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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Theory: treatments for prolonged ICU patients may provide new therapeutic avenues for ME/CFS

Posted on 05/28/2021 by wames

Theory: treatments for prolonged ICU patients may provide new therapeutic veanues for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), by Dominic Stanculescu,  Lars Larsson and  Jonas Bergquist in Front. Med. 7 May 2021 [doi.org/10.3389/fmed.2021.672370]

 

Article abstract:

We here provide an overview of treatment trials for prolonged intensive care unit (ICU) patients and theorize about their relevance for potential treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Specifically, these treatment trials generally target:

(a) the correction of suppressed endocrine axes, notably through a “reactivation” of the pituitary gland’s pulsatile secretion of tropic hormones, or

(b) the interruption of the “vicious circle” between inflammation, oxidative and nitrosative stress (O&NS), and low thyroid hormone function.

There are significant parallels in the treatment trials for prolonged critical illness and ME/CFS; this is consistent with the hypothesis of an overlap in the mechanisms that prevent recovery in both conditions. Early successes in the simultaneous reactivation of pulsatile pituitary secretions in ICU patients—and the resulting positive metabolic effects—could indicate an avenue for treating ME/CFS. The therapeutic effects of thyroid hormones—including in mitigating O&NS and inflammation and in stimulating the adreno-cortical axis—also merit further studies.

Collaborative research projects should further investigate the lessons from treatment trials for prolonged critical illness for solving ME/CFS.

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Video: Long COVID, Post Viral Fatigue Syndrome & ME/CFS

Posted on 05/26/2021 by wames

A new video from Broken Battery describes the overlap in symptoms between Long COVID, Post-Viral Fatigue Syndrome and ME/CFS.

 

Video link: https://www.youtube.com/watch?v=_LOvXta5ZaA

Excerpts from video:

Research that monitored people over time found that many people with Post Viral Fatigue Syndrome recover within a year of the initial infection [6]. In a small minority of cases patients can go on to develop ME/CFS, a complex multi system disease often triggered by a virus or infection [7].

Preliminary research into Long COVID suggests there are many overlaps with ME/CFS [8]. A significant number of people with Long COVID could meet the diagnostic criteria for ME/CFS [9].

The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months. In a large survey of Long COVID patients a high proportion reported that they experience Post Exertional Malaise and suffered relapses after activity [10].

 

See more videos from Broken Battery about the PACE trial and the lost decades in research and care.

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Deconditioning does not explain orthostatic intolerance in ME/CFS

Posted on 05/24/2021 by wames

Deconditioning does not explain orthostatic intolerance in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), by C (Linda) MC van Campen, Peter C Rowe & Frans C Visser  in Journal of Translational Medicine vol 19, no. 193 (2021) [doi.org/10.1186/s12967-021-02819-0]

 

Research abstract:

Background:
Orthostatic intolerance (OI) is a frequent finding in individuals with myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Published studies have proposed that deconditioning is an important pathophysiological mechanism in various forms of OI, including postural orthostatic tachycardia syndrome (POTS), however conflicting opinions exist. Deconditioning can be classified objectively using the predicted peak oxygen consumption (VO2) values from cardiopulmonary exercise testing (CPET). Therefore, if deconditioning is an important contributor to OI symptomatology, one would expect a relation between the degree of reduction in peak VO2 during CPET and the degree of reduction in CBF during head-up tilt testing (HUT).

Methods and results:
In 22 healthy controls and 199 ME/CFS patients were included. Deconditioning was classified by the CPET response as follows: %peak VO2 ≥ 85% = no deconditioning, %peak VO2 65–85% = mild deconditioning, and %peak VO2 < 65% = severe deconditioning. HC had higher oxygen consumption at the ventilatory threshold and at peak exercise as compared to ME/CFS patients (p ranging between 0.001 and < 0.0001).

Although ME/CFS patients had significantly greater CBF reduction than HC (p < 0.0001), there were no differences in CBF reduction among ME/CFS patients with no, mild, or severe deconditioning. We classified the hemodynamic response to HUT into three categories: those with a normal heart rate and blood pressure response, postural orthostatic tachycardia syndrome, or orthostatic hypotension. No difference in the degree of CBF reduction was shown in those three groups.

Conclusion:
This study shows that in ME/CFS patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. An abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME/CFS patients regardless of their %peak VO2 results on cardiopulmonary exercise testing.

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COVID-19 symptoms over time: comparing long-haulers to ME/CFS

Posted on 05/21/2021 by wames

COVID-19 symptoms over time: comparing long-haulers to ME/CFS, by
Leonard A Jason, Mohammed F Islam, Karl Conroy, Joseph Cotler, Chelsea Torres, Mady Johnson in Fatigue: Biomedicine, Health & Behavior 05 May 2021 [doi.org/10.1080/21641846.2021.1922140]

 

Research Abstract: 

Introduction:
Our objective was to determine which symptoms among long-hauler COVID-19 patients change over time, and how their symptoms compare to another chronic illness group.

Methods:
278 long-haulers completed two symptom questionnaires at one time point, with one recounting experiences during the first two weeks of their illness, an average of 21.7 weeks prior. We used a comparison group of 502 patients diagnosed with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Participants completed a standardized symptom questionnaire and a list of additional CDC COVID-19 symptoms.

Results:
Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms. When compared to ME/CFS, the COVID-19 sample was initially more symptomatic for the immune and orthostatic domains but over time, the long-haulers evidenced significantly less severe symptoms than those with ME/CFS, except in the orthostatic domain. Among the COVID-19 long haulers, several neurocognitive symptoms got worse over time, whereas improvements occurred in most other areas.

Conclusions:
These types of differential patterns of symptoms over time might contribute to helping better understand the pathophysiology of those reporting prolonged illness following COVID-19.

 

Health Day: ‘Brain Fog’ Can Linger With Long-Haul COVID, by Cara Murez, 24 May 2021

As researchers work to learn more about COVID-19 and so-called long-haulers, a new study suggests “brain fog” can persist and even worsen for those who were infected months before.

Long-haulers continue to have symptoms long after their COVID diagnosis, and these symptoms can be mental as well as physical.

“People have trouble problem-solving, or they get in the car and forget where they’re supposed to be going,” said study author Leonard Jason, a psychologist at DePaul University in Chicago.

Study Suggests Long COVID is Becoming More Like Chronic Fatigue Syndrome (ME/CFS), by Cort Johnson, 17 May 2021

Article Conclusion:

Time will tell how this all plays out, but for right now, except for some cardiovascular symptoms that were expected to be heightened in the COVID-19 group, the long-COVID patients over time are looking more and more like people with ME/CFS. The same general symptom theme – PEM, fatigue, cognitive and sleep problems – is dominant in both diseases. PEM – the distinguishing factor in ME/CFS – is also the most prominent and troublesome factor in long COVID as well.

Some of the early symptoms of long COVID distinguished themselves from those found in the ME/CFS group, but they appeared to be mostly with an ongoing immune response, and most declined substantially over time.

The general merging of the symptoms of long COVID and ME/CFS appeared to be reminiscent of the early ME outbreaks. The outbreaks – which tended to be triggered by different pathogens – featured a disparity in symptoms in the early stages of the illness, which tended to resolve to a similar theme of fatigue, PEM, cognitive problems, etc.

If the long-COVID group does turn out to mimic the ME/CFS group, the long-COVID patients might be able to look forward to some reduction in orthostatic symptoms, but overall, some symptom worsening. On the bright side, while their symptoms may get worse, at least in general, they don’t appear likely to get much worse.

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