ME World Perspective

Trial By Error: Some Good News On Cochrane

David Tuller

  By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]

Australia’s Health Minister Listening To People With ME

Australia

    From ME Australia. by Sasha Nimmo Australia’s Health Minister, Greg Hunt, listened to people with Myalgic Encephalomyelitis (ME), families, scientists and organisations. Minister Hunt had a second meeting with ME Australia, along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, Emerge Australia on Thursday. ME Australia […]

This Life With Gracie: What Is Chronic Fatigue Syndrome ?

Chronic

  By Gracie Bonds Staples, The Atlanta Journal-Constitution. Chronic fatigue syndrome. For more than two decades, those three words have consumed Liz Burlingame because, well, words mean something. They convey feelings and connote action. They can comfort or cause pain. They can be our best friend or our worst enemy, failing us completely. That’s how Burlingame […]

Study Shows Red Blood Cells Less Deformable In ME Patients – Possible Biomarker

Blood Cells

Written by Ronald W. Davis, PhD in ME Action. This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new devices that will make a clear distinction between patients and healthy controls. These devices will be […]

Pinetree’s Chronic Fatigue Syndrome / M.E. CBD Oil Success Story

cbd-oil

From Health Rising. (Thanks to Pinetree for providing her success story and personal recommendations. This blog was written by her and edited by me (Cort)) A success story is always a remarkable thing to hear. Pinetree still has chronic fatigue syndrome (ME/CFS), she’s not ‘normal’ or cured, but a single treatment has made a remarkable […]

“The Abnormal Cardiac Index And Stroke Volume Index Changes During A Normal Tilt Table Test In ME/CFS Patients Compared To Healthy Volunteers, Are Not Related To Deconditioning”

Research Study

  By C.(Linda) M.C. van Campen, Frans C. Visser* et al of the Department of Cardiology,Stichting Cardiozorg, Planetenweg, Netherlands.   Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a chronic, and often disabling disease. The disease is multi-systemic, and is characterized amongst others by chronic fatigue/exhaustion, exercise intolerance, memory and concentration disorders, headache, multi-joint and muscle pain, unrefreshing sleep and […]

‘I Was In Denial And Ashamed By My CFS’

ME4

  By Simon Del Favero in SBS Insight.   When Simon realised that treatment options in Australia for his chronic fatigue syndrome were limited he looked overseas for answers. I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  (ME/CFS) in early 2011 after a severe bout of glandular fever. In the years prior to my diagnosis I was studying […]

GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates

220px-Cochrane_logo_stacked.svg

  By Cort Johnson in Health Rising. Our mission is to promote evidence-informed health decision-making by producing high-quality, relevant, accessible systematic reviews and other synthesized research evidence. Our work is internationally recognized as the benchmark for high-quality information about the effectiveness of health care. Cochrane  The Cochrane Reviews are the gold standard – highly respected and […]

Thiamine And Riboflavin For Chronic Fatigue

2-mitochondria

  By Chandler Marrs, PhD in Hormones Matter. From its title, Mitochondrial Myopathy in Follow-up of a Patient With Chronic Fatigue Syndrome, I doubt anyone would ascertain the importance of this case study, but a quick read of even just the abstract tells an entirely different story. A deeper dive into the full article reveals just how […]

96 Patients Prescribed Medical Cannabis

Medical-Marijuana

by Denise Grech in Times of Malta. Ninety-six patients have been prescribed medical cannabis since the law was amended in March this year, Superintendent of Public Health Charmaine Gauci said. The 96 patients were under the care of 14 doctors, she said, adding the superintendence was also following the cases closely. Many of these patients suffered from fibromyalgia, […]

Brain Science On Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

brain-power

  Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease characterized by chronic, profound, disabling, and unexplained fatigue. A variety of studies have been performed to establish objective biomarkers of the disease, including positron emission tomography (PET) molecular imaging and neuro-functional imaging using magnetic resonance imaging (MRI) and magnetoencephalogram (MEG). In this chapter, we summarize […]

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 […]

Trial By Error: Some Thoughts About NICE

David Tuller

  By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]

This Is Personal: BHC’s Patient-First Perspective

Bateman Horne Center

  By Rachel Black in The Batema Horne Center.   Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]

The Gut Microbiota At The Intersection Of Diet And Human Health

Gut

  By Christopher L. Gentile, Tiffany L. Weir et al in Science.   Abstract Diet affects multiple facets of human health and is inextricably linked to chronic metabolic conditions such as obesity, type 2 diabetes, and cardiovascular disease. Dietary nutrients are essential not only for human health but also for the health and survival of the trillions […]

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 […]

Trial By Error: An Australian Exchange With Professor Sharpe

David Tuller

  By David Tuller, DrPH. Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as […]

Are “Old” Muscles Holding People With Chronic Fatigue Syndrome (ME/CFS) Down? Plus Tompkins’ Team Promises New Insights

Cort_Johnson

      By Cort Johnson in Health Rising.   “New data collectively supports the presence of specific critical points in the muscle that are affected by free radicals.” Fulle et. al. A group of pioneering Italian researchers have been studying the muscles of people with ME/CFS – a rather lonely task – for over 15 […]

Trial By Error: Yet Another Letter About The Lightning Process Study

David Tuller

  By David Tuller, DrPH.   This morning I sent the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director of BMJ. I cc-d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. ********** Dear Dr. Godlee— More than a dozen years ago, a group of leading medical journals agreed that […]

Humans of ME/CFS – Camille C.

ME !

  From Solve ME/CFS Initiative.   I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]

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 […]

On Autism & Chronic Fatigue Syndrome

Educating-Children-Teens-with-CFS

From Syndrome A.   When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]

Exposing The Deception: SEID Is Not ME!

ME

  By Gabby Klein in Relating to ME.   My thanks to advocate Eileen Holderman for her consultation on this blog post The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs […]

The illness People Can’t See: Living With Chronic Fatigue Syndrome

Lost

  By Hannah Gibson in The Spinoff.   What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine. When […]

Millions Suffer From An Invisible Disease: My ME/CFS Story

Ryan Prior

  By Ryan Prior in CNN Health.   yan Prior visited 16 doctors with various specialties to identify his illness. Ryan Prior is a cross-platform associate producer at CNN. He has suffered from chronic fatigue syndrome for 11 years. The views expressed in this article are solely his. Atlanta (CNN)Every morning, I shave, brush my […]

ME/CFS, Naviaux’s Cell Danger Response And A Nervous System Under Threat

Nervous system

    By Veronique Mead M.D. in Health Rising.   Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]

Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review

220px-Cochrane_logo_stacked.svg

  By Mark Vink and Alexandra Vink-Niese in Health Psychology Open.   Abstract The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective. Because of the failure to report harms adequately in the trials covered by the review, it cannot […]

Does The Microbiome And Virome Contribute To Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ?

Microbiome

  By Fiona Newberry, Shen-Yuan Hsieh, […], and Simon R. Carding in  www.ncbi.nlm.nih.gov. Additional article information Abstract Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) (ME/CFS) is a disabling and debilitating disease of unknown aetiology. It is a heterogeneous disease characterized by various inflammatory, immune, viral, neurological and endocrine symptoms. Several microbiome studies have described alterations in the […]

Forty-One International Scientists Have Signed A Declaration Supporting Cochrane’s Decision To Withdraw Its Controversial Review Of Exercise Therapy In ME/CFS

220px-Cochrane_logo_stacked.svg

  From Not The Science Bit.   And I’m one of them. This is important not least because of claims appearing over the weekend that Cochrane pulled its controversial review due to pressure from brain-addled trouble-making “patient activitists,” rather than for scientific reasons. Claims that Cochrane had been harassed were made not by Cochrane themselves, but, […]

A Statement In Support Of Cochrane

220px-Cochrane_logo_stacked.svg

  From the Virology Blog. Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as […]

Could The Brain’s Mast Cells Be Causing Chronic Fatigue Syndrome (ME/CFS) ?

Simmaron

By Cort Johnson in Simmaron Research.   We propose that stimulation of hypothalamic mast cells by environmental neuroimmune pathogenic and stress triggers activates microglia leading to focal inflammation in the brain and disturbed homeostasis.” Theoharides et. al., 2018 Dr. Theoharis Theoharides is an MD and PhD who has published almost 400 papers. A pioneer in […]

The Differences Between Temporary And Chronic Pain

Chronic Pain

By Krista Germanis in The Mighty. Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling, but many people have never dealt with before, is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet […]

‘Insight’ On Chronic Fatigue Syndrome: Andrew’s Experience

ME10

From ME News Australia.   Andrew Bretherton was working as a personal trainer, kung fu and basketball coach and finishing a psychology and sports science degree when he became ill. He is now mostly housebound due to ME. He tried graded exercise therapy at a Melbourne clinic where he was blamed for his illness, told […]

The Metabolic Trap Shines During The Symposium On The Molecular Basis Of ME/CFS At Stanford

Cort_Johnson

By Cort Johnson in Health Rising.   If we ask Nature a question and ask it well, Nature answers. Most of the time the answer refutes our hypothesis. This time, Nature didn’t refute the hypothesis. Robert Phair Ron Davis mentioned one of chronic fatigue syndrome’s aces in the hole several times – the chance to […]

The York ME Community © 2015
Powered by Live Score & Live Score App