ME Treatments And Therapies

Is It Just ME Or Is This A Real Disease ?

Lost

  By George Winter in The Medical Independent. George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME). In 1926, TS Eliot, then editor of The Criterion, published Virginia Woolf’s essay On Being Ill, where she bemoans the “poverty of language” with which to describe illness: “Let a sufferer try to describe a pain in his […]

Trial By Error: Another Letter to NICE’s Sir Andrew Dillon

David Tuller

  By David Tuller.   First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]

The Ambiguous Term “ME/CFS”: Why ME And CFS Cannot Be Combined

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    By Jerrold Spinhirne on his Facebook Page.   Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality, however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research […]

Can Positivity Cure Any Disease ?

Anil

    By Anil van der Zee, in his Capture, Dance, Words Blog.   As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark […]

How Physical Therapists Are Getting It About Chronic Fatigue Syndrome (ME/CFS)

Cort_Johnson

    By Cort Johnson in health Rising.   Immunologists aren’t interested. Neurologists, in general, are to be avoided. Endocrinologists can’t be bothered. Except for primary care physicians specializing in chronic fatigue syndrome (ME/CFS), the outlook in the medical field for ME/CFS patients is pretty bleak. If a chronic fatigue syndrome (ME/CFS) patient doesn’t encounter […]

WATCH: Schoolgirl’s Illness Message Goes Viral

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  From Pirate FM News.   A video by a 10-year-old schoolgirl girl who has been battling an illness for seven years is going viral. Shannon Tiday, from Plymouth, has M.E. – Myalgic Encephalomyelitis. It is a chronic condition which sees her suffer from things like vomiting, extreme fatigue and crushing headaches. But now she […]

Pacing By Numbers: Using Your Heart Rate To Stay Inside The Energy Envelope

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    By Bruce Campbell in CFIDS & Fibromyalgia Self Help. If you have CFS, you are probably familiar with post-exertional malaise, the severe fatigue that results from doing too much. You can avoid or at least reduce malaise by staying within your limits or energy envelope. This article describes a strategy for staying within one […]

Precise.ly Chosen As Patient-Tracking Platform In ME/CFS Study

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By Linda Avey in prweb.   Precise.ly, Inc. has been selected to be the patient portal in a $40 million, five-year NIH-funded, multi-center study focused on the study of chronic fatigue syndrome (ME/CFS). It represents the first major research support for a condition that affects millions of Americans.   SAN FRANCISCO, (CALIF.) (PRWEB) OCTOBER 09, 2017 […]

Ian Lipkin & Simmaron To Collaborate In New NIH ME/CFS Research Center

Dr Ian Lipkin

  By Cort Johnson and Courtney Miller in Simmaron Research. (Dr Ian Lipkin pictured) “These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” Dr. Francis S. Collins, Director of the NIH Simmaron […]

RituxME

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    From Helse Bergen.   ​RituxME is a multicentre study conducted in five study centres in Norway: the Oncology Department at Haukeland University Hospital, the ME/CFS Centre at Oslo University Hospital (Aker), the Dept of Medicine at Notodden Hospital, the Dept. of Pain and Complex Disorders at St. Olav’s Hospital in Trondheim, and the […]

The SMILE Trial Lightning Process For Children With CFS: Results Too Good To Be True ?

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    A guest post by Dr. Keith Geraghty Honorary Research Fellow at the University of Manchester, Centre for Primary Care, Division of Population Health and Health Services Research in James C Coyne’s website, Coyne of the Realm.   The Advertising Standards Authority previously ruled that the Lightning Process (LP) should not be advertised as […]

Too Fatigued To Do Anything – Director Jennifer Brea Exposes The Personal Pain Of A Rare Disorder In The Doc ‘Unrest.’

Jen Unrest

  By Amy Kaufman   Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. At age 28, she was already an accomplished academic, a graduate of Princeton who’d moved to Massachusetts to delve into the world of political economy and statistics. But in the midst of her studies, […]

The Ambiguous Term “ME/CFS”: Why ME And CFS Cannot Be Combined

ME

    By Jerrold Spinhirne.   Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality, however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research of the neurological disease […]

Trial By Error: NIH Grants $2.1 Million To UK Biobank !

David Tuller

  By David Tuller, DrPH   The National Institutes of Health is making a $2.1 million grant to the UK ME/CFS Biobank–a huge endorsement of this important project run by CureME and housed at the London School of Hygiene and Tropical Medicine. Here’s what the ME Association wrote on its website: “The funding represents the biggest ever single […]

For Patients With CFS, Going To The Bathroom Is Similar To Running A Marathon.

Chronic

    By: Ellen de Visser.   Patient and doctor Mark Vink about Chronic Fatigue Syndrome. Having so little energy that you can only leave your bed twice a day: that’s what CFS can be like. Researchers suggest it’s a mental disease. Nonsense, says doctor and CFS-patient Mark Vink. Mark Vink’s whole world consists of […]

For People With Chronic Fatigue Syndrome, More Exercise Isn’t Better

Exercise

  By Michaeleen Doucleff in npr.org. Health organizations are emphasizing that myalgic encephalomyelitis/chronic fatigue syndrome is a serious long-term illness, not a psychological disorder, and that standard forms of exercise do not help. Instead, they’re acknowledging that exercise can make the disease much worse unless doctors and patients are very careful. The Centers for Disease Control and […]

Science Media Centre Concedes Negative Reaction From Scientific Community To Coverage Of Esther Crawley’s SMILE Trial

Coyne

  By James C Coyne.   Those of us who are accustomed to the Science Media Centre UK (SMC) highly slanted coverage of select topics  can detect a familiar defensive, yet self-congratulatory tone to an editorial put out by the SMC in reaction to its broad coverage of Esther Crawley’s SMILE trial of the quack treatment, Phil Parker’s […]

Hurricane Maria’s Next Victims May Be U.S. Patients Who Rely On Drugs Manufactured In Puerto Rico

Painkillers

    By DocDawg in Daily Kos.   Puerto Rico’s single largest and most important export isn’t rum or sugar cane. It’s pharmaceuticals — the prescription drugs we all count on being there when we need them. Spurred by a favorable U.S. tax code provision, the 1970s witnessed nearly all of America’s largest pharmaceutical companies investing billions of dollars […]

Stanford Medicine X Ignite Talk

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    By Ryan Prior in rtprior.com.   Below is the text of a speech I delivered on the main stage of Stanford Medicine X on September 16, 2017. Giving the speech was a highlight of 2017, and I used the occasion to talk personally about my disease and how it affects my outlook on […]

Leaky Gut: What Is It, And What Does It Mean For You ?

Gut

    By Marcelo Campos, MD  in Harvard Health Publishing.   Before the medical community had better understanding of the mechanisms that cause disease, doctors believed certain ailments could originate from imbalances in the stomach. This was called hypochondriasis. (In Ancient Greek, hypochondrium refers to the upper part of the abdomen, the region between the breastbone and the navel.) […]

Three NIH Funded ME/CFS Research Centers….And (What Else ?) A Controversy

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  By Cort Johnson in Health Rising.   Almost two years after Dr. Collins announced that the NIH would reinvigorate ME/CFS, the NIH has finally provided funding for three research centers and one data center. Earlier this year the ME/CFS research community surprised by submitting no less than 10 applications, including one from a research […]

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