ME Research And Researchers

Part II: ME/CFS, Sepsis And Glycocalyx

Blood Cells

  From Syndrome A.   To recap from the previous blog post “Part I: Blood Flow in Sepsis & ME/CFS”, ME/CFS looks like a lot like sepsis and sepsis is an inflammatory illness of blood vessels. The blood vessel problems in sepsis interfere with oxygen delivery to cells. The particular kind of blood flow problem that you find in […]

Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Pt I – The Brainstem Series

Cort_Johnson

    By Cort Johnson in Health Rising.   Jeff had a typical ME/CFS onset: he was a young, healthy and active individual before being felled by a viral infection and a high temperature. The infection left him with headaches, dizziness, muscle weakness and pain, sound and light sensitivity, and a general sense of being […]

Allodynia: A Rare, Distinct Type Of Pain In Fibromyalgia And ME/CFS

Chronic Pain

    By Adrienne Dellwo in Very Well Health.   Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well. Other conditions associated with allodynia include neuropathy, postherpetic neuralgia (shingles), and migraines. Outside of these conditions, […]

Shock, Hypoxia & ME/CFS: Part I

Nervous system

From Syndrome A.   When I first got sick with ME/CFS, I was a teenager. I was quite baffled when I suddenly became too exhausted to make it to classes, stopped sleeping almost entirely and started sweating profusely. I sweat raindrops: huge drops of sweat rolled down my sides constantly. No antiperspirant was a match […]

Trial By Error: The Cost Of MUS

David Tuller

    By David Tuller, DrPH In January, I wrote about the problematic online training course developed by the Royal College of General Practitioners and touted by Steve Brine MP as addressing the “misconceptions” about ME (or CFS/ME, as the online course calls the illness). The lead author of the course was Carolyn Chew-Graham, a professor of general […]

Are Surgeons Missing The Major Differential Diagnosis That Is More Common Than Multiple Sclerosis And HIV combined ?

Doctor

        By Nina Muirhead in Royal College of Surgeons.   It’s a great feeling when we meet a new outpatient that we know how to manage surgically. Unfortunately, every surgical specialty experiences a subgroup of patients who present with symptoms that cannot be resolved by surgery. These symptoms may span immune, neurological […]

Enhancing Blood Volume In Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia

Blood Test

    From Health Rising.   “You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas.   The low blood volume finding in chronic […]

Chronic Fatigue Syndrome: Research: Written question – 221619

Parliament

  Q Asked by Mrs Sharon Hodgson (Washington and Sunderland West) on 14 Feb 2019. Department for Business, Energy and Industrial Strategy Chronic Fatigue Syndrome: Research 221619 To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how […]

The ‘Energy Bubble’ Analogy That Can Help Explain Pacing With A Chronic Illness

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    By Christina Baltais in The Mighty.   Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

Your Resource Center

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From the Open Medicine Foundation.   Navigating the challenging world of ME/CFS and similar chronic complex diseases can be overwhelming, isolating and confusing. We would like to help you identify resources for education, support, and assistance. (Each image and underlined item below links to the resource it describes. Click on the link to directly access […]

Chronic Fatigue Syndrome: Medical Treatments: Written question – 218214

Parliament

  Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]

The Power Of Listening

Doctor

      By Naomi Whittingham in A Life Hidden.   In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is […]

Masterswitch Discovered In Body’s Immune System

Scientist using a microscope

  From Science Daily.   University of ManchesterSummary:Scientists have discovered a critical part of the body’s immune system with potentially major implications for the treatment of some of the most devastating diseases affecting humans. The study could translate into treatments for autoimmune diseases including Cancer, Diabetes, Multiple Sclerosis and Crohn’s Disease within a few years. […]

Trial By Error: BMJ Amends Last Week’s PACE Article

David Tuller

    By David Tuller, DrPH.   Last Wednesday, the UK Health Research Authority released a letter reviewing its analysis of the PACE trial. Members and supporters of the GET/CBT ideological brigades have misrepresented the HRA letter as a vindication of the study. On Thursday, BMJ posted an article about the HRA letter by science journalist Nigel Hawkes. The […]

The Emerge Media And Research Digest (017) 8th February 2019

Australia

    Friday 8th February 2019 Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome   Welcome to the Seventeenth Emerge Australia Media and Research Digest!   To read the digest, click on the link below:     Link to ME Digest

Are Fluoroquinolones Causing Connective Tissue Disorders That Are Leading To ME/CFS ?

Research

    From Floxie Hope.   The symptoms of fluoroquinolone toxicity often mimic those of ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). Many people suffering from fluoroquinolone toxicity experience debilitating fatigue, and some are bed-bound and permanently disabled from this symptom, along with all the others that come along with fluoroquinolone toxicity. Both fluoroquinolone toxicity and ME/CFS […]

Guest Blog: Life In The Slow Lane – Musings Of A Police Officer On A Diagnosis Of ME/CFS

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  From Disabled Police Association.   Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS).   Police work feels inherently fast paced. It is in the nature of our work that […]

Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

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    By Cort Johnson in Health Rising.   Disturbances in circulation and provision of oxygen to tissues could underlie many symptoms of ME/CFS. Metabolomics has quickly become one of the hottest research trends in chronic fatigue syndrome (ME/CFS).  The metabolomic work in ME/CFS started with the Australians, picked up speed when Ron Davis and […]

The HRA Report Does Not Exonerate The PACE Trial, It Merely Confirms That Its Research Ethics Approval Was In Order

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  From Not The Science Bit.   Great news. The PACE Trial controversy has been resolved! Oh, wait…er, no it hasn’t. Rather, the spin cycle of eminence-based medicine continues. The UK’s Health Research Authority have released a report on their assessment of the beleaguered PACE Trial, and have concluded that they are happy with it. Cue the usual well-paid, eminent, professorial […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    by Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been […]

What About M.E.? Living With A Little Known And Widely Misunderstood Neurological Disease

ME

    By Lori, in Rare Disease Day.   What About M.E.? Living with a Little Known and Widely Misunderstood Neurological Disease Myalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been diagnosed with and that has changed my life forever. First, some words about the disease itself. […]

Homeless: How AMMES Is Keeping People With ME In Their Homes

Lonely

By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]

Trial By Error: A Recap Of The School Absence Study

David Tuller

  By David Tuller, DrPH Last week I broke the news that Bristol University is conducting an independent investigation of a number of studies that were exempted from ethical review on the grounds that they qualified as “service evaluation.” Because the issues involved are confusing and complex, I thought it would be helpful to repost here part […]

Mike’s EU Marathon Challenge

Mike Amsterdam

  By Mike Harley.   Running a marathon in each EU member country (28 currently) for Invest In ME (www.investinme.org) for biomedical research to treat and cure ME. Next up: #20 Paphos (Cyprus), 17/03/19   To read the rest of this story, click on the link below:   Link to Mike Harley’s story

My Experience With Rituximab For ME Sleep Studies, Disorders And Treatments with ME

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By cfssufferer in Living With Chronic Fatigue Syndrome.   In 2015 I detailed the best sleep aids for ME according to ME/CFS specialists and my own experiences. Since this date I have been on a rollercoaster journey in search of some much needed refreshing sleep. This article will cover my travails as well as what I have since learnt regarding […]

Trial By Error: A Bit More About Bristol’s Investigation

David Tuller

    By David Tuller, DrPH Yesterday I reported that Bristol University, at the request of the UK Health Research Authority, is investigating a number of studiesconducted by Professor Esther Crawley. The results of this investigation are expected in two months or so. Today I can disclose that the scrutiny involves papers linked to a specific research […]

Going Back in Time…

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    From Spoonseeker.com Blog.   When the ‘Guidelines for Commissioners of Services with Medically Unexplained Symptoms‘ document was first published a year or so ago, there were those in the Science for ME forum who were sceptical about whether the project was viable. Prof Jonathan Edwards commented: “I actually think this guidance will fall completely […]

New Research: Gene Variations In ME/CFS

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  By Rachel Black in Bateman Horne Center. In our December 2018 education meeting, we were pleased to hear from Dr. Alan Light, a Professor of Anesthesiology, Neurobiology, and Anatomy at the University of Utah. He has published more than 120 peer-reviewed articles, and has spent the last 10 years of his career focusing on the symptoms […]

Music4ME Album

Music4ME - Copy

  An album of original songs and poetry composed and performed by people with M.E. from all over the world, was released to mark and support ME Awareness Day, 12 May 2018. It was hoped that by releasing this album, it will help those with ME to know that they are not alone, and for […]

Huge ME/CFS Event Held In Boston

Conference

      By Rivka Solomon in ProHealth. Every now and then something happens in our global ME (Myalgic Encephalomyelitis) community that is both noteworthy and hopeful. Something that makes us believe things may actually change for the better. That’s what happened on January 15, 2019, in Boston, Massachusetts, a city known as a medical […]

The Effects Of Graded Exercise Therapy And Positive Thinking On A Young Girl With ME

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      By Adriane Tillman in #MEAction.   Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk […]

Trial By Error: Steve Brine’s Troubling Claim In Parliamentary Debate On ME

David Tuller

By David Tuller, DrPH During last Thursday’s historic debate on ME in the House of Commons, it was refreshing to watch one MP after another stand up and slam the PACE trial and the non-evidence-based treatment paradigm promoted for decades by the GET/CBT ideological brigades. It was also interesting to note that no one defended this egregious […]

What Causes Chronic Fatigue ? What We Know, Don’t Know And Suspect

Research Study

    By Mark Guthridge, Monash University, in The Conversation.    Around 200,000 people in Australia suffer from a debilitating illness often branded with the unfortunate name of chronic fatigue syndrome (CFS). I say “unfortunate” because this implies patients are simply tired, run-down, burnt-out or overly stressed. But myalgic encephalomyelitis, or ME/CFS as it is now more commonly called, […]

Prevalence Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) In Three Regions Of England: A Repeated Cross-Sectional Study In Primary Care

Research

    By Luis C Nacul et al in BMC Medicine.    Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of […]

Changing The Narrative #3: Due Process, Engagement And A Pathway (Magic Bullet Not Included)

Valerie Eliot-Smith

  By Valerie Eliot Smith. The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  ******************** Since I started publishing this series of posts, I have received mixed feedback. I’m grateful to those who have provided positive and constructive comments. There have also been some less helpful reactions […]

Parliamentary Debate on ME

Parliament

Am I the only one left a bit disappointed at the end of the ME debate in Parliament today  ?  Many impassioned speeches, which by their nature took a lot of time as they repeated much information given by previous speakers, but all well intentioned and good to see them representing their constituents. I then […]

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