ME/CFS Information

Carol Monaghan MP Secures Backbench Debate On ME On 24 January 2019

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  Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January. Thanks to everyone who has campaigned to achieve this.

The Best, Most, Biggest And Least Of 2018 In Chronic Fatigue Syndrome And Fibromyalgia

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  By Cort Johnson in Health Rising.   The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]

Changes In The Transcriptome Of Circulating Immune Cells Of A New Zealand Cohort With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Research

By Eiren Sweetman et al in Sage Journals.   Abstract. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group […]

Neuroinflammation And Cytokines In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review Of Research Methods

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By Michael B. VanElzakker, Sydney A. Brumfield and Paula S. Lara Mejia in Frontiers in Neurology.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the label given to a syndrome that can include long-term flu-like symptoms, profound fatigue, trouble concentrating, and autonomic problems, all of which worsen after exertion. It is unclear how many individuals with this diagnosis are […]

Neuroinflammation Review By #MEAction Research Fellows

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  By Jaime in #MEActionNet.   Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read this article on #MEAction’s Soundcloud here. We are pleased and proud to announce that our two research fellows, Sydney A. Brumfield and Paula S. Lara Mejia, have written and released their first […]

Riddle Of The Quiet Killer

Australia

  From The Sydney Morning Herald. Alison Hunter used to say she had lemonade in her legs and “shimlers” in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her. Vocabulary was still an issue when Alison died. […]

Where Is Bros Star Craig Logan now ? – (ME Story)

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    By Tom Eames in Smooth.   Craig Logan was one third of the biggest boyband of the late 1980s, Bros. But he soon quit the band, leaving Matt and Luke Goss as the sole members. But what has he been up to since? Craig began his career as a bassist in the pop band Bros. His nickname […]

Living Life ‘Light’ With ME

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LIVING LIFE ‘LIGHT’ WITH ME When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight Living […]

My Wife Isn’t Tired

ME

  By Paul James.   I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her.   I need however, to start with […]

Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller

    By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]

Not All Disabilities Are Visible……..

Invisible Illness

One of my favourite Christmas presents this year, a sticker for the car from my wife and daughter…… There is a need for a Government backed, nationwide TV and Radio educational campaign to raise awareness of Invisible Illnesses and Disabilities.    

Deconditioning Denied: Could A Large ME/CFS Study Put An End To The Deconditioning Myth ?

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  By Cort Johnson in Health Rising. The Deconditioned ME/CFS Patient? A huge (n=345) 1998 UK study set the stage. The smaller, less muscular hearts and carotid arteries found in ME/CFS made it clear – at least to those researchers – that both physical and cardiovascular deconditioning was present in ME/CFS. They recommended a graded exercise program to […]

Life With A Chronic Illness: The Unspoken Truths

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  By Lisa  Alloto in her Chronic Illness: Realistic Optimism Blog.   Life with any chronic illness is filled with unending challenges, whether its finding proper medical care, a way to afford it and your daily expenses, or maintaining employment.  On top of that, and most of all, you must deal with the chronic illness itself […]

Trial By Error: The New Interferon “CFS” Study

David Tuller

    By David Tuller, DrPH I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. […]

Community Roundup – End-Of-Year, 2018

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From #MEAction.   As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]

Tragedy In Bjärred – Increased Knowledge About ME Is Needed

Sweden

  From The National Association for ME patients.   In January 2018 a tragedy occurred in Bjärred, a family found deceased in its villa. Today, the police reported that parents chose to end their own and daughters lives and that both girls had been diagnosed with ME. RME deeply deplores the tragic development, our thoughts go […]

The Struggle To Gain Adequate Care While Living With Myalgic Encephalomyelitis (ME)

Disability

    By Corina Duyn in ME Advocates Ireland.   I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again […]

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

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  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

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  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

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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

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  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

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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

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  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 […]

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