Sickness & behavior in ME/CFS (Chronic Fatigue Syndrome)

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic debilitating condition characterized by physical and mental fatigue with a heightened sensitivity to exertion. To date, the causes are unknown. However, recently the condition has been implicated as a chronic sickness behavior state. That is, the adaptive changes in brain and behavior commonly following acute infection (experiences of malaise, fatigue, brain fog and so forth) seem to have become chronic and thus maladaptive, since no infectious agent is present. The condition is often debilitating, but no effective treatments are available, which implies that interventions are normally aimed at reducing symptoms and/or restoring or improving functioning. Furthermore, classifications are multiple and not empirically based. As such, there is a need for: (1) empirical investigations of how symptoms present and relate to each other and other measures of clinical importance; (2) evaluations of behavior medicine treatment approaches aimed at improving functioning and quality of life, and; (3) studies investigating sickness behavior processes in ME/CFS on both subjective and objective levels. Aims: The overarching aims of the present thesis were to: (a) investigate factors of importance in ME/CFS, including; (b) symptom patterns and their relationships to health and functioning (Study I); (c) inflammatory markers implicated in sickness behavior and fatigue and their associations with common symptoms (Study III); (d) the level of subjective sickness behavior in ME/CFS, compared to chronic pain, primary care patients and the general population (Study IV), and; (e) evaluate the acceptability, safety and preliminary efficacy of an Acceptance and Commitment Therapy(ACT)-based behavior medicine treatment protocol aimed at increasing functioning and quality of life in ME/CFS (Study II). Methods: All ME/CFS patients in the four studies were included after referral and diagnostic assessment (CDC and CCC or ICC criteria) at a tertiary specialist clinic. In Study I (n=106), a total of 14 common ME/CFS symptoms were quantified and latent symptom subgroups were explored. The relationship between latent symptom subgroups and measures of health and functioning were investigated. In Study II (n=40), the effects of the ACT treatment on measures of disability, symptoms and health-related functioning were investigated. In Study III (n=53), associations between inflammatory markers and common symptoms in ME/CFS were investigated. In Study IV, levels of subjective sickness behavior were investigated in, and compared between: patients with ME/CFS (n=40); patients with chronic pain (n=193); patients in primary care (n=168), and; individuals from the general population (n=163). The associations between sickness behavior and self-rated health, mental and physical health-related functioning were also explored. Results: The results in Study I showed four distinct subgroups in which differentiated symptoms gathered representing inflammatory, pain, neurocognitive and autonomic symptoms respectively. The symptom subgroups overall showed significant correlations with important clinical measures, although rarely exceeding .50, indicating the importance of other factors. ACT-based behavior medicine treatment can be considered acceptable, safe and preliminary effective for patients with ME/CFS (Study II). In Study III, several inflammatory markers (β-NGF; CCL11; CXCL10; IL-7; TGF-β-1 and; TNF- ) significant associations with common symptoms (post-exertional fatigue; impaired cognitive processing; musculoskeletal pain, and; recurrent flu-like symptoms). The level of sickness behavior was similar between ME/CFS and chronic pain patients, and significantly higher than in patients from primary care and individuals from the general population (p’s <.001). Conclusions: Symptoms in ME/CFS seem to present in distinct patterns, underlining the importance of the further study of symptom but also illness subtypes. However, factors other than criteria symptoms, such as experiential avoidance and cognitive fusion, are likely more accessible targets in behavior medicine treatment. The results from the ACT-based feasibility study indicate the utility of conceptualizing disability in ME/CFS from a modern learning theory perspective, and the ACT-based behavior medicine treatment format should be further investigated in randomized controlled studies. Finally, sickness behavior processes may guide future research in the differentiation of ME/CFS illness subtypes, as indicated by the level of subjective sickness behavior reported in ME/CFS which is equal to the level found when healthy human subjects are injected with bacterial endotoxin to cause transient sickness behavior in an experimental setting

The rotterdam study: 2014 objectives and design update

The Rotterdam Study is a prospective cohort study ongoing since 1990 in the city of Rotterdam in The Netherlands. The study targets cardiovascular, endocrine, hepatic, neurological, ophthalmic, psychiatric, dermatological, oncological, and respiratory diseases. As of 2008, 14,926 subjects aged 45 years or over comprise the Rotterdam Study cohort. The findings of the Rotterdam Study have been presented in over a 1,000 research articles and reports (see www.erasmus-epidemiology.nl/rotterdamstudy). This article gives the rationale of the study and its design. It also presents a summary of the major findings and an update of the objectives and methods

Glucocorticoids

As one class of the most important steroid hormones, glucocorticoids have long been recognised and their therapeutic benefits have been widely used in clinical treatment, especially in anti-inflammation cases. Glucocorticoids regulate various processes in the body including the mobilization of energy stores, immune functions, gene expression, and maintenance of the homeostasis as well as the stress response, this is not surprising that the concept of "glucocorticoids" is mentioned in almost all medical text books that focus on specific organs or systems such as the cardiovascular system, the immune system, and the neuroendocrine system. The book of Glucocorticoids - New Recognition of Our Familiar Friend aims to introduce the latest findings relating to glucocorticoids, either freshly from the laboratory or from clinical case studies, and to open up a new angle of looking at the issue of balancing the therapeutic benefits and side effects brought up by glucocorticoids

The Impact of Neurofeedback on Women Diagnosed with PTSD: A Multiple Case Study

The purpose of this study was to examine how women diagnosed with PTSD experienced neurofeedback (NFB) using quantitative and qualitative data. The quantitative data included pre- and post-test scores on the quantitative electroencephalogram (QEEG), the Davidson Trauma Scale, and the Inventory of Altered Self-capacities. The qualitative data illuminated participants’ experiences with NFB and their observations about the changes that occurred during and after NFB. The participants in this study included three women who received at least 20 sessions of NFB to treat their PTSD. The results indicated that two participants achieved a significant reduction in their PTSD symptoms and improvements in their concentration, sustained attention, and ability to calm themselves down. The third participant observed limited reductions in her depression and anxiety symptoms and improvement in her concentration and sustained attention. Participants also shared that understanding NFB before beginning treatment would have helped them to acquire self-regulation skills. Results also implicated that negative effects could occur from overtraining and standardized NFB protocols. Recommendations were made for the use of individualized NFB protocols to address clients’ unique symptoms and EEG patterns. Future studies should utilize mixed-method or qualitative methods to investigate the impact of NFB combined with bottom-up approaches such as somatic experiencing therapy, trauma-sensitive yoga, and eye movement desensitization and reprocessing (EMDR). Recommendations were also made to investigate treating PTSD new NFB protocols based on the triple network model. تهدف الدراسة إلى الكشف عن تأثير العلاج بالتغذية الراجعة العصبية على النساء المشخصات باضطراب كرب ما بعد الصدمة باستخدام البيانات الكمية والنوعية. تضمنت البيانات الكمية الدرجات القبلية والبعدية للتخطيط الكمي الكهربائي للدماغ ومقياس ديفيدسون للصدمات وقائمة جرد القدرات الذاتية المتغيرة. وقد أظهرت البيانات النوعية تجربة المشاركات للعلاج بالتغذية الراجعة العصبية وملاحظاتهن حول التغيرات التي حدثت أثناء وبعد العلاج. كانت عينة الدراسة ثلاث سيدات تلقيّن على الأقل عشرين جلسة تغذية راجعة عصبية لعلاج اضطراب كرب ما بعد الصدمة. أشارت النتائج إلى انخفاض كبير في أعراض اضطراب كرب ما بعد الصدمة لدى مشاركتين ، بالإضافة إلى تحسن التركيز واستمراية الانتباه والقدرة على التهدئة عند الاستثارة. و كان انخفاض أعراض الاكتئاب والقلق لدى المشاركة الثالثة محدودًا في حين تحسّن مستوى التركيز واستمرار الانتباه لديها. أوضحت المشاركات أن فهم إجراءات العلاج بالتغذية الراجعة العصبية قبل بدء العلاج يساعد على اكتسابهن لمهارات الضبط الذاتي. كما أشارت النتائج إلى أن الآثار السلبية يمكن أن تحدث من الإفراط في التدريب أواستخدام بروتوكولات علاجية موحدة. تم تقديم توصيات لاستخدام بروتوكولات فردية وفقا لأعراض كل فرد وأنماط تخطيط الدماغ لديه. وقد أوصت الدراسة بإجراء دراسات مستقبلية تجمع بين المنهج الكمي والنوعي لاكتشاف تأثير الجمع بين العلاج بالتغذية الراجعة العصبية ومناهج (من أسفل إلى أعلى) مثل علاج الخبرة الجسية ، والعلااج بإزالة التحسس وإعادة المعالجة باستخدام حركة العين. كما أوصت الدراسة بإجراء دراسات مستقبلية لاختبار بروتوكولات جديد في العلاج بالتغذية الراجعة العصبية لعلاج اضطراب مابعد الصدمة استنادا على نموذج شبكة الدماغ الثلاثية

Guidelines for conducting birth defects surveillance

"In January of 1999, the National Birth Defects Prevention Network (NBDPN) established a Surveillance Guidelines and Standards Committee (SGSC) in order to develop and promote the use of standards and guidelines for birth defects surveillance programs in the United States. This set of guidelines is designed to serve as an important first step in the documentation of this process and as the vehicle for dissemination of the committee's findings. The Guidelines for Conducting Birth Defects Surveillance (henceforth referred to as The Surveillance Guidelines) were developed with three major long-term objectives in mind: To improve the quality of state birth defects surveillance data, including accuracy, comparability, completeness, and timeliness; To enhance the utility of state birth defects surveillance data for research on the distribution and etiology of birth defects; To encourage and promote the use of state birth defects surveillance data for the purposes of linking affected children with services and evaluation of those services. The technical guidelines that make up this document provide a way of improving the quality of birth defects surveillance data, which in turn enhances their use in support of the latter two objectives. Fundamental to quality is ensuring that procedures for all aspects of data definition, collection, management, and analysis are established and followed. Because state-based surveillance systems operate with different objectives and data needs, it is clear that, with respect to procedures and standards, 'one size does not fit all.' It is also clear, however, that common guidelines can provide a basis for the development of system-specific operating procedures and supporting manuals." - p. iIntroduction -- -- Chapter 1. The Whys and Hows of Birth Defects Surveillance - Using Data -- -- Chapter 2. Legislation -- Appendix 2.1. Sample State Legislation -- Appendix 2.2. Table of Birth Defects Legislation -- Appendix 2.3. Definitions Used to Determine Covered Entity Status Under the Privacy Rule -- Appendix 2.4. Office of Civil Rights (OCR) HIPAA Privacy Regulation Text -- -- Chapter 3.Case Definition -- Appendix 3.1. Birth Defects Included in the Case Definition of the National Birth Defects Prevention Network -- Appendix 3.2. NBDPN Abstractor's Instructions -- Appendix 3.3. Examples of Conditions Considered to Be Minor Anomalies -- Appendix 3.4. Conditions Related to Prematurity in Infants Born at Less Than 36 Weeks Gestation -- -- Chapter 4. Data Variables -- Appendix 4.1. Descriptions of Minimum (Core) Data Variables -- Appendix 4.2. Descriptions of Recommended Data Variables -- -- Chapter 5. Classification and Coding -- Appendix 5.1. Texas Disease Index -- Appendix 5.2. 6-Digit CDC Codes (updated 8/2007) -- -- Chapter 6. Case Ascertainment Methods -- Appendix 6.1. Data Source Described in Detail - Vital Records -- Appendix 6.2. Data Source Described in Detail - Hospital Data Sets -- Appendix 6.3. Data Source Described in Detail - Hospital and Patient Services Logs -- Appendix 6.4. Data Source Described in Detail - Genetic Services -- -- Chapter 7. Data Quality Management -- Appendix 7.1. Data Sources Descriptive Assessment Tool -- -- Chapter 8. Statistical Methods -- -- Chapter 9. Data Management and Security -- -- Chapter 10. Data Collaboration and Dissemination through the NBDPN -- -- Chapter 11. Data Presentation -- Appendix 11.1. Data Suppression -- Appendix 11.2. Use of Geographic Information Systems (GIS) to Map Data -- Appendix 11.3. Data Users Matrix -- Appendix 11.4. What Type of Chart or Graph Should I Use?edited by Lowell E. Sever."June 2004."Support for development, production, and distribution of these guidelines was provided by the Birth Defects State Research Partnerships Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.Title from title caption (viewed on Jan. 6, 2012).Mode of access: Internet from the CDC web site as an Acrobat .pdf file ((7.6 MB, 627 p.).System requirements: Adobe Acrobat Reader.Includes bibliographical references.Text in PDF format.National Birth Defects Prevention Network (NBDPN). Guidelines for Conducting Birth Defects Surveillance. Sever, LE, ed. Atlanta, GA: National Birth Defects Prevention Network, Inc., June 2004