ME/CFS & Covid-19: information for you & your doctor

COVID-19 Information and Resources – Bateman Horne Center, March 2020

 

Dr Lucinda Bateman

The Bateman Horne Center works for the medical advancement and treatment of  Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)and Fibromyalgia in Salt Lake City, Utah, USA.

In addition to the resources for patients and doctors on ME/CFS they have produced some briefing papers on Covid-19 and ME/CFS, many of which are helpful people from anywhere in the world.

Dr Suzanne Vernon

 

 

Medical Director: Dr Lucinda Bateman

Researcher: Dr Suzanne Vernon

 

 

Medical Considerations Letter — In the event you become acutely ill, the Medical Care Considerations Letter serves as a guiding resource for outside medical care intervention. The intent of this letter is to provide care professionals with further information about your illness of ME/CFS and/or severe FM to assist them with their medical intervention decisions.

“you should assume they have a serious, chronic, multisystem illness that may negatively impact their prognosis”

“Based on current evidence the underlying pathology of ME/CFS involves energy metabolism, the nervous system, and the immune system.”

COVID-19 and ME/CFS/FM Frequently Asked Questions: Drs. Bateman and Yellman answer specific questions about COVID-19 as it relates to ME/CFS/FM.

e.g. Are people with ME/CFS/FM at a higher risk than the general public of dying from COVID-19 if contracted? … The immune dysregulation of ME/CFS/FM may reduce ability to fight viral infections. Additionally, the presence of chronic inflammation, allergies, asthma, mast-cell activation may pose additional risks.

Suzanne D. Vernon, PhD, addresses: SARS, CoV-2, and COVID-19: A scientific overview of COVID-19, infection/transmission, testing, and treatments on the horizon.

Advance Care Planning: The Advance Care Planning document provides guidance for establishing advanced-care-directives and POLST documents.

Personal Guidance and Decision Making

e.g. Advance Directives: Everyone, not just those with ME/CFS, should document end-of-life wishes on paper regarding aggressive medical care in a life-threatening situation. Discuss with family and medical professionals as needed.

Videos

 

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ME, Covid-19 & self-isolating

What do people with ME need to know about Covid-19 and self-isolating?              updated 10 April 2020

 

The Health Minister for Wales has confirmed that people over 70 and people with a range of health conditions, including  neurological conditions, should self-isolate. People with a cough and/or high temperature are asked to self isolate for 7 days. Those who have had contact with someone with confirmed Covid-19 should self-isolate for 14 days. Everybody should stay at home except for essential shopping, short daily exercise a day, essential medical needs, travelling to and from essential work, but only where this cannot be done from home. Social distancing is required by all people when outside the home.

Many people with ME have been self-isolating to some extent for years, because they have been too ill to mix with others. They will be practised in ensuring they have enough food, cleaning products, personal care items, ‘distractions’ and medications, but the coronavirus Covid-19 poses some extra problems and questions.

Much is still not known about this new virus, but some clues are emerging from US research and from the badly affected countries of China and Italy.

People don’t have to have symptoms to be infectious

  • symptoms appear 2-14 days after infection
  • infection can last weeks, up to 37 days (China)
  • people can be infectious before & after symptoms are apparent, or without symptoms
  • it is uncertain how many have no obvious symptoms and are spreading the virus
  • no symptoms doesn’t necessarily mean less able to spread the virus

Infected people without symptoms might be driving the spread of coronavirus more than we realized

 

What are the symptoms?

Regular flu has similar symptoms to COVID-19. However, COVID-19 is more likely to cause shortness of breath and other respiratory symptoms. Some people have only mild symptoms while others are very ill and struggle to breathe.

Coronavirus symptoms            Check your symptoms

 

How does the virus spread?

  • it might be airborne to a small extent
  • it definitely remains on surfaces
  • it probably doesn’t survive in water
  • it survives to some extent in faeces
  • they are unsure if it survives in sewerage systems
  • it enters the body via the eyes, nose, mouth, not through the skin
  • cats can catch it but it is uncertain if they can infect humans

Coronavirus can stay infectious for days on surfaces. But it’s still okay to check your mail

 

Who is most at risk?

Early indications in China and Italy was that the majority of people who died were over 60 with certain underlying health conditions, (but anyone can catch and pass on the virus):

  • heart disease
  • diabetes
  • hypertension – high blood pressure
  • chronic lung disease
  • some cancers

It has now become clear that younger people with no known health conditions can also be at risk.

It is unknown to what extent people with ME are at greater risk but Dr Nancy Klimas believes we could be, as ‘one of the underlying problems is that the cells protecting you against viruses are less functional because overworked.’  Dr Charles Shepherd says: ‘an infection such as this will almost certainly cause a relapse, or significant exacerbation of symptoms’.

Public health England’s updated list of those at risk & requiring social distancing,  which includes Neurological Conditions, the obese and pregnant women.

 

What distance is safe when social distancing?

It may not be possible to avoid close contact with people giving you care, or for whom you care, but all sources say where possible stay 2 metres or 6 feet away from other people. If people are moving (cyclists or runners) it may be wise to stay up to 10m away. Face masks won’t stop you catching the virus, but they may reduce the likelihood of passing it on to others.

Prof Hugh Pennington adds: “This virus needs 15 minutes of close contact with someone carrying it for you to have a reasonable chance of contracting it…But if someone who is infected coughs or sneezes on you directly then the droplets can infect you — that will be a much higher risk.”

 

How long does it last on surfaces?

When self isolating we will need to receive post, groceries etc. Are they safe? US researchers measured how long the virus stays active on various surfaces:

  • up to 24 hours on cardboard
  • up to 2 or 3 days on plastic and stainless steel.
  • it remained viable in aerosols—attached to particles that stay aloft in the air—for up to 3 hours.

Accept goods from outside, then put away perishables without contaminating other items. Either thoroughly wash the outside of the items or leave them until they are safe to touch.  Wash your hands and don’t touch your face!!

 

Can you become re-infected?

  • it is uncertain if or how long immunity lasts
  • it appears to be possible to relapse, though numbers are small
  • there are 2 variations of the virus and potentially it could mutate, though probably unlikely
  • in some countries testing for the presence of the virus may not be reliable so people only think they have recovered
  • most people recover but some experience reduced lung function following recovery, which will require some rehab
  • some concerns have been expressed that the virus may trigger an ME-like reaction as happened with SARS.

Coronavirus: can you get covid-19 twice or does it cause immunity

 

What kills the virus?

  • soap & water – dried by single use paper or warm air
  • alcohol based sprays on surfaces – leave 5 mins before wiping
  • hand sanitisers
  • chlorine
  • cooking removes any danger from food
  • bleach – disinfects, but pollutes- 5 tbsp (1/3 cup) of bleach per gallon of water

BBC: How long does the coronavirus last on surfaces?

 

When to get tested?

The UK is stepping up testing of frontline workers but still only wants to test those whose symptoms become serious due to shortage of tests – if experiencing severe symptoms ring 111 anywhere in Wales.  (Don’t press any numbers, just hold to be connected to NHS Wales, rather than NHS England)

 

How should it be treated?

Treatment for Coronavirus Disease (COVID-19)

 

How can I self-isolate?

Information on what it means to self-isolate in your home, or in a room within your home can be found on the UK Government website.  Increasingly local support schemes are being set up by concerned citizens to make it possible for people to self-isolate, even when they don’t have friends or family nearby, or access to online deliveries.

For info about how to get or give support, find your COVID-19 Facebook support group here Some Council & AVO websites list local sources of help and delivery services. Age Cymru and RVS provide support.

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Substrate utilisation of cultured skeletal muscle cells in patients with CFS

Substrate utilisation of cultured skeletal muscle cells in patients with CFS, by Cara Tomas, Joanna L Elson, Julia L Newton, Mark Walker in Scientific Reports Vol 10, no. 18232, October 26, 2020

 

Research abstract: 

Chronic fatigue syndrome (CFS) patients often suffer from severe muscle pain and an inability to exercise due to muscle fatigue. It has previously been shown that CFS skeletal muscle cells have lower levels of ATP and have AMP-activated protein kinase dysfunction.

This study outlines experiments looking at the utilisation of different substrates by skeletal muscle cells from CFS patients (n=9) and healthy controls (n=11) using extracellular flux analysis. Results show that CFS skeletal muscle cells are unable to utilise glucose to the same extent as healthy control cells. CFS skeletal muscle cells were shown to oxidise galactose and fatty acids normally, indicating that the bioenergetic dysfunction lies upstream of the TCA cycle.

The dysfunction in glucose oxidation is similar to what has previously been shown in blood cells from CFS patients. The consistency of cellular bioenergetic dysfunction in different  cell types supports the hypothesis that CFS is a systemic  disease. The retention of bioenergetic defects in cultured cells indicates that there is a genetic or epigenetic component to the disease.

This is the first study to use cells derived from skeletal muscle biopsies in CFS patients and healthy controls to look at cellular bioenergetic function in whole cells.

ME Research UK: Use of glucose for energy production in muscle cells from patients with ME/CFS

Key findings

    • Muscle cells from people with ME/CFS are less able to use glucose as a fuel to produce energy
    • This impairment in energy production may underlie the muscle fatigue that is characteristic of the illness
    • These results help narrow down where in the metabolic pathway the abnormality occurs
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CFS/ME in children aged 5 to 11 years: a qualitative study

Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: a qualitative study, by Amberly Brigden, Alison Shaw, Emma Anderson, Esther Crawley in Clinical Child Psychology and Psychiatry Oct 2020 [doi:10.1177/1359104520964528]

 

Research abstract:

Treatments for paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have not been designed or evaluated for younger children (5–11-years). The development of a complex intervention for this population requires an in-depth understanding of the perspectives and psychosocial context of children and families.

Children with CFS/ME (5–11-years) and their families were recruited from a specialist CFS/ME service, and interviewed using semi-structured topic guides. Data were analysed thematically. Twenty-two participants were interviewed; eight parents, two children (aged nine and ten) and six parent-child dyads (aged 5–11-years).

Theme 1: CFS/ME in younger children is complex and disabling.

Theme 2: Children aged eight and over (in comparison to those under eight) were more able to describe their illness, engage in clinical consultation, understand diagnosis and self-manage.

Theme 3: Parents of children under eight took full responsibility for their child’s treatment. As children got older, this increasingly became a joint effort between the parent and child.

Parents felt unsupported in their caring role. Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.

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The lonely, isolating & alienating implications of ME/CFS

The lonely, isolating, and alienating implications of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome by Samir Boulazreg and Ami Rokach in Healthcare 2020, 8(4), 413; [doi.org/10.3390/healthcare8040413]

 

Review abstract:

This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health.

Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described.

We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.

4.1. Summary

To reiterate, chronic illnesses that affect the central nervous system such as ME/CFS does produce psychosocial impairment in 40% of individuals [37]. Though this impairment varies from individual to individual, the age at which sufferers deal with the illness dictates broader and commonly reported themes. For example, adolescents plagued with this disorder miss significant amounts of schooling, which impedes social functioning and future career development skills and can lead to a loss of identity, all of which make young ME/CFS individuals question the meaning of life.

Additionally, a family who receives a diagnosis of ME/CFS for one of its members may experience disruptions of the family dynamic including sibling jealousies and rivalries, guilt, and, strained parent-child relationships resulting from parents and children needing to step into differing roles when assisting (e.g., a parent taking on the role of teacher when homeschooling or a child taking on the role of a parental figure when advising recommendations on what not to do). ME/CFS suffers who are single with no guardians and no dependents also have their own shares of concerns that they must deal with. This includes rumination and stress related to the financial impact of the disorder (e.g., the loss of work and the cost of treatment), fear about being unable to live a normal life and start a family, and decreased autonomy and an increase in reliance on a caregiver. Furthermore, the stigmatization of this illness results in dismissiveness and skepticism from peers, from authority figures (e.g., teachers and employers), and sometimes even from family members.

Concerning loneliness, the main focus of this article, we have provided a brief explanation of what loneliness is, how it may result in distress, unhealthy coping behaviors, and how it relates to chronic illness. In doing so, we have highlighted Leventhal et al.’s [78] study, which showed how one’s conceptualization of illness—e.g., the labeling of the illness and the perception of it, control over how one feels about it, expected consequences, and level of hopefulness—can greatly aid or vastly worsen one’s experience with their illness.

Several coping strategies that caregivers and sufferers of ME/CFS may benefit from were also mentioned, including empathetic behaviors, the attempt to stay in touch with the outside world, peer counseling, support groups, solitude, and the cognitive-behavior approach to how to think about the illness. Additionally, we emphasized the important role healthcare professionals can have with their patients and spoke about the power of spirituality and religiousness as a buffer to ME/CFS-induced loneliness.

4.2. Future Directions
As we previously mentioned at the beginning of this article, there is a lack of investigation surrounding loneliness and how it affects individuals with ME/CFS. As such, we would like to raise some questions that would be of interest and offer insights into conducting research studies with this population.

Questions that glaringly present themselves are: can adequately managed and prolonged exposure to social support networks mitigate symptoms of pain in ME/CFS patients? Additionally, would being in a support group amongst other ME/CFS individuals offer the same buffers to loneliness non-ME/CFS groups? Might these effects be observable via online support groups (e.g., Zoom, Skype, etc.) and would they produce similar outcomes as in-person groups?

The length of illness and how it relates to loneliness are also of interest. For example, since ME/CFS symptoms are present for a minimum of six months and up to, in some cases, more than two years [21], a longitudinal study that tracks loneliness and how one perceives their diagnosis of ME/CFS (including pain, irritability, feelings of control) would be of great interest and could afford insight on whether or not lesser amounts of loneliness translate to a shorter length of pronounced distress faced by the illness.

A specific look at personality traits, such as extraversion and introversion, and questionnaires related to perceptions of joy derived from outings, past job experiences/hobby enjoyment (e.g., Quality of Life Enjoyment and Satisfaction Questionnaire [125], The Minnesota Satisfaction Questionnaire [126], etc.) should also be noted and looked at for further perspectives on illness perception. For example, Davey et al. [122] found that individuals who ranked higher on openness to experience were more accepting of their own inner experiences dealing with chronic illness, resulting in significantly lower pain perception.

Additionally, while difficult, it would be fruitful to sample a comprehensive sample that includes many different cultures and/or backgrounds. Since different cultures are affected and tend to view loneliness differently [127,128,129], it would be interesting to observe if and how these cultural differences fare with respect to coping with ME/CFS. Answers to these questions would undoubtedly result in better treatment protocols and healthcare expectations.

5. Conclusions
Considering that loneliness, its accompanying stigma, and illness conceptualization have a devastating impact in exacerbating chronic illness, we deem the current lack of investigation between loneliness and ME/CFS a major omission in the ME/CFS literature. In closing, we wish to end this article on a quote from Williams-Wilson [10], a researcher who suffers from ME/CFS herself and who investigated the qualitative experiences of adolescents with ME/CFS; drawing from one of the emergent themes of her study, and her personal experiences, she remarked, “finding other people in the same situation as you, with the same struggles and daily trials makes one feel less alone and different from the rest of the world; it provides a sense of affinity and justification and helps alleviate feelings of isolation and loneliness.” (p. 317).

It is thus a healthcare imperative that we take the necessary steps to study and demystify the illness’ alienating and isolating aspects so that those suffering with ME/CFS can feel empowered and compassion from the medical community when dealing with the disorder. Future research may explore the assistance that others, family members, friends, and the community at large can offer those who are struggling with ME/CFS loneliness-related stress and emotional pain.

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The case of CFS-ME

The case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis, by Leonard A Jason, Joseph Cotler, Shaun Bhatia, Madison Sunnquist, Chapter 17: Chronic Illness, pp 228-241 in Handbook of Research Methods in Health Psychology Nov 2020

Prof Leonard Jason’s team have contributed a chapter to a book on research methods in health psychology. They discuss the history & terminology controversy in ME & CFS

 

Chapter overview:

Chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) affect approximately 1 million Americans (Jason, Richman, Rademaker, Jordan, Plioplys, Taylor, et al., 199%); while some individuals believe that CFS and ME refer to the same illness, others characterize ME as a more severe, neurological disorder that is discrete from CFS (Twisk, 2013).

This controversy will be reviewed in detail. The widespread, debilitating symptoms of the illnesses include but are not limited to feeling sick after activity (known as post-exertional malaise), memory and concentration problems, and unrefreshing sleep (IOM, 2015).

Some researchers suggest that ME and CFS were first conceptualized under the diagnostic label ‘neurasthenia,’ defined as a neurological disease characterized by muscle weakness or fatigue. Notably, neurasthenia was one of the most frequently diagnosed illnesses in the late nineteenth century. However, use of this term had substantially decreased by the mid-twentieth century (Wessely, 1994)

Throughout the twentieth century, several outbreaks of idiopathic, fatigue-related illneses occurred, including ‘atypical poliomyelitis’ at Los Angeles County Hospital in 1934 (Meals, Hauser, & Bowe 1938), ‘encephalomyelits’ at the Royal Free Hospital in London in 1955 (Crowley, Nelon, & Stovi 1957), and ‘chronic mononucleosis-like syndrome’ in Lake Tahoe, Nevada, in 1984 (Barnes, 1986). After the Lake Tahoe outbreak, national attention began to focus on this illness (Wessely, 1994), and in 1988, it was named chronic fatigue syndrome by the Centers for Disease Control and Prevention (CDC; Holmes, Kaplan, Gantz, Komaroff, Schonberger, Straus, ct al, 1988). For over two decades, the ease definition that the CDC developed (Fukuda, Straus, Hickic, Sharpe, Dobbins, & Komaroff, 1994) has been prominently used in research and clinical practice; however, the Institute of Medicine (10M) recently developed an updated clinical case definition (IOM, 2015).

The annual direct and indirect costs of ME and CFS in the United States are estimated to be between $19 and $24 billion (Jason, Benton, Johnson, & Valentine, 2008). Individuals with ME and CES have an increased risk of cardiovascular-related mortality and a lower mean age of death by suicide and cancer in comparison to the general US population (McManimen, Devendorf, Brow Moore, Moore, & son, 2016). In addition, arthritis, high blood pressure, fibromyalgia, and multiple chemical sensitivities are commonly comorbid (Jason, Porter, Hunnell, Brown, Rademaker, & Richman, 2011).

Although no virus has been identified as the cause of ME and CFS, the immune system may be overactive (Fischer, William, Strauss, Unger, Jason, Marshall, etc, 2014), and there is and fibromyalgia using regression tree analysis and artificial neural network analysis, composed of computer-based models used to evaluate complex correlations. The patients were randomly divided into two groups. One group served to derive classification criteria sets by sophisticated procedures, including artificial neural networks in parallel. These criteria were then validated with the second group.

Symptoms that best differentiated patients with ME and CES from the other patients were acute onset of fatigue and sore throat.

Additionally, a recent study highlighted that the duration of post-exertional malaise symptoms can distinguish ME and CFS from other chronic illnesses (Cotler, Holtzman, Dudun, & Jason, 2018). The lesson that is apparent from this section is that it is essential for a consensus on a case definition among investigators for establishing a solid empiric foundation in any illness or disease.

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PayPal Giving Fund – an easy way to donate to WAMES

PayPal Giving Fund

 

WAMES has signed up to PayPal Giving Fund.

Anyone can now donate to WAMES when shopping on eBay or paying by PayPal.  Buyers and sellers can support us by adding a donation during checkout or donating a percentage of their sales.

PayPal also gives you the option of adding Gift Aid.  PayPal doesn’t charge for this service!

Want to give, but don’t want to shop? 

You can donate to us through Charity Choice.

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The changes in perceptions & treatments of ME – please help with a student survey

The changes in perceptions & treatments of ME.

 

A WAMES volunteer is currently studying for the Welsh Baccalaureate.

For her Individual Project she wants to find out how people’s perceptions of ME have changed over the last 20 years. She is keen to raise awareness in her college about ME.

Can you help by completing her questionnaire? Anyone can take part.

Email jan@wames.org.uk or send a request via the contact form and we will email the form to you. Please return by October 27th 2020. No contact details will be passed on to the student.

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EUROMENE epidemiological research – Dr Derek Pheby invites you to take part

Dr Derek Pheby invites you to take part in EUROMENE research

19th October 2020

Dear fellow members of the ME community,

I wonder if I could, please, request your assistance. I am working with European colleagues in the EUROMENE collaboration, and we have been very successful in stimulating research into ME/CFS throughout Europe.

Researchers in Latvia and Italy have conducted fairly small-scale epidemiological studies, with the intention of producing an international comparison, and would like to be able to compare their results with data from the UK, where most of the epidemiological research into ME/CFS in Europe has been undertaken.

Epidemiology is the study of how often diseases occur in different groups of people and why.                             BMJ

I am very keen to encourage this development, as it is only through epidemiological research that we will be able to quantify the scale of the illness in Europe, which in turn will get added weight to our lobbying for increased resources both for research and for clinical and other services.

I have therefore developed a short survey instrument to enable collection of data which will facilitate the comparison my Latvian and Italian colleagues wish to make. This is necessarily limited in scope, because I am only asking the questions which have been asked in the surveys already carried out in Latvia and Italy. It’s therefore quite short, and it should be possible to complete it in under ten minutes.

If you:

  • are a UK resident,
  • have a medically confirmed diagnosis of ME/CFS, and
  • would like to participate

Take part in the survey https://www.smartsurvey.co.uk/s/GX4HMU/

Please feel free to send this link to anyone else who might be interested and may want to participate.

I would be grateful for responses by the end of October, please.

The survey is of course completely anonymous, but, if you would like to receive a report of this study in due course and leave your email address at the end of the survey, or alternatively email me at derekpheby@btinternet.com I will make sure that this is sent to you.

Yours faithfully,

Professor Derek Pheby, 

Chairman, Socioeconomics Working Group, EUROMENE

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A relational analysis of an invisible illness: a meta-ethnography of people with CFS/ME & their support needs

A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs, by Karen Pilkington, Damien Ridge,  Chinonso N Igwesi-Chidobe, Carolyn Chew-Graham, Paul Little, Opeyemi Babatunde, Nadia Corp, Clare McDermott, Anna Cheshire in Social Science & Medicine, 16 September 2020 [doi.org/10.1016/j.socscimed.2020.113369]

 

Highlights

  • Meta-ethnography on ‘support’ synthesises 47 studies of people living with CFS/ME
  • Integrates patient and public involvement throughout entire review process
  • ‘Goods’ framework shows concerns of people with CFS/ME produced by relations
  • Shifts the focus from individuals to co-creation of ‘goods’ like ‘recognition’
  • Points to novel ways to support people with condition where views highly polarised

Abstract

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unexplained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability. There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME.

We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed. Our synthesis suggested that to understand people with CFS/ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework. Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, and structures like disability support.

This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.

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Take all post-viral illness seriously!

Take all post-viral illness seriously!

WAMES is working to alert the NHS and politicians in Wales to the need to take ALL post-viral illnesses seriously.

We’d like to hear about any signs the NHS in Wales is waking up to ME and post-viral illness.          Contact   jan@wames.org.uk    or use the contact form

[cartoon used with permission]

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Cytokine profiling of extracellular vesicles isolated from plasma in ME/CFS

Cytokine profiling of extracellular vesicles isolated from plasma in myalgic encephalomyelitis/ chronic fatigue syndrome: a pilot study, by Ludovic Giloteaux, Adam O’Neal, Jesús Castro-Marrero, Susan M Levine, Maureen R Hanson in J Transl Med. 2020 Oct 12;18(1):387 [doi: 10.1186/s12967-020-02560-0]

 

Research abstract:

Background:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease of unknown etiology lasting for a minimum of 6 months but usually for many years, with features including fatigue, cognitive impairment, myalgias, post-exertional malaise, and immune system dysfunction. Dysregulation of cytokine signaling could give rise to many of these symptoms. Cytokines are present in both plasma and extracellular vesicles, but little investigation of EVs in ME/CFS has been reported. Therefore, we aimed to characterize the content of extracellular vesicles (EVs) isolated from plasma (including circulating cytokine/chemokine profiling) from individuals with ME/CFS and healthy controls.

Methods:

We included 35 ME/CFS patients and 35 controls matched for age, sex and BMI. EVs were enriched from plasma by using a polymer-based precipitation method and characterized by Nanoparticle Tracking Analysis (NTA), Transmission Electron Microscopy (TEM) and immunoblotting. A 45-plex immunoassay was used to determine cytokine levels in both plasma and isolated EVs from a subset of 19 patients and controls. Linear regression, principal component analysis and inter-cytokine correlations were analyzed.

Results:

ME/CFS individuals had significantly higher levels of EVs that ranged from 30 to 130 nm in size as compared to controls, but the mean size for total extracellular vesicles did not differ between groups. The enrichment of typical EV markers CD63, CD81, TSG101 and HSP70 was confirmed by Western blot analysis and the morphology assessed by TEM showed a homogeneous population of vesicles in both groups. Comparison of cytokine concentrations in plasma and isolated EVs of cases and controls yielded no significant differences.

Cytokine-cytokine correlations in plasma revealed a significant higher number of interactions in ME/CFS cases along with 13 inverse correlations that were mainly driven by the Interferon gamma-induced protein 10 (IP-10), whereas in the plasma of controls, no inverse relationships were found across any of the cytokines. Network analysis in EVs from controls showed 2.5 times more significant inter-cytokine interactions than in the ME/CFS group, and both groups presented a unique negative association.

Conclusions:

Elevated levels of 30-130 nm EVs were found in plasma from ME/CFS patients and inter-cytokine correlations revealed unusual regulatory relationships among cytokines in the ME/CFS group that were different from the control group in both plasma and EVs. These disturbances in cytokine networks are further evidence of immune dysregulation in ME/CFS.

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