GENERAL
Bell, David S. The Doctor’s Guide to Chronic Fatigue Syndrome. New York: Addison-Wesley Publishing Co., 1994.
Dr. Bell’s guide, although ostensibly pitched to doctors, is not technical. The material is presented in a clear format, is easy to read, and is well organized. The strongest parts of the book are the overview and description sections. Dr. Bell’s book is a very useful introduction to the disease.
Bell, David S. Cellular Hypoxia and Neuro-Immune Fatigue. WingSpan Press, 2007.
In this book, Dr. Bell theorizes that there is a spectrum of neuro-immune illnesses which produce cellular hypoxia (cellular starvation). These illnesses can be triggered by a variety of factors–viral, bacterial, environmental, or CNS trauma. No matter what the trigger, they all lead to a condition in which the body continues to produce inflammatory chemicals, notably nitric oxide. The end result is a hyper-aroused immune response that interferes with the cellular production of ATP, the body’s source of energy. There is a lot of research to support this theory (which has been explored more deeply at the molecular level by Dr. Pall). Dr. Bell, as always, writes in a clear style that is accessible to any reader.
Berne, Katrina H. Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS). Alameda, Calif.: Hunter House, 1992.
This is one of the classics in the ME/CFS literature. It contains information on testing, symptoms, resources, and a history of the illness, which together comprise the essential information every person with ME/CFS must know. It has recently been updated.
Bested, Alison, Russell Howe and Alan Logan. Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. Cumberland House (subsidiary of Sourcebooks, Inc.): 2008.
Hope and Help is a little book with a lot of practical advice. It contains information on the current theories concerning the cause of the illness, diagnosis, coping techniques, and treatment protocols.
Blake, Nancy. A Beginners’s Guide to ME/CFS. Lifelight Publishing. February 4, 2013.
This 112-page book offers encouragement, practical suggestions, and praise for carers. Blake takes a common sense approach toward the disease, strongly advising rest and the avoidance of exercise, which will only exacerbate symptoms.
Feiden, Karyn. Hope and Help for Chronic Fatigue Syndrome. New York: Simon & Schuster, 1990.
This is one of the better practical guides for coping with ME/CFS. It contains detailed and thoroughly researched information on the current theories concerning the cause of the illness, tests normally performed to help confirm a diagnosis, and standard treatment protocols. It concludes with an excellent resources section.
Goldstein, Jay A. Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.
and
Courmel, Katie. A Companion Volume to Dr. Jay A. Goldstein’s Betrayal by the Brain. Binghamton, N.Y.: Haworth Medical Press, 1996.
This book by Dr. Goldstein gives insights into the limbic system dysfunction that characterizes ME/CFS. Because it is geared to physicians, it is very technical. The companion guide by Katie Courmel provides the layperson with an easy-to-read interpretation of Dr. Goldstein’s work.
Heckenlively, Kent and Judy Mikovits. Plague: One Scientist’s Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases. New York: Skyhorse Publishing, 2014.
This is the dramatic story of the rise and fall of XMRV, the retrovirus which was thought to cause ME/CFS. Dr. Mikovits, a twenty-year veteran of the National Cancer Institute, was at the center of what was to become a political scandal. The book starts with the founding of the Whittemore-Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno, and ends with her as a witness for the federal government against her former employer, Harvey Whittemore, for illegal campaign contributions to Senate Majority Leader Harry Reid.
Hyde, Byron M, ed. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ottawa, Ontario: Nightingale Research Foundation, 1992.
The Cambridge Easter Symposium on ME/CFS held in Cambridge, England, in April 1990 forms the bulk of this book. Despite the fact that the 75 papers included in this volume represent research that is several years old, the information contained in them, and in the review chapters, is not outdated. Chapter topics include historical reviews of ME/CFS epidemics, ME/CFS in children, diagnosis, infectious origins of ME/CFS (viral research), skeletal muscle and heart involvement, neurologic injury, neuropsychological changes, food sensitivities, immunology, blood cell changes, and treatment. For anyone who wishes to explore the more technical aspects of ME/CFS, this book is a gold mine of information.
Read it for free HERE.
Johnson, Hillary. Osler’s Web, Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. New York: Crown Publishers, 1996.
In this thoroughly researched book, Johnson tells the inside story of the recent medical and political events surrounding the ME/CFS outbreaks of the 1980s.
Nathan, Neil, MD. Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness. Victory Belt Publishing (October 9, 2018)
This superb book by Dr. Neil Nathan is a must-read for anyone suffering from mold toxicity, Lyme disease, multiple chemical sensitivities, chronic environmental illness, fibromyalgia, or myalgic encephalomyelitis/chronic fatigue syndrome. These difficult-to-treat diseases, which are often ignored or dismissed by mainstream medical practitioners, present a challenge to any physician, but it is a challenge that Dr. Nathan meets with in-depth knowledge, compassion, and common sense.
ME/CFS A Path Back to Life: The Art of Micro Rehab. Steven Sommer; 1st edition (July 1, 2022)
In A Path Back to Life Dr. Steven Sommer brings together an effective ME/CFS treatment plan he calls Micro Rehab. Underpinning this is growing self-awareness (mindfulness) that can be applied to pacing and individualised Rehab sessions. This plan involves building a solid base by; garnering social support; maximising quality sleep; low GI nutrition; and an emphasis on mind-body strategies that he refers to as the ‘Rest/Activity Dance’ and ‘Defusing the Loop.’
Pall, Martin. Explaining “Unexplained Illnesses”: Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, Gulf War Syndrome and Others. New York: Harrington Park Press, trade division of Haworth Press, Inc, 2007.
This book lays out Martin Pall’s NO/ONOO‾ (“No! Oh, no!”) hypothesis in detail. The book is quite technical, which makes it tough going for the layperson. However, Pall has come up with a remarkable new paradigm for understanding multisystem diseases, which makes this book a valuable addition to any CFS/ME library. His section on treatments, and why they work for multisystem illnesses is important for everyone to read.
Richardson, John. Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies. NY: Haworth Press, 2001.
Dr. Richardson, a family physician in the U.K., treated more than 7000 patients (over a period of four decades) who had contracted enteroviral illnesses. Out of these, 1780 never fully recovered. Dr. Richardson kept careful notes on each and every one of these chronic cases, documenting the course of their illness, subsequent organ pathologies, and charting when and where the bulk of these cases originated (the late 1980s). His detailed case studies provide invaluable material for anyone hoping to understand the persistence and widespread effects of enteroviral infections.
Rosenbaum, Michael, and Susser, Murray. Solving the Puzzle of Chronic Fatigue Syndrome. Tacoma, Wash.: Life Sciences Press, 1992.
The authors offer a wide range of theories and ideas regarding ME/CFS. Dr. Susser and Dr. Rosenbaum view ME/CFS as a complex disorder, and in light of the fact that a single agent or pathogen has yet to be discovered, they suggest treating ME/CFS as a mixed-infection syndrome. The authors test their patients for parasites, yeast, bacteria, and viruses and investigate possible underlying medical conditions that may mimic or worsen ME/CFS (such as hypothyroidism, adrenal insufficiency, environmental illness, heavy metal poisoning, and allergies).
Shomon, Mary. Living Well With Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn’t Tell You . . . That You Need to Know. New York: HarperCollins, 2004.
This is a good, basic introduction to CFS/ME that covers a lot of ground without losing coherence. Written in an accessible style and well organized. Shomon’s book is probably the best place to start if you haven’t already done much reading on the subject.
Simpson, Leslie O. PhD, Nancy Blake BA CQSW. Ramsay’s Disease – Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of ‘CFS.’ Amazon, 2012.
In this book Dr. Simpson describes his years of research and the history of the disease. “The contribution of haemorrheology to the understanding of and potentially effective treatment for the symptoms of ME continues to be ignored by the medical profession, therefore unavailable to people who have ME. Oddly-shaped red blood cells (clearly visible in micrographs) can’t deliver oxygen through the microcirculation, causing dysfunction in muscles, cognitive areas of the brain, and the endocrine system. Fish oil, genuine EPO, Vitamin B12 as hydroxocobalamin, and pentoxyfilline have each been found to address this issue in a significant proportion of people with ME, very much improving their well-being.”
Vanderzalm, Lynn. Finding Strength in Weakness. Grand Rapids, Midi.: Zondervan, 1995.
Ms. Vanderzalm interviewed 70 people with CFS, and drew on her own experience as a mother of children with ME/CFS (and ill herself) to write this book about the impact of CFS on a family. Her avowedly Christian perspective may put some people off. However, since it is one of the few books concerning this topic, the information it contains should be useful to all who read it. The Foreword is written by David Bell, M.D. To order, contact the ME/CFS Association of America, PO Box 220398, Charlotte, NC 28222-0398 (286 pages; $11.00).
TREATMENT
Campbell, Bruce. Managing Chronic Fatigue Syndrome and Fibromyalgia.
A solution-oriented book filled with practical strategies for managing symptoms and improving quality of life. Includes step-by-step discussion of pacing. Also addresses treatment, managing stress, addressing feelings, improving relationships, learning self-management skills, and finding hope.
Haavisto, Maija. Reviving The Broken Marionette: Treatments For CFS/ME And Fibromyalgia. Lulu, 2011.
Reviving the Broken Marionette features:
* Over 250 pharmaceuticals that can be used to treat CFS/ME and fibromyalgia
* Possible side effects, contraindications and drug interactions
* International availability and price range of each medication
* Considerations for surgery and vaccinations
* Over 1,000 references
* A glossary and index
Myhill, Sarah. Diagnosing and treating Chronic Fatigue Syndrome: it’s mitochondria, not hypochondria. London: Hammersmith Health Books, 2014.
Dr. Myhill explains the importance of healthy mitochondria, how we can measure their functioning and what we can do to keep them healthy, or restore them to health if problems arise. Contents include: The clinical picture: symptoms; useful medical tests; tests not worth doing * Mitochondria and chronic fatigue syndrome * Treatment for mitochondrial metabolic dyslexia * Solid foundations for recovery and good health * Other important factors to look after * Toxic and viral causes of CFS * Practical details – where to start.
Teitelbaum, Jacob M.D. The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy! New York: Avery, 2013.
Dr. Teitelbaum presents strategies for using medications and nutritional supplements to the most recent alternative therapies and recommendations for lifestyle modifications. Dr. Teitelbaum is best known for the SHINE Protocol, addressing Sleep, Hormonal support, Infections, Nutritional support and Exercise.
Verrillo, Erica. Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Electronic Edition). 2012.
This book includes over 100 effective treatments, from antivirals to vitamins, as well as locations of specialists and clinics, Internet ordering information, and national, local, and international ME/CFS organizations. New and expanded sections include doctors’ protocols and research on the causes and mechanisms of the illness, all written in concise, easy-to-understand language. Every aspect of the illness is thoroughly examined, from diagnosis to an in-depth discussion of symptoms, from traditional to alternative therapies to essential coping strategies. The new edition contains chapters for those coping with multiple chemical sensitivities and dietary restrictions, as well an expanded section on children and adolescents with ME/CFS.
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Síndrome da Fadiga Crônica: Um Guia de Tratamento (Em Português)
Síndrome da Fadiga Crônica: Um Guia de Tratamento – agora completamente revisado e atualizado – inclui mais de 100 tratamentos eficazes, desde antivirais até vitaminas, bem como locais de especialistas e clínicas, informações para comprar pela Internet e organizações nacionais, locais e internacionais sobre a SFC/EM. Seções novas e ampliadas incluem protocolos e pesquisas de médicos sobre as causas e mecanismos da doença, todos escritos em linguagem concisa e fácil de entender.
Cada aspecto da doença é examinado detalhadamente, do diagnóstico a uma discussão profunda dos sintomas, de terapias tradicionais à alternativas até estratégias essenciais para lidar com a doença. A nova edição contém capítulos para pessoas lidando com sensibilidades a vários produtos químicos e restrições alimentares, bem como uma seção ampliada sobre crianças e adolescentes com a SFC/EM. Síndrome da Fadiga Crônica: Um Guia de Tratamento, segunda edição, ainda é o guia de referência mais completo sobre essa doença.
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Syndrome de fatigue chronique: guide de traitement, deuxième édition (en français)
Ce livre de référence unique – maintenant révisé et mis à jour – comprend plus de 100 différents traitements efficaces, en passant des antiviraux aux vitamines, ainsi que des emplacements de spécialistes et de cliniques, des informations sur la commande par Internet et des organisations du SFC/EM au niveau national, local et international. Des sections nouvelles et élargies comprennent des protocoles de traitements de divers médecins spécialistes et les diverses recherches sur les causes et les mécanismes de la maladie, tous écrits dans un language concis et facile de compréhension.
Tous les aspects de la maladie sont soigneusement examinés, en partant du diagnostic en allant à une discussion approfondie des symptômes et en passant par les thérapies traditionnelles aux thérapies alternatives et aux stratégies d’adaptation essentielles. La nouvelle édition contient des chapitres pour ceux qui font face à de multiples sensibilités chimiques et des restrictions alimentaires, ainsi qu’une section plus appronfondie portant sur les enfants et les adolescents atteints du SFC/EM. Le livre Syndrome de fatigue chronique: guide de traitement, deuxième édition, demeure le guide de référence le plus complet sur cette maladie complexe.
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Wilkinson, Steve. Chronic Fatigue Syndrome: A Natural Healing Guide. New York: Sterling Publishing Co., 1990.
This is one of the more detailed books on alternative treatments for ME/CFS. Wilkinson worked as an alternative health care practitioner in Great Britain and treated a number of patients for ME before he contracted the illness himself. The sections describing the benefits of acupuncture, aroma therapy, hypnosis, meditation, and dietary supplements, while brief, offer a good sampling of some of the alternative treatments considered useful for many ME/CFS symptoms.
PERSONAL ACCOUNTS
Fisher, Gregg Charles. Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS. Grand Central Publishing; Revised and Upd ed. edition, 1997.
This book is both a personal account of Gregg Fisher and his wife’s illness and a ME/CFS guide. He also has many helpful suggestions for dealing with the Social Security Administration, coping with the subjective fallout of having a major illness (emotional upset), and maintaining relationships with incredulous friends and acquaintances. The original book was revised and updated in 1997.
A Doctor’s Journey Back to Health. Steven Sommer; 1st edition (May 8, 2022)
From doctor to patient to doctor again, Dr Steven Sommer’s uplifting story is told alongside the story of Chronic Fatigue Syndrome (ME/CFS). Steven’s life and career was soaring with potential before it was derailed by ME/CFS. Steven and his partner, Tori, unveil the horrors of what it was like to have this disease as he shares his search for answers, a quest that culminates in a joyous turn-around.
Finding Hope: When Facing Serious Disease. Steven Sommer (February 19, 2017)
When he almost lost his life in 2012, holistic medical practitioner Dr. Steven Sommer, became inspired and determined to share his experience and knowledge before his life was done. The result is this, his first book, Finding Hope. In it, he shares his patients’ and his own personal journey exploring how to defy the odds with Meditation as medicine, Lifestyle as therapy, Mind-body weaving, Epigenetics, Complementary therapies, Humor that heals, Fecal transplantation, Judgement and enlightenment and Dying well.
Gilderdale, Kay. One Last Goodbye: Sometimes only a mother’s love can help end the pain. Ebury Press, 2011.
“Lynn Gilderdale was just 14 when she was struck down by ME, leaving her paralyzed and in constant agony. Over the next 17 years, she became desperate to escape her miserable existence, even begging her mother to help her die. So, one night, when Kay found Lynn attempting suicide, she was forced to make an impossible decision. Continue watching her child suffer or help her end the pain? Eventually, fighting her every instinct, Kay helped her precious daughter take a fatal overdose. But while Lynn was finally free, her mother faced a fresh agony—a possible lifetime behind bars. The highly controversial trial that followed opened a fierce public debate on assisted suicide. Is it murder or mercy? Here, in her heartbreaking story, Kay reveals the harrowing truth behind the headlines and the desperate lengths a mother will go to for the love of a child.”
Hill, Jamison. When Force Meets Fate: A Mission to Solve an Invisible Illness. Inkshares. January 26, 2021.
A memoir of a healthy young man who survives a fatal car crash only to be plagued by a mysterious illness that robs him of the ability to walk, talk, and eat solid food. When Force Meets Fate is a captivating, transcendent survival story that forces all of us to reckon with our mortality and the fragility of life.
Amazon Apple Target Barnes and Noble Google Play BooksAMillion Book Depository (ships worldwide for free), Indiebound BookShop
Canada: Amazon, Kobo, Chapters/Indigo
UK: Amazon
Australia: Booktopia
Mexico: Amazon
Germany: Amazon
Norway/Sweden: Book Depository, Adlibris
The audiobook is also available on all platforms, including Audible.
Kenny, Timothy. Living With Chronic Fatigue Syndrome: A Personal Story of the Struggle for Recovery. New York: Thunder’s Mouth Press, 1994.
This book documents Tim Kenny’s struggle with severe ME/CFS. Kenny, a journalist, wanted to share his own battle with ME/CFS to inspire others to keep up the fight. His essay on fatigue is particularly good.
Rehmeyer, Julie. Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand. Rodale Books, 2017.
Julie carved out her own path to wellness―and uncovered how shocking scientific neglect and misconduct had forced her and millions of others to go it alone. In this memoir, she describes how her illness transformed her understanding of science, medicine, and spirituality.
Recovery from Chronic Fatigue Syndrome: One Person’s Story by Bruce Campbell, PhD
“I share my story in the hope that others may find in it both encouragement and practical strategies. The story reflects my belief that how we live with chronic illness can change its effects and even its course.”
Available online as a free download HERE.
Tessa Brunton. Notes from a Sickbed. Lerner, 2022.
In 2009, Tessa Brunton experienced the first symptoms of myalgic encephalomyelitis (also known as chronic fatigue syndrome). She spent much of the next eight years unwell, in a medical holding pattern, housebound and often alone.
Chemical Insensitivity: How the Environment Cost Me My Life: My Struggle with Multiple Chemical Sensitivity. Sjmcs LLC, 2021
Multiple Chemical Sensitivity is a modern environmental illness that is difficult to live with, often misdiagnosed, and frustratingly misunderstood by many people. This book provides one woman’s detailed story of her inklings of illness, its relentless worsening, discovering the cause of her odd symptoms, and the realization of the changes and impact it would have on her life. It also provides a comparison of her experience with another woman’s long-term MCS, including the similarities and differences between them. This book includes some of the latest medical findings of the MCS condition, a description of the quirks of the illness and their medical explanations. Learn what can be expected during the course of the illness, numerous tips on how to live with it, and suggestions for others who wish to support you. “It was Sandy’s wish that any net proceeds from the sale of this book be donated to a charitable organization dedicated to research into MCS. It is our intent to honor her wishes.”
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Chronic Fatigue Syndrome: Living with the Unknown
Brian Voncannon is a US Army veteran (drill Sgt qualified), a retired SWAT officer, and he holds a doctor of Naturopathy degree (ND). This book describes his personal experience with CFIDS. It is the author’s hope that by sharing his experiences, other individuals will not feel alone in their battle with the unknown.
Lighting Up a Hidden World: CFS and ME by Valerie Free
Through artwork, poetry, story-telling, and meticulous research, Lighting Up a Hidden World: CFS and ME takes readers into the fascinating, yet frightening, landscape of ME/CFS. Author Valerie Free shares her personal experiences and delivers illuminating first-hand perspectives from patients, caregivers, journalists, and medical professionals from within the global community in short easy-to-read segments. These stories reveal the disgrace, controversy, and tragedy of worldwide neglect by political and health care systems, leaving ME/CFS research underfunded and millions of people marginalized, sick, and socially unsupported.
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A Conversation With Myself by Elizabeth Glixman
For Elizabeth, being diagnosed with CFS brought up intense feelings and questions about life. Then was a way to communicate her experience to herself and others.
Available online as a free ebook HERE.
Chronic Fatigue: The Forgotten Epidemic revived by LONG COVID
Chronic Fatigue is the authentic, fascinating and riveting account of the author’s journey in the ‘heart of darkness’ of modern medicine, the Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME). It describes how he discovered the pathogens that sustain CFS/ME in animals and humans, began to understand their connection, serendipitously found a cure, and is now using that knowledge to help people with Long Covid, the new embodiment of CFS/ME.
Available on Amazon and Barnes & Noble
Wilted Flowers: A Survivor’s Guide To Chronic Fatigue Syndrome by Roger Russell
“You have, or know someone with no energy? Do the symptoms and the variety of complaints confuse you? You are not alone, when I faced that situation there were more questions than answers. This book attempts to provide some common-sense suggestions and approaches. Life with Chronic Fatigue is possible, just not easy or convenient. Don’t expect a medical treatise on the diagnosis, it wasn’t written by a doctor. But do expect down to earth pointers, and definitions for the lay person. If you don’t want to be overwhelmed and still want enough to think over, this might be your book. A condition like this really is best explained by someone that has it.”
NOVELS
King, Roger. Love and Fatigue in America. Madison: University of Wisconsin Press, 2014.
“When an Englishman receives an invitation from an American university, he embraces it as a jubilant new beginning. Instead, on arrival, he is stricken with a persistent inability to stand up or think straight. Diagnosed with ME disease—also called chronic fatigue syndrome—he moves restlessly across his newly adopted country, searching for a love and a life suited to his new condition. Love and Fatigue in America briskly compresses an illness, a nation, and an era in a masterly blend of literary forms.”
Miller, Erin. Girl in a Wheelchair. tredition, December 10, 2019.
“Zoe’s life crashes down around her as she struggles to come to terms with her newly diagnosed illness. She feels as though she has lost everything, until her life begins to change after an encounter with a young, rich, but strangely troubled, Danish woman. A relaxing holiday suddenly spirals into a series of increasingly frightening events which test her fragile health and mental strength to the limit. Underlying everything, is Zoe’s dilemma over her possible psychic ‘gift’.”
CHILDREN’S BOOKS
Knox, Tamee. What Hat Today? Miriam Laundry Publishing, August 16, 2023.
“Astral’s mom has a chronic illness. Some days she feels tired and yucky. On those days, she wears her blue baseball hat. Other days, she feels energetic and playful. On those days, she wears hats with feathers.
Astral loves her mom no matter what, but when Astral’s birthday rolls around, Astral can’t help but wonder…
What hat today?
Will they wear feather hats and have a blast, or will Mom be stuck inside with the blue baseball hat, leaving Astral to celebrate alone?
What Hat Today? is the heartfelt story of a mother and daughter who share laughs, smiles, tears, and rest. It teaches readers that even difficult days can have special meaning, and that real love lasts always, forever, no matter what.”
LEAFLETS AND PAMPHLETS
Free Leaflet: The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS
This new and comprehensive leaflet should be of help to people in relation to the management of post-COVID fatigue and some aspects of post-COVID syndromes where they overlap with ME/CFS symptomatology.
94 free leaflets available on the ME Association website
For people affected by – or with an interest in – ME/CFS and Long Covid.
Reliable information on a full range of topics:
From Covid-19 – Long Covid
From ME/CFS – Comorbidities
From Benefits – Diagnosis
From Symptoms – Management
From Diet – Vitamins
Written by specialist advisers and topic experts.