ME Symptoms

Forward-ME Call For Health Warning To Be Put On Existing NICE Guideline For ME/CFS

Margaret_of_Mar

  From The ME Association. A highly influential UK campaign group is demanding that a health warning be put on the existing NICE guideline for ME/CFS – to try and stop more patients being damaged by graded exercise. Some 24 members of the Forward-ME Group – led by founder The Countess of Mar – have signed […]

The Enduring Light Of Love

Lost

From A Life Hidden Blog by Naomi Whittingham.   I see him in the hushed beauty of a winter sky; in the gold-streaked clouds of an expectant dawn.  I feel his presence in music and candlelight.  He is never fully here, yet with me always.  Unknown to much of the world, yet a constant in my […]

Study Suggests Energy Production Problems May Be Everywhere In Chronic Fatigue Syndrome (ME/CFS)

Fatigue

By Cort Johnson in Health Rising.   As time has gone on, the energy production issue in chronic fatigue syndrome (ME/CFS) has become better and better documented as researchers take different slants on it. Take the whole body energy production tests. Workwell’s two day cardiopulmonary exercise tests (CPETs) have documented the damaging effects that exercise one day […]

How To Manage Long Covid-19 Symptoms And Fatigue

Fatigue

  By Megan E. Doherty in elemental. Covid-19 is new, but the ME/CFS community has dealt with long-haul-like symptoms for years. Here’s how they cope. Asthe pandemic has progressed, it has become clear that a good chunk of Covid-19 patients suffer symptoms for weeks, even months, after first getting sick. Many of them deal with fatigue, muscle and […]

New Test For Chronic Fatigue Syndrome Could Help COVID-19 Patients

Blood Test

  By Erica Gerald Mason in Very Well Health.    Researchers have developed a new test to diagnose myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). The test stands out as the first successful molecular diagnostic tool for ME, a development that has been long anticipated by many healthcare providers and patients. This new tool […]

Trial By Error: Thoughts On The Observer, The Guardian, And Paradigm Shift

David Tuller

    By David Tuller, DrPH Earlier this week, I blogged about a story in The Observer that provided an inaccurate description of what it called chronic fatigue syndrome. For much of the piece, the writer, Eleanor Morgan, offered a sympathetic portrait of people, including herself, experiencing prolonged symptoms after an acute bout of Covid-19. A lot of what […]

Blood MicroRNA Patterns Linked To Chronic Fatigue Syndrome

Blood Test

By Katarina Zimmer in The Scientist.   A finding of distinct patterns of gene-regulating RNA snippets in the blood of ME/CFS patients in response to a stress test could pave the way for a diagnostic tool for the condition and help untangle its underlying mechanisms. Formerly known as chronic fatigue syndrome, myalgic encephalomyelitis/chronic fatigue syndrome […]

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population

Research

  By Toshimori Kitami et al in Nature.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options. To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and fecal microbiome analysis. […]

#Walkingfromhome: The Wheelchair User

Wheelchair

  From Living Streets. Caroline lives in a seaside town in England and is a member of one of our Local Groups of volunteers.  As a wheelchair user, Caroline is passionate about improving streets and the access to them for everyone. In normal times, Caroline’s favourite things are being with friends, volunteering and seeing the […]

Whoops ! Did A GET Study Just Explain Why It DOESN’T Work In Chronic Fatigue Syndrome (ME/CFS) ?

johnson_cort

  By Cort Johnson in Health Rising.   Question: When does a graded exercise study explain why graded exercise is not helpful for chronic fatigue syndrome (ME/CFS)? Answer: when it employs an exercise test with it. Just as NICE was pulling back on graded exercise therapy (GET) a GET study was published showing why it doesn’t work. The authors […]

Paul Garner On long Haul Covid-19—Don’t Try To Dominate This Virus, Accommodate It

british-medical-journal

  From BMJ Opinion.   “Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this […]

Long Covid: Overlap Emerges With ME – Including Debate Over Treatment

COVID-19-Pandemic-min

  By Linda Geddes in The Guardian. Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, […]

Activity And Energy Management – Pacing

Pacing

  From the ME/CFS Clinician Coalition USA.   “Striking the right balance between activity and rest is one of the most difficult aspects of coming to terms with M.E. On one hand is the need to take an appropriate amount of rest and relaxation, especially during the very early stages, as well as during periods of […]

The Present (And Future) CoQ10 for Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS)

OIP (8)

By Cort Johnson in Health Rising. This blog is one of a continuing series of blogs that are attempting to peer into the future and see what treatments possibly await us. This blog provides an overview on CoQ10 – what forms work best and how to take it – and then takes a look at […]

No More Mr NICE Guy…

Pace-Study-debunkedrev-330x330

    By Brian Hughes in The Science Bit.   The newly released draft NICE guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” continue to cause a stir. And rightly so. The new guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — […]

First In Our Superhero Series : The Whitney

Whitnet Dafoe

    Written by Di in Stanford Wood Studio.   Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]

“Ice Cream & Hypothermia” Revisited + A Chilling NICE Consultation Process

Valerie Eliot-Smith

By Valerie Eliot Smith in Law and Health: due process and civil society.   Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length.  ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]

Long-Covid And Exercise

Doctor

  Despite NICE potentially dropping Graded Exercise Therapy as a treatment for ME, it’s still being suggested by GP’s to those with Long-Covid that they should exercise more as a way out of it. If your GP recommends exercise, please ignore, as it is very likely to make you worse.

Why Do We Need To highlight Disability History Month ?

disability-rights

  By Gem Turner in WheelAir.   At the time of posting this, it’s Disability History Month in the UK. It’s not very widely known – and when I talk about it, it gets a lot of questions from people. The main one is something like “it’s quite good for disabled people now though isn’t […]

Proposed British Guidelines Reject Useless Chronic Fatigue Syndrome Treatments

myths

  By DAVID TULLER and STEVEN LUBET in Statnews.com.    irrational fears they had an organic illness. The favored treatments were graded exercise therapy, designed to counter the deconditioning with a program of progressively increasing activity, a form of cognitive behavior therapy specifically designed to address the unfounded illness beliefs, or a combination of the two. In the […]

Montreal Researchers Make Chronic Fatigue Syndrome Discovery

Blood Test

  By Jean-Benoit Legault  The Canadian Press. A discovery by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), better known as chronic fatigue syndrome. In most instances, ME is currently diagnosed by elimination, as doctors put aside other possible causes of the patient’s symptoms. But researchers from the University […]

Time To Add Some Sunshine (Vitamin D) To Milk And Bread

Vitamin D

  By Jeremy Howick in The Conversation. Free vitamin D supplements will be sent to over two million clinically vulnerable people in England this winter. Over 80% of patients hospitalised with COVID-19 are vitamin D deficient compared with the general population. In a small study, a high dose of vitamin D appeared to reduce the severity of COVID-19. […]

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