Abstract:
Abstract:
Aims: Gulf War Illness (GWI) is a chronic, debilitating, multi-symptom condition affecting as many as one-third of the nearly 700,000 U.S. troops deployed to the Middle East during the 1990-1991 Gulf War (GW). The treatment of GWI relies on symptom management. A common challenge in studying the efficacy of interventions for symptom management is participant recruitment related to factors such as the burden of travelling to study sites and the widespread dispersion of Veterans with GWI. The goal of this study is to assess the efficacy of a novel low-risk therapeutic agent, Bacopa monnieri, for cognitive function in Veterans with GWI and to evaluate the utility of a remote patient-centric study design developed to promote recruitment and minimize participant burden.
Main methods: To promote effective participant recruitment, we developed a remote patient-centric study design. Participants will be recruited online through social media and through a web-based research volunteer list of GW Veterans. An online assessment platform will be used, and laboratory blood draws will be performed at clinical laboratory sites that are local to participants. Furthermore, the assigned intervention will be mailed to each participant.
Significance: These study design adaptations will open participation to Veterans nearly nationwide and reduce administrative costs while maintaining methodologic rigor and participant safety in a randomized, placebo-controlled phase II clinical trial.
Source: Cheema AK, Wiener LE, McNeil RB, Abreu MM, Craddock T, Fletcher MA, Helmer DA, Ashford JW, Sullivan K, Klimas NG. A randomized phase II remote study to assess Bacopa for Gulf War Illness associated cognitive dysfunction: Design and methods of a national study. Life Sci. 2021 Oct 1;282:119819. doi: 10.1016/j.lfs.2021.119819. Epub 2021 Jul 10. PMID: 34256038. https://pubmed.ncbi.nlm.nih.gov/34256038/
People with ME/CFS feel let down by the medical establishment because almost all biomedical research until recently has been funded by the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation involving abnormal beliefs and behaviours and deconditioning. This research resulted in the current NICE guideline recommendations, published in 2007, for cognitive behavioural therapy (CBT) and graded exercise therapy (GET).3
Having reviewed clinical trial and patient evidence for these interventions,4 NICE now states in the introduction to the draft of its updated guideline on ME/CFS5 that “because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS.” It also emphasises that CBT is not a treatment or cure for ME/CFS.
Read the full article HERE.
Source: Charities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS doi:10.1136/bmj.n1854 https://www.bmj.com/content/374/bmj.n1854.full
Today we remember the severely ill in our community – those who have suffered the ravages of ME/CFS and borne the brunt of the disease with “grace and grit.” Some, like Sophia Mirza, whose birthday falls on August 8th, have not survived. Others must simply bear it year after year. And still others manage to improve, despite the odds. We honor all of the severely ill on this day, and we treasure their lives.
For the severely ill, simply surviving can absorb every ounce of strength they have. It’s difficult enough coping with the disease, but having to weather it alone is devastating. Not only do severely ill patients who have nobody to turn to experience extreme isolation, but the financial hardship can be devastating.
AMMES’ financial crisis fund is meant to assist severely ill patients with bills they cannot pay. On this day, my mind turns to them. I think of a woman who did not own a pair of shoes, and was sitting in the dark, alone, after her power had been cut off when her electricity bill hadn’t been paid. I think of a man who had been evicted on December 31st in the heart of the midwest, and who had nowhere to go on that frigid night. I think of a mother with ME, trying to raise her young son, who also has ME, the two of them attempting to get medical care that their insurance would not cover, because health insurance rarely covers visits to specialists. I think of all of the people who have received help from the financial crisis fund. Their stories ring in my ears.
And I think of the good people who have donated to the fund, because without their contributions, we couldn’t help anyone. I think of people who have included AMMES in their wills, and who I only know through a lawyer’s letter containing news of their demise along with a bequest. I am deeply saddened that I never got to meet these compassionate souls. Their hearts are kind. I think of the steady monthly donations of $3, $5, or $10 from people who surely can’t spare the money, but who still want to reach out and help. Their hearts are beautiful. I think of those in our community who have had the good fortune to remain financially stable, and who share their wealth. Their hearts are generous.
On this day, I remember and honor all who have suffered, and all who have joined hands to help them financially, medically, emotionally, and spiritually. Looking out for one another is what makes us a community. May those bonds remain strong and enduring.
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You can read more about the AMMES financial crisis fund here. We are always looking for more people to assist. Send them to us!
(Image from left to right: Sophia Mirza, Jamison Hill, Karina Hansen, Whitney Dafoe.)
Abstract:
Introduction: Persistent polyclonal B-cell lymphocytosis (PPBL) is a rare and still poorly understood entity, with 90% of cases occurring in female smokers. Patients often appear tired and in pain, but the clinical symptoms remain imprecise. The main risk is the development of lymphoma in some cases. To better understand the characteristics of the fatigue associated with PPBL and study its relationship with systemic exertion intolerance disease (SEID), we analyzed the symptoms in a cohort of patients with PPBL included in the French national registry.
Material and methods: An anonymous questionnaire following the recommendations of the Institute of Medicine/National Academy of Medicine for screening of the new SEID criteria was created in French and mailed to 50 patients.
Results: Thirty-nine (78%) contacted patients responded. The studied population was mainly constituted of women (90%) with an average age of 50 (18-59) years. Smoking was a constant factor in all patients. A total of 28/39 (72%) respondents met the SEID symptoms criteria. Severe chronic fatigue for more than 6 months was noted in 36/39 cases (92%). Unrefreshing sleep, post-exertional malaise, cognitive impairment, and orthostatic intolerance were described in 30/39 (77%), 32/39 (82%), 28/39 (72%), and 27/39 (69%) cases, respectively. Pain (arthralgia, myalgia, headache) was present in 26/39 (67%) cases. The most prominent SEID symptoms were fatigue, followed by post-exercise discomfort and cognitive difficulties. The most disabling symptom was non-restorative sleep, followed by pain. An inflammatory and/or autoimmune context was noted in 13 patients (33%), and these comorbidities could have favored the deterioration of the general condition. Three patients also presented with fibromyalgia. However, 3 patients did not mention any complaints.
Conclusion: This survey indicated that patients with PPBL most often initially presented with disabling chronic fatigue, chronic pain, and other symptoms suggestive of SEID but requiring more studies to confirm it. Education of medical staff about the symptoms of PPBL should be encouraged to better assess this peculiar condition.
Source: Morizot R, de Korwin JD, Feugier P, Broséus J, Troussard X, Lesesve JF. Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease. J Clin Med. 2021 Jul 29;10(15):3374. doi: 10.3390/jcm10153374. PMID: 34362156. https://pubmed.ncbi.nlm.nih.gov/34362156/
Abstract:
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term disabling illness accompanied by fatigue unsolved by rest. However, ME/CFS is a poorly understood illness that lacks a universally accepted pathophysiology and treatment. A lack of CFS-related studies have been conducted in Asian countries. This study aimed to estimate and compare the prevalence of ME/CFS in Korea and Japan and conducted a meta-analysis.
Methods: We searched PubMed, EMBASE, Cochrane, and KMBASE for population-based prevalence studies of the two countries and synthesized the data according to the Fukuda case definition.
Results: Of the eight studies (five in Korea, three in Japan) included, the total prevalence rate of Korean studies was 0.77% (95% CI 0.34-1.76), and 0.76% (95% CI 0.46-1.25) for the Japanese studies. The prevalence rate in females was approximately two-fold higher than males in Korean studies (1.31% female vs. 0.60% male), while the gender difference was less obvious in Japanese studies (0.76% female vs. 0.65% male).
Conclusions: Further epidemiology studies on the female ME/CFS prevalence rate between countries may be required.
Source: Lim EJ, Son CG. Prevalence of Chronic Fatigue Syndrome (CFS) in Korea and Japan: A Meta-Analysis. J Clin Med. 2021 Jul 21;10(15):3204. doi: 10.3390/jcm10153204. PMID: 34361987. https://pubmed.ncbi.nlm.nih.gov/34361987/
Abstract:
Chronic fatigue and Immune Dysfunction Syndrome (CFIDS) is a heterogeneous disease that may be promoted by various environmental stressors, including viral infection, toxin uptake, and ionizing radiation exposure. Previous studies have identified mitochondrial dysfunction in CFIDS patients, including modulation of mitochondrial respiratory chain activity, deletions in the mitochondrial genome, and upregulation of reactive oxygen species (ROS). This paper focuses on radiation effects and hypothesizes that CFIDS is primarily caused by stressor-induced mitochondrial metabolic insufficiency, which results in decreased energy production and anabolic metabolites required for normal cellular metabolism. Furthermore, tissues neighbouring or distant from directly perturbed tissues compensate for this dysfunction, which causes symptoms associated with CFIDS.
This hypothesis is justified by reviewing the links between radiation exposure and CFIDS, cancer, immune dysfunction, and induction of oxidative stress. Moreover, the relevance of mitochondria in cellular responses to radiation and metabolism are discussed and putative mitochondrial biomarkers for CFIDS are introduced. Implications for diagnosis are then described, including a potential urine assay and PCR test for mitochondrial genome mutations. Finally, future research needs are offered with an emphasis on where rapid progress may be made to assist the afflicted.
Source: Rusin A, Li M, Cocchetto A, Seymour C, Mothersill C. Radiation exposure and mitochondrial insufficiency in chronic fatigue and immune dysfunction syndrome. Med Hypotheses. 2021 Jul 27;154:110647. doi: 10.1016/j.mehy.2021.110647. Epub ahead of print. PMID: 34358921. https://pubmed.ncbi.nlm.nih.gov/34358921/
Abstract:
Myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS) patients suffer from a variety of physical and neurological complaints indicating the central nervous system plays a role in ME/CFS pathophysiology. Diffusion tensor imaging (DTI) has been used to study microstructural changes in neurodegenerative diseases. In this study, we evaluated DTI parameters to investigate microstructural abnormalities in ME/CFS patients.
We estimated DTI parameters in 25 ME/CFS patients who met Fukuda criteria (ME/CFSFukuda ), 18 ME/CFS patients who met International Consent Criteria (ICC) (ME/CFSICC ) only, and 26 healthy control subjects (HC). In addition to voxel-based DTI-parameter group comparisons, we performed voxel-based DTI-parameter interaction-with-group regressions with clinical and autonomic measures to test for abnormal regressions.
Group comparisons between ME/CFSICC and HC detected significant clusters (a) with decreased axial diffusivity (p=0.001) and mean diffusivity (p=0.01) in the descending cortico-cerebellar tract in the midbrain and pons, and (b) with increased transverse diffusivity in the medulla. The mode of anisotropy was significantly decreased (p=0.001) in a cluster in the superior longitudinal fasciculus region. Voxel-based group comparisons between ME/CFSFukuda and HC did not detect significant clusters. For ME/CFSICC and HC, DTI parameter interaction-with-group regressions were abnormal for the clinical measures of information processing score, SF36 physical, sleep disturbance score, and respiration rate in both grey and white matter regions.
Our study demonstrated that DTI parameters are sensitive to microstructural changes in ME/CFSICC and could potentially act as an imaging biomarker of abnormal pathophysiology in ME/CFS. The study also shows that strict case definitions are essential in investigation of the pathophysiology of ME/CFS.
Source: Thapaliya K, Marshall-Gradisnik S, Staines D, Barnden L. Diffusion tensor imaging reveals neuronal microstructural changes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Eur J Neurosci. 2021 Aug 6. doi: 10.1111/ejn.15413. Epub ahead of print. PMID: 34355438. https://pubmed.ncbi.nlm.nih.gov/34355438/
Aims: The Gulf War Illness programs (GWI) of the United States Department of Veteran Affairs and the Department of Defense Congressionally Directed Medical Research Program collaborated with experts to develop Common Data Elements (CDEs) to standardize and systematically collect, analyze, and share data across the (GWI) research community.
Main methods: A collective working group of GWI advocates, Veterans, clinicians, and researchers convened to provide consensus on instruments, case report forms, and guidelines for GWI research. A similar initiative, supported by the National Institute of Neurologic Disorders and Stroke (NINDS) was completed for a comparative illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and provided the foundation for this undertaking. The GWI working group divided into two sub-groups (symptoms and systems assessment). Both groups reviewed the applicability of instruments and forms recommended by the NINDS ME/CFS CDE to GWI research within specific domains and selected assessments of deployment exposures. The GWI CDE recommendations were finalized in March 2018 after soliciting public comments.
Key findings: GWI CDE recommendations are organized in 12 domains that include instruments, case report forms, and guidelines. Recommendations were categorized as core (essential), supplemental-highly recommended (essential for specified conditions, study types, or designs), supplemental (commonly collected, but not required), and exploratory (reasonable to use, but require further validation). Recommendations will continually be updated as GWI research progresses.
Significance: The GWI CDEs reflect the consensus recommendations of GWI research community stakeholders and will allow studies to standardize data collection, enhance data quality, and facilitate data sharing
Source: Cohen DE, Sullivan KA, McNeil RB, Klimas NG; Gulf War Illness Common Data Elements Working Group; Symptoms Assessment Working Group, McNeil R, Ashford W, Bested A, Bunker J, Cheema A, Cohen D, Cook D, Cournoyer J, Craddock T, Golier J, Hardie A, Helmer D, Lindheimer JB, Lloyd PJ, Kerr K, Krengel M, Nadkarni S, Nugent S, Paris B, Reinhard M, Rumm P, Schneiderman A, Sims KJ, Steele L, Turner M; Systems Assessment Working Group, Sullivan K, Abdullah L, Abreu M, Abu-Donia M, Aenlle K, Arocho J, Balbin E, Baraniuk J, Block K, Block M, DeBeer B, Engdahl B, Filipov N, Fletcher MA, Kalasinsky V, Kokkotou E, Lidie K, Little D, Loging W, Morris M, Nathanson L, Nichols MD, Pasinetti G, Shungu D, Waziry P, VanLeeuwen J, Younger J; GWI CDE Administrative Team, Klimas N. A common language for Gulf War Illness (GWI) research studies: GWI common data elements. Life Sci. 2021 Aug 2:119818. doi: 10.1016/j.lfs.2021.119818. Epub ahead of print. PMID: 34352259. https://pubmed.ncbi.nlm.nih.gov/34352259/
Abstract:
Primary and specialty care clinicians strive to base diagnoses and treatment on specific, measurable abnormalities. Yet those with invisible, controversial illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often have symptoms not explained by standard laboratory values. For instance, one of the cardinal features of ME/CFS is postexertional malaise, the exacerbation of symptoms-fatigue, pain, cognitive dysfunction-following exertion, which contradicts studies showing the health benefits of exercise. In these cases, overly physicalist approaches to caring for patients are not likely to be helpful, and a clinician’s willingness to listen to a patient’s experience of illness becomes essential.
Source: Wall D. The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19. AMA J Ethics. 2021 Jul 1;23(7):E590-595. doi: 10.1001/amajethics.2021.590. PMID: 34351274. https://pubmed.ncbi.nlm.nih.gov/34351274/