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

Posted on 10/19/2020 by wames

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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Take all post-viral illness seriously!

Posted on 10/15/2020 by wames

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

Posted on 10/15/2020 by wames

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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Reductions in cerebral blood flow can be provoked by sitting in severe ME/CFS patients

Posted on 10/12/2020 by wames

Reductions in cerebral blood flow can be provoked by sitting in severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, by C (Linda) MC van Campen, Peter C Rowe and Frans C Visser in Healthcare 2020, 8(4), 394 [doi.org/10.3390/healthcare8040394]

 

Research abstract:

Introduction:

In a large study with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients, we showed that 86% had symptoms of orthostatic intolerance in daily life and that 90% had an abnormal reduction in cerebral blood flow (CBF) during a standard tilt test.

A standard head-up tilt test might not be tolerated by the most severely affected bed-ridden ME/CFS patients. Sitting upright is a milder orthostatic stress. The present study examined whether a sitting test, measuring cerebral blood flow by extracranial Doppler, would be sufficient to provoke abnormal reductions in cerebral blood flow in severe ME/CFS patients.

Methods and results:

100 severe ME/CFS patients were studied, (88 females) and were compared with 15 healthy controls (HC) (13 females). CBF was measured first while seated for at least one hour, followed by a CBF measurement in the supine position. Fibromyalgia was present in 37 patients. Demographic data as well as supine heart rate and blood pressures were not different between ME/CFS patients and HC.

Heart rate and blood pressure did not change significantly between supine and sitting both in patients and HC. Supine CBF was not different between patients and HC. In contrast, absolute CBF during sitting was lower in patients compared to HC: 474 (96) mL/min in
patients and 627 (89) mL/min in HC; p < 0.0001. As a result, percent CBF reduction while seated was −24.5 (9.4)% in severe ME/CFS patients and −0.4 (1.2)% in HC (p < 0.0001).

In the ten patients who had no orthostatic intolerance complaints in daily life, the CBF reduction was −2.7 (2.1)%, which was not significantly different from HC (p =0.58). The remaining 90 patients with orthostatic intolerance complaints had a −26.9 (6.2)% CBF reduction.

No difference in CBF parameters was found in patients with and without fibromyalgia. Patients with a previous diagnosis of postural orthostatic tachycardia syndrome (POTS) had a significantly larger CBF reduction compared with those without POTS: 28.8 (7.2)% vs. 22.3 (9.7)% (p = 0.0008).

Conclusions:

A sitting test in severe ME/CFS patients was sufficient to provoke a clinically and statistically significant mean CBF decline of 24.5%. Patients with a previous diagnosis of POTS had a larger CBF reduction while seated, compared to patients without POTS. The magnitude of these CBF reductions is similar to the results in less severely affected ME/CFS patients during head-up tilt, suggesting that a sitting test is adequate for the diagnosis of orthostatic intolerance in severely affected patients.

 

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WAMES AGM news 2020

Posted on 10/08/2020 by wames

WAMES Annual General Meeting News, 2020

 

Our delayed AGM was held virtually on 26th September 2020.  It was a lively meeting and we are excited about the future.

People:

  • Chair & Campaigns coordinator: Jan Russell
  • Acting secretary: Tony Thompson
  • Treasurer: Simon Horsman
  • Youth & Care Officer, Media Contact & Helpline Coordinator: Sylvia Penny
  • Volunteering Coordinator: Sharon Williams

We were pleased to welcome new volunteers, but unfortunately the volunteer secretary had to withdraw at the last minute. We’re grateful that Tony has agreed to step in, but we are now looking for new people to help share the load.

Money:

Our new treasurer will be getting to grips with our finances over the next couple of months but he has already pointed out that we spent more in 2019 than we received. We will need to  find new ways to increase our income! All fundraisers welcome!

Exciting goals for our work during 2020/2021:

  1. Improve the efficiency of our administration of WAMES, expand our remote office working and recruit volunteers to job-share the administrative tasks.
  2. Improve the quality of our online information services and then work to make WAMES better known throughout Wales so patients and carers have the info and support they need.
  3. Raise awareness of ME and the post-viral link. Find better ways to explain post activity relapses (PEM) and how we can manage them.

WAMES’ aim is to:

give a national voice to people with ME, CFS and PVFS in Wales, their carers and families, in order to improve services, access to services, awareness and support.

Help us…. Make a difference for ME in Wales!

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Short fatigue questionnaire: screening for severe fatigue

Posted on 10/08/2020 by wames

Short fatigue questionnaire: screening for severe fatigue, by Adriaan Penson, Sylvia van Deuren, Margreet Worm-Smeitink, Ewald Bronkhorst, Frank HJ van den Hoogen, Baziel GM van Engelen, Marlies Peters, Gijs Bleijenberg, Jan H Vercoulen, Nicole Blijlevens, Eline van Dulmen-den Broeder, Jacqueline Loonen, Hans Knoop in Journal of Psychosomatic Research Vol 137, Oct 2020, 110229 [doi.org/10.1016/j.jpsychores.2020.110229]

 

Highlights:

  • To optimally screen for severe fatigue, a short version of the Checklist Individual Strength was proposed: the Short Fatigue Questionnaire (SFQ)
  • Psychometric properties of the SFQ are satisfying
  • A cut-off score of 18 is recommended to identify severe fatigue
  • Norm values are presented and can be used as reference values
  • The SFQ is an excellent instrument to screen for severe fatigue

 

Abstract:

Objective:

To determine psychometric properties, a cut-off score for severe fatigue and normative data for the 4-item Short Fatigue Questionnaire (SFQ) derived from the multi-dimensional fatigue questionnaire Checklist Individual Strength (CIS).

The Shortened Fatigue Questionnaire (SFQ) [10] consists of four items (‘I feel tired’, ‘I tire easily‘, ‘I feel fit’ and ‘I feel physically exhausted’; see appendix B). Each item is scored on a 7-point Likert Scale, ranging from 1 ‘yes, that is true’ to 7 ‘no, that is not true’. Scores of items 1, 2 and 4 are reversed and then all item scores are added up which results in a total score varying from 4 to 28. Higher scores reflect a higher level of fatigue.

Methods:

Data of previous studies investigating the prevalence of fatigue in ten chronic conditions (n = 2985) and the general population (n = 2288) was used to determine the internal consistency (Cronbach’s alpha) of the SFQ, its relation with other fatigue measures (EORTC QLQ-30 fatigue subscale and digital fatigue diary), a cut-off score for severe fatigue (ROC analysis) and to examine whether the four SFQ items truly measure the same construct. Norms were calculated for ten patient groups and the Dutch general population.

Results:

Cronbach’s alpha of the SFQ were excellent in almost all groups.

Psychometric characteristics of the SFQ were shown to be adequate. Cronbach’s alpha was high for almost all study populations, except for the CFS population. A plausible explanation for the latter could be the fact that the CFS group scored extremely high on the SFQ decreasing the variance of the item- and total scores. The reason why this group scored this high on the SFQ is explained by the fact that one of the criteria to meet the case definition of CFS is scoring above the cut-off score of 35 on the CIS fatigue severity subscale. As the SFQ is derived from the CIS, this will lead to a restricted range of scores. This suggests that the internal consistency itself was not necessarily lower in the CFS population. The relation between the SFQ and other fatigue measures showed the construct validity to be satisfying.

Pearson’s correlations between the SFQ and the EORTC-QLQ-C30 fatigue subscale and a fatigue diary were respectively 0.76 and 0.68. ROC analysis showed an area under the curve of 0.982 (95% CI: 0.979–0.985) and cut-off score of 18 was suggested which showed a good sensitivity (0.984) and specificity (0.826) as well as excellent values for the positive and negative prediction values within all groups using the CIS as golden standard. Factor analysis showed a one factor solution (Eigenvalue: 3.095) with factor loadings of all items on the factor being greater than 0.87.

Conclusion:

The SFQ is an easy to use, reliable and valid instrument to screen for severe fatigue in clinical routine and research.

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A SWATH-MS analysis of ME/CFS peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction

Posted on 10/07/2020 by wames

A SWATH-MS analysis of ME/CFS peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction, by Eiren Sweetman, Torsten Kleffmann, Christina Edgar, Michel de Lange, Rosamund Vallings & Warren Tate in Journal of Translational Medicine vol 18, no: 365 (2020) [doi.org/10.1186/s12967-020-02533-3]

 

Research abstract:

Background:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious and complex physical illness that affects all body systems with a multiplicity of symptoms, but key hallmarks of the disease are pervasive fatigue and ‘post-exertional malaise’, exacerbation after physical and/or mental activity of the intrinsic fatigue and other symptoms that can be highly debilitating and last from days to months.

Although the disease can vary widely between individuals, common symptoms also include pain, cognitive deficits, sleep dysfunction, as well as immune, neurological and autonomic symptoms. Typically, it is a very isolating illness socially, carrying a stigma because of the lack of understanding of the cause and pathophysiology.

Methods:
To gain insight into the pathophysiology of ME/CFS, we examined the proteomes of peripheral blood mononuclear cells (PBMCs) by SWATH-MS analysis in a small well-characterised group of patients and matched controls. A principal component analysis (PCA) was used to stratify groups based on protein abundance patterns, which clearly segregated the majority of the ME/CFS patients (9/11) from the controls. This majority subgroup of ME/CFS patients was then further compared to the control group.

Results:
A total of 60 proteins in the ME/CFS patients were differentially expressed (P < 0.01, Log10 (Fold Change) > 0.2 and < −0.2). Comparison of the PCA selected subgroup of ME/CFS patients (9/11) with controls increased the number of proteins differentially expressed to 99. Of particular relevance to the core symptoms of fatigue and post-exertional malaise experienced in ME/CFS, a proportion of the identified proteins in the ME/CFS groups were involved in mitochondrial function, oxidative phosphorylation, electron transport chain complexes, and redox regulation. A significant number were also involved in previously implicated disturbances in ME/CFS, such as the immune inflammatory response, DNA methylation, apoptosis and proteasome activation.

Conclusions:
The results from this study support a model of deficient ATP production in ME/CFS, compensated for by upregulation of immediate pathways upstream of Complex V that would suggest an elevation of oxidative stress. This study and others have found evidence of a distinct pathology in ME/CFS that holds promise for developing diagnostic biomarkers.

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Living with CFS during lockdown and a global pandemic

Posted on 10/02/2020 by wames

Living with Chronic Fatigue Syndrome during lockdown and a global pandemic, by G Brewer, K Stratton in Fatigue: Biomedicine, Health & Behavior, 1 Oct 2020 [doi.org/10.1080/21641846.2020.1827503]

 

Research abstract:

Objective
Chronic Fatigue Syndrome, a condition characterised by extreme fatigue that is not explained by other medical conditions, places individuals at greater risk of COVID-19. The condition is also associated with a lack of social support and social isolation. These individuals may, therefore, have a unique experience of lockdown and the pandemic. The present study investigates the experiences of those with Chronic Fatigue Syndrome during the COVID-19 pandemic.

Design: 
In the present study, we identified fifty online forum (Reddit) posts, discussing the personal lived experience of Chronic Fatigue Syndrome during lockdown and the global pandemic. These posts were subject to inductive thematic analysis.

Results:
Four themes were extracted from the data. These were (i) Symptom Change, (ii) Social Interactions, (iii) Comparing Experiences, and (iv) Positive Consequences. Themes highlighted both positive and negative experiences of the COVID-19 pandemic. For example, whilst some people reported more severe symptoms, lockdown also provided more accessible opportunities to interact (i.e. online videocalls).

Conclusion:
Chronic Fatigue Syndrome influenced physical, psychological, and social experiences, with both positive and negative outcomes of the lockdown and pandemic apparent. Findings have the potential to support those with Chronic Fatigue Syndrome and those who experience post-COVID-19 fatigue.

 

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CFS in children population: current knowledge summary

Posted on 10/01/2020 by wames

Chronic Fatigue Syndrome in children population – current knowledge summary, by Monika Prylinska, Natalia Skierkowska, Weronika Topka, Małgorzata Kwiatkowska in Journal of Education, Health and Sport Vol 10, #9, 635-643, Sep 2020

 

Review abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelits (CFS/ME) is a chronic disease with complex pathophysiology and unknown etiology. It occurs both in children and adolescents, as well as in adults, with equal frequency. The clinical course is characterized by progressive fatigue, a significant reduction in the body’s efficiency, lack of relief despite rest, and numerous accompanying symptoms. Pathognomonic symptom for PE is the increase in fatigue after physical or mental exertion and the persistence of these symptoms for several hours or days.

The basis for effective treatment is primarily non-pharmacological treatment, including determining the optimal balance between physical activity and rest, which is aimed at preventing post-workout fatigue. Pain, insomnia, IO, and other symptoms can be treated with medication.

So far, little research has been done on the diagnosis and treatment of this disease in children. This publication aims to summarize the knowledge currently available on the Chronic Fatigue Syndrome in children and adolescents.

Summary

Chronic Fatigue Syndrome is a serious, chronic disease that significantly impairs the
daily functioning of the patient and reduces his quality of life. Despite the increasing number of scientific publications in the field of Chronic Fatigue Syndrome, its etiology and causal treatment have still not been established. Most of the conducted research concerns the adult patient population, which leads to a glaring gap in knowledge about the clinical course, diagnosis and treatment of pediatric patients. This monograph summarizes the currently available knowledge about CFS in the developmental age population and highlights the areas that require further research and further explanation.

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How common are depression & anxiety in adolescents with CFS?

Posted on 09/30/2020 by wames

How common are depression and anxiety in adolescents with chronic fatigue syndrome (CFS) and how should we screen for these mental health co-morbidities? A clinical cohort study, by Maria E Loades, Rebecca Read, Lucie Smith, Nina T Higson-Sweeney, Amanda Laffan, Paul Stallard, David Kessler, Esther Crawley in European Child & Adolescent Psychiatry, 22 September 2020 [doi.org/10.1007/s00787-020-01646-w]

 

Research abstract:

Adolescents with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) appear to be more likely to experience anxiety and/or depression using Patient Reported Outcome Measures (PROMs). However, we do not know how accurate these are at detecting problems in this patient group given the primary symptom of fatigue.

We aimed to accurately determine the prevalence of anxiety/depression using gold-standard diagnostic interviews and evaluate the accuracy of PROMs measuring mood
disorders in this patient group. We conducted a cross-sectional epidemiological study in a specialist tertiary paediatric CFS/ME service, England. The participants were 164 12-18 year olds with clinician confirmed CFS/ME and their parents. The measures were a
semi-structured diagnostic interview, the Kiddie Schedule for Affective Disorders and Schizophrenia, K-SADS, and questionnaires (Revised Children’s Anxiety and Depression Scale, RCADS; Spence Children’s Anxiety Scale, SCAS; Hospital Anxiety and Depression Scale, HADS).

Parents completed the RCADS-P. 35% met the criteria for at least one common mental health problem. 20% had major depressive disorder, and 27% an anxiety disorder, with social anxiety and generalised anxiety being the most common. There was high co-morbidity, with 61% of those who were depressed also having at least one anxiety disorder. The questionnaires were moderately accurate (AUC>0.7) at detecting clinically significant
anxiety/depression, although only the RCADS-anxiety reached the predefined 0.8 sensitivity, 0.7 specificity target.

Mental health problems are particularly common amongst adolescents with CFS/ME. Most screening tools were not sufficiently accurate in detecting clinically significant anxiety and depression, so these should be used with care in combination with thorough psychological/psychiatric assessment.

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