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Research articles

Use of progestogens and the risk of intracranial meningioma, delirium and incident dementia in hospital patients, derivation and external validation of a simple risk score for predicting severe acute kidney injury after intravenous cisplatin, quality and safety of artificial intelligence generated health information, large language models and the generation of health disinformation, 25 year trends in cancer incidence and mortality among adults in the uk, cervical pessary versus vaginal progesterone in women with a singleton pregnancy, comparison of prior authorization across insurers, diagnostic accuracy of magnetically guided capsule endoscopy with a detachable string for detecting oesophagogastric varices in adults with cirrhosis, ultra-processed food exposure and adverse health outcomes, added benefit and revenues of oncology drugs approved by the ema, exposure to air pollution and hospital admission for cardiovascular diseases, short term exposure to low level ambient fine particulate matter and natural cause, cardiovascular, and respiratory morbidity, optimal timing of influenza vaccination in young children, effect of exercise for depression, association of non-alcoholic fatty liver disease with cardiovascular disease and all cause death in patients with type 2 diabetes, duration of cpr and outcomes for adults with in-hospital cardiac arrest, clinical effectiveness of an online physical and mental health rehabilitation programme for post-covid-19 condition, atypia detected during breast screening and subsequent development of cancer, publishers’ and journals’ instructions to authors on use of generative ai in academic and scientific publishing, effectiveness of glp-1 receptor agonists on glycaemic control, body weight, and lipid profile for type 2 diabetes, neurological development in children born moderately or late preterm, invasive breast cancer and breast cancer death after non-screen detected ductal carcinoma in situ, all cause and cause specific mortality in obsessive-compulsive disorder, acute rehabilitation following traumatic anterior shoulder dislocation, perinatal depression and risk of mortality, undisclosed financial conflicts of interest in dsm-5-tr, effect of risk mitigation guidance opioid and stimulant dispensations on mortality and acute care visits, update to living systematic review on sars-cov-2 positivity in offspring and timing of mother-to-child transmission, perinatal depression and its health impact, christmas 2023: common healthcare related instruments subjected to magnetic attraction study, using autoregressive integrated moving average models for time series analysis of observational data, demand for morning after pill following new year holiday, christmas 2023: christmas recipes from the great british bake off, effect of a doctor working during the festive period on population health: experiment using doctor who episodes, christmas 2023: analysis of barbie medical and science career dolls, christmas 2023: effect of chair placement on physicians’ behavior and patients’ satisfaction, management of chronic pain secondary to temporomandibular disorders, christmas 2023: projecting complete redaction of clinical trial protocols, christmas 2023: a drug target for erectile dysfunction to help improve fertility, sexual activity, and wellbeing, christmas 2023: efficacy of cola ingestion for oesophageal food bolus impaction, conservative management versus laparoscopic cholecystectomy in adults with gallstone disease, social media use and health risk behaviours in young people, untreated cervical intraepithelial neoplasia grade 2 and cervical cancer, air pollution deaths attributable to fossil fuels, implementation of a high sensitivity cardiac troponin i assay and risk of myocardial infarction or death at five years, covid-19 vaccine effectiveness against post-covid-19 condition, association between patient-surgeon gender concordance and mortality after surgery, intravascular imaging guided versus coronary angiography guided percutaneous coronary intervention, treatment of lower urinary tract symptoms in men in primary care using a conservative intervention, autism intervention meta-analysis of early childhood studies, effectiveness of the live zoster vaccine during the 10 years following vaccination, effects of a multimodal intervention in primary care to reduce second line antibiotic prescriptions for urinary tract infections in women, pyrotinib versus placebo in combination with trastuzumab and docetaxel in patients with her2 positive metastatic breast cancer, association of dcis size and margin status with risk of developing breast cancer post-treatment, racial differences in low value care among older patients in the us, pharmaceutical industry payments and delivery of low value cancer drugs, rosuvastatin versus atorvastatin in adults with coronary artery disease, clinical effectiveness of septoplasty versus medical management for nasal airways obstruction, ultrasound guided lavage with corticosteroid injection versus sham lavage with and without corticosteroid injection for calcific tendinopathy of shoulder, early versus delayed antihypertensive treatment in patients with acute ischaemic stroke, mortality risks associated with floods in 761 communities worldwide, interactive effects of ambient fine particulate matter and ozone on daily mortality in 372 cities, association between changes in carbohydrate intake and long term weight changes, future-case control crossover analysis for adjusting bias in case crossover studies, association between recently raised anticholinergic burden and risk of acute cardiovascular events, suboptimal gestational weight gain and neonatal outcomes in low and middle income countries: individual participant data meta-analysis, efficacy and safety of an inactivated virus-particle vaccine for sars-cov-2, effect of invitation letter in language of origin on screening attendance: randomised controlled trial in breastscreen norway, visits by nurse practitioners and physician assistants in the usa, non-erosive gastro-oesophageal reflux disease and oesophageal adenocarcinoma, venous thromboembolism with use of hormonal contraception and nsaids, food additive emulsifiers and risk of cardiovascular disease, balancing risks and benefits of cannabis use, promoting activity, independence, and stability in early dementia and mild cognitive impairment, effect of home cook interventions for salt reduction in china, cancer mortality after low dose exposure to ionising radiation, effect of a smartphone intervention among university students with unhealthy alcohol use, long term risk of death and readmission after hospital admission with covid-19 among older adults, mortality rates among patients successfully treated for hepatitis c, association between antenatal corticosteroids and risk of serious infection in children, the proportions of term or late preterm births after exposure to early antenatal corticosteroids, and outcomes, safety of ba.4-5 or ba.1 bivalent mrna booster vaccines, comparative effectiveness of booster vaccines among adults aged ≥50 years, third dose vaccine schedules against severe covid-19 during omicron predominance in nordic countries, private equity ownership and impacts on health outcomes, costs, and quality, healthcare disruption due to covid-19 and avoidable hospital admission, educational inequalities in mortality and their mediators among generations across four decades, prevalence and predictors of data and code sharing in the medical and health sciences, medicare eligibility and in-hospital treatment patterns and health outcomes for patients with trauma, therapeutic value of first versus supplemental indications of drugs in us and europe, hospital admissions linked to sars-cov-2 infection in children and adolescents, vitamin d supplementation and major cardiovascular events, menopausal hormone therapy and dementia, associations between modest reductions in kidney function and adverse outcomes in young adults, association between surgeon volume and patient outcomes after elective shoulder replacement surgery, risk prediction of covid-19 related death or hospital admission in adults testing positive for sars-cov-2, effectiveness of grace risk score in patients admitted to hospital with non-st elevation acute coronary syndrome, peer reviewers’ response to invitations by gender and geographical region, breast cancer mortality in women with early invasive breast cancer, follow us on, content links.

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“Free Full Text Articles”: Where to Search for Them?

Ashish singh.

Consultant Dermatologist, Parkinsganj, Sultanpur, Uttar Pradesh, India

Manish Singh

1 Department of Neurosurgery, JIPMER, Pondicherry, India

Ajai Kumar Singh

2 Department of Neurology, Dr. Ram Manohar Lohia Institute of Medical Sciences, Vibhooti Khand, Gomti Nagar, Lucknow, Uttar Pradesh, India

Deepti Singh

3 Consultant Psychiatrist, Parkinsganj, Sultanpur, Uttar Pradesh, India

Pratibha Singh

4 Department of Obstetrics and Gynaecology, JIPMER, Pondicherry, India

Abhishek Sharma

5 Department of Surgical Oncology, Rajiv Gandhi Cancer Institute and Research Centre, Delhi, India

References form the backbone of any medical literature. Presently, because of high inflation, it is very difficult for any library/organization/college to purchase all journals. The condition is even worse for an individual person, such as private practitioners. The solution lies in the free availability of full-text articles. Here, the authors share their experiences about the accessibility of free full-text articles.

INTRODUCTION

Presently, in India nearly 314 medical colleges are providing undergraduate medical education in the form of MBBS, 163 colleges are providing doctor of medicine in diploma in Dermatology,Venereology and Leprosy (DVL), and 84 colleges are providing diploma in DVL.[ 1 – 3 ] In addition to this, 27 hospitals are providing diplomate of national board in diploma in Venereology and Dermatology.[ 4 ] On comparing this data with number of research articles published, the latter stands in a mediocre situation. One of the important cause responsible for the relatively less number of research publication is unavailability of free full-text articles. Research works, published by most of the journals, are paid. Many of the undergraduates or postgraduate students may not be able to purchase these high-cost journals or articles. In addition to this, many researchers may not be willing to spend money on journals. These are some of the situations where free full-text articles come for rescue, but many of the beginners may not be familiar about how to search these articles. In addition, free full-text articles are the first choice for many of the postgraduate students for their dissertation.

HOW TO APPROACH

In addition to journals which are fully Open Access, there are few other journals which operate through subscriptions as mainstream journals do, but which offer open access to the electronic versions of their articles after a delay of usually a year, or selectively for individual articles, provided the authors have paid an additional charge to “open up” the articles.[ 5 ]

Free full-text articles can be approached in the following ways.

Medknow Publications

Medknow Publications publish nearly 150 journals. They provide free access to the electronic editions of their journals.[ 6 ] Researchers just have to open the site www.medknow.com , fill the key word they require, and search. Alternatively, they can visit the search option, available in most of their journals site through www.journalonweb.com , fill the key word, and search across multiple journals. At times, this site alone provides sufficient number of references required for the purpose. The important dermatological journals published by Medknow Publications are Indian Dermatology Online Journal, Indian Journal of Dermatology, Indian Journal of Dermatology, Venereology, and Leprology, Indian Journal of Sexually Transmitted Diseases and AIDS, International Journal of Trichology, and Journal of Cutaneous and Aesthetic Surgery.[ 7 ]

PubMed Central and PubMed

PubMed Central is the United States National Library of Medicine's digital archive of biomedical and life sciences journal literature which provides free access to the full text of articles.[ 8 ] To search for free full-text articles on PubMed Central, one has to visit the site http://www.ncbi.nlm.nih.gov/pmc/ , write the topic/author/journal title, and search across all articles.

PubMed is a database of citations and abstracts for articles from thousands of journals. PubMed does not include full-text journal articles.[ 9 ] It includes links to full-text articles at many journal web sites as well as to most of the articles in PubMed Central.[ 10 ] Here, articles can be searched on the site http://www.ncbi.nlm.nih.gov/pubmed . Search can be restricted to contents free on web by using filter your results and clicking free full text.[ 11 ]

Directory of Open Access Journals

The directory aims to cover all open access scientific and scholarly journals that use a quality control system to guarantee the content.[ 12 ] It provides articles from 439 medicinal journals. Among them, 21 are from dermatology.[ 13 ] It includes Anais Brasileiros de Dermatologia, BMC Dermatology, Case Reports in Dermatology, Clinical Dermatology, Clinical Medicine Insights: Dermatology, Clinical, Cosmetic and Investigational Dermatology, Dermatología Peruana, Dermatology Online Journal,th Dermatology Reports, Dermatology Research and Practice, Egyptian Dermatology Online Journal, Indian Journal of Dermatology, Indian Journal of Dermatology, Venereology and Leprology, The Internet Journal of Dermatology, Journal of Clinical and Experimental Dermatology Research, Journal of the Egyptian Women's Dermatologic Society, Open Dermatology Journal, Revista Argentina de Dermatología, Surgical and Cosmetic Dermatology, Turk Dermatoloji Dergisi, Turkderm.[ 14 ] The disadvantage of directory of open access journals is that few of these journals are in languages other than English. Here, articles can be searched on the site http://www.doaj.org .

Electronic Resources in Medicine Consortium and National Medical Library

Electronic Resources in Medicine Consortium (ERMED) and National Medical Library (NML) are an excellent platform for obtaining free of cost recent journal articles for its member colleges. There is no membership fees charged from the Government Medical Colleges and institutions. The private colleges and institutions have to make payment per site price for e-sources purchased by the consortium in every calendar year.[ 15 ] Membership of the college can be checked from the site http://www.nmlermed.in/members.htm or volunteers can contact their library to check the membership and to get the user name and password of the site www.ermed.jccc.in allotted to their college.[ 16 ] In 2009, the number of ERMED members increased from 40 to 72 Government Medical Colleges/Institutes across the country.[ 17 ] At present, it covers nearly 32 journals of dermatology. It includes Acta Dermatoveneorologica Alpina, Pannonica et Adriatica, Acta Dermatovenerologica Croatica, Advances in Skin and Wound Care, American Journal of Clinical Dermatology, American Journal of Dermatopathology, Archives of Dermatological Research, Archives of Dermatology,, Asian Journal of Dermatology, BMC Dermatology, Clinical, Cosmetic and Investigational Dermatology, Clinical Dermatology, Contact Dermatitis, Dermatologic Surgery, Dermatology, Dermatology Nursing, Dermatology Online Journal, Dermatology Times, Indian Journal of Dermatology, Indian Journal of Dermatology, Venereology and Leprology, International Journal of Dermatology, Internet Journal of Dermatology, Journal of Drugs in Dermatology, Journal of Investigative Dermatology, Journal of the European Academy of Dermatology and Venereology, Medicine, Open Dermatology Journal, Pediatric Dermatology, Rosacea Review, Skin and Allergy News, Skin Pharmacology and Physiology, Turkdem-Archives of the Turkish Dermatology and Venerology and Turkish Journal of Dermatology.[ 18 ]

Journal articles related to the topic can be searched easily after signing in at the site www.ermed.jccc.in , followed by clicking search database.

Google, Google Scholar, and Yahoo

Google ( http://www.google.com ) and Yahoo search ( http://www.search.yahoo.com ) are two of the world's most hit web pages and two largest web-based search engines.[ 19 ] Usually these are the first search site for any scholar. They provide links for both paid and free articles. The disadvantage associated with these sites is that additionally they provide materials that may not give scholarly information. Many articles are repeated also. But the catch is that one article which is paid at one web link may be free at another web link. Google Scholar ( http://www.scholar.google.com ) provides a simple way to broadly search for the relevant scholarly literature and research.[ 19 ]

The Cochrane Library

The Cochrane Library provides high-quality review articles. The Cochrane Database of Systematic Reviews has an impact factor of 5.653 of 2009.[ 20 ] Articles can be searched on the site http://www.thecochranelibrary.com/view/0/index.html .

Public Library of Science

Public library of science is a nonprofit organization of scientists and physicians committed to making the world's scientific and medical literature a freely available public resource.[ 21 ] Everything published on this site is freely available throughout the world, for researchers to read, download, copy, distribute, and use.[ 22 ] Articles can be searched here on the site http://www.plos.org/search.php .

Free Medical Journals

Currently, total 2226 journals are available on this site.[ 23 ] Among them, nearly 30 are journals are related to dermatology and venereology and most of them are in English.[ 24 ] Some journals are available only a few months after the release. Journals can be searched on the site http://www.freemedicaljournals.com/fmj/DERMA.HTM .

It covers more than 125 medical journals and textbooks. After a simple, free registration, Medscape automatically delivers you the specialty site that best fits your profile.[ 25 ] After signing in at www.medscape.com , articles can be searched.

HighWire Press Stanford University

HighWire Press partners with independent scholarly publishers, societies, associations, and university presses to facilitate the digital dissemination of 1465 journals, reference works, books, and proceedings.[ 26 ] Articles can be searched on the site http://highwire.stanford.edu/ . It provides both free and paid articles.

Bioline International

Bioline International provides open access to peer reviewed bioscience journals published in developing countries.[ 27 ] Articles can be searched on the site http://www.bioline.org.br .

Indmed covers about 77 journals indexed from 1985 onwards. A portal medIND provides free full text access to 40 Indian medical journals.[ 28 ] Articles can be searched on the site http://medind.nic.in .

BioMed Central

BioMed Central is a Science, Technology, and Medicine publisher. All original research articles published by BioMed Central are made free and permanently accessible online immediately upon publication.[ 29 ] After free registration, journals can be searched over http://www.biomedcentral.com/browse/journals/ .

Geneva Foundation for Medical Education and Research

Important dermatology journals in English included in this site are Acta Dermato-Venereologica, Acta Dermatovenerologica Alpina, Pannonica et Adriatica, Annals of Dermatology, Archives of Dermatology, Asian Journal of Dermatology, BMC Dermatology, Case Reports in Dermatology, Clinical Medicine Insights: Dermatology, Clinical, Cosmetic and Investigational Dermatology, Dermato-Endocrinology, Dermatology Online Journal, Dermatology Reports, Dermatology Research and Practice, Dermatology Times, European Journal of Dermatology, Indian Journal of Dermatology, Indian Journal of Dermatology, Venereology and Leprology, International Journal of Trichology, Internet Journal of Dermatology, Journal of Clinical and Experimental Dermatology Research, Journal of Clinical and Aesthetic Dermatology, Journal of Clinical, Cosmetic and Investigational Dermatology, Journal of Investigative Dermatology, Journal of Skin Cancer, Journal of the Egyptian Women's Dermatologic Society, Leprosy Review, Open Dermatology Journal, Rosacea Review, Skin Therapy Letter, World Wide Wounds.[ 30 ] Journals can be seen on the site http://www.gfmer.ch/Medical_journals/Dermatology.htm .

The website of Italian Library Association

Here journals can be traced on the site http://www.aib.it/aib/commiss/cnur/peb/pebs.htm3 . This site provides both free and paid journal articles.

UK PubMed Central

UK PubMed Central (UKPMC) is a full-text article database that extends the functionality of the original PubMed Central (PMC) repository. UKPMC ( http://ukpmc.ac.uk ) has undergone considerable development since its inception in 2007 and now includes both a UKPMC and PubMed search, as well as access to other records such as Agricola, Patents, and recent biomedical theses. UKPMC also differs from PubMed/PMC in that the full text and abstract information can be searched in an integrated manner from one input box. All of the articles in UKPMC are “Free Access,” Not all content available in PMC is made available to UKPMC.[ 31 ]

The University of lowa libraries

Links to few free full-text articles are available at the site http://www.lib.uiowa.edu/eresources/genindexes.asp .

National library of medicine gateway

National library of medicine (NLM) is a user-friendly web-based system that searches not only MEDLINE but also several other NLM databases at the same time.[ 19 ] Articles can be searched here on http://gateway.nlm.nih.gov/gw/Cmd .

Medical Matrix

Medical Matrix ( http://www.medmatrix.org ) is a comprehensive guide to clinical medicine resources on the Internet.[ 19 ] Medical Matrix links to more than ten MEDLINE sites, including Gateway and PubMed and fee and open access sites.[ 19 ]

World Health Organization

Publications from World Health Organizations can be searched at the site http://www.who.int/publications/en/ .

British Medical Journal Group

Some low income and low middle income countries are entitled to free access of this site.[ 32 ] For other countries, all the articles are not free. Journals can be searched here at site http://group.bmj.com/products/journals/ . This site includes Journal of Sexually Transmitted Infections.

British medical journal (BMJ) Open is an online-only, open access general medical journal, publishing medical research from all disciplines and therapeutic areas.[ 33 ] The journal publishes all research study types, from study protocols to phase I trials to meta-analyses.[ 33 ] Articles can be searched at http://bmjopen.bmj.com/ .

Elsevier Journals

Few journals published by Elsevier, provide free access to non subscribers, after a predefined period of time has elapsed following the final publication.[ 34 ] The list of journals can be seen on website http://www.elsevier.com/wps/find/authorsview.authors/delayedaccess .

Free full-text articles play a pivotal role in updating the knowledge of physicians and researchers. They play important role in preparation of any manuscript or thesis, for the persons who cannot subscribe to these articles due to any reason. Authors believe that these articles will be useful for such persons. Authors request the readers to contribute any other link for free full-text articles they know.

Source of Support: Nil

Conflict of Interest: None declared.

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Health and medical research websites

Open access database of scientific research, including on biology, disease, genetics and much more.

Republish this article

This work is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License .

by John Wihbey, The Journalist's Resource May 9, 2011

This <a target="_blank" href="https://journalistsresource.org/home/health-medical/">article</a> first appeared on <a target="_blank" href="https://journalistsresource.org">The Journalist's Resource</a> and is republished here under a Creative Commons license.<img src="https://journalistsresource.org/wp-content/uploads/2020/11/cropped-jr-favicon-150x150.png" style="width:1em;height:1em;margin-left:10px;">

The health category of Journalist’s Resource includes scholarly material on a wide variety of subjects. The studies are selected for their timeliness, authority and public-policy importance. The world of health and medical research is vast and constantly evolving as science advances, and some top journals such as the Journal of the American Medical Association (JAMA), The Lancet and The New England Journal of Medicine often make important news with each new article’s publication.

Among databases, the peer-reviewed Plos ONE stands out for its open-access policy. Databases such as SSRN and Google Scholar may also prove useful. When searching, try to find studies that are published in research-oriented journals, that come from universities or non-partisan research organizations, and that cite other studies published in journals.

Here are some other helpful places to look for more information:

• Center for Health Decision Science: Data Resources : Guide of freely available data sources for topics such as infectious diseases and health surveys.
• Community Health Status Indicators : Overview of key health indicators for local communities including more than 200 measures for each of 3,141 U.S. counties.
• PubMed : Citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher websites.
• Foundations of Public Health Policy : Initiative providing access to the manuscript collections of influential leaders in the field of public health and public health administration.
• Health, United States : An annual government report on trends in health statistics.
• Research: Harvard School of Public Health : List of research centers and research programs and projects. Many of the centers and programs link to full-text versions of their publications. Also, see the school’s Research Opinion Surveys .
• Global Health Observatory : The World Health Organization’s portal providing access to data and analyses for monitoring the global health situation.
• SourceOECD Health Data : Comprehensive source of comparable statistics on health and health care systems in OECD countries.
• WHO Statistical Information System (WHOSIS) : Interactive system that brings together more than 70 health indicators from each of the World Health Organization’s member states.
• Health System Profiles (European Observatory on Health Systems and Policies): Country-based reports on health systems and policy initiatives.

Site list courtesy of the Harvard Kennedy School Library .

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• NEWS FEATURE
• 02 April 2024

Long COVID still has no cure — so these patients are turning to research

• Rachel Fairbank 0

Rachel Fairbank is a freelance journalist in Houston, Texas.

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Lisa McCorkell co-founded a patient-led non-profit group to advise on research into long COVID. Credit: Marissa Leshnov for Nature

You have full access to this article via your institution.

When Lisa McCorkell got COVID-19 in March 2020, her symptoms were mild. Her physicians told her to isolate from others and that she would recover in a few weeks. But the weeks stretched into months and McCorkell, who was working on a master’s degree in public policy at the University of California, Berkeley, started having debilitating and bewildering symptoms: fatigue, dizziness and shortness of breath. Previously an avid runner, McCorkell found her heart racing from simple efforts.

She struggled to find an explanation, and soon realized that her physicians didn’t know any more about her condition than she did. To complicate matters, the limited availability of high-quality testing for the coronavirus SARS-CoV-2 in the early days of the pandemic left many of her doctors wondering whether her symptoms were really due to COVID-19 at all. “I didn’t have health-care providers that took me seriously,” McCorkell says. “That largely pushed me out of the health-care system.”

McCorkell turned instead to those who were experiencing the same puzzling symptoms and frustrations, joining a support group for people with what would eventually be called long COVID . As they compared notes, McCorkell and a handful of others — many of whom had research experience — realized that the information they were sharing might be helpful not only for those with long COVID, but also for those looking to study the condition. So, they founded a non-profit organization, called the Patient-Led Research Collaborative (PLRC), to design, provide advice on and even fund basic and clinical research into long COVID and other chronic illnesses.

Four years on: the career costs for scientists battling long COVID

A survey run by the group and published in 2021 catalogued the more than 200 symptoms experienced by people with the condition ( H. E. Davis et al. eClinicalMedicine 38 , 101019; 2021 ). It is seen by some as putting long COVID on the map . “They really jump-started the interest,” says Lucinda Bateman, a physician in Salt Lake City, Utah, who specializes in treating people who have long COVID and related conditions. “That was really a point from where more broad awareness arose.”

In the past few years, this study and similar patient-led efforts have helped to shape research programmes on long COVID and kick off some early clinical trials of therapies that might otherwise have gone unexplored. Many patient advocates see the efforts as crucial. They also think the results are more helpful for advancing the understanding of long COVID than the current findings from programmes funded by the US$1.15-billion RECOVER initiative led by the US National Institutes of Health (NIH). People with long COVID and their advocates have criticized the initiative for not always listening to the needs of people with long COVID.

Getting involved in research is challenging, given the symptoms of long COVID, but many patient advocates say they have no choice. “They’ve got you over a barrel,” says Margaret O’Hara, who coordinates patient involvement in research for a National Health Service hospital trust in England. O’Hara is on medical leave owing to long COVID. Referring to the research, she says: “You have to do it, because you are the one who is going to suffer for it if you don’t, but at the same time, you’re in bed sick.”

A plethora of symptoms

The PLRC’s survey of long COVID symptoms was the first major research study of the condition. The premise was simple enough: authors surveyed almost 3,800 people in 56 countries, many of whom were members of various long COVID support groups worldwide, including the network Body Politic, from which the PLRC originated. When the authors analysed the data, they found scores of symptoms in at least ten organ systems.

The study showed that the most prevalent problems were fatigue, post-exertional malaise — a worsening of symptoms after exertion — and the cognitive dysfunction that came to be referred to as brain fog . Nearly 86% of participants reported relapses triggered by exertion; 87% said fatigue was a main symptom; and 88% reported brain fog, with no differences in cognitive issues across age groups.

NIH launches trials for long COVID treatments: what scientists think

The paper has amassed more than 1,000 citations, been mentioned in some 60 policy statements and is widely considered a seminal paper in long COVID research, owing to its in-depth analysis. For McCorkell, however, its impact is more fundamental. “What we demonstrated with the survey is that patients can lead high-quality research, and that it’s really necessary in order to have the most comprehensive look at a condition.”

The achievement is especially notable considering that the study was conducted by unpaid volunteers, most of whom identify as disabled, and it received no financial support. By contrast, many long COVID research initiatives have tended to focus on a subset of symptoms, which comes with the risk of missing the bigger picture, says McCorkell.

“There’s a lot of complexity in these illnesses, and I think it’s really important to embrace these complexities,” says Beth Pollack, a research scientist at the Massachusetts Institute of Technology in Cambridge, whose work focuses on understanding long COVID and other infection-associated chronic illnesses. With conditions that have a range of symptoms, and for which there is only limited research, building a knowledge base starts by listening to patients’ stories and capturing the nuances of their conditions, Pollack says.

Desperate measures

In early 2020, Martha Eckey, a pharmacist in Minneapolis, Minnesota, developed a COVID-like illness. She experienced a crushing fatigue that no amount of sleep could relieve, and was bedbound for days at a time. The physicians she went to for help had no answers. In desperation, Eckey turned to the online community of people with long COVID.

She found people trying treatments from prescription medications to over-the-counter supplements. But the effectiveness of these was restricted largely to personal anecdotes.

In the hope of getting a more comprehensive, systematic understanding of what worked, Eckey designed a survey called TREAT ME, which asked people with long COVID and those with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), about their experiences, including whether they had tried any of a list of 150 medications and supplements. More than 4,000 people responded .

Martha Eckey’s TREAT ME survey found overlap between treatments people were using for long COVID and for other chronic conditions. Credit: John Karp

Eckey found overlap with other chronic conditions. Some treatments revealed by the survey as most effective for long COVID were drugs such as beta blockers and the heart-failure medication Corlanor (ivabradine). These are sometimes used to treat postural orthostatic tachycardia syndrome, a nervous-system disorder that can be triggered by COVID-19. Eckey also found that a number of individuals reported relief after taking naltrexone, a non-opioid drug for treating substance-use disorder. When taken at low doses, it has anti-inflammatory and pain-relieving properties.

Physiotherapist David Putrino, who specializes in rehabilitation and human performance at the Icahn School of Medicine at Mount Sinai in New York City, says that the TREAT ME survey captured something both simple and profoundly important. “It’s a very fundamental question of, ‘what are you taking that’s helping right now?’” he says. The results have helped to guide his research on long COVID.

Listening to patients

TREAT ME attracted the attention of scientists and research foundations, who soon realized that this information could help to shape their efforts. One was the Open Medicine Foundation, a non-profit organization in Agoura Hills, California, that studies infection-associated chronic illnesses such as long COVID and ME/CFS.

Linda Tannenbaum, a clinical laboratory scientist, founded the Open Medicine Foundation in 2012 in response to the difficulties she encountered while seeking a diagnosis and treatment for her daughter, who has ME/CFS. Its first double-blind, randomized, placebo-controlled clinical trial will explore low-dose naltrexone (LDN) and another drug, pyridostigmine, which is used to treat an autoimmune disorder that affects voluntary muscle movements. The medications will be tested separately and in combination. Tannenbaum credits TREAT ME for helping to shape which symptoms will be assessed during the trial.

“The reason we are doing LDN as our first trial is that patients asked for it,” she says. TREAT ME also showed that many people with long COVID said that LDN helped to reduce brain fog (see go.nature.com/3qy2tpj ). Given these results, the Open Medicine Foundation also incorporated parameters in the trial to test cognitive function. Both LDN and pyridostigmine have been used to treat long COVID, but as many patients report, physicians are often reluctant to prescribe these drugs because of a lack of formal, randomized, controlled trials showing their effectiveness. “Doctors are very hesitant to go outside approved, or at least medically tested, medications,” says Bateman. In her experience, insurance companies also won’t pay for these medications for people with ME/CFS and long COVID without strong evidence to support their use.

Many patient advocates say that there is insufficient clinical research on the kinds of drug that people are already using. In February, the RECOVER initiative received a further $515 million over the next 4 years to test more interventions and investigate the long-term effects of a SARS-CoV-2 infection. But so far, the only trials it has begun are of the antiviral medication Paxlovid (nirmatrelvir and ritonavir), which started enrolling patients in July 2023, and of ivabradine and intravenous immunoglobulin, which recruited its first participants last month.

Lauren Nichols, a long COVID patient advocate, helped to lead the Body Politic support group. Credit: Lauren Owens Lambert/Reuters

RECOVER had come under fire for its plan to test the effectiveness of a computer game for relieving brain fog , which critics say won’t meaningfully reduce symptoms, and for its decision to plan an exercise trial , given that many people with long COVID experience post-exertional malaise.

“There are a lot of clinical trials that are focused on more behavioural and on non-pharmaceutical interventions, and that is really not a priority to the patient community,” McCorkell says. “It is a misunderstanding of how severe the condition is, and how much of an impact on people’s quality of life it has taken.”

A spokesperson for RECOVER told Nature that the clinical trial of a computer game has already started enrolling participants and that the exercise trial is still scheduled to begin. They emphasized that these are accessible interventions, which might help some people who are affected, given the wide range of symptoms. They also said that moving these trials forwards will help in developing the framework for testing more treatments.

Lifting the fog

In the weeks after her initial COVID-19 infection, Hannah Davis found herself struggling with severe brain fog, to the point at which she could barely string two sentences together. Davis, who at the time was working as a data analyst and artist, with a particular focus on addressing biases in machine learning, kept waiting for her cognitive function to go back to normal, only for it never to return. “I had, and continue to have, terrible, terrible cognitive impairment,” says Davis, who is one of the co-founders of the PLRC.

Long COVID exercise trials proposed by NIH raise alarm

Brain fog is having a significant impact on people’s livelihoods, says Wes Ely, a physician-scientist who works in intensive care at Vanderbilt University Medical Center in Nashville, Tennessee. People with long COVID have a form of cognitive impairment that is often “like mild and moderate dementia”, he says.

Ely, who studies treatments for Alzheimer’s disease and related dementias, decided in 2020 to expand into studying the cognitive impairments associated with long COVID. He quickly recognized that the condition is deeply complex, with symptoms that go beyond cognitive impairment.

To gain a comprehensive understanding of the phenomenon, he turned to the patient community, eventually recruiting Davis and Jaime Seltzer, director of scientific and medical outreach at the non-profit organization ME Action in Santa Monica, California. Together, they drafted a clinical trial to test the medication baricitinib, an immunomodulatory drug that is used to treat rheumatoid arthritis and alopecia areata, and acute COVID-19 infections. “I wanted to learn from people who are living with this disease,” says Ely.

The trio, along with other US investigators, designed a 550-person clinical trial of baricitinib as a potential treatment for long COVID. The trial has now been funded by the NIH and will start enrolment later this year.

From Seltzer’s perspective, an effective collaboration between patients and scientists can help both sides equally, because it leads to more effective and targeted research. “We have the resources to help you do what you do even better,” Seltzer says. The lived experiences of patients can shape research priorities in several key ways, she says. These include finding the most efficient way to allocate limited funds on the basis of symptom burden; offering context on the prevalence and severity of symptoms; and identifying how the trial design can capture improvement most effectively. All of this can help lead to faster breakthroughs in treatments, which is of benefit to both patients and researchers, Seltzer says.

Microclot mystery

In late autumn 2022, McCorkell flew to New York City to participate in a trial being conducted by Putrino and his team. This study aimed to look for the presence of tiny blood clots, called microclots, in people with long COVID. It is thought that these cause symptoms such as fatigue and brain fog by impairing blood flow to the brain and body. There are still a lot of unknowns about microclots, including how many people with long COVID have them, how they form and whether the association is causal.

Long-COVID treatments: why the world is still waiting

McCorkell gave blood samples that were analysed using fluorescent microscopy, which confirmed she had microclots. McCorkell says it was “a wake-up call”. Until that point, she had been managing her symptoms mainly by avoiding overexertion. But the presence of the clots suggested to her that there might be active damage happening to her body. So, she started taking supplements that TREAT ME survey respondents reported as helpful.

Eckey’s results, which have not yet been published in a peer-reviewed journal, show that of 668 respondents with long COVID, between 40% and 70% found some symptom relief when taking the supplements nattokinase, serrapeptase or lumbrokinase, individually or in combination (see go.nature.com/43xgyoq ).

When Putrino saw these results, he decided it was crucial to conduct clinical trials of the supplements. He expects to begin a 120-person study on lumbrokinase in the coming months, and has involved patients at every step of its development.

“Every research trial that we run, we involve the patient community in the protocol,” Putrino says. This includes taking their advice on what trials should be prioritized, what symptoms to assess, how many clinic visits to require and what the testing environment should be like, to minimize the risk of exacerbating their symptoms, he says.

McCorkell says that the supplements she’s been taking have improved her general function by about 10%. Whereas that might not sound like much, she feels it is meaningful progress. Although the long COVID research has been difficult, she sees no other option but to stay involved. “We’re driven by desperation, out of improving our own quality of life.”

Nature 628 , 26-28 (2024)

doi: https://doi.org/10.1038/d41586-024-00901-3

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March 28, 2024 | Combined Reports - UConn Communications

Kevin Quezada ’24, College of Agriculture, Health & Natural Resources

Kevin Quezada reflects on his time at UConn

Kevin Quezada '24 poses for a photo outside Young Building on Feb. 29, 2024. (Sydney Herdle/UConn Photo)

For many people, college can at first be a daunting, even intimidating environment – but not for Kevin Quezada. “Don’t be afraid” was his mantra – to try new things, to take classes in unfamiliar subjects, to not know at first what field of study to pursue. And that “no fear” attitude has paid off: from UConn Stamford to UConn Storrs, Kevin developed a passion for the health care field, and after he collects his diploma in May, he plans to pursue it, with the ultimate goal of being an RN working in operating rooms. And the confidence he feels about attaining that goal is something he learned at UConn: if you’re passionate about something, “You will get there one way or another,” he says.

Why did you choose UConn?

The reason why I chose UConn was to experience a new place and go into a new environment that was different than what I was used to. I love UConn’s school spirit and the student life here. UConn also offers so many different opportunities for every student and their future career.

What’s your major or field of study, and what drew you to it?

My major is Allied Health Sciences. I wanted a degree where I had a chance to take most prerequisites for Nursing, but also, in case I wanted to move to a different career path, I would have a degree that would allow me to be able to have most of the classes I needed.

Did you have a favorite professor or class?

My favorite professor was Dr. Patricia Ryan when I was back at UConn Stamford. She taught PSYC 2300 and that was one of my favorite classes, because she was teaching in a way that I was not used to, but in a great way. It offered a new way to learn and experience teaching in a unique way. She would always bring in personal experiences when talking about psychology and how it is applied in a real-life setting. She was the one who made me love psychology, and her experiences in working in health care really made me want to join the health care field.

What activities were you involved in as a student?

I was involved in many clubs on campus. I was part of Tri-Alpha, Ecuadorian Student Association, and Music Lounge Club here at Storrs. I was also a regional student for my first two years at UConn, and in those two years at UConn Stamford, I was a part of Stamford Student Government, Huskies for Charities, and Gay Space Club. These clubs really kept me engaged and helped me meet a lot of people and later call my closest friends.

What’s one thing that surprised you about UConn?

One thing that surprised me about UConn was how available it is. There are multiple regional campuses that offer the same education and certain degree programs around the state. This school has some incredible school spirit and fun basketball games that I always recommend people to go to. I also was shocked when I realized that UConn has so many resources for students on campus that can help with classes, future careers, and to meet new people.

What are your plans after graduation/receiving your degree?

I plan to try to get into the UConn CEIN nursing program or any ABSN program and get my Bachelor of Science in Nursing. I then want to become a CRNA to work in the OR. I do want to also teach future Nursing students and bring joy in learning and helping nursing students.

How has UConn prepared you for the next chapter in life?

UConn’s vibrant campus community and diverse student body have exposed me to different perspectives and cultures, fostering a sense of inclusivity and adaptability. UConn’s robust alumni network and career services have provided me with valuable networking opportunities, mentorship, and guidance as I prepare to enter the workforce.

Any advice for incoming students?

Don’t be afraid to try new things. Don’t be afraid to not know what you want to do yet. I was unsure of where I wanted to work and what path to take. If it weren’t for my advisor and my research, I would have never figured it out. However, it is ok to not know what to do since this is the time to explore and try new things and investigate new careers that you never knew you could like. Prepare for the unexpected because you will learn a lot of things about yourself here. Also, get a planner and calendar to stay on top of your things because you will forget some things. One thing I always told myself after a bad grade is that a grade doesn’t determine your intelligence, and if you are passionate about a career, you will get there one way or another.

What’s one thing everyone should do during their time at UConn?

I believe you did not go to UConn if you did not go to a basketball game and see both the UConn men and UConn women play at Gampel Pavilion. I also believe you should try the Dairy Bar, since it is so good and something that is uniquely UConn.

What will always make you think of UConn?

The school spirit and how much fun it is to be at UConn games. I will probably also always think about my friends that I made here and connections since all of those are valuable things I will remember and take away. What will always make me remember UConn is the growth of a person that I had while being here. I’m going to remember how much UConn has changed my life.

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