Chronic Fatigue Syndrome Advisory Committee: Patient Registry Model

Total Page:16

File Type:pdf, Size:1020Kb

Chronic Fatigue Syndrome Advisory Committee: Patient Registry Model Chronic Fatigue Syndrome Advisory Committee: Patient Registry Model Ben Heywood, Co-founder & President June 17, 2014 PatientsLikeMe: share, connect, learn Step 1: Step 2: Create/update your Find support from and patient profile and compare experiences share it with others with other patients like you patient engagement cycle Step 5: Step 3: Play an integral and Learn from aggregated participatory role in your community Treatment health care and Symptom Reports Step 4: Take your patient profile to your provider appointments for an improved dialogue 2 Patient Powered Research Network patients data insights - 260,000+ Patients - 21 mm structured data - 40+ peer-reviewed papers - 2000+ Diseases points Networking ‘dose effect’ - Top Communities 400,000 symptom reports Off-label effectiveness data Fibromyalgia 350,000 condition PRO scores Data sharing preferences Multiple Sclerosis 150,000 side effect reports Burden of chronic illness Major Depressive Disorder 110,000 treatment stop reports Risk / benefit tolerance Diabetes Type 2 100,000 quality of life scores Insomnia study Generalized Anxiety Disorder - 3 mm free text fields Patient perspective on trials Chronic Fatigue Syndrome 2 mm forum conversations - Safety monitoring platform Epilepsy 750,000 journal stories - Patient-generated Parkinson’s Disease 320,000 private messages Rheumatoid Arthritis taxonomy 90,000 peer-peer comments 3 Patient-centered persona based design Tweaker/tracker Leader/connector Activated, fact-based Slow decision possible Help me capture the Help me organize Help my providers know Help me manage today’s data that I care about groups of people with me and use my data to symptoms without worrying common goals improve my care about tormorrow’s Contented Fast decision required In limbo Caregiver Help me focus on Help me make the right Help me figure out what’s Help me give both of my my grandchildren, choice about wrong with me boys a good life not my health treatment…fast Patient-generated health data: common standards Patient Experience Conditions Care Stakeholders Management Primary / Secondary (self & providers) Comorbids Diagnostic Journey Access & Symptoms Reimbursement Hospitalizations Patients Age Treatments Industry Shared Decision Gender Dates of Therapy Regulators Making Race Indication for Use Payers Ethnicity Effectiveness Researchers Side Effects Providers Location CER, PCOR, Adherence History HEOR Payer type Stop Reasons Advice / Tips ActiveActive Safety Safety Related Data SurveillanceSurveillance Labs, Tests, BMI Free Text Narrative 5 ME/CFS Patient Experience Proprietary & Confidential 6 7 8 9 1 Patient-centered community reports What is it like to have ME / CFS? Is my ME/CFS experience normal for someone like me? What does normal mean? Patient-centered community reports What do patients use to manage ME / CFS? How do other patients like me treat their ME / CFS? What were their results and experiences? Current ME/CFS Registry Demographic Data Proprietary & Confidential 13 Patient Reported Outcomes Proprietary & Confidential 14 Condition-specific Outcome Measures Measure Condition Multiple Sclerosis Rating Scale (MSRS) Multiple Sclerosis Pulmonary Fibrosis Severity Score Pulmonary Fibrosis Pain and Fatigue Rating Scale (PFRS) Fibromyalgia Chronic Fatigue Syndrome Seizure Survey Epilepsy Functional Rating Scale Amyotrophic lateral sclerosis Parkinson’s Disease Rating Scale (PDRS) Parkinson’s Disease Psoriasis Dermatology Quality of Life Index Movement Disorder Rating Scale Multiple System Atrophy Progressive Supranuclear Palsy Autism Treatment Evaluation Checklist (ATEC) Autism Spectrum Disorder Neuromyelitis Optica Rating Scale (NORS) Neuromyelitis Optica 15 With support from http://www.openresearchexchange.com 16 How Open Research Exchange works • Quickly design and field measures • Test and get feedback from real patients on our network • Add to and browse the only open library of patient-reported instruments and health measurements With support from PRO measure development platform Clear – I understand what it means Answerable – it’s information I have Efficient – it respects my time Relevant – describes my experience Educational – what is & isn’t part of my condition Harmless – doesn’t make me sad, anxious, symptomatic Actionable – helps me change, discuss with providers With support from Research Proprietary & Confidential 19 Sharing health data => Shared insights After using PatientsLikeMe… • 71% HIV patients agreed or strongly agreed that they took more of an interest in their lab values • 63% of members agreed they had a better understanding of the consequences of taking a “drug holiday” • 12% of members changed their physician 20 Patient illuminate gaps in standard of care 53% 54% Wicks & Fountain (2012) Patient assessment of physician performance of epilepsy quality of care measures. Neurology Clinical Practice 2:335 Proprietary & Confidential 21 Excerpt: The Health Blog “If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” - Leonard Kish 8/28/12 HL7 Standards Blog 22 Proprietary & Confidential 23 PatientsLikeMe publications 40+ disease specific and general scientific research publications 24 Partner Opportunities Proprietary & Confidential 25 A turnkey registry for research, recruitment Traditional Traditional PatientLikeMe’s Clinical Research Patient Registry Open Registry A well-defined population A well-defined, growing Comprehensive patient studied under controlled population fitting inclusion population where researchers can conditions and exclusion criteria integrate new questions and measures anytime Patients are subjects, not Patients only interact with partners in the research researchers during the Patients are proactively involved since research is designed to study in research and can interact test against a specific regularly with researchers question or clinical insight Offers 360 degree view of patients, 365 days a year 26 Partnering with PatientsLikeMe Increased awareness… Customized landing pages Customized nonprofit page in the community to target awareness campaigns to your followers Managed interactions and communications with patients, advocates and mentors Promote programs using profile feeds and auto following Guest partner hosting on forum Cross promotions via Facebook, Twitter and Flickr Joint press releases, blogs 27 Useful resources & links Chronological Bibliography June 2014 PDF Data For Good video A family's story.
Recommended publications
  • Fatigue and Parkinson's Disease
    Fatigue and Parkinson’s Disease Gordon Campbell MSN FNP PADRECC Portland VAMC, October 24, 2014 Sponsored by the NW PADRECC - Parkinson's Disease Research, Education & Clinical Center Portland VA Medical Center www.parkinsons.va.gov/Northwest Outline • What is fatigue? • How differs from sleepiness, depression • How do doctors measure it? • Why is fatigue such a problem in PD? • How if fatigue in PD different? • How will exercise and nutrition help? • Will medications work? What is Fatigue? • One of most common symptoms in medicine. • Fatigue is the desire to rest. No energy. • Chronic fatigue: “overwhelming and sustained exhaustion and decreased capacity to physical or mental work, not relieved by rest • Acute (days) or chronic (months, years) • May be incapacitating • Cannot be checked with doctor’s exam – Not like tremor, stiffness 1 Fatigue: What Is It? • Not sleepiness (cannot stay awake) • Not depression (blue, hopeless, cranky) • Rather is sustained exhaustion and decreased capacity for physical and mental work that is not relieved by rest – Get up tired after a night's sleep, always tired. • Also, a subjective lack of physical and/or mental energy that interferes with usual and desired activities Fatigue: A Big Problem • 10 million physician office visits/year in USA. • Usual cause for this fatigue in general doctor’s office = depression. • Different in Parkinson’s disease, various other medical illnesses. 2 Many Illnesses and Drugs Cause Fatigue • Medical diseases – Diabetes – Thyroid disease (too low or too high) – Emphysema, heart failure – Rheumatologic diseases – Cancer or radiation therapy – Anemia • Drugs – Beta blockers, antihistamines, pain killers, alcohol • Other neurological diseases – Strokes – Post polio syndrome – Narcolepsy, obstructive sleep apnea – Old closed head injuries – Multiple sclerosis 5 Dimensions of Fatigue • General fatigue • Physical fatigue • Mental fatigue • Reduced motivation • Reduced activity Depression correlates with all 5 dimensions.
    [Show full text]
  • Brain Imaging Reveals Clues About Chronic Fatigue Syndrome 23 May 2014
    Brain imaging reveals clues about chronic fatigue syndrome 23 May 2014 The results are scheduled for publication in the journal PLOS One. "We chose the basal ganglia because they are primary targets of inflammation in the brain," says lead author Andrew Miller, MD. "Results from a number of previous studies suggest that increased inflammation may be a contributing factor to fatigue in CFS patients, and may even be the cause in some patients." Miller is William P. Timmie professor of psychiatry and behavioral sciences at Emory University School of Medicine. The study was a collaboration among researchers at Emory University School of Medicine, the CDC's Chronic Viral Diseases Branch, and the University of Modena and Reggio Credit: Vera Kratochvil/public domain Emilia in Italy. The study was funded by the CDC. The basal ganglia are structures deep within the brain, thought to be responsible for control of A brain imaging study shows that patients with movements and responses to rewards as well as chronic fatigue syndrome may have reduced cognitive functions. Several neurological disorders responses, compared with healthy controls, in a involve dysfunction of the basal ganglia, including region of the brain connected with fatigue. The Parkinson's disease and Huntington's disease, for findings suggest that chronic fatigue syndrome is example. associated with changes in the brain involving brain circuits that regulate motor activity and In previous published studies by Emory motivation. researchers, people taking interferon alpha as a treatment for hepatitis C, which can induce severe Compared with healthy controls, patients with fatigue, also show reduced activity in the basal chronic fatigue syndrome had less activation of the ganglia.
    [Show full text]
  • Fatigue After Stroke
    SPECIAL REPORT Fatigue after stroke PJ Tyrrell Fatigue is a common symptom after stroke. It is not invariably related to stroke severity & DG Smithard† and can occur in the absence of depression. It is one of the most troublesome symptoms for †Author for correspondence many patients and yet nothing is known of its causation. There are no specific treatments. William Harvey Hospital, Richard Steven’s Ward, This article assesses the available literature in the context of what is known about fatigue Ashford, Kent, in other disorders. Post-stroke fatigue may be a manifestation of sickness behavior, TN24 0LZ, UK mediated through the central effects of the cytokine interleukin-1, perhaps via effects on Tel.: +44 123 361 6214 Fax: +44 123 361 6662 glutamate neurotransmission. Possible therapeutic strategies are discussed which might be [email protected] a logical basis from which to plan randomized control trials. Following stroke, approximately a third of common and disabling symptom of Parkinson’s patients die, a third recover and a third remain disease [7,8] and of systemic lupus [9]. More than significantly disabled. Even those who recover 90% of patients with poliomyelitis develop a physically may be left with significant emotional delayed syndrome of post-myelitis fatigue [10]. and psychologic dysfunction – including anxi- Fatigue is the most prevalent symptom of ety, readjustment reactions and depression. One patients with cancer who receive radiation, cyto- common but often overlooked symptom is toxic or other therapies [11], and it may persist fatigue. This may occur soon or late after stroke, for years after the cessation of treatment [12].
    [Show full text]
  • Downloads/Drugs/Guidances/UCM193282.Pdf
    Bradley et al. Research Involvement and Engagement (2016) 2:33 DOI 10.1186/s40900-016-0047-6 RESEARCHARTICLE Open Access Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe Meaghan Bradley* , Julia Braverman, Magdalena Harrington and Paul Wicks * Correspondence: [email protected] Plain English summary: PLM is an online platform that provides tools for PatientsLikeMe, Inc., 160 Second St., individuals to track their health and connect with other patients and while PLM has Cambridge, MA 02142, USA invited patients to participate in various research projects throughout the years, an examination into what motivates patients to want to get involved in clinical research has not been done. During our analysis of applications submitted by members of the PLM community, we looked for reasons patients want to participate in research and their overall beliefs about clinical research, in general. In addition, we analyzed obstacles and barriers toward patients’ research participation. We observed the following: Patients are typically motivated by their individual needs and are most interested in research specific to their own condition. To get the most from patients’ involvement and to enhance patients’ contribution towards research goals, researchers should explain the research goal and requirements of each goal in clear and transparent terms, making it easy for patients to understand, thus avoiding any potential miscommunication. Future studies are needed to determine the best methods for involving patients in clinical research. Background: Historically, throughout the clinical and medical research arenas, patients have been perceived as passive “subjects” rather than as individuals who may have thoughts regarding research development, research plans, implementation of research studies, and data analysis.
    [Show full text]
  • ME/CFS) Key Facts
    KEY FACTS FEBRUARY 2015 For more information visit www.iom.edu/MECFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts What is the prevalence of ME/CFS? • ME/CFS affects 836,000 to 2.5 million Americans. • An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed, meaning the true prevalence of ME/CFS is unknown. • ME/CFS affects women more often than men. Most patients currently diagnosed with ME/CFS are Caucasian, but some studies suggest that ME/CFS is more common in minority groups. • The average age of onset is 33, although ME/CFS has been reported in patients younger than age 10 and older than age 70. What are the symptoms and other effects of ME/CFS? • There are five main symptoms of ME/CFS: 1. Reduction or impairment in ability to carry out normal daily activities, accompanied by pro- found fatigue; 2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort); 3. Unrefreshing sleep; 4. Cognitive impairment; and 5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down). • Other common manifestations of ME/CFS include pain, failure to recover from a prior infection, and abnormal immune function. • At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness. • Symptoms can persist for years, and most patients never regain their pre-disease level of health or functioning. • ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually.
    [Show full text]
  • HEADACHES and ME/CFS INTRODUCTION Headaches Are Often Reported by People with ME/CFS
    MANAGEMENT FILE the ME association by DR CHARLES SHEPHERD, our medical adviser This leaflet is based on an article which first appeared in the ME Association’s quarterly ME Essential magazine. MEA membership costs £18 a year for people living in the UK/BFPO. For contact details, see foot of this page. February 2020 HEADACHES AND ME/CFS INTRODUCTION Headaches are often reported by people with ME/CFS. They also form part of the symptom list for most diagnostic criteria for ME/CFS. But headaches can obviously have other causes – physical and psychological – as well. WHAT CAUSES HEADACHES? Doctors classify headaches as being sides of the head – as if a rubber band arteries in the head and neck. primary where there is no obvious link has been stretched around it. Common Temporal arteritis is a medical to an underlying medical problem, or causes include stress, depression, lack emergency that requires urgent treat- secondary where there is a clear link. of proper sleep, skipping meals, not ment with high-dose steroids. drinking enough fluid and alcohol. Primary headaches include: Headaches in women can be caused Secondary headaches are caused by Cluster headaches by hormonal problems – including an existing medical problem. Some of An excruciatingly painful headache taking the contraceptive pill, going these are serious, which is why you must that causes intense pain around one through the menopause, pregnancy, see your doctor if you have severe or eye. Cluster headaches are fairly rare and as part of period pain. persistent headaches. and tend to occur in clusters for a It’s also worth noting that a headache month or two, sometimes around the Common causes, which are normally is the most common symptom of same time each year.
    [Show full text]
  • Chronic Fatigue Syndrome (CFS) Disease Fact Sheet Series
    WISCONSIN DIVISION OF PUBLIC HEALTH Department of Health Services Chronic Fatigue Syndrome (CFS) Disease Fact Sheet Series What is chronic fatigue syndrome? Chronic fatigue syndrome (CFS) is a recently defined illness consisting of a complex of related symptoms. The most characteristic symptom is debilitating fatigue that persists for several months. What are the other symptoms of CFS? In addition to profound fatigue, some patients with CFS may complain of sore throat, slight fever, lymph node tenderness, headache, muscle and joint pain (without swelling), muscle weakness, sensitivity to light, sleep disturbances, depression, and difficulty in concentrating. Although the symptoms tend to wax and wane, the illness is generally not progressive. For most people, symptoms plateau early in the course of the illness and recur with varying degrees of severity for at least six months and sometimes for several years. What causes CFS? The cause of CFS is not yet known. Early evidence suggested that CFS might be associated with the body's response to an infection with certain viruses, however subsequent research has not shown an association between an infection with any known human pathogen and CFS. Other possible factors that have been suspected of playing a role in CFS include a dysfunction in the immune system, stress, genetic predisposition, and a patient’s psychological state. Is CFS contagious? Because the cause of CFS remains unknown, it is impossible to answer this question with certainty. However, there is no convincing evidence that the illness can be transmitted from person to person. In fact, there is no indication at this time that CFS is caused by any single recognized infectious disease agent.
    [Show full text]
  • Migraine Headaches in Chronic Fatigue Syndrome (CFS)
    Ravindran et al. BMC Neurology 2011, 11:30 http://www.biomedcentral.com/1471-2377/11/30 RESEARCHARTICLE Open Access Migraine headaches in Chronic Fatigue Syndrome (CFS): Comparison of two prospective cross- sectional studies Murugan K Ravindran, Yin Zheng, Christian Timbol, Samantha J Merck, James N Baraniuk* Abstract Background: Headaches are more frequent in Chronic Fatigue Syndrome (CFS) than healthy control (HC) subjects. The 2004 International Headache Society (IHS) criteria were used to define CFS headache phenotypes. Methods: Subjects in Cohort 1 (HC = 368; CFS = 203) completed questionnaires about many diverse symptoms by giving nominal (yes/no) answers. Cohort 2 (HC = 21; CFS = 67) had more focused evaluations. They scored symptom severities on 0 to 4 anchored ordinal scales, and had structured headache evaluations. All subjects had history and physical examinations; assessments for exclusion criteria; questionnaires about CFS related symptoms (0 to 4 scale), Multidimensional Fatigue Inventory (MFI) and Medical Outcome Survey Short Form 36 (MOS SF-36). Results: Demographics, trends for the number of diffuse “functional” symptoms present, and severity of CFS case designation criteria symptoms were equivalent between CFS subjects in Cohorts 1 and 2. HC had significantly fewer symptoms, lower MFI and higher SF-36 domain scores than CFS in both cohorts. Migraine headaches were found in 84%, and tension-type headaches in 81% of Cohort 2 CFS. This compared to 5% and 45%, respectively, in HC. The CFS group had migraine without aura (60%; MO; CFS+MO), with aura (24%; CFS+MA), tension headaches only (12%), or no headaches (4%). Co-morbid tension and migraine headaches were found in 67% of CFS.
    [Show full text]
  • The Role of Prevention in Reducing the Economic Impact of ME/CFS in Europe: a Report from the Socioeconomics Working Group of Th
    medicina Opinion The Role of Prevention in Reducing the Economic Impact of ME/CFS in Europe: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE) Derek F. H. Pheby 1,* , Diana Araja 2 , Uldis Berkis 3, Elenka Brenna 4 , John Cullinan 5 , Jean-Dominique de Korwin 6,7 , Lara Gitto 8 , Dyfrig A. Hughes 9 , Rachael M. Hunter 10 , Dominic Trepel 11 and Xia Wang-Steverding 12 1 Society and Health, Buckinghamshire New University, High Wycombe HP11 2JZ, UK 2 Department of Dosage Form Technology, Faculty of Pharmacy, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, Latvia; [email protected] 3 Institute of Microbiology and Virology, Riga Stradins University, Dzirciema Street 16, LV-1007 Riga, Latvia; [email protected] 4 Department of Economics and Finance, Università Cattolica del Sacro Cuore, Largo Agostino Gemelli 1, 20123 Milan, Italy; [email protected] 5 School of Business & Economics, National University of Ireland Galway, University Road, H91 TK33 Galway, Ireland; [email protected] 6 Internal Medicine Department, University of Lorraine, 34, Cours Léopold CS 25233, F-54052 Nancy, France; Citation: Pheby, D.F.H.; Araja, D.; [email protected] 7 Berkis, U.; Brenna, E.; Cullinan, J.; de University Hospital of Nancy, Rue du Morvan, 54511 Vandoeuvre-Les-Nancy, France 8 Department of Economics, University of Messina, Piazza Pugliatti 1, 98122 Messina, Italy; [email protected] Korwin, J.-D.; Gitto, L.; Hughes, D.A.; 9 Centre for Health Economics & Medicines Evaluation, Bangor University, Bangor LL57 2PZ, UK; Hunter, R.M.; Trepel, D.; et al.
    [Show full text]
  • Chronic Fatigue Syndrome
    Ministry of Defence Synopsis of Causation Chronic Fatigue Syndrome Author: Dr Adrian Roberts, Medical Author, Medical Text, Edinburgh Validator: Dr Selwyn Richards, Poole Hospital NHS Trust, Poole, Dorset September 2008 Disclaimer This synopsis has been completed by medical practitioners. It is based on a literature search at the standard of a textbook of medicine and generalist review articles. It is not intended to be a meta- analysis of the literature on the condition specified. Every effort has been taken to ensure that the information contained in the synopsis is accurate and consistent with current knowledge and practice and to do this the synopsis has been subject to an external validation process by consultants in a relevant specialty nominated by the Royal Society of Medicine. The Ministry of Defence accepts full responsibility for the contents of this synopsis, and for any claims for loss, damage or injury arising from the use of this synopsis by the Ministry of Defence. 2 1. Definition 1.1 Chronic fatigue syndrome (CFS) is a significant illness that causes severe disabling physical and mental fatigue exacerbated by minimal exertion, in the absence of any conventional physical or psychological disorder to explain the problem. The term “chronic fatigue syndrome” was conceived relatively recently. However, the symptom complex that it describes has been recognised for over a century, during which time it has been classified under a variety of titles including neurasthenia, Royal Free disease, myalgic encephalomyelitis (ME), and post-viral fatigue syndrome. 1.2 CFS is defined by symptoms and disability and has no confirmatory physical signs or characteristic laboratory abnormalities.
    [Show full text]
  • Potential Role of Microbiome in Chronic Fatigue Syndrome
    www.nature.com/scientificreports OPEN Potential role of microbiome in Chronic Fatigue Syndrome/ Myalgic Encephalomyelits (CFS/ ME) Giuseppe Francesco Damiano Lupo1,2,3, Gabriele Rocchetti1, Luigi Lucini1, Lorenzo Lorusso4, Elena Manara5, Matteo Bertelli5, Edoardo Puglisi1* & Enrica Capelli2* Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a severe multisystemic disease characterized by immunological abnormalities and dysfunction of energy metabolism. Recent evidences suggest strong correlations between dysbiosis and pathological condition. The present research explored the composition of the intestinal and oral microbiota in CFS/ME patients as compared to healthy controls. The fecal metabolomic profle of a subgroup of CFS/ME patients was also compared with the one of healthy controls. The fecal and salivary bacterial composition in CFS/ ME patients was investigated by Illumina sequencing of 16S rRNA gene amplicons. The metabolomic analysis was performed by an UHPLC-MS. The fecal microbiota of CFS/ME patients showed a reduction of Lachnospiraceae, particularly Anaerostipes, and an increased abundance of genera Bacteroides and Phascolarctobacterium compared to the non-CFS/ME groups. The oral microbiota of CFS/ME patients showed an increase of Rothia dentocariosa. The fecal metabolomic profle of CFS/ME patients revealed high levels of glutamic acid and argininosuccinic acid, together with a decrease of alpha-tocopherol. Our results reveal microbial signatures of dysbiosis in the intestinal microbiota of CFS/ME patients. Further studies are needed to better understand if the microbial composition changes are cause or consequence of the onset of CFS/ME and if they are related to any of the several secondary symptoms. Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a severe debilitating multi- systemic disease that involves nervous1, immune2,3, endocrine4, digestive5, and skeletal6 systems and is associated with dysfunctions of both energy metabolism and cellular ion transport 7.
    [Show full text]
  • Discriminatory Cytokine Profiles Predict Muscle Function, Fatigue and Cognitive Function in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
    medRxiv preprint doi: https://doi.org/10.1101/2020.08.17.20164715; this version posted August 21, 2020. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY-NC-ND 4.0 International license . Discriminatory cytokine profiles predict muscle function, fatigue and cognitive function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Gusnanto A1,2, Earl KE3, Sakellariou GK3, Owens DJ4, Lightfoot A3, Fawcett S3, Owen E3, CA Staunton3, Shu T3, Croden FC1, Fenech M5, Sinclair M3, Ratcliffe L5, Whysall KA3, Haynes R1, Wells NM3, Jackson MJ3, Close GL4, Lawton C1, Beadsworth MBJ5, Dye, L1, McArdle A3. 1Human Appetite Research Unit, School of Psychology, University of Leeds, Leeds, UK; 2Department of Statistics, University of Leeds, Leeds, UK; 3Department of Musculoskeletal and Ageing Science, Institute of Life Course and Medical Sciences, MRC-Arthritis Research UK and Centre for Integrated Research into Musculoskeletal Ageing, University of Liverpool, Liverpool, UK. 4Research Institute for Sport and Exercise Science, Liverpool John Moores University, Liverpool, UK; 5Tropical and Infectious Disease Unit, Royal Liverpool University Hospital, Liverpool University Hospitals Foundation Trust, Liverpool, UK. Corresponding Author Mike Beadsworth Email: [email protected] Keywords: Mitochondria, skeletal muscle, cognition, PDGF. NOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice. medRxiv preprint doi: https://doi.org/10.1101/2020.08.17.20164715; this version posted August 21, 2020.
    [Show full text]