ME Treatments And Therapies

Post Seventeen – The PACE Trial Scandal

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    From the Blog, puffins&penguins&me   I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]

Exercise Tests Suggest Autoimmunity Causes The Exertion Problems In Chronic Fatigue Syndrome, Fibromyalgia And POTS

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  By Cort Johnson in Health Rising.   Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom,  a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary.  When Systrom was given control of a clinical cardiopulmonary […]

Why Are Doctors And Patients Still At War Over M.E.? How The Best Treatment For The Debilitating Condition Is One Of The Most Bitterly Contested Areas In Medicine

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  By Jerome Burne For The Daily Mail.   Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

David Tuller

  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

The Loneliness Of Having An Illness Science Doesn’t Understand

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  By Lily Carollo in Science of Us.   If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn’t tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it’s meant to convey. While exhaustion is indeed […]

Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) Is Inflammatory Disorder

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  By Cort Johnson in Simmaron Research.   There’s been a great deal of controversy and confusion surrounding ME/CFS — even whether it is an actual disease. Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.” Mark Davis There’s nothing like a high-profile study from a […]

NICE Refuse To Take Down Harmful Treatments 25,000 Children Harmed ?

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  By Tina Rodwell.   I had my reply from NICE. For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid […]

A Plea From A Fallen Doctor On Chronic Fatigue Syndrome (ME/CFS)

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  From Reddit.   I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits. I am now completely bedridden from post […]

Metabolic Switch May Bring On Chronic Fatigue Syndrome

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  By Andy Coghlan in New Scientist. It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent […]

This Is Why I Quit Exercise Therapy

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  By Camilla Maxted in BuzzFeed.   It took 11 medical appointments across 20 weeks of pain and despair before I finally got a diagnosis. For months, I’d been suffering from exhaustion so extreme that bit by bit, I’d had to let my whole life drop away. For a long time I tried to ignore it – after all, […]

Body Count: The Tragic Stories Of Severe ME – Commemorating Severe ME Day On August 8

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  By Russell Logan in SHOUTABOUTME.   “…the opposite of life is not death, it’s indifference” — Elie Wiesel They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge. The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) after a single symptom ‘fatigue’ to deliberately […]

The European ME/CFS Biomarker Landscape Project: An Initiative Of The European Network EUROMENE

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  From The Journal of Translational Medicine.   Authors and Contributors as listed in article. Abstract Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a common and severe disease with a considerable social and economic impact. So far, the etiology is not known, and neither a diagnostic marker nor licensed treatments are available yet. The EUROMENE […]

A New Clue Is Helping To Solve The Mystery Behind Chronic Fatigue Syndrome

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  By Leah Rosenbaum in Seeker.   A recent study shows that cytokines are elevated in patients with severe chronic fatigue syndrome, potentially paving the way for a more definitive test and cure. Almost everyone feels sleepy in the morning without their first cup of coffee. But there’s a big difference between “I need caffeine” fatigue […]

Angry Scientists Throw Insults At Each Other Over The Results Of A £5 Million Taxpayer-Funded Study Into Chronic Fatigue Syndrome

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    By Stephen Matthews in Mail Online.   Angry scientists are throwing cheap insults at each other regarding the ‘flawed’ results of a landmark £5 million British study on chronic fatigue syndrome. One medical journal dedicated its entire August edition to ripping apart the ‘unreliable’ trial, which was funded by taxpayers. In response, three […]

Researchers Identify Biomarkers Associated With Chronic Fatigue Syndrome Severity

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  From Stanford Medicine.   Researchers at the Stanford University School of Medicine have linked chronic fatigue syndrome to variations in 17 immune-system signalling proteins, or cytokines, whose concentrations in the blood correlate with the disease’s severity. The findings provide evidence that inflammation is a powerful driver of this mysterious condition, whose underpinnings have eluded researchers for […]

Trial by Error: NICE Rejects My FOI Request

David Tuller

  By David Tuller, DrPH in Virology Blog.   The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since […]

More Clues Link Immune System Imbalance With Chronic Fatigue Syndrome

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  By Giorgia Guglielmi in Science.   After a 5-month road trip across Asia in 2010, 22-year-old college graduate Matthew Lazell-Fairman started feeling constantly tired, his muscles sore and head aching. A doctor recommended getting a gym membership, but after the first training session, Lazell-Fairman’s body crashed: He was so exhausted he couldn’t go to work as […]

NICE Guidelines Consultation – Misinformed Or Cynical ?

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  From Invest in ME Research.   The NICE decision “to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis” at this time seems to be an error of judgement based on misinformation. That is clearly so. Yet on delving deeper one begins to see something more from what must have been a pre-determined decision made […]

The Making Of The PACE Scandal

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    From Centre for Welfare Reform.   A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of the Journal of Health Psychology to the literature concerning interventions to manage chronic  health problems. The […]

CDC Removes Reference To Disputed ME/CFS Therapies From Website

David Tuller

  By David Tuller in Undark.   The agency has long recommended two controversial treatments for chronic fatigue syndrome. Earlier this month, it quietly made some changes.   For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome: a program of […]

Neuro(logist) – M.E. Militant

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    By Anil van der Zee.   The other day Dr. Jim Faas, insurance physician, lawyer, former President of the Association of Insurance Physicians (NVVG) and Senior Staff Officer at the Dutch unemployment office (UWV bezwaar en beroep), wrote a blog in the biggest Dutch medical news website Medisch Contact about the current situation […]

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