ME/CFS Information

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

Chronic

  By Jennie Spotila, For the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

The Triumph of Eminence-Based Medicine

Research Study

  By Brian Hughes in Not The Science Bit.   Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]

A Continuing Saga Of Ineptitude

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From Invest In ME Research.   Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]

Chronic Fatigue Syndrome: Everything You Need To Know

Doctor

  By Dr Nick Knight in GQ.   For years this debilitating disorder was viewed with scepticism and doubt, but the GQ Doctor and most medical professionals now agree it is a real and serious condition. Dear GQ Doc, Is chronic fatigue syndrome the same as ME? David, via email. For years, chronic fatigue syndrome […]

OMF Conference – The Molecular Basis Of ME/CFS

Research

  From cfspatientadvocate.blogspot.com.   For years I have stayed at the Cardinal Hotel in Palo Alto. This is an old-fashioned California hotel. It has a large, high-ceilinged, tile-floor lobby with fireplace and chandeliers. There is no air-conditioning. Cooling is via ceiling fans, the old fashioned way. Early on the morning of the conference, Saturday September 29, […]

Sorry, Netflix: We Don’t Need Another Freak Show

Netflix

By Frances Ryan in The Guardian.   Afflicted has enraged its participants, but it wouldn’t be the first TV show to use people with disabilities as entertainment fodder. An open letter to Netflix was published on Tuesday criticising its recent docu-series, Afflicted, which chronicles the lives of seven people with chronic illnesses. The letter highlighted what it called the […]

A Wing, A Prayer And Vicky Whittemore: The NIH And Chronic Fatigue Syndrome In 2018

Cort_Johnson

    By Cort Johnson in Health Rising.   “I think some people are angry for good reason.  This disease hasn’t gotten enough attention.” Vicky Whittemore   My partner and I made our way to Vicky Whittemore’s office in a building off the NIH campus. Security was tight as always. We signed in and were […]

Flu Vaccination And M.E. (2018-19)

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By Dr Charles Shepherd – 12 September 2018   Seasonal flu (also known as influenza) is a highly infectious illness caused by several types of flu virus. It spreads rapidly through small infected droplets that are coughed or sneezed into the air by an infected person. Even people with mild or no symptoms can infect other people. […]

York Library To Stock ‘A Girl Behind Dark Glasses’, By Jessica Taylor-Bearman

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After a few attempts, we have persuaded York Library to stock  ‘A Girl Behind Dark Glasses’, By Jessica Taylor-Bearman.  It’s the story of her life with ME. I’m just awaiting the call to let me know that it’s in ! Book Description:  From a darkened world, bound by four walls, a young woman called Jessica tells the […]

Children And Families Need More Support Over Chronic Fatigue, Says ME Charity

childcare

  By Chris Ord  in The Oxford Post.   AN OXFORD mother has backed a charity’s calls for more support for children in the county suffering from the chronic fatigue condition ME. Iona Fabian from Aston has said doctors, schools and social services must be more informed over the condition which has affected her 20-year-old […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

CDC

    From CDC Centres for Disease Control and Prevention.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): CDC Releases Updated Website

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  From Outbreak News Today.   The Centers for Disease Control and Prevention (CDC) today released an updated website for healthcare providers about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The new site is designed specifically with clinicians in mind and offers information about how physicians can better assess and help their patients manage the illness. CDC’s new ME/CFS web […]

New Harvard Chronic Fatigue Syndrome (ME/CFS) Research Center Fulfills Crucial Need

Cort_Johnson

    By Cort Johnson in Health Rising.   In May the Open Medicine Foundation announced they’d committed a major chunk of change – $1.8 million –  to fund an ME/CFS Collaborative Research Center at Harvard Medical School affiliated hospitals. With the addition of the Harvard Center, chronic fatigue syndrome (ME/CFS) research centers are now found at two […]

A Morass Of MUS

DessertSpoons

From the Spoonseeker.com Blog.   As you are probably aware, here in the UK, NICE are currently engaged in the lengthy process of revising their guidelines for ME/CFS. The current guidelines recommend the use of GET (graded exercise therapy) and associated CBT (cognitive behavioural therapy), the latter being used in this case to persuade patients that GET is […]

‘Urgent Change’ Needed To Improve Lives Of ME Sufferers

STV

  From STV News.   (Although written prior to ME Awareness Day on 12 May, this article still has an important message.)   Scotland’s only nurse specialising in myalgic encephalomyelitis (ME) has called for urgent change to help improve the lives of at least 20,000 Scots affected by the condition. NHS Fife’s Keith Anderson said […]

Belle And Sebastian’s Stuart Murdoch To Join Campaigners Marking ME Awareness Day

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  By Catriona Webster in The Sunday Post.   BELLE and Sebastian frontman Stuart Murdoch will call on people to “make a noise” to help improve the lives of at least 20,000 Scots living with myalgic encephalomyelitis (ME). The lead singer of the indie band, who has lived with the condition most of his adult life, […]

Clifford’s Tower In York Turning Blue For M.E Awareness

Clifford's Tower York 9 May 2018

  The City of York is supporting ME awareness week, as a result of a recent Liberal Democrat motion to kick-start an awareness campaign on the issue. Over this week, York’s historic city walls and Clifford’s Tower will be lit up every night until the 13thMay to show support for The York ME Community, who […]

PACE Trial’s Findings Fundamentally Challenged By A New Study

Research

    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

Coffee

  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

NLP CBT

  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.

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  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

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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 paultomkins.com.   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

Cort_Johnson

  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 ?

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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

Caring

  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

invest

  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

Anne

  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

Anne

  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 […]

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