Category: Medical Care

Comparative Survey of People with ME/CFS in Italy, Latvia, and the UK: A Report on Behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE)

Abstract:

Background and Objectives: A comparative survey of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients was carried out in three countries, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and also on public institutions. The survey addressed demographic features, the economic impact of the disease on household incomes, patterns of medical and social care, specific therapies, social relationships, and the impact of the illness on quality of life.

Materials and Methods: Parallel surveys were undertaken in Italy, Latvia, and the UK. There were 88 completed responses from Italy, 75 from Latvia, and 448 from the UK. To facilitate comparisons, 95% confidence intervals were calculated in respect of responses to questions from all three countries. To explore to what extent general practitioners (GPs) manage ME/CFS disease, a separate questionnaire for GPs, with questions about the criteria for granting a diagnosis, laboratory examinations, the involvement of specialists, and methods of treatment, was undertaken in Latvia, and there were 91 completed responses from GPs.

Results: The results are presented in respect of sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. Demographic details were similar in all three countries, and the impact of illness on net household incomes and quality of life. There were significant differences between the three countries in illness progression and management, which may reflect differences in patterns of health care and in societal attitudes. Graded exercise therapy, practiced in the UK, was found to be universally ineffective.

Conclusions: There were similarities between respondents in all three countries in terms of demographic features, the impact of the illness on household incomes and on quality of life, and on difficulties experienced by respondents in discussing their illness with doctors, but also differences in patterns of medical care, availability of social care, and societal attitudes to ME/CFS.

Source: Brenna E, Araja D, Pheby DFH. Comparative Survey of People with ME/CFS in Italy, Latvia, and the UK: A Report on Behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE). Medicina (Kaunas). 2021 Mar 23;57(3):300. doi: 10.3390/medicina57030300. PMID: 33806902. https://pubmed.ncbi.nlm.nih.gov/33806902/

Medical School Education on Myalgic Encephalomyelitis

Abstract:

Background and objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS is a common complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed. For two decades the medical education establishment in the UK has been challenged to remedy these failings, but little has changed. This study was designed to ascertain the current UK medical school education on ME/CFS and to identify challenges and opportunities to inform the future of medical education.

Materials and methods: A questionnaire, developed under the guidance of the Medical Schools Council, was sent to all 34 UK Medical Schools to collect data for the academic year 2018-2019.

Results: Responses were provided by 22 out of a total of 34 medical schools (65%). 59% of respondents taught ME/CFS, led by specialists drawn from 6 medical disciplines. Teaching delivery was usually by lecture; however, discussion case studies and e-learning were used. 7 schools included questions on ME/CFS in their examinations and 3 schools reported likely clinical exposure to ME/CFS patients. 64% of respondents were interested in receiving further teaching aids in ME/CFS. None of the schools shared details of their teaching syllabus so it was not possible to ascertain what students were being taught.

Conclusions: UK medical school teaching in ME/CFS is shown to be inadequate. Several medical disciplines, with known differences about the disease, need to set these aside to give greater clarity in teaching undergraduates so they can more easily recognise and diagnose ME/CFS. Improvements are proposed in ME/CFS medical education consistent with the international paradigm shift in biomedical understanding of this disease. Many medical schools (64% of respondents) acknowledge this need by expressing a strong appetite for the development of further teaching aids and materials. The GMC and MSC are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose and treat ME/CFS. The GMC should also consider creating a registered speciality encompassing ME/CFS, post viral fatigue and Long Covid.

Source: Muirhead, N.; Muirhead, J.; Lavery, G.; Marsh, B. Medical School Education on Myalgic Encephalomyelitis. Preprints 2021, 2021030420 https://www.preprints.org/manuscript/202103.0420/v1

Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)

Abstract:

Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and suggestions as to how this could be improved.

Materials and Methods: A questionnaire was sent to all national representatives and members of the EUROMENE Core Group and Management Committee. Survey responses were collated and then summarized based on the numbers and percentages of respondents selecting each response option, while weighted average responses were calculated for questions with numerical value response options. Free text responses were analysed using thematic analysis.

Results: Overall there were 23 responses to the survey from participants across 19 different European countries, with a 95% country-level response rate. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result. The vast majority of GPs were perceived to lack confidence in either diagnosing or managing the condition. Disbelief, and misleading illness attributions, were perceived to be widespread, and the unavailability of specialist centres to which GPs could refer patients and seek advice and support was frequently commented upon. There was widespread support for more training on ME/CFS at both undergraduate and postgraduate levels.

Conclusion: The results of this survey are consistent with the existing scientific literature. ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs is a major cause of missed and delayed diagnoses, which renders problematic attempts to determine the incidence and prevalence of the disease, and to measure its economic impact. It also contributes to the burden of disease through mismanagement in its early stages.

Source: Cullinan J, Pheby DFH, Araja D, Berkis U, Brenna E, de Korwin JD, Gitto L, Hughes DA, Hunter RM, Trepel D, Wang-Steverding X. Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE). Medicina (Kaunas). 2021 Feb 26;57(3):208. doi: 10.3390/medicina57030208. PMID: 33652747. https://www.mdpi.com/1010-660X/57/3/208 (Full text)

A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)

Abstract:

Background and Objectives: The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS;

Materials and Methods: A MEDLINE search was carried out. The papers identified were reviewed following the synthesis without meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature;

Results: Thirty-three papers were identified in the MEDLINE search. The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. It should be noted, though, that these papers were mostly from the United Kingdom. Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received. These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades;

Conclusions: Disbelief and lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.

Source: Pheby DFH, Araja D, Berkis U, Brenna E, Cullinan J, de Korwin JD, Gitto L, Hughes DA, Hunter RM, Trepel D, Wang-Steverding X. A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE). Medicina (Kaunas). 2020 Dec 24;57(1):E7. doi: 10.3390/medicina57010007. PMID: 33374291. https://www.mdpi.com/1010-660X/57/1/7 (Full text)

CDC Awards Medscape Education Three Contracts to Develop Medical Education Programming Addressing Major Public Health Needs

Press Release: NEW YORK, Nov. 10, 2020 /PRNewswire/ — Medscape, the leading source of continuing medical education, clinical news, health information, and point-of-care tools for health care professionals (HCPs), has been awarded three contracts by the Centers for Disease Control and Prevention (CDC) Division of Cancer Prevention and Control and the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID). These programs, focused on cancer care, invasive mold infections and chronic fatigue syndrome, will be developed by Medscape Education and delivered to its multi-specialty membership with certification for both physicians and nurses. A division of Medscape, Medscape Education is the leading destination for continuous professional development for HCPs. While the medical world is appropriately focused on COVID-19, it is essential that other clinical topics, which impact the lives of millions of patients, are not overlooked. The programming will be focused on the following:

Cancer care: In collaboration with the National Association of Chronic Disease Directors, Medscape Education will develop curriculum focused on the need for physicians to engage patients on their post-treatment lifestyle such as alcohol and tobacco use, the impact of stress and anxiety, and the importance of physical activity and nutrition, while building awareness of CDC’s “Talk to Someone” tool designed to help cancer patients manage their disease.

Chronic Fatigue Syndrome: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) is a severe, long-term illness. People with MECFS are often unable to engage in daily activity due to severe fatigue. COVID-19 brings a new concern to these symptoms, as Dr. Anthony Fauci noted that a consequence of COVID-19 is post-viral syndrome which includes fatigue and difficulty concentrating. Medscape Education will bring these concepts to life through an interactive roundtable discussion designed for physicians, nurses and pharmacists.

Invasive mold infections (IMIs): After natural disasters, such as hurricanes or floods, residents are likely exposed to mold as they return to their homes and begin the remediation process. For immunocompromised people, IMIs can cause severe illness and even death. Medscape Education will develop educational programming for physicians and nurses designed to educate their immunocompromised patients about preventative measures to avoid IMIs.

“Medscape Education is honored to be selected by the Centers for Disease Control and Prevention to develop these educational programs, across a variety of public health issues, which if not rapidly and appropriately treated, can result in advanced illness and even death,” said Douglas Kaufman, Group Vice President, Medscape.

As COVID-19 has increased clinician reliance on digital solutions, Medscape Education continues to focus on providing the most current, practice-relevant education.

“The need to educate providers via Medscape’s trusted and credible digital platform could not be more essential, especially during this time of heightened anxiety and an overwhelmed healthcare system,” Kaufman noted.

The activities will be hosted at www.medscape.org and will be available for continuing education credit.

About Medscape

Medscape is the leading source of clinical news, health information, and point-of-care tools for health care professionals. Medscape offers specialists, primary care physicians, and other health professionals the most robust and integrated medical information and educational tools. Medscape Education (medscape.org) is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free C.M.E. and C.E. courses and other educational programs for physicians, nurses, and other health care professionals. Medscape is a subsidiary of WebMD Health Corp.

About Medscape Education

Medscape Education (medscape.org), a division of Medscape, is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free C.M.E. and C.E. courses and other educational programs for physicians, nurses, and other health care professionals.

Medscape is the leading source of clinical news, health information, and point-of-care tools for health care professionals. Medscape offers specialists, primary care physicians, and other health professionals the most robust and integrated medical information and educational tools. Medscape is a subsidiary of WebMD Health Corp.

About WebMD

WebMD Health Corp., an Internet Brands Company, is the leading provider of health information services, serving patients, physicians, health care professionals, employers, and health plans through public and private online portals, mobile platforms, and health-focused publications. The WebMD Health Network includes WebMD Health, Medscape, Jobson Healthcare Information, prIME Oncology, MediQuality, Frontline, Vitals Consumer Services, Aptus Health, MedicineNet, eMedicineHealth, RxList, OnHealth, Medscape Education, and other owned WebMD sites. WebMD®, Medscape®, CME Circle®, Medpulse®, eMedicine®, MedicineNet®, theheart.org®, and RxList® are among the trademarks of WebMD Health Corp. or its subsidiaries.

SOURCE WebMD Health Corp.

Dental considerations for a patient with Myalgic Encephalopathy/Chronic Fatigue Syndrome – a case study

Abstract:
Myalgic Encephalopathy, also known as Chronic Fatigue Syndrome (ME/CFS), is a chronic condition with: a range of fluctuating symptoms, no cure, and can cause a person to be bedbound. This case report identifies recommendations for dental care based on the experiences of a female 17 year-old living with severe ME/CFS.
Source: Halsall, Serena. (2019). Dental considerations for a patient with Myalgic Encephalopathy/Chronic Fatigue Syndrome – a case study. 20. 128-131. 10.443/JDOH.  https://www.researchgate.net/publication/337499185_Dental_considerations_for_a_patient_with_Myalgic_EncephalopathyChronic_Fatigue_Syndrome_-_a_case_study (Full text)

Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS

Abstract:

Many people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) commonly receive no care from healthcare professionals, while some have become distanced from all statutory medical services. Paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare. Reasons for this include tensions around the complexity of making an accurate diagnosis in the absence of a biomarker, the bitter debate about the effectiveness of the few available treatments, and the very real stigma associated with the diagnosis.

Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed. We argue that a holistic model, such as ‘‘Compassion in Practice’’, can help with planning appointments and caring for people severely affected by ME/CFS. We show how this can be used to frame meaningful interactions between the healthcare practitioners (HCPs) and the homebound patient.

Source: Kingdon, C.; Giotas, D.; Nacul, L.; Lacerda, E. Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS. Healthcare 2020, 8, 197. https://www.mdpi.com/2227-9032/8/3/197/htm (Full text)

Predicting GP Visits: A Multinomial Logistic Regression Investigating GP Visits Amongst a Cohort of UK Patients Living With Myalgic Encephalomyelitis

Abstract:

Background: Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. Some medical professionals regard it as a contentious illness. Others report a lack of confidence with diagnosis and management of the condition. The genesis of this paper was a complaint, made by an ME patient, about their treatment by a general practitioner. In response to the complaint, Healthwatch Trafford ran a patient experience-gathering project.

Method: Data was collected from 476 participants (411 women and 65 men), living with ME from across the UK. Multinomial logistic regression investigated the predictive utility of length of time with ME; geographic location (i.e. Manchester vs. rest of UK); trust in GP; whether the patient had received a formal diagnosis; time taken to diagnosis; and gender. The outcome variable was number of GP visits per year.

Results: All variables, with the exception of whether the patient had received a formal diagnosis, were significant predictors.

Conclusions: Relationships between ME patients and their GPs are discussed and argued to be key to the effective delivery of care to this patient cohort. Identifying potential barriers to doctor patient interactions in the context of ME is crucial.

Source: Walsh RS, Denovan A, Drinkwater K, Reddington S, Dagnall N. Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with Myalgic encephalomyelitis. BMC Fam Pract. 2020;21(1):105. Published 2020 Jun 10. doi:10.1186/s12875-020-01160-7 https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-020-01160-7 (Full text)

Book Review: Toxic by Dr. Neil Nathan Is a Must-Read!

This superb book by Dr. Neil Nathan is a must-read for anyone suffering from mold toxicity, Lyme disease, multiple chemical sensitivities, chronic environmental illness, fibromyalgia, or myalgic encephalomyelitis/chronic fatigue syndrome. These difficult-to-treat diseases, which are often ignored or dismissed by mainstream medical practitioners, present a challenge to any physician, but it is a challenge that Dr. Nathan meets with in-depth knowledge, compassion, and common sense. In addition to the above diseases, Dr. Nathan also discusses the important role of mast cell activation, porphyria, and carbon monoxide, the three “elephants in the room.” His discussion of mast cell activation syndromes, which he finds in half of his patients suffering from unusual sensitivities, is particularly enlightening. He not only presents symptoms and signs to look for, but how MCAS is diagnosed and treated.

Dr. Nathan  brings his decades of experience to bear by explaining how toxins can interact to produce a multiplicity of disease states simultaneously. His clear and concise explanation for how environmental diseases become chronic is the best I have ever read. In some individuals, toxins are not eliminated through normal channels. Instead, the toxins, once they are attached to bile, are recycled, sent back to the liver when the bile is reabsorbed in the large intestine. This would account for why people with exposure to mold, for example, do not recover after a single course of treatment.

People with any of the illnesses covered in this book will be delighted to find detailed descriptions of how Dr. Nathan and other experts in this field treat these diseases. Not only does Dr. Nathan offer a treatment blueprint for each disease, he provides many additional resources, as well as direct commentary by expert physicians. His bottom line is that it is not enough to kill infections, or rely on strict avoidance. Toxins must be safely removed. The underlying theme, namely chronic inflammation, is addressed in this context. Dr. Nathan’s chapters on” rebooting” as a model for treatment and healing are a goldmine for people seeking an effective long-term treatment strategy.

One of the most valuable takeaways from this book is Dr. Nathan’s sensible approach. Dr. Nathan takes “First, do not harm” seriously. Patients with environmental illnesses can be exquisitely sensitive, which means treatments must be started at miniscule doses, and proceed slowly. If a patient feels worse, stop. Why insist that a patient “push through” if it only leads to increased symptoms? This is so sensible, and so obvious, I am left wondering why more physicians don’t adopt a more gradual approach to treating environmental diseases.

Dr. Nathan’s conversational writing style makes this book a pleasure to read, despite the complexity of the topic. He increases the accessibility to lay readers by including helpful diagrams and graphics that convey information visually, as well as side notes that neatly summarize points. This is a book to keep by your bedside. You will want to refer to it often.

Available on Amazon and Barnes&Noble.

Healthcare Utilization in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Analysis of US Ambulatory Healthcare Data, 2000-2009

Abstract:

Background: ME/CFS is a complex and disabling illness with substantial economic burden and functional impairment comparable to heart disease and multiple sclerosis. Many patients with ME/CFS do not receive appropriate healthcare, partially due to lack of diagnostic tests, and knowledge/attitudes/beliefs about ME/CFS. This study was to assess the utility of US ambulatory healthcare data in profiling demographics, co-morbidities, and healthcare in ME/CFS.

Methods: Data came from the National Ambulatory Medical Care Survey (NAMCS) and the National Hospital Ambulatory Medical Care Survey (NHAMCS) in the U.S. Weighted analysis was performed. We examined 9.06 billion adult visits from 2000 to 2009 NAMCS/NHAMCS data. ME/CFS-related visits were identified by ICD-9-CM code, 780.71, up to tertiary diagnosis.

Results: We estimated 2.9 million (95% CI: 1.8-3.9 million) ME/CFS-related visits during 2000-2009, with no statistical evidence (p-trend = 0.31) for a decline or increase in ME/CFS-related visits. Internists, general and family practitioners combined provided 52.12% of these visits. Patients with ME/CFS-related visits were mostly in their 40 and 50 s (47.76%), female (66.07%), white (86.95%), metropolitan/urban residents (92.05%), and insured (87.26%). About 71% of ME/CFS patients had co-morbidities, including depression (35.79%), hypertension (31.14%), diabetes (20.30%), and arthritis (14.11%). As one quality indicator, physicians spent more time on ME/CFS-related visits than non-ME/CFS visits (23.62 vs. 19.38 min, p = 0.065). As additional quality indicators, the top three preventive counseling services provided to patients with ME/CFS-related visits were diet/nutrition (8.33%), exercise (8.21%), and smoking cessation (7.24%). Compared to non-ME/CFS visits, fewer ME/CFS-related visits included counseling for stress management (0.75 vs. 3.14%, p = 0.010), weight reduction (0.88 vs. 4.02%, p = 0.002), injury prevention (0.04 vs. 1.64%, p < 0.001), and family planning/contraception (0.17 vs. 1.45%, p = 0.037).

Conclusions: Visits coded with ME/CFS did not increase from 2000 to 2009. Almost three quarters of ME/CFS-related visits were made by ME/CFS patients with other co-morbid conditions, further adding to complexity in ME/CFS healthcare. While physicians spent more time with ME/CFS patients, a lower proportion of ME/CFS patients received preventive counseling for weight reduction, stress management, and injury prevention than other patients despite the complexity of ME/CFS. NAMCS/NHAMCS data are useful in evaluating co-morbidities, healthcare utilization, and quality indicators for healthcare in ME/CFS.

Source: Bae J, Lin JS. Healthcare Utilization in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Analysis of US Ambulatory Healthcare Data, 2000-2009. Front Pediatr. 2019 May 14;7:185. doi: 10.3389/fped.2019.00185. eCollection 2019. https://www.frontiersin.org/articles/10.3389/fped.2019.00185/full (Full article)