ME Treatments And Therapies

Hull Mum: ‘Horror Illness Has Left My Body Feeling Like An 80-Year-Old’s – But No-One Believed Me’

Lost

  By Anna Riley in Hull Live. A Hull mum has spoken of her battle with a health condition people believed she did not have. Nicola Meekin, 39, from Hull, became ill nine years ago when she started suffering from a bad chest infection. But instead of getting better, her sickness worsened. To Mrs Meekin, it felt like […]

Which Painkiller ?

Painkillers

  From NHS Choices.   The type of medicines that you need to treat your pain depend on what type of pain you have. For pain associated with inflammation, such as back pain or headaches, paracetamol and anti-inflammatory painkillers work best. If the pain is caused by sensitive or damaged nerves, as is the case with shingles or sciatica, it’s usually treated with tablets that […]

Children With Chronic Fatigue Syndrome Often Wait More Than A Year For Diagnosis

Australia

  by Sasha Nimmo Researchers at the Murdoch Children’s Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before […]

ME Isn’t Just ‘Exercise Phobia’: it’s A Physical Illness

ME

By Tanya Marlow in The Spectator.   Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’? This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, […]

Beauty In The Dark

Anil

  From Anil van der Zee in Capture. Dance. Words.   For years I’d dreamed of backpacking through Europe, of seeing the Eiffel Tower and the Mona Lisa and the Roman Colosseum. This summer at the age of 28 I finally got to achieve that. But in the shadow of the monuments, many of the […]

SEID Is Killing ME

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  From ME Advocacy.   Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]

Chronic Fatigue Syndrome, ME/CFS

Research

    From Cornell Research.     A million or more people in the United States suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), but remarkably little is known about the cause of the disease, and effective therapies are lacking. ME/CFS is characterized by debilitating fatigue that is not relieved by […]

What Is ME ?

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  From #MEAction.   Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]

When Doctors Brush You Off Because They Don’t Know How To Treat You

Doctor

  By Saidee Wynn in The Mighty.   In the TV show “Golden Girls,” a two-part episode titled “Sick and Tired” depicts the character of Dorothy, played by Bea Arthur, approaching a doctor while out at a restaurant. This doctor had earlier dismissed her symptoms as being all in her head and sent her on […]

A Huge Step Forward For ME In The US

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    There’s been a huge step forward for ME in the US. Kaiser Permanente is the largest managed care organisation in the U.S. It’s a forward-thinking organisation with a great reputation – which has got everything wrong about ME/CFS – until now. This article explains how Kaiser Permanente are out to change the way […]

ME News In Brief – March 2019

Science

  From Science For ME.   News – events this coming week ME/CFS International Research Symposium 12th – 15th March, Australia. Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online. […]

Trial By Error: Who Has The School Study Documents ?

David Tuller

      By David Tuller, DrPH. Update (later on March 4): Because Royal United Hospitals Bath suggested that I “redirect” my request for documents back to Bristol University, that’s what I did. Earlier today, I sent an e-mail to Bristol’s director of legal services. Here’s what I wrote: As you likely remember, I have […]

It’s Time To Pay Attention To “Chronic Fatigue Syndrome”

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  By Diane O’Leary in BMJ Blogs. Professional and public debate about myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) has reached a new pitch.  A London Times article in August described the “acrimonious scientific row” that’s erupted in the UK now that the US Institute of Medicine, National Institutes of Health, and Centers for Disease Control insist that ME/CFS is not a psychosomatic […]

No. 1 Pacing Tip: How To Unlearn The “Completion Compulsion”

Pacing

    By Julie Holliday in ProHealth. There is nothing in our once healthy previous lives that can prepare us for what’s involved in getting good at pacing––at least in the way that the very limited energy of illnesses like ME/CFS, Fibromyalgia and Lyme disease demands. Pacing to someone healthy, might mean something like keeping […]

Trial By Error: Stupid Studies

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    By David Tuller, DrPH. Boy, it’s hard to keep up with all the stupid studies coming out! But that’s no reason not to take a look at a couple of them. (In both cases, I’m just making a few comments. Much more could be said about each of these studies. You can read […]

Why I Gave Up Trying To Be The ‘Good Patient’

Chronic

    By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]

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 […]

Chronic Fatigue Syndrome: ‘It Was Like A Switch Had Been Flipped. I Couldn’t Stand Ip’

Irish Times

  By Louise Ní Chríodáin in The Irish Times.   Aspiring dancer Rosa Devine was 16 when illness took her legs from under her. Bedridden, by what she came to know as chronic fatigue syndrome, comic books and art would become first a solace, and then the trajectory to a new future. “It was easier to […]

People With Rare Diseases Get ‘Unequal Treatment’ From ‘Inflexible’ NHS Drug Regulator, Warns Report Calling For System Reform

NHS

    By Vanessa Chalmers in The Daily Mail.   The NHS drug regulator has been branded ‘inflexible’ when it comes to approving medicines for rare diseases in a report calling for it to be reformed. The National Institute for Health and Care Excellence (NICE) gives guidance on how to improve health care, including advising on how […]

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 […]

Myalgic Encephalomyelitis – Unknown Cause. No Cure. New Hope.

ME 1

  By Lily Williams in ASBMBTODAY.   Lizzie Mooney is 12 years old. She is tall for her age with long blond hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings. Lizzie excels in reading and math. She spends time crafting and watches […]

My Label And Me: I’m Not Tired And Lazy, I Have ME

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  By James Wilson in The Metro. you’re just a bit tired,’ says my friend. ‘Just have another beer, you’ll be fine’. Yep, I am tired but probably not as they, or you, know and understand it. I can’t rest and get my energy back like you can and, as much as I’d like to, […]

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 Basics: A Guide To Learning, Sharing And Making A Difference In Chronic Fatigue Syndrome (ME/CFS)

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    By Cort Johnson in Health Rising.   Welcome to Health Rising. This page is designed to give you basic information on chronic fatigue syndrome (ME/CFS) and provide opportunities for you to learn about it, share your experiences, and participate in bringing about the end of this disease. It is focused on the U.S. […]

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 […]

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

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. […]

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