ME/CFS Information

PACE Trial’s Findings Fundamentally Challenged By A New Study


    By Simon McGrath in ME/CFS Research Review.   In a nutshell: Analysing PACE the way the authors originally promised to do showed that CBT and GET didn’t do much to improve self-reported physical function and fatigue and did not lead to recovery. Even the very limited self-reported gains in this unblinded trial are […]

The York ME Community Coffee Club – Monday 5th Of February


  The York ME Community Coffee Club will be meeting at Bar Convent York on Mon 5 Feb at 11 am. The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand. Due to the nature of the illness, there will be times when numbers […]

ME/CFS, NLP And The Lightning Process™ In The Looking Glass


  By Nancy Blake in Positive Health Online.   The purpose of this article is to provide an explanation of the theoretical model and practical processes underlying both appropriate and inappropriate use of NLP in the treatment of patients with ME/CFS. The timing of this article has been influenced by recent publicity about a research […]

Scientist Spotlight: Suzanne Vernon, Ph.D.


  By JAXMECFS. The Jackson Laboratory.   We are excited to present our second “People in ME/CFS Research” spotlight this week, which is my interview with Dr. Suzanne Vernon. Suzanne is the Research Director of the Bateman Horne Center (BHC), which is also the clinical core for the JAX ME/CFS CRC. At BHC, she is building a […]

An Offer You Can’t Refuse

NICE logo

From the mrspoonseeker Blog.   In the previous post about the NICE Guidelines revision, it was reported that Prof Mark Baker of NICE had raised the issue of the right of patients to refuse treatment, in this case with CBT and GET in mind. Steve, who frequently contributes to this blog, left the following response in […]

Health Notes: Fatigue or Chronic Fatigue Syndrome ?

Chronic Pain

  By Alecia Humphreys in Ladue News.   You are officially one month into 2018. Maybe it’s the year you pledged to work out more, read more, travel more – do anything and everything more. While it’s great to have goals, it’s hard to implement more into an already hectic schedule, especially when you aren’t allowing yourself […]

We Are Death, Warmed Up

Severe ME

By Paul Tomkins at   It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts. […]

NEID Disease ? Study Suggests Neuro, Endocrine And Immune Systems Work Together To Produce ME/CFS


  By Cort Johnson in Simmaron Research.   Bruun Wyller continues to surprise. When last heard from this erstwhile cognitive behavioral therapy (CBT) proponent asserted that more research into Epstein-Barr virus in chronic fatigue syndrome (ME/CFS) was needed. Now he’s looking at the interaction between the immune and endocrine systems. Wyller begins his new study […]

The NICE Guidelines – Starting Again ?

NICE logo

From the mrspoonseeker blog.   There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that […]

How Disabled People Care For Each Other When Doctors Can’t


  By David M Perry in Pacific Standard.   In her new film Unrest, Jennifer Brea offers a groundbreaking look at the power of community where medicine falls short. When Jennifer Brea was 28 years old, she got sick and spiked a fever of 104.7 degrees. The fever went down, but soon she found herself […]

NIH Striving To Avoid False Hope In Chronic Fatigue

Scientist using a microscope

  By Joyce Frieden, in, MedPage Today   BETHESDA, Md. — The National Institutes of Health is trying hard to bring real hope — not false hope — to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director Francis Collins, MD, PhD, said during an exclusive interview with MedPage Today. “Five years ago … there was this big […]

Trial By Error: My Six-Month Review

David Tuller

  By David Tuller, DrPH.   This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what I’ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here […]

A Letter To Professor Mark Baker – Centre For Guidelines Director, National Institute For Health And Care Excellence


  From Invest in ME Research.   In July 2017 Invest in ME Research responded to the NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis. Recently, whilst preparing for the planned Stakeholders’ Workshop (16 January 2018) to review the NICE guidelines for ME it has, in our opinion, been necessary to make one […]

From International Traveler To 43 Square Meters: An ME/CFS Story From Sweden


  By Anne Ortegren in Health Rising (2014).   (Anne’s is a difficult story but it’s a good story in a way because it demonstrates the full force  of this illness. Anne’s story is reminiscent  of Jenn Brea, Jamison Hill and Mary Dimmock’s son’s stories. Each was a young adult with not just a good but perhaps an extraordinary life […]

Surveys On EHRC Inquiry Into Disabled Housing

Disability Rights UK

  From Disability Rights UK.   Imogen Blood and Associates has been contracted by the Equality and Human Rights Commission to review housing advice available for disabled people. As a result of this evaluation, they will create a toolkit which will aim to build upon valuable existing resources and cover any gaps identified during the […]

Linda Tannenbaum Worldwide Tour Talk

Open Medicine Foundation

  From The Open Medicine Foundation.   As a part of the 2017 End ME/CFS Worldwide Tour, Linda Tannenbaum, CEO/President, spoke in six European countries and seven U.S. cities. Each visit included a presentation, Q & A session, and personal meet and greet. On the tour, Linda had the honor of meeting hundreds of patients, parents […]

A Farewell – Anne’s Last Post To The ME Community


  From Health Rising.   This is a lengthy farewell blog from Anne who has been suffering with severe ME and burning skin for some years and who has decided that she is unable to continue with her courageous fight. It is a long and heart wrenching article that comprehensibly explains the severity of ME […]

Time for Unrest: Why patients With ME Are Demanding Justice

Jen Unrest

  By Nathalie Wright in The Independent.   “I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.” The film in question is Unrest, a documentary directed by and featuring Jennifer Brea, a former […]

Sheringham Film And Panel Event Exposes Hidden Struggle Of Patients Living With Chronic Fatigue

Norman Lamb MP

  By Eleanor Pringle in North Norfolk News.   The hidden struggles of life with Chronic Fatigue Syndrome (CFS) will be highlighted this month as the Sheringham Little Theatre and Norman Lamb back an inspiring North Norfolk organisation. The Sheringham CFS group is the only support group in North Norfolk which focuses specifically on the disease. Now, […]

Changing Lives While Living With Chronic Illness


  By Chris Goudreau in   Erica Verrillo of Whatley has written more than half a dozen books and launched a non-profit national organization, all while being partially bedridden for the past three decades. Verillo has Myalgic Encephalomyelitis (M.E.), a chronic and fluctuating neurological disease characterized by extreme exhaustion, muscle weakness, sensitivity to pain, confusion, forgetfulness, […]

Trial By Error: The School Absence Study, Revisited

David Tuller

  By David Tuller, DrPH.   This post is about a serious issue–ethical approval for research studies involving children. It is also about how powerful institutions, like leading medical journals, respond to concerns. But the story is really too long and complicated. I recommend it only for those following things pretty closely or who for […]

David Tuller And The (S)PACE Cake Eaters

David Tuller

    By Anil van der Zee.   In 2015 David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University started writing 3 very detailed blogs about the flaws of the now infamous PACE-trial. The patient community has been advocating for years, if […]

“Unrest” Aims For Awards Season Recognition

Jen Unrest

  By The Independent Critic.   Before we go any further, I must confess to you that prior to watching Jennifer Brea’s Sundance Film Festival award-winning documentary Unrest that I was, in fact, one of “those” people. What do I mean by “those” people? I was one of those people referenced in the film who, like many […]

Small Nerves – Big, Big Problem ? Drug Trial Points Finger At Autoimmunity In Fibromyalgia And ME/CFS


  By Cort Johnson in Health Rising.   Dr. Anne Oaklander MD, PhD, is making a difference – maybe a very big difference in the lives of many. Making a difference runs actually runs in her  family. Her mother, the neurologist Louise Rapin, was one of the seminal figures advancing the concept of autism spectrum disorder. […]

Myalgic Encephalomyelitis (ME) – Treatment Database


  From The American Myalgic Encephalomyelitis and  Chronic Fatigue Syndrome Society.   Although it is routine for doctors to prescribe drugs to help alleviate the symptoms of ME/CFS, patients may respond in unpredictable ways. Specialists report that it is common for ME/CFS patients to have paradoxical responses. For example, an anti-anxiety drug may produce anxiety. […]

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