Systematic review of sleep characteristics in ME/CFS

Posted on 06/15/2021 by wames

Systematic review of sleep characteristics in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by  Rebekah Maksoud, Natalie Eaton-Fitch, Michael Matula, Hélène Cabanas, Donald Staines and Sonya Marshall-Gradisnik in Healthcare 2021, 9(5), 568; 11 May 2021  [doi.org/10.3390/healthcare9050568] (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

 

Review abstract:

Background

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multifaceted illness characterized by profound and persistent fatigue unrelieved by rest along with a range of other debilitating symptoms. Experiences of unrefreshing and disturbed sleep are frequently described by ME/CFS patients.

This is the first systematic review assessing sleep characteristics in ME/CFS. The aim of this review is to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing.

Methods

The following databases—Pubmed, Embase, Medline (EBSCO host) and Web of Science, were systematically searched for journal articles published between January 1994 to 19 February 2021. Articles that referred to polysomnography or multiple sleep latency testing and ME/CFS patients were selected, and further refined through use of specific inclusion and exclusion criteria. Quality and bias were measured using the Joanna Briggs Institute checklist.

Results

Twenty observational studies were included in this review. The studies investigated objective measures of sleep quality in ME/CFS. Subjective measures including perceived sleep quality and other quality of life factors were also described.

Conclusions

Many of the parameters measured including slow- wave sleep, apnea- hypopnea index, spectral activity and multiple sleep latency testing were inconsistent across the studies. The available research on sleep quality in ME/CFS was also limited by recruitment decisions, confounding factors, small sample sizes and non-replicated findings. Future well-designed studies are required to understand sleep quality in ME/CFS patients.

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Video: Fatigue, pacing & PEM – lessons for long COVID from ME/CFS

Posted on 06/11/2021 by wames

Fatigue, Pacing and PEM management: lessons from ME/CFS – with Dr Ben Marsh

 

Dr Asad Khan talks to Dr Ben Marsh about his experience of ME/CFS over the last 4 years, and what lessons the Long COVID community can learn about activity management, fatigue and post exertional malaise.

0:00 Introduction
1:17 Life before ME
2:02 When did it change?
2:50 The first 12 months
3:45 When ME kicked in
5:30 The Symptoms
8:53 PEM and its invisibility
11:40 The label of ‘pyschosomatic’
19:34 Graded Exercise Therapy
26:29 NICE removal of GET
27:51 PEM / GET risk
29:26 Difficulty of pacing
33:30 Physiology of PEM
38:52 CBT as a treatment
41:12 Summary

Follow Dr Ben Marsh on twitter @bendymarsh

REFERENCES:

1) Nina Muirhead talk. https://me-pedia.org/wiki/Nina_Muirhead8 min – mitochondrial energy score 13 min – Quality of life & disease burden 15min – PEM: mental arithmetic

2) POTS & ME. Using invasive CPET. http://endmecfs.mgh.harvard.edu/icpet/

3) Dialogues MECFS films on science behind PEM and Pacing and Graded Exercise therapy https://www.dialogues-mecfs.co.uk/vid…

4) Patients account of symptoms, Dialogues for ME, including videos with ME patients discussing:  – reduced function – disease start – PEM – Cognitive impairment – sleep dysfunction – orthostatic intolerance – Pain – hypersensitivity https://www.dialogues-mecfs.co.uk/fil…

5) Kindlon T (2011) Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/ chronic fatigue syndrome. Bulletin of the IACFS/ME 192: 59–111.

“Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.” https://www.researchgate.net/publicat…

6) Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. 2019;24(10):1318-1333. doi:10.1177/1359105317726152

Table 4.  Summary of key symptom change data from ME/CFS patient surveys (2000–2015). Deterioration (slightly or much worse) CBT 17% GET 54% https://www.dropbox.com/s/zn49o3rsukb…

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UK Gov told: measure the percentage of people who developed CFS/ME after being infected with covid-19

Posted on 06/09/2021 by wames

Risk that debilitating fatigue after covid-19 might last years: Evidence report for the House of Lords Select Committee on Risk Assessment and Risk Planning (RSK0037), by Caroline Kamau, Birkbeck (University of London) January 27, 2021

 

The House of Lords Select Committee on Risk Assessment and Risk Planning has been receiving evidence on COVID-19. Dr Caroline Kamau is a senior lecturer in organisational psychology at Birbeck University, specialising in research about occupationally preparing medical doctors, nurses and patients.

Excerpt:

The House of Lords must alert the government about evidence showing that
“long covid” (which includes debilitating fatigue and negative health effects) might last for years among sufferers, posing a long-term risk to the nation’s
workforce and economy. This report discusses evidence that viruses can trigger long-term fatigue that severely impairs the personal and occupational
functioning of sufferers, including evidence from populations affected by SARS-CoV-1 where 1 in 4 had debilitating chronic fatigue lasting over 4 years later.

Due to post-viral chronic fatigue being a condition that can force people into
becoming housebound or unable to work, the House of Lords must alert the
government of the risks currently facing people within the UK who were infected with covid-10:

Key points

  • There is the risk of higher unemployment rates among people who had covid-19.
  • There is the risk of higher underemployment rates among people who
    had covid-19 e.g., more switching to part-time working or lower skilled jobs because of health problems.
  • There is the risk of future staff shortages in occupations with a high
    prevalence of covid-19.

Dr Kamau goes on to say that:

SARS-CoV-1 had fatigue so severe and life-changing in its debilitating effects on occupational/other functioning that it met the diagnostic criteria for a medical condition known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) as much as 4 years on…

whereas CFS/ME is prevalent among only 1.4%±1.57%.of the general population its prevalence among the people infected with SARS-CoV-1 outbreak was significantly higher at 27.1%.3 SARS-CoV-1 is not alone in inducing debilitating post-viral fatigue that can last months or years; other viruses can have a similar effect e.g. the west Nile virus, Epstein Barr virus and infectious mononucleosis4 where the prevalence of CFS/ME is also markedly higher than the general population…

Key point

  • Based on the evidence, this report encourages the government to
    measure the percentage of people who developed CFS/ME after being infected with covid-19.

How the government can assess and mitigate the risks to the UK workforce

The House of Lords Select Committee on Risk Assessment and Risk Planning
should ask the government to:

A. Conduct research (such as through Office for National Statistics surveys)
revealing the prevalence of post-covid-19 CFS/ME…

B. The government should … estimate the risk of post-covid-19 CFS/ME across the population and the risk by occupation, to identify high risk groups and forecast future workforce shortages.

C. The government should target interventions against staff shortages,
unemployment and underemployment with a focus on occupations at high
risk of post-covid-19 CFS/ME…

D. The government should issue guidance… to NHS primary and social care staff about how to diagnose and advise people with post-covid-19 CFS/ME.

E. The government should provide employers with occupational health
guidance to help them better support employees…

F. The government should…find ways of preventing or treating post-covid-19 CFS/ME.

Key point
The government should measure prevalence of post-covid-19 CFS/ME, conduct modelling to assess high risk occupational groups, intervene to prevent unemployment, underemployment and workforce shortages, guide healthcare staff, advise employers/workers, and inspire research into prevention of post-covid-19 CFS/ME.

Read the full report

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Warning signals of Post-Exertional Malaise in ME/CFS

Posted on 06/09/2021 by wames

Warning Signals of Post-Exertional Malaise in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A retrospective analysis of 197 patients, by Alaa Ghali, Carole Lacout, Maria Ghali, Aline Gury, Estelle Delattre, Christian Lavigne and Geoffrey Urbanski in J. Clin. Med. 2021, 10(11), 2517; [doi.org/10.3390/jcm10112517] 7 June 2021 (This article belongs to the Section Clinical Neurology)

 

Research abstract:

Post-exertional malaise (PEM), the key feature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), is characterized by baseline symptom exacerbation after exposure to a stressor, and some patients can experience new or non-typical symptoms.

We hypothesized that new or non-typical symptoms occurring long enough before onset of baseline symptom exacerbation could be warning signals predicting PEM.

Adult ME/CFS patients who attended the internal medicine department of Angers University Hospital (France) between October 2011 and December 2019 were included in a retrospective medical records review. Patients who experienced one or more new or non-typical symptoms before baseline symptom exacerbation were compared with the rest of the study population for PEM features, epidemiological characteristics, fatigue features, and comorbidities.

New or non-typical symptoms preceded baseline symptom exacerbation in 27/197 (13.7%) patients, and the most frequent ones were mood disorders (37%). When compared to the rest of the study population, only PEM intensity was significantly lower in these patients (p = 0.004), even after adjustment for sex and age at disease onset (p = 0.007).

New or non-typical symptoms preceding baseline symptom exacerbation in some ME/CFS patients could be warning signals for PEM. Their identification could help preventing PEM occurrences or reducing their intensity leading to improving disease prognosis.

Excerpt fr0m paper:

4. Discussions 

… Besides mood disorders, we observed other frequent prodromal new or non-typical symptoms, such as nausea, paresthesia, and headaches. Interestingly, despite their heterogeneity and large variability between patients, prodromal new or non-typical symptoms often remained the same for each patient, which reinforces their predictive power.

One can wonder whether medication intake in patients with comorbid reactional depression or fibromyalgia to relieve symptoms can hinder the emergence of prodromal new or non-typical symptoms. In the current study, there were no significant differences in medication intake between patients both diagnosed with comorbid reactional depression and/or fibromyalgia and exhibiting prodromal new or non-typical symptoms when compared to the rest of the study population (Supplementary Table S1). Therefore, medication intake in these patients did not appear to affect the emergence of warning signals.

One question, however, remains unanswered: why a proportion of patients experienced new or non-typical symptoms before onset of baseline symptom exacerbation while others did not. Overall, the features and pathophysiology of PEM are still not well understood. Nevertheless, there is a growing body of evidence that PEM affects a variety of physiological systems.

Studies that used maximal and submaximal exercise to elicit PEM showed altered cardiorespiratory responses [24], impaired pain regulation [25], impaired cognitive performance and affected brain function [26], altered gut microbiome and increased bacterial translocation [27], and immune involvement [28]. Mitochondrial dysfunction was also discussed as having a role in the nature of PEM [29], not only after exercise [30], but also in resting conditions [31]. Research addressing this issue must be conducted.

5. Conclusions
Taking warning symptoms into consideration could alert patients to the fact that they are going beyond their energy reserves and therefore have to reduce or stop their activity level in order to avert PEM occurrence. Consequently, it seems necessary to systematically look for prodromal new or non-typical symptoms, which are different from those usually experienced by ME/CFS patients.

To do this, self-report questionnaires intended to assess PEM among these patients should include specific questions designed to examine the presence of the prodromal phase, explore warning symptoms that might occur after exposure to a PEM stressor and before onset of baseline symptom exacerbation, and specify whether or not these symptoms are different from those habitually experienced by patients.

Similarly, and given that patients with ME/CFS usually show difficulties in predicting PEM occurrence, especially when the onset of baseline symptom exacerbation is delayed after the stressor, they must learn how to identify and recognize which warning signs, if any, may herald PEM onset, and be informed about how the impending threat of PEM could be avoided.

To achieve this, it is important to facilitate access for patients to therapeutic educational programs, and raise awareness among primary care physicians about ME/CFS, in particular PEM issues.

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Carers Week 2021: make caring visible and valued

Posted on 06/08/2021 by wames

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.

It also helps 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!

 

Breaks or breakdown, a new report, found fewer than 1 in 5 (14%) exhausted unpaid carers are confident that the support they receive with caring will continue following the COVID-19 pandemic.

The 6 charities supporting Carers Week – Carers Wales, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB & Rethink Mental Illness – are calling on the UK and Welsh Governments to ensure unpaid carers providing significant hours of care get the breaks they need.

The Princess Royal Respite Fund For Carers – register with a Partner to apply for support

Carers Wales invites carers to share a cuppa via zoom, to connect with other carers and hear from organisations from across Wales.

 

Find out more about caring from:
WAMES helpline   Carers Trust   Carers Wales    Age Cymru    local council

Learning for living – an online programme for carers – ‘a useful tool that will boost your confidence to take on life. On completion you will have a badge to present to your current or future employer so they will recognise your skills.’

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Post-exertional malaise may be related to central blood pressure, sympathetic activity & mental fatigue in CFS patients

Posted on 06/08/2021 by wames

Post-exertional malaise may be related to central blood pressure, sympathetic activity and mental fatigue in Chronic Fatigue Syndrome patients, by Slawomir Kujawski, Joanna Slomko, Lynette Hodges, Derek F H Pheby, Modra Murovska, Julia L Newton, Paweł Zalewski in J. Clin. Med. 2021, 10(11),  2327;  [doi.org/10.3390/jcm10112327]

 

Research abstract:

Post-exertional malaise (PEM) is regarded as the hallmark symptom in chronic fatigue syndrome (CFS). The aim of the current study is to explore differences in CFS patients with and without PEM in indicators of aortic stiffness, autonomic nervous system function, and severity of fatigue.

One-hundred and one patients met the Fukuda criteria. A Chronic Fatigue Questionnaire (CFQ) and Fatigue Impact Scale (FIS) were used to assess the level of mental and physical fatigue. Aortic systolic blood pressure (sBPaortic) and the autonomic nervous system were measured with the arteriograph and Task Force Monitor, respectively. Eighty-two patients suffered prolonged PEM according to the Fukuda criteria, while 19 did not.

Patients with PEM had higher FIS scores (p=0.02), lower central systolic blood pressure (p=0.02) and higher mental fatigue (p=0.03). For a one-point increase in the mental fatigue component of the CFQ scale, the risk of PEM increases by 34%. For an sBPaortic increase of 1 mmHg, the risk of PEM decreases by 5%. For a one unit increase in sympathovagal balance, the risk of PEM increases by 330%.

Higher mental fatigue and sympathetic activity in rest are related to an increased risk of PEM, while higher central systolic blood pressure is related to a reduced risk of PEM. However, none of the between group differences were significant after FDR correction, and therefore conclusions should be treated with caution and replicated in further studies.

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Volunteer with WAMES – be the missing piece of the Team

Posted on 06/04/2021 by wames

Volunteer with WAMES – Could you be the missing piece?

 

WAMES is a charity run solely by volunteers who wish to ‘make a difference for ME‘ in Wales.

 

We invite you to share your skills, experiences, ideas and enthusiasm with our Teams – in small or big ways – over weeks, months or years – in ways and at times that are suitable for you.

Communications Team

Welsh language – we currently have no native Welsh speakers on the team and we wish to make all our outreach more relevant to the ME community in Wales.

Social Media – We want to build on our active Facebook and Twitter presence and reach more people with our new Instagram account. Help us create content and manage the accounts.

Websites – our 2 WordPress websites and blogs need an overhaul, new direction and content to meet the changing environment we live in!

E-newsletter – we want to develop our e-communications with the ME community.

Fundraising Team

Help us identify & tap into a variety of fundraising methods such as online, corporate.

Administration Team

Support the secretary to run the organisation, develop a remote office or maintain records, memberships and policies.

tea-handsCampaigns & Awareness Team

We need your specialised knowledge to help us make better use of surveys, polls, research and metrics when presenting the case for better services in Wales for people with ME.

Trustees

Join us as a trustee and help us plan the future work of WAMES, meet all legal requirements and ensure we stay on track.

Find out more about how we think you can get involved or make other suggestions – email Sharon sharon@wames.org.uk and arrange to have a chat.

Please note:

  • Training can be arranged & expenses will be paid
  • Online access will be necessary for most tasks but we may be able to provide some help with that
  • To allow for fluctuating health and commitments we aim to structure  tasks so they can be done as a ‘role share’ or as part of a team.
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Medical school education on ME

Posted on 06/04/2021 by wames

Medical school education on Myalgic Encephalomyelitis, by Nina Muirhead, John Muirhead, Grace Lavery and Ben Marsh in Medicina 2021, 57(6), 542; [doi.org/10.3390/medicina57060542] 28 May 2021 (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Research abstract:

Background and objectives:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed.

For two decades, the medical education establishment in the UK has been challenged to remedy these failings, but little has changed. Meanwhile, there has been an exponential increase in biomedical research and an international paradigm shift in the literature, which defines ME/CFS as a multisystem disease, replacing the psychogenic narrative. This study was designed to explore the current UK medical school education on ME/CFS and to identify challenges and opportunities relating to future ME/CFS medical education.

Materials and methods:

A questionnaire, developed under the guidance of the Medical Schools Council, was sent to all 34 UK medical schools to collect data for the academic year 2018–2019.

Results: 

Responses were provided by 22 out of a total of 34 medical schools (65%); of these 13/22 (59%) taught ME/CFS, and teaching was led by lecturers from ten medical specialties. Teaching delivery was usually by lecture; discussion, case studies and e-learning were also used. Questions on ME/CFS were included by seven schools in their examinations and three schools reported likely clinical exposure to ME/CFS patients.

Two-thirds of respondents were interested in receiving further teaching aids in ME/CFS. None of the schools shared details of their teaching syllabus, so it was not possible to ascertain what the students were being taught.

Conclusions: 

This exploratory study reveals inadequacies in medical school teaching on ME/CFS. Many medical schools (64% of respondents) acknowledge the need to update ME/CFS education by expressing an appetite for further educational materials. The General Medical Council (GMC) and Medical Schools Council (MSC) are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose and treat ME/CFS. The GMC is urged to consider creating a registered specialty encompassing ME/CFS, post-viral fatigue and long Covid.

 

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Introducing WAMES volunteers: Tony Thompson

Posted on 06/02/2021 by wames

Introducing WAMES volunteers: Acting Secretary

 

How on earth  did I get involved in ME?

Tony’s favourite photo of himself: driving a tram

Like several other major changes in my life, such as becoming a librarian and then a lecturer (the last thing I ever wanted to do then was to teach!), becoming a volunteer for WAMES was not planned but caused by circumstances beyond my control!

More than 35 years ago, my lovely, bubbly wife got ME, and became seriously ill and inevitably, in part, a different person. So I became Jan’s carer, reluctantly at first as it took some years before either of us could really come to terms with what this all meant.

Then Jan joined the Mid Wales ME Group, which was often held at our house, and I became tea boy, and later took part in the production of the newsletter. Jan’s involvement developed considerably, the previous Chairman retired from worsening health, and I suddenly found myself promoted from tea boy to Chairman of the Group.

Then came the inception of WAMES, and after a short time I found myself promoted again from Jan’s driver to Trustee and Publications Officer. I worked on the development of the Website, designed the logos for WAMES and other ME related groups, and attempted to give our publications a more ‘professional’ image. Jan later edited the WAMES Magazine, and I undertook its production, printing  and distribution, in those days, by post. I also stood in for any post that became temporarily vacant and work as Jan’s computer sorter-outer!

I am immensely proud of what we have achieved through WAMES. Although progress has been two steps forward and one back, I do believe WAMES has made a difference. There is a greater awareness in the Medical Profession in Wales, and in Welsh Government. I am hopeful that the development of Long Covid and the greater acceptance of ME (and there is much in common between these 2 illnesses) will lead to improvements more quickly than in the past.

Although I have now, to my surprise, reached what could be described as my ‘mature’ years, I hope to be able to continue to support WAMES in whatever way I can. Those of us who have had to watch people we love struggle constantly with ME know how important it is that groups like WAMES continue to inform and fight for better support and conditions for those afflicted with this wretched illness.

Read other volunteers’ stories:

Michelle

Mia

Jan

Sharon

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Identifying & managing suicidality in ME/CFS

Posted on 06/02/2021 by wames

Identifying and managing suicidality in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, Lily Chu, Meghan Elliott, Eleanor Stein, Leonard A Jason in Healthcare Vol 9, #6, 629 May 25, 2021 (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected) [doi.org/10.3390/healthcare9060629]

 

Research abstract:

Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and managing suicidality in an outpatient medical setting. A clinical case is used to illustrate how information from this article can be applied.

Characteristics of ME/CFS that make addressing suicidality challenging include absence of any disease-modifying treatments, severe functional limitations, and symptoms which limit therapies. Decades-long misattribution of ME/CFS to physical deconditioning or psychiatric disorders have resulted in undereducated healthcare professionals, public stigma, and unsupportive social interactions. Consequently, some patients may be reluctant to engage with mental health care.

Outpatient medical professionals play a vital role in mitigating these effects. By combining evidence-based interventions aimed at all suicidal patients with those adapted to individual patients’ circumstances, suffering and suicidality can be alleviated in ME/CFS. Increased access to newer virtual or asynchronous modalities of psychiatric/psychological care, especially for severely ill patients, may be a silver lining of the COVID-19 pandemic.

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