ME Research And Researchers

New ! ME/CFS Family Impact Survey By Dr Nina Muirhead & Cardiff University

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By Russell Fleming in The ME Association. We are excited to announce a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members. This is a short and simple online survey designed to be accessible to all adults 18+, including severely affected patients. […]

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 […]

Manx Radio Turn Up The Volume For A Specialist ME/CFS Service On The Island

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  By Ewan Gawne on The ME Association website. A Manx Radio reporter has produced an excellent 25-minute podcast on the campaign for a specialist service for people with ME/CFS on the Isle on Man. Ewan Gawne, the radio station’s deputy news editor, featured relaxed chat with three guests on the podcast – broadcast on […]

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

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  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. […]

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

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  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 […]

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

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  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, […]

Why Is ME/CFS Getting So Little Research Funding?

Funding

  By ME/CFS Skeptic.   In a previous blog, Evelien and I argued that ME/CFS is getting less research funding than illnesses with a comparable prevalence and disability. In this article, we will try to get a better understanding of why ME/CFS gets so little research funding. Many causes have been proposed such as stigma, lack […]

Activity And Energy Management – Pacing

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  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)

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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…

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    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 […]

Proposed British Guidelines Reject Useless Chronic Fatigue Syndrome Treatments

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  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 […]

Trial By Error: Jennie Spotila’s Annual Review Of NIH Funding

Funding

  By David Tuller, DrPH Every year, Jennie Spotila posts her analysis of annual funding for ME from the US National Institutes of Health on her invaluable blog, Occupy M.E. (On the other hand, Occupy Me is a 16-minute gay drama from 2015 about an interlude between two guys. I have no idea if it’s any good, but looks […]

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 […]

Could This Actually Be Happening ?

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      By Brian Hughes In The Science Bit.   Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal. In the UK, the National Institute for Health and Care Excellence (NICE) have published new draft guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome”. […]

NICE Draft Guidelines On ME Published

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  After a very long wait, too long, NICE have publised their draft guidlines on the treatment of ME. It seems that at long last, and after huge pressre by the ME Community, Graded Exercise Therapy has been removed as a recommended treatment for ME.  It shouldn’t have taken this long, and too many individuals […]

Doctors Examining Possible Link Between Chronic Fatigue Syndrome And COVID-19

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  By Dr. Danielle Weitzer and Dr. Christie Richardson in ABC News.   By this point, many people can identify symptoms of COVID-19 — fever, fatigue, shortness of breath — but fewer know that those can occur after a successful recovery and closely resemble another illness: chronic fatigue syndrome. “There may well be a post-viral syndrome associated with COVID-19,” Dr. Anthony […]

Illness-Related Fatigue: More Than Just Feeling Tired

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  By Jennifer Crystal, MFA in Harvard Health Publishing.   A common refrain during the COVID-19 pandemic is, “I’m so tired.” After months of adjusted living and anxiety, people are understandably weary. Parents who haven’t had a break from their kids are worn out. Those trying to juggle working from home with homeschooling are stretched […]

Use Of Glucose For Energy Production In Muscle Cells From Patients With ME/CFS

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  By Cara Tomas, Joanna L Elson, Julia L Newton & Mark Walker in ME Research UK. Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK Scientific Reports, 2020 Oct 26; 10(1):18232 Key findings Muscle cells from people with ME/CFS are less able to use glucose as a fuel to produce energy This […]

A Never-Ending Immune Battle In ME/CFS ? The Regulatory T-cell / Herpesvirus Hypothesis

Blood Cells

By Cort Johnson in Simmaron Research. The failed Rituximab trial might seem like the death knell for autoimmunity in chronic fatigue syndrome (ME/CFS) but it’s not – not by a long shot. While the B-cells that Rituximab targeted are at the heart of much autoimmunity, T-cells can also cause autoimmune diseases. They also play a […]

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