and, importantly, ME is absent from the Quality and Outcome Framework [3]. These factors combine to make ME management and treatment challenging and time consuming [15, 16, 20]. Within the present study, formal diagnosis and time to diagnosis had little effect on ME patient visits. The notable exception was the 3–6 month category, where diagnosis was associated with increased GP visits in the 5–6 a year and monthly categories. These results suggest this is an important period for diagnosis. Subsequent research should examine this further.

Moreover, the groups that patients understand themselves as belonging to potentially influences symptom appraisal/responses, health related norms/behaviours, coping, social support and clinical outcomes [22, 23]. Thus, from a health and well-being perspective, it is clear that individual’s relationships, and identification, with their medical and social care providers are of vital importance. Indeed, for people living with chronic conditions, the GP relationship is a crucial factor [4, 18, 19]. As such, the functionality of the doctor patient interaction is fundamental to individual well-being. Mutual respect is a core facet at the heart of this relationship [3, 17].

Illustratively, St Claire and Clucas [27] observed that patients reported several affirmative outcomes when they perceived their doctor as respectful (i.e., greater satisfaction, intention to adhere to advice, and inclination to revisit). Thus, positive patient regard not only enhances the doctor and patient interaction, but also improves patient prognosis by reducing symptoms and facilitating healthy behaviours. In this context, communication and skills training may help to enhance GP interaction with ME patients. Succeeding studies should assess this area.

The results of the present study also revealed a negative relationship between length of ME and frequency of GP visits, as the length of the condition extended patients reported fewer GP visits. One way to understand this is to build conceptually on a recognition of the importance of communication. Consistent with the positive link between trust and GP visits [3, 17], De Carvalho Leite et al. [28] reported that inadequate communication between patients and professionals was often a barrier to care. With a significant proportion of English GPs reported as being sceptical of ME as a diagnosis [3, 14], it is not surprising that patients frequently report their attempts to access services as ‘exhausting, demoralising and isolating’ [15, 20, 28].

In line with this qualitative literature, our findings reveal that over time ME patients engage less with medical practitioners. Although, the reasons for this are currently unclear, this finding suggests that improved doctor and ME patient communication and monitoring is advisable. This would help to track number of appointments attended, frequency, and points at which attendance cease. Maintaining and engaging with treatment is vital to condition management and well-being. A general remedy for ineffective communication is to provide empathic, personalised and co-ordinated support from health and social services [3, 17, 28]. Additionally, when ME patients stop visiting their GP it is recommended that reasons for non-attendance are sought. Collation and consideration of such feedback could usefully inform subsequent investigation.

This study found also that gender was an important factor. Specifically, women were more likely to visit their GP than men. Indeed, analysis of gender revealed that women were more likely to visit their GP more than 5 times a year (40.3%) compared with men (23.1%). Psychology has long recognised the importance of gender [6, 29, 30] which is most usefully considered as a function of social and developmental factors rather than as an essentialist actuality. Sandberg, Pasterski, and Callens, [31] for example argued that different psychosexual developmental experiences manifest in women as a sense of self that is relational, whereas men’s sense of self is more independent and less contingent on interpersonal connection [5, 23, 30].

Gender differences in health service access have received relatively little attention in the UK. When studies evaluate gender, they focus typically on women’s issues, particularly male privilege [6, 32]. The present article highlighted the fact that men also possess important healthcare needs. Hence, effective provision needs to recognise the needs of all gender groups. Haslam [33] argues that, from clinical and health perspectives, in order to engage usefully with identity (including gender) researchers need to work with an individual’s sense of self rather than across it. Study findings recommend that health care professionals would benefit from increased awareness of this issue.

One mechanism through which gender differences may arise is stereotyping. Stereotyping defines appropriate and relevant behaviours within particularly contexts and guides expectations [30, 34, 35]. For example, the typical male stereotype implies that a person has psychological capability, goal-orientation, self-confidence as well as social dominance [30, 35]. This implies that men are resilient [34]. Moreover, the male stereotype positions ‘real’ men as being invulnerable [29, 35].

Importantly this process of categorization links to existing social relations, [22, 23, 36], including relationships with medical service providers [4, 6]. The norms of stoicism and control associated with masculinity often prevent men from seeking healthcare where they believe they risk lapsing into a passive and/or ‘feminine’ sick role that is associated with weakness [32]. The argument presented in this paper, driven by the finding that men are less likely to be engaged with their GP, is that medical practitioners need to engage with men, recognize and harness these male identities/stereotypes and norms by working with, rather than across them [4, 22, 33].

A final important variable was geographic location. Isakson et al. [37] contend that when there are preventable health inequities between people, the distribution of health resources that shape the inequity require consideration. Such questioning is the raison d’être of Healthwatch networks. Indeed, Healthwatch Trafford commissioned this patient experience gathering exercise because of reported patient issues within the Greater Manchester region. Specifically, they were keen to determine whether there were variances in ME treatment compared with the rest of the UK. Results revealed a significant difference. Greater Manchester residents living with ME visited their GPs more frequently than those living in the rest of the country did. Future research should attempt to unpack this finding in order to identify what this might be.

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Cerebral blood flow is reduced in severe ME/CFS patients during mild orthostatic stress testing: an exploratory study at 20 degrees of head-up tilt testing

Cerebral blood flow is reduced in severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients during mild orthostatic stress testing: an exploratory study at 20 degrees of head-up tilt testing, by C (Linda) MC van Campen, Peter C Rowe  and Frans C Visser in Healthcare 2020, 8(2), 169, 13 June 2020 [doi.org/10.3390/healthcare8020169]  (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

 

Research abstract:

Introduction:

In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70 degrees, 90% had an abnormal reduction in cerebral blood flow (CBF).

A standard head-up tilt test of this duration might not be tolerated by the most severely affected bed-ridden ME/CFS patients. This study examined whether a shorter 15-min test at a lower 20 degree tilt angle would be sufficient to provoke reductions in cerebral blood flow in severe ME/CFS patients.

Methods and results:

Nineteen severe ME/CFS patients with orthostatic intolerance complaints in daily life were studied: 18 females. The mean (SD) age was 35(14) years, body surface area (BSA) was 1.8(0.2) m2 and BMI was 24.0(5.4) kg/m2. The median disease duration was 14 (IQR 5–18) years. Heart rate increased, and stroke volume index and end-tidal CO2 decreased significantly during the test (p ranging from <0.001 to <0.0001). The cardiac index decreased by 26(7)%: p < 0.0001. CBF decreased from 617(72) to 452(63) mL/min, a 27(5)% decline.

All 19 severely affected ME/CFS patients met the criteria for an abnormal CBF reduction.

Conclusions:

Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt.

These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS.

4.1. Clinical Implications

Patients are advised to lie down when they experience orthostatic intolerance complaints. Our findings of a clinically significant cerebral blood flow reduction at just 20 degrees suggest that a slight head-up position may not be adequate enough to resolve symptoms of orthostatic intolerance in some patients. Furthermore, the European Society of Cardiology syncope guidelines and other papers advocate the use of a nocturnal head-up position of more than 10 degrees to prevent nocturnal polyuria and the consequent circulatory underfilling [45,46,47,48]. In light of the presented results, this advice has the potential to be detrimental in some ME/CFS patients.

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Risk factors for suicide in CFS

Risk factors for suicide in chronic fatigue syndrome, by Madeline L Johnson, Joseph Cotler, Julia M Terman & Leonard A Jason in Death Studies,12 Jun 2020 [doi: 10.1080/07481187.2020.1776789]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) includes symptoms such as post-exertional malaise, unrefreshing sleep, and cognitive impairments.

Image by Gerd Altmann from pixabay.com Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area.

This study explores risk factors for suicide among 64 individuals with ME/CFS using archival data, 17 of which died from suicide.

Results indicated an increased risk of suicide for those utilizing the label CFS, for those with limited overall functioning, and for those without comorbid illnesses. Findings suggest that stigma and functional impairments limit access to care and social supports.

Read full paper

 

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Carers Week 8-14 June 2020: Making caring visible

Carers Week 2020: Making caring visible

 

Carers Week is an annual campaign to raise awareness of caring and

  • highlight the challenges unpaid carers face
  • recognise the contribution they make to families and communities throughout the UK
  • help people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.

People with ME want to say thank you to everyone who helps them when they need support!

We want to make Caring Visible to help carers get the information and support they need. This guide outlines 10 steps to help carers think about the support they might need:

Are you looking after someone unpaid?: essential information for unpaid carers

Ydych chi’n gofalu ar ôl rhywun yn ddi-dâl?: gwybodaeth bwysig I ofalwyr di-dâl

Find out more about caring from:

WAMES helpline   Carers Trust   Carers Wales    Age Cymru    local council

Learning for Living – using your skills

The free interactive e-learning programme, Learning for Living, helps carers develop greater understanding of the unique skills and knowledge they use on a day-to-day basis in their caring role, and how they can transfer these skills to the workplace. Available in Welsh or English.

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