Category: Public Health

Chronic Disease Stakeholders Join SOLVE M.E. in Push for Federally Funded Research into Long COVID

Press Release: LOS ANGELES, Dec. 4, 2020 /PRNewswire/ — Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.

With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora.Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.

Letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.

“Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis,” said Oved Amitay, CEO of Solve M.E. “Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population.”

The letter cites warnings from leading public health officials — including Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases — about the estimated 3.2 million Americans that could be temporarily or permanently disabled by Long COVID symptoms. Indeed, studies show that 66 percent of patients with post-viral acute respiratory distress syndrome report experiencing severe fatigue after 12 months, consistent with Dr. Fauci’s analysis that Long COVID symptoms are “highly suggestive” of ME/CFS. These alarming statistics underscore the urgent need for funding, research, diagnostics, and treatment into Long COVID.

Chronic disease experts unanimously agree that in order to adequately address Long COVID complications, Congress must act immediately and appropriate the following funds:

$110 million for the establishment of Long COVID Collaborative Research Centers and Centers of Excellence;
$60 million toward expanding post-viral disease research;
$3.5 million for the development and issuance of medical guidance about Long COVID to medical providers and front-line health professionals; and
$300,000 toward convening experts and stakeholders to establish data harmonization.

“We strongly encourage these funds be allocated to the NIH and CDC by way of the congressional appropriations process or a future COVID-19 relief package so this critically important research can begin immediately,” said Amitay.

About Solve ME/CFS Initiative

Solve M.E. is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. works to accelerate the discovery of safe and effective treatments and strives for an aggressive expansion of funding for research that will lead to a cure.

To learn more, visit our website at www.solveCFS.org

Media Inquiries Only Contact
Emily Taylor
Director of Advocacy and Communications
714-296-1661
ETaylor@solvecfs.org

Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19

Excerpt:

It has been demonstrated that clinical outcomes of COVID-19 are significantly worse in persons with advanced age and those with “traditional” medical comorbidities (cardiovascular disease, pulmonary disease, diabetes, malignancy, and immunosuppression). But what about the ever-increasing group of people in our society, many of whom do not have “traditional” medical comorbidities, who suffer chronically from pain, fatigue, and functional decline? We are referring to patients with fibromyalgia (FM) and chronic fatigue syndrome (CFS): 2 conditions that, although medically distinct, share a common pathophysiological etiology: central sensitization (CS)., , , 

Source: Mohabbat AB, Mohabbat NML, Wight EC. Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19. Mayo Clin Proc Innov Qual Outcomes. 2020 Nov 13. doi: 10.1016/j.mayocpiqo.2020.08.002. Epub ahead of print. PMID: 33204998; PMCID: PMC7661943. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7661943/ (Full text)

EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe

Abstract:

Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation is Science and Technology (COST) (https://www.cost.eu/cost-actions/what-are-cost-actions/ ) – COST action 15111 – from 2016 to 2020. The main goal of the Cost Action was to assess the existing fragmented knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report on the recommendations for clinical diagnosis, heath services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.

Source: Nacul, L.; Authier, J.; Scheibenbogen, C.; Lorusso, L.; Helland, I.; Alegre Martin, J.; Sirbu, C.A.; Mengshoel, A.M.; Polo, O.; Behrends, U.; Nielsen, H.; Grabowski, P.; Sekulic, S.; Sepulveda., N.; Esteves Lopez, F.; Zalewsk, P.; Pheby, D.; Castro-Marrero, J.; Sakkas, G.; Bergquist, J.; Capelli, E.; Brandslund, I.; Cullinan, J.; Krumina, A.; Murovska, M.; Vermuelen, R.; Lacerda, E. EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe. Preprints 2020, 2020090688.  https://www.preprints.org/manuscript/202009.0688/v1 (Full text downloadable as PDF file)

Associations of physical and psychiatric conditions with chronic fatigue syndrome in Germany: an exploratory case-control study

Abstract:

Background: Only a few studies have analyzed the effects of physical and psychiatric conditions on the risk of chronic fatigue syndrome (CFS). Therefore, the goal of this exploratory case-control study was to investigate the associations of physical and psychiatric conditions with CFS in almost 19 800 adults from Germany.

Methods: This study included patients diagnosed for the first time with CFS in one of 1238 general practices in Germany between 2010 and 2017 (index date). Controls without CFS were matched (1:1) to cases with CFS by sex, age, index year, and practice. Physical and psychiatric conditions diagnosed in the year prior to the index date were included if they were present in at least 3% of patients with CFS. Associations between physical and psychiatric conditions (33 potential independent variables) and CFS (dependent variable) were analyzed in an adjusted conditional logistic regression model, and physical and psychiatric disorders were included in the model using forward stepwise selection.

Results: This study included 9896 cases with CFS and 9896 controls without CFS [65.1% women; mean (standard deviation) age 49.5 (18.3) years]. Seven conditions were associated with CFS in the adjusted regression model. The disorders displaying the strongest relationship with CFS were cancer [odds ratio (OR) = 2.57, 95% confidence interval (CI) = 2.24-2.95], sleep disorders (OR = 1.88, 95% CI = 1.66-2.12) and depression (OR = 1.77, 95% CI = 1.61-1.95).

Conclusions: Cancer, sleep disorders, and depression were strongly and positively associated with CFS. Additional studies are needed to gain a better understanding of the mechanisms underlying these relationships.

Source: Jacob L, Haro JM, Kostev K. Associations of physical and psychiatric conditions with chronic fatigue syndrome in Germany: an exploratory case-control study [published online ahead of print, 2020 Jul 20]. Psychol Med. 2020;1-7. doi:10.1017/S0033291720002470 https://pubmed.ncbi.nlm.nih.gov/32686638/

Survey: Doctor’s Knowledge and Understanding of ME, 2018

It has long been the experience of patients with Myalgic Encephalomyelitis (ME) that their doctors have little knowledge and understanding of the condition, and are largely unable to help. Worse, many report that their doctors do not appear to believe their illness is real, resulting in tragic lack of support.

Examination of sample medical curriculums in the United Kingdom in 2018 confirmed that as far as could be determined, Myalgic Encephalomyelitis was not in the syllabus at either undergraduate or postgraduate levels. It is therefore quite conceivable that patients’ widely reported impression is indeed true.

Read the full report HERE.

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

Abstract:

BACKGROUND: Improving Access to Psychological Therapies is a UK Government funded initiative to widen access to psychological treatment for a range of common mental health complaints, such as depression and anxiety. More recently, the service has begun to treat patients with medically unexplained symptoms. This paper reports on a review of treatment protocols and early treatment data for medically unexplained symptoms, specifically the illness myalgic encephalomyelitis/chronic fatigue syndrome.

MAIN TEXT: A series of seven core problems and failings are identified, including an unproven treatment rationale, a weak and contested evidence-base, biases in treatment promotion, exaggeration of recovery claims, under-reporting of drop-out rates, and a significant risk of misdiagnosis and inappropriate treatment.

CONCLUSIONS: There is a pressing need for independent oversight of this service, specifically evaluation of service performance and methods used to collect and report treatment outcomes. This service offers uniform psycho-behavioural therapy that may not meet the needs of many patients with medically unexplained health complaints. Psychotherapy should not become a default when patients’ physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part. Patients who reject psychotherapy or do not meet selection criteria should be offered appropriate medical and psychological support.

Source: Geraghty K, Scott MJ. Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified. BMC Psychol. 2020 Feb 5;8(1):13. doi: 10.1186/s40359-020-0380-2. https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-020-0380-2 (Full article)

Associations of occupational stress, workplace violence and organizational support on chronic fatigue symptoms among nurses

Abstract:

AIMS: Chronic fatigue syndrome is an agnogenic disease worldwide. Nurses are at a high risk of chronic fatigue syndrome. However, no research has been done to examine the associations of workplace violence, organizational support and occupational stress with chronic fatigue syndrome among Chinese nurses. This study aimed to examine effects of these factors on chronic fatigue syndrome in this occupational group.

DESIGN: Cross-sectional. All participants voluntarily completed a questionnaire survey.

METHODS: The study was conducted in Liaoning province from December 2017 to January 2018. Self-administered questionnaires were distributed to 1200 nurses, including Effort-Reward-Imbalance, Workplace Violence Scale, Survey of Perceived Organizational Support, together with age, gender, marital status, education levels, physical activities, job rank, monthly income and weekly working hours. Complete responses were obtained from 1080 (90%) participants. Chronic fatigue syndrome was diagnosed by doctors according to the Centers for Disease Control and Prevention criteria. Multivariable logistic regression was performed to examine these independent risk factors.

RESULTS: The prevalence of chronic fatigue syndrome was 6.76%. The results of logistic regression analysis showed that nurses who experienced serious higher levels of overcommitment, workplace violence and less organizational support were more likely to be classified as chronic fatigue syndrome.

CONCLUSION: There was a high prevelence of chronic fatigue syndrome. Lower workplace violence, more organizational support and lower overcommitment could be effective resources for reducing chronic fatigue syndrome.

IMPACT: Workplace violence, organizational support and occupational stress were related to chronic fatigue syndrome, which helped to explain why Chinese nurses suffered higher prevelance of chronic fatigue syndrome. Overcommitment explained chronic fatigue syndrome better than Effort/Reward Ratio, so intrinsic stress played a more critical role than extrinsic stress in chronic fatigue syndrome. Chinese nurses suffered serious sleep disorders and impairment of concentration and memory. These symptoms might also atributed to serious occupational stress, unsafe and unsupportive working environment. Creating a safe and supportive working emvironment, releiving intrinsic occupational stress should be considered as an institutional strategy to early prevent chronic fatigue syndrome.

Source: Li M, Shu Q, Huang H, Bo W, Wang L, Wu H. Associations of occupational stress, workplace violence and organizational support on chronic fatigue symptoms among nurses. J Adv Nurs. 2020 Feb 3. doi: 10.1111/jan.14312. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/32011012

Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study.

Abstract:

BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious and debilitating disorder associated with significant disruptions in daily life including. This study aimed to examine the impact of sociodemographic and patient symptom characteristics on health-related quality of life (HRQoL) of Australians with ME/CFS.

METHODS: Self-reported data collected from 480 individuals diagnosed with ME/CFS were obtained between August 2014 and August 2018. This cross-sectional survey analysed sociodemographic, symptom characteristics and HRQoL according to the 36-Item Health Survey (SF-36). Multivariate linear regression models were used to determine ME/CFS symptoms associated with eight domains of HRQoL.

RESULTS: Reported HRQoL was significantly impaired in ME/CFS patients across all domains compared with the general population. Scores were the lowest for physical role (4.11 ± 15.07) and energy/fatigue (13.54 ± 13.94). Associations with females, higher body mass index (BMI), employment status, cognitive difficulties, sensory disturbances and cardiovascular symptoms were observed in the physical functioning domain. Impaired pain domain scores were associated with high BMI, annual visits to their general practitioner, flu-like symptoms and fluctuations in body temperature. Reduced well-being scores were associated with smoking status, psychiatric comorbidity, cognitive difficulties, sleep disturbances and gastrointestinal difficulties.

CONCLUSION: This study provides evidence that ME/CFS has a profound and negative impact on HRQoL in an Australian cohort.

Source: Eaton-Fitch N, Johnston SC, Zalewski P, Staines D, Marshall-Gradisnik S. Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study. Qual Life Res. 2020 Jan 22. doi: 10.1007/s11136-019-02411-6. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31970624

Intimate Partner Violence and the Risk of Developing Fibromyalgia and Chronic Fatigue Syndrome

Abstract:

Intimate partner violence (IPV) is a global public health issue with a variety of ill health consequences associated with exposure. Due to the stimulation of chronic stress and inflammatory pathways, childhood abuse has been associated with the subsequent development of functional syndromes such as fibromyalgia and chronic fatigue syndrome (CFS). Although IPV in women appears to elicit similar biochemical responses, this association has not been tested thoroughly in IPV survivors. These functional syndromes are complex in etiology and any indication of their risk factors would benefit health care professionals managing this population. Therefore, we aimed to investigate the association between exposure to IPV with functional syndromes: fibromyalgia and CFS.

We conducted a retrospective open cohort study using “The Heath Improvement Network” database between January 1, 1995 and December 1, 2017. A total of 18,547 women who were exposed to IPV were each matched by age to four controls who were not exposed (n = 74,188). The main outcome measures were the risk of developing fibromyalgia and CFS. These were presented as adjusted incidence rate ratios (aIRR) with 95% confidence intervals (CIs).

We found that 97 women in the exposed group developed fibromyalgia (incidence rate [IR] = 1.63 per 1,000 person-years) compared to 239 women in the unexposed group (IR = 0.83 per 1,000 person-years). Following adjustment, this translated to an IRR of 1.73 (95% CI = [1.36, 2.22]). Similarly, 19 women developed CFS in the exposed group (IR = 0.32 per 1,000 person-years), compared to 53 in the unexposed group (0.18 per 1,000 person-years), which translates to an aIRR of 1.92 (95% CI = [1.11, 3.33]).

Therefore, we have identified an association between a history of IPV in women and the development of these functional syndromes, which may provide more information to inform the biopsychosocial pathway precipitating the development of fibromyalgia and CFS.

Source: Chandan JS, Thomas T, Raza K, Bradbury-Jones C, Taylor J, Bandyopadhyay S1, Nirantharakumar K. Intimate Partner Violence and the Risk of Developing Fibromyalgia and Chronic Fatigue Syndrome. J Interpers Violence. 2019 Dec 6:886260519888515. doi: 10.1177/0886260519888515. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31805821

Editorial: Advances in ME/CFS Research and Clinical Care

Editorial:

Advances in ME/CFS Research and Clinical Care spotlights Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a maligned, stigmatized, under-researched disease, which lacks a definitive, objective clinical test for its diagnosis, and definitive palliative and curative treatments. A few brave physicians attempt to alleviate the suffering of the afflicted. They rely upon the patients’ symptoms to guide them. Physicians can provide symptomatic relief and improve upon patients’ abnormal physiological and metabolic parameters by intervening to cause the latter to approach normal limits.

Documented to be more severely disabling than HIV-AIDS, ME/CFS receives disturbingly little funding in the United States and around the world. ME/CFS patients constitute an identifiable, underserved population that is in need of the recognition which would raise them from their current, underserved or non-served patient status into the mainstream of healthcare worldwide. ME/CFS is a common disease worldwide, affecting approximately 1 percent of the world’s population.

You can read the rest of this article HERE.

Source: Friedman KJ, Bateman L, Bested A, Nahle Z. Editorial: Advances in ME/CFS Research and Clinical Care. Front Pediatr. 2019 Sep 18;7:370. doi: 10.3389/fped.2019.00370. eCollection 2019. https://www.frontiersin.org/articles/10.3389/fped.2019.00370/full (Full article)