Invisible / Chronic Illness

APPGs Should Collaborate On ME And Long Covid

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  From #MEAction UK.   #MEAction UK has written to the chairs of the Coronavirus All Party Parliamentary Group (APPG) and the Myalgic Encephalomyelitis APPG requesting they collaborate. We have highlighted 3 specific areas of overlap that could benefit from a collaborative approach: Graded exercise, post-exertional malaise and NICE guidelines Misleading and potentially dangerous advice […]

All In Your Head ? Brain Research In ME/CFS

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  From ME Research UK. Following last week’s introduction to the brain, here is an overview of some of the brain research conducted in ME/CFS in recent years, and how it has helped us understand more about the illness. The World Health Organisation has classified ME/CFS as a neurological disease, and brain inflammation has long […]

Say What ? Attention Deficits Highlight Why Fibromyalgia (And ME/CFS) Are Such Different Diseases

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By Cort Johnson in Health Rising.   How fibromyalgia, chronic fatigue syndrome and allied diseases are so different from diseases like rheumatoid arthritis. Fibro-fog, brain-fog, chemo-fog… It can get pretty dim out there if you have fibromyalgia (FM), chronic fatigue syndrome (ME/CFS) and environmental illness (EI). If you have these conditions and feel like you’re […]

Special Issue “Biomarkers In Chronic Fatigue Syndrome (ME/CFS)”

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  From MDPI.   Special Issue Information Dear Colleagues, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a systemic disease that affects the central nervous system, the immune system, cell energy metabolism, the autonomic nervous system, etc. The main clinical sign is persistent chronic fatigue that is not relieved by rest and lasts for more than six […]

To Vaccinate Or Not – With ME/CFS

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  By: Nancy Klimas, MD, Director, INIM   Veterans with concerns related to Gulf War illness have a lot in common with ME/CFS patients, so my advice to them is the same. See the article below.   I have been asked this question dozens of times over the past week. This is my opinion – […]

8 Favourite Game Apps On My Phone

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From Len’s Cup Of Tea Blog.   Most of us spend quite some time on our phones these days, and I am certainly no stranger to that either. As someone with a chronic illness who needs to rest quite a lot, low energy games on my phone are a great way to spend my time […]

Latest Report Shows People With ME Have Been Failed By Scottish Government

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From ME Action Scotland.   The Scottish Government has said it must not wait to address the needs of the ME community, but its latest report indicates that this is precisely what it has done and continues to do.  The ME community has also waited: for nearly twenty years, people with ME in Scotland have […]

Explaining Paul Garner’s Long COVID Recovery Story (???) Plus What Does It Mean ?

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  By Cort Johnson in Health Rising. Paul Garner’s recovery story from long COVID has met with almost universal dismay and anger from the chronic fatigue syndrome (ME/CFS) community. Garner, after all, was something of a champion for long COVID and ME/CFS. An infectious diseases specialist who had weathered serious infections before, he seemed perfect […]

Impact Of ME/CFS On Quality Of Life Of The Patient And Family Members (Person With ME/CFS Questionnaire)

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  From ME Research UK.   Study Information for Person with ME/CFS Having ME/CFS can have a huge impact on people’s wellbeing. We want to find out how ME/CFS affects the quality of life of the person with ME/CFS and their life partner or other close family member. This is important because this will help […]

Inability Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients To Reproduce VO₂Peak Indicates Functional Impairment

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  By Betsy A Keller et al in PubMed.   Abstract Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-system illness characterized, in part, by increased fatigue following minimal exertion, cognitive impairment, poor recovery to physical and other stressors, in addition to other symptoms. Unlike healthy subjects and other diseased populations who reproduce objective physiological measures during […]

Professor Garner, The BMJ And Me: An Alarming Flip-Flop On Recovery From Long Covid

Valerie Eliot-Smith

  By Valerie Eliot Smith in valarieeliotsmith.com.   As the year 2020 began, so did the story of a global pandemic which is now known generally as Covid-19. One year on, the world is still coming to terms with both the short and long term effects of the disease. The latest recorded worldwide death rates have exceeded two million […]

Mists and Myths Swirl Around Inverness

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      By Annie Drummond in the Looking At Lyme Blogspot. Scotland is a land of mists, mountains, and malicious ticks. Sorry Scotland, I love your beautiful country and your hospitable, friendly people, but it is where I was bitten by a tick which gave me Lyme disease (also known as borreliosis.) Several researchers […]

Health Politics In Action ? Professor Garner’s Change Of Heart On Long Covid (And ME/CFS)

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By Nemesis in Healthcare Hubris.   Trigger warning: gaslighting, ableism, death, coercive control, cult psychology   Politics pervades everything, and healthcare is no exception. This can arguably be exemplified through tracking the twists and turns of dominant thinking around Long Covid management, and how this is positioned vis-à-vis other chronic illnesses, notably myalgic encephalomyelitis / […]

In-Depth Analysis Of The Plasma Proteome In ME/CFS Exposes Disrupted Ephrin-Eph And Immune System Signaling

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  By Arnaud Germain et al in MDPI.   Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease with worldwide prevalence and limited therapies exclusively aimed at treating symptoms. To gain insights into the molecular disruptions in ME/CFS, we utilized an aptamer-based technology that quantified 4790 unique human proteins, allowing us to obtain the […]

Report Calls For ‘Radical And Ambitious’ Disability Strategy

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  By John Pring in Disability News Service.   A new report, based on the views of hundreds of disabled people and organisations, has called on the government to produce a national disability strategy that is “radical and ambitious”. The report by Disability Rights UK (PDF) follows a three-month engagement campaign aimed at discovering how disabled […]

Book Excerpt From The Puzzle Solver

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By Tracie White in The Scientist. I smile and nod, and he smiles back. It’s like watching the image I’ve created inside my mind of this young man, built out of bits and pieces of stories and interviews and writings and photos, come magically to life. It is easy to like him, and I do like […]

The Expert Testimony To NICE That Took Apart The Case For CBT And Graded Exercise For ME/CFS

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    From ME/CFS Research Review.   Professor Jonathan Edwards told NICE it should not recommend either CBT or graded exercise as all the trial evidence for them used subjective outcomes in unblinded trials, giving unreliable results. He showed why blinding in ME/CFS trials is essential, despite PACE supporters claiming it is not. Edwards said […]

Trial By Error: Game-Changing Articles In The Guardian And The New York Times

David Tuller

  By David Tuller, DrPH The relationship between what is being called long-Covid and ME/CFS (and its variants) is complex. The conditions overlap in ways that are poorly understood, and the mechanisms through which they produce such significant disabilities remain elusive. As the coronavirus pandemic enters its second year, many tens or hundreds of thousands […]

Large Long COVID Study And Major Media Articles Underscore Link To ME/CFS – Plus Countdown For The NIH

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    By Cort Johnson in Health Rising.   “The findings show that—even in those people who don’t require hospitalization for severe COVID-19—the condition’s prolonged symptoms are having a major impact on lives and livelihoods, both here and around the world. While the number of people affected isn’t yet known, if even a small proportion […]

Don’t Think Disabled People Have It Easy Because We Get ‘Perks’

Samantha Renke

        By Samantha Renke in The Metro.   ‘But you get free parking, and you get to jump to the front of the queue. What about those nice big toilets, they can’t be all that bad, hey?’ These are just some of the comments I’ve had over the years as a disabled […]

It Is Not Only Drugs And Devices That Can Harm

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  By Cariline Struthers in Health Watch. “First Do No Harm”, the Independent Medicines and Medical Devices Safety Review focusing on three drug/devices aimed at women (aka the Cumberlege report) was published on 8 July 2020.(1) It should have welcome implications for much-needed change in the way patients are treated. Two of the review’s proposals […]

Post-Exertional Neuroimmune Exhaustion (PENE)

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      From ME International.   The information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice. Below is information from the International Consensus Primer for ME that relates to PENE.  We feel it is important all people with myalgic encephalomyelitis […]

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