DecodeME is recruiting more study participants

Posted on 08/27/2020 by wames

Dear DecodeME Friend,

We have been blown away by the response we have had since we announced funding for the study. Over 25,000 people have signed up to receive updates, with nearly 20,000 people in the UK indicating they are over 16 years of age and interested in participating.

We have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.

This is a fantastic start but we have a huge amount to do before we open recruitment. We’re aiming for 40,000 sign-ups by the time recruitment begins in March 2021 to give us the best chance of having at least 20,000 people taking part in the study.

Over the last few months, we have been working hard in preparation for the project officially starting next month. You can find out more

Funding announcement gets a big response

We will continue to provide regular updates over the next few months and appreciate all your amazing support in helping us get as many people signed up to receive updates as possible!

Bye for now,

DecodeME Team      www.decodeme.org.uk

The ME/CFS Biomedical Partnership
42 Temple Street,
Keynsham,
BS31 1EH

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Activity measurement in pediatric CFS

Posted on 08/26/2020 by wames

Activity measurement in pediatric chronic fatigue syndrome, by Bernardo Loiacono, Madison Sunnquist, Laura Nicholson, Leonard A Jason in Chronic Illness, August 17, 2020 [doi.org/10.1177/1742395320949613]

 

Research abstract:

Objectives:
Individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) experience debilitating symptoms, including post-exertional malaise, an intensification of symptoms after physical or cognitive exertion.

Previous studies found differences in the activity levels and patterns of activity among individuals with ME and CFS, compared to healthy controls; however, limited research exists on the activity levels of pediatric patients. The objective of this study was to examine differences in activity between healthy children and youth with ME and CFS.

Methods:
The present study examines the objective (i.e., ActiGraphy) and self-reported levels of activity among children (ages 5 to 17) enrolled in a community-based study of pediatric CFS.

Results:
Children with ME and CFS evidenced lower activity levels than healthy control children. Moreover, participants with ME and CFS evidenced increased night time activity and delayed initiation of daytime activity. Participants’ self-reported activity data significantly correlated with their ActiGraph data, suggesting that children with ME and CFS are able to accurately describe their activity level.

Discussion:
This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.

Read full paper

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How ME/CFS progresses: the natural history of ME/CFS

Posted on 08/25/2020 by wames

How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) progresses: the natural history of ME/CFS, by Luis Nacul,  Shennae O’Boyle,  Luigi Palla,  Flavio E Nacul,  Kathleen Mudie,  Caroline C Kingdon,  Jacqueline M Cliff,  Taane G Clark,  Hazel M Dockrell and  Eliana M Lacerda in Front. Neurol. 11 August 2020 [doi.org/10.3389/fneur.2020.00826]

 

Article abstract:

We propose a framework for understanding and interpreting the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) that considers wider determinants of health and long-term temporal variation in pathophysiological features and disease phenotype throughout the natural history of the disease.

Dr Luis Nacul

As in other chronic diseases, ME/CFS evolves through different stages, from asymptomatic predisposition, progressing to a prodromal stage, and then to symptomatic disease. Disease incidence depends on genetic makeup and environment factors, the exposure to singular or repeated insults, and the nature of the host response.

In people who develop ME/CFS, normal homeostatic processes in response to adverse insults may be replaced by aberrant responses leading to dysfunctional states. Thus, the predominantly neuro-immune manifestations, underlined by a hyper-metabolic state, that characterize early disease, may be followed by various processes leading to multi-systemic abnormalities and related symptoms.

This abnormal state and the effects of a range of mediators such as products of oxidative and nitrosamine stress, may lead to progressive cell and metabolic dysfunction culminating in a hypometabolic state with low energy production. These processes do not seem to happen uniformly; although a spiraling of progressive inter-related and self-sustaining abnormalities may ensue, reversion to states of milder abnormalities is possible if the host is able to restate responses to improve homeostatic equilibrium.

With time variation in disease presentation, no single ME/CFS case description, set of diagnostic criteria, or molecular feature is currently representative of all patients at different disease stages. While acknowledging its limitations due to the incomplete research evidence, we suggest the proposed framework may support future research design and health care interventions for people with ME/CFS.

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Hemodynamics during the 10-minute NASA Lean Test: evidence of circulatory decompensation in a subset of ME/CFS patients

Posted on 08/24/2020 by wames

Hemodynamics during the 10-minute NASA Lean Test: evidence of circulatory decompensation in a subset of ME/CFS patients by Jihyun Lee, Suzanne D Vernon, Patricia Jeys, Weam Ali, Andrea Campos, Derya Unutmaz, Brayden Yellman, Lucinda Bateman in J Transl Med. 2020 Aug 15;18(1):314 [doi: 10.1186/s12967-020-02481-y]

 

Research abstract:

Background:

Lightheadedness, fatigue, weakness, heart palpitations, cognitive dysfunction, muscle pain, and exercise intolerance are some of the symptoms of orthostatic intolerance (OI). There is substantial comorbidity of OI in ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome). The 10-minute NASA Lean Test (NLT) is a simple, point-of-care method that can aid ME/CFS diagnosis and guide management and treatment of OI. The objective of this study was to understand the hemodynamic changes that occur in ME/CFS patients during the 10-minute NLT.

Methods:

A total of 150 ME/CFS patients and 75 age, gender and race matched healthy controls (HCs) were enrolled. We recruited 75 ME/CFS patients who had been sick for less than 4 years (< 4 ME/CFS) and 75 ME/CFS patients sick for more than 10 years (> 10 ME/CFS). The 10-minute NLT involves measurement of blood pressure and heart rate while resting supine and every minute for 10 min while standing with shoulder-blades on the wall for a relaxed stance. Spontaneously reported symptoms are recorded during the test. ANOVA and regression analysis were used to test for differences and relationships in hemodynamics, symptoms and upright activity between groups.

Results:

At least 5 min of the 10-minute NLT were required to detect hemodynamic changes. The < 4 ME/CFS group had significantly higher heart rate and abnormally narrowed pulse pressure compared to > 10 ME/CFS and HCs. The < 4 ME/CFS group experienced significantly more OI symptoms compared to > 10 ME/CFS and HCs. The circulatory decompensation observed in the < 4 ME/CFS group was not related to age or medication use.

Conclusions:

Circulatory decompensation characterized by increased heart rate and abnormally narrow pulse pressure was identified in a subgroup of ME/CFS patients who have been sick for < 4 years. This suggests inadequate ventricular filling from low venous pressure. The 10-minute NLT can be used to diagnose and treat the circulatory decompensation in this newly recognized subgroup of ME/CFS patients.

The > 10 ME/CFS group had less pronounced hemodynamic changes during the NLT possibly from adaptation and compensation that occurs over time. The 10-minute NLT is a simple and clinically useful point-of-care method that can be used for early diagnosis of ME/CFS and help guide OI treatment.

 

Excerpt

While it isn’t entirely clear why the > 10 ME/CFS group appear to tolerate the orthostatic stress better than < 4 ME/CFS in terms of a dramatic drop in pulse pressure, that does not prove they aren’t experiencing a drop in cerebral perfusion. It is possible that after many years of ME/CFS illness there is gradual adaptation of the circulatory stress response to upright posture. That may also explain why the > 10 ME/CFS had the highest rise in SBP during the 10-minute NLT. There is also an age difference between the < 4 and > 10 ME/CFS groups of about 5–6 years which might also explain the higher SBP response in the > 10 ME/CFS subgroup. A very important recently published study demonstrated that cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia [22]. This is consistent with our findings and may explain why ME/CFS patients were not much more likely to meet standard criteria for POTS or OH than the HCs, even though they still became more symptomatic during the 10-minute NLT.

Health Rising blog post: NASA Lean test, an easy way to diagnose Orthostatic Intolerance in ME/CFS, Fibromyalgia and POTS, by Cort Johnson

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ME/CFS in Europe – EMEC factsheets

Posted on 08/24/2020 by wames

European ME Coalition fact sheets

 

The European ME Coalition (EMEC) presents three new fact sheets about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The documents briefly summarize key facts about the economic and societal impact of ME/CFS in Europe and the recent efforts made by ME/CFS advocates including the petition submitted by Evelien Van Den Brink. The fact sheets will help to inform politicians and key policymakers about the need for biomedical research on ME/CFS in Europe.

The three fact sheets focus on separate topics.

One longer document provides basic information in a plain text format and is supported by ample scientific references. It forms an ideal starting point for anyone who wants to learn more about ME/CFS in Europe.

A second document is shorter and focuses on key figures. With its simple formatting and pictograms, it will be most helpful to those who want a brief overview (or who are simply bad at memorizing numbers).

A third document focuses on recommendations to Member States made in the recently adopted European ME/CFS resolution.

Find out more

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Validation of the severity of ME/CFS by other measures than history

Posted on 08/21/2020 by wames

Validation of the severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by other measures than history: activity bracelet, Cardiopulmonary Exercise Testing and a validated activity, Questionnaire: SF-36, by by C (Linda) M C van Campen, Peter C Rowe and Frans C Visser in Healthcare 2020, 8(3), 273; [doi.org/10.3390/healthcare8030273]

 

Research abstract:

Introduction:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe and disabling chronic disease. Grading patient’s symptom and disease severity for comparison and therapeutic decision-making is necessary. Clinical grading that depends on patient self-report is subject to inter-individual variability. Having more objective measures to grade and confirm clinical grading would be desirable.

Therefore, the aim of this study was to validate the clinical severity grading that has been proposed by the authors of the ME International Consensus Criteria (ICC) using more standardized measures like questionnaires, and objective measures such as physical activity tracking and cardiopulmonary exercise testing.

Methods and results:

The clinical database of a subspecialty ME/CFS clinic was searched for patients who had completed the SF 36 questionnaire, worn a SensewearTM armband for five days, and undergone a cardiopulmonary exercise test. Only patients who completed all three investigations within 3 months from each other—to improve the likelihood of stable disease—were included in the analysis. Two-hundred-eighty-nine patients were analyzed: 121 were graded as mild, 98 as moderate and 70 as having severe disease.

The mean (SD) physical activity subscale of the SF-36 was 70 (11) for mild, 43 (8) for moderate and 15 (10) for severe ME/CFS patients. The mean (SD) number of steps per day was 8235 (1004) for mild, 5195 (1231) for moderate and 2031 (824) for severe disease. The mean (SD) percent predicted oxygen consumption at the ventilatory threshold was 47 (11)% for mild, 38 (7)% for moderate and 30 (7)% for severe disease. The percent peak oxygen consumption was 90 (14)% for mild, 64 (8)% for moderate and 48 (9)% for severe disease. All comparisons were p < 0.0001.

Conclusion:

This study confirms the validity of the ICC severity grading. Grading assigned by clinicians on the basis of patient self-report created groups that differed significantly on measures of activity using the SF-36 physical function subscale and objective measures of steps per day and exercise capacity. There was variability in function within severity grading groups, so grading based on self-report can be strengthened by the use of these supplementary measures.

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Join the WAMES team – treasurer & other volunteers needed!

Posted on 08/20/2020 by wames

Can you help WAMES continue in our mission?

 

Our Vision is for a Wales where adults and children with ME and CFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle

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

We will be appointing new officers (secretary and treasurer) at the delayed AGM at the end of September. We invite people who wish to work with us in big or small ways to join us at the same time.

The role of the treasurer is to:

  • maintain an overview of WAMES’ financial affairs and advise the committee on budgets
  • ensure that proper financial records and procedures are maintained.

The treasurer is an essential officer of the charity and will share the running of the organisation with other committee members. Deadline for applications: 13 Sep 2020.

Other ways you can help:

  • communications: help us update our digital presence & develop publications
  • fundraising: help us identify & tap into a variety of fundraising methods
  • administration: support the secretary
  • awareness raising: help us get the word out about the realities of living with ME
  • trustee: help us plan the future work of WAMES in a world hit by a pandemic
  • volunteers: help us find and support volunteers so they get the most out of their volunteering experience
  • ???   suggest ways you can get involved!

To find out more contact Jan   jan@wames.org.uk

Please note:

  • The treasurer’s post is for 3 years starting end of September 2020
  • Training can be arranged & expenses will be paid
  • Most tasks can be carried out from home
  • Computer access will be necessary for most tasks
  • Many tasks can be done as a ‘role share’ or as part of a team.

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Perceptions of person-centred care amongst individuals with chronic conditions who consult complementary medicine practitioners

Posted on 08/18/2020 by wames

Perceptions of person-centred care amongst individuals with chronic conditions who consult complementary medicine practitioners, by Hope Foley, Amie Steel, Jon Adams in Complementary Therapies in Medicine Vol 52, August 2020, 102518
[doi.org/10.1016/j.ctim.2020.102518]

 

Highlights

  • Chronic illness care in complementary medicine is characteristically person-centred.
  • Patients report stronger person-centredness in complementary vs conventional care.
  • Patients report stronger person-centredness in naturopathy than other professions.
  • Complementary medicine practitioners may address unmet needs in chronic illness.

Research abstract:

Objectives:
Chronic conditions require continuous, multi-factorial care – such as person-centred care – to address patients’ individual health needs and quality of life. Many patients with chronic conditions seek additional care outside mainstream medicine, often consulting complementary medicine (CM) practitioners. This study examines person-centred care experienced by patients with chronic conditions consulting CM practitioners.

Design:
Cross-sectional survey.

Setting:
CM clinics around Australia, conducted November 2018 to March 2019.

Participants:
Patients with chronic conditions (n = 153) consulting osteopaths (n = 39), naturopaths (n = 33), massage therapists (n = 29), chiropractors (n = 28) and acupuncturists (n = 24).

Main outcome measures:
Patient-Centred Care Scale, Perceived Provider Support Scale, Empowerment Scale, and Patient Assessment of Chronic Illness Care measure.

Results:
Patient perceptions of person-centred care were consistently high during consultation with CM practitioners (Patient-centred Care scale mean range 4.22–4.70; Perceived Provider Support scale mean range 4.39–4.69; Empowerment scale mean range 2.20–2.50; Patient Assessment of Chronic Illness Care mean summary 3.33). Ratings of person-centred care were higher for consultations with CM practitioners than for medical doctors. Patients of naturopaths reported the highest means for perceived person-centred care. Variation in participant ratings for different items between professions indicate nuance in consultation experiences across different CM professions.

Conclusions:
Person-centred care appears characteristic of CM consultation, which may reflect holistic philosophies. Variations in patient experiences suggest diverse practices across CM professions. CM practitioners may present a resource of person-centred care for addressing unmet needs of individuals with chronic conditions, and reducing the health burden associated with rising rates of chronic conditions.

Read full paper

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A systematic review of mitochondrial abnormalities in ME/CFS/SEID

Posted on 08/16/2020 by wames

A systematic review of mitochondrial abnormalities in myalgic encephalomyelitis/chronic fatigue syndrome/systemic exertion intolerance disease, by Sean Holden, Rebekah  Maksoud, Natalie Eaton-Fitch, Hélène Cabanas, Donald Staines & Sonya Marshall-Gradisnik in Journal of Translational Medicine vol 18, no: 290 (2020)[doi.org/10.1186/s12967-020-02452-3]

 

Review abstract: 

Background:
Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Systemic Exertion Intolerance Disease (SEID) present with a constellation of symptoms including debilitating fatigue that is unrelieved by rest. The pathomechanisms underlying this illness are not fully understood and the search for a biomarker continues, mitochondrial aberrations have been suggested as a possible candidate. The aim of this systematic review is to collate and appraise current literature on mitochondrial changes in ME/CFS/SEID patients compared to healthy controls.

Methods:
Embase, PubMed, Scopus and Medline (EBSCO host) were systematically searched for articles assessing mitochondrial changes in ME/CFS/SEID patients compared to healthy controls published between January 1995 and February 2020. The list of articles was further refined using specific inclusion and exclusion criteria. Quality and bias were measured using the Joanna Briggs Institute Critical Appraisal Checklist for Case Control Studies.

Results:
Nineteen studies were included in this review. The included studies investigated mitochondrial structural and functional differences in ME/CFS/SEID patients compared with healthy controls. Outcomes addressed by the papers include changes in mitochondrial structure, deoxyribonucleic acid/ribonucleic acid, respiratory function, metabolites, and coenzymes.

Conclusion:
Based on the included articles in the review it is difficult to establish the role of mitochondria in the pathomechanisms of ME/CFS/SEID due to inconsistencies across the studies. Future well-designed studies using the same ME/CFS/SEID diagnostic criteria and analysis methods are required to determine possible mitochondrial involvement in the pathomechanisms of ME/CFS/SEID.

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Clinically accessible tools for documenting the impact of Orthostatic Intolerance on symptoms & function in ME/CFS

Posted on 08/14/2020 by wames

Clinically accessible tools for documenting the impact of Orthostatic Intolerance on symptoms and function in ME/CFS, by Jihyun Lee, Pelle Wall, Chris Kimler, Lucinda Bateman, Suzanne D Vernon in Work vol. 66, no. 2, pp. 257-263, 2020 [doi: 10.3233/WOR-203169]

 

Research abstract:

Background:

Clinical observations have indicated that hours of upright activity (HUA) reported by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients correlated with orthostatic symptoms and impaired physical function. This study examined the relationship between HUA and orthostatic intolerance (OI).

Methods:

Twenty-five female ME/CFS subjects and 25 age and race matched female healthy controls (HCs) were enrolled. Subjects reported HUA (defined as hours per day spent with feet on the floor) and completed questionnaires to assess the impact of OI on daily activities and symptoms. ME/CFS patients were categorized into those with <5 HUA and ≥5 HUA and analyzed by employment status. Data analysis used one-way ANOVA.

Results:

ME/CFS patients had fewer HUA, worse symptoms and greater interference with daily activities due to OI than HCs. The <5 HUA ME/CFS subjects had more severe OI related symptoms than ≥5 HUA ME/CFS subjects even though OI interfered with daily activities similarly.

Only 33% of ME/CFS subjects were employed and all were ≥5 HUA ME/CFS subjects with an average HUA of 8.

Conclusions:

ME/CFS subjects experienced more frequent and severe OI symptoms, higher interference with daily activities, and reduced ability to work than HCs. Reported HUA and assessment of OI using standardized instruments may be useful clinical tools for physicians in the diagnosis, treatment and management of ME/CFS patients.

 

Excerpts:

Orthostatic intolerance (OI) is defined as the development of symptoms upon assuming and maintaining upright postures that are alleviated by recumbency . “Symptoms of orthostatic intolerance are those caused primarily by

  1. cerebral under-perfusion (such as lightheadedness, near-syncope or syncope, impaired concentration, headaches, and dimming or blurring of vision), or
  2. sympathetic nervous system activation (such as forceful beating of the heart, palpitations, tremulousness, and chest pain), and
  3. other common signs and symptoms of orthostatic intolerance such as fatigue, a feeling of weakness, intolerance to low-impact exercise, nausea, abdominal pain, facial pallor, nervousness, and shortness of breath.”

Symptoms of OI are exacerbated by prolonged periods of upright posture and various daily experiences such as exercise, warm environments or large meals. Circumstances in daily life that can easily exacerbate OI include standing in line, grocery shopping, hot weather, overheated rooms, hot showers or baths and even sitting to eat a meal.

Clinicians should document patients’ symptoms and function in order to determine the impact of illness on the performance of daily activities and occupational responsibilities.

…Our clinical experience with over 1,000 ME/CFS patients has indicated that their disease severity can be gauged by hours of upright activity which we define as time with feet on the floor over a 24-hour period. Severely ill ME/CFS patients reported 0 to 4 hours with their feet on the floor while moderately ill patients reported having their feet on the floor for 5 to 8 hours. This observation led us to explore which ME/CFS symptoms were associated with an upright activity.

In this study, subjects were asked to report hours of upright activity (HUA) by estimating the hours per day spent in the following 4 positions over the past week:

  1. hours upright (standing, walking, running),
  2. hours sitting with feet on the floor,
  3. hours reclining or sitting with feet elevated and,
  4. hours lying down (includes sleeping).

We also used a standardized orthostatic questionnaire to evaluate how being in upright positions affected daily activities and the severity of symptoms. We found that both assessment tools can be easily administered and are effective at documenting the impact of orthostatic intolerance on symptom severity and daily activities in ME/CFS patients.

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