ME Symptoms

Post-Covid Research & Clinical Care Must Include ME/CFS

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  From #MEAction.   People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for many months, even […]

Data Firm Zegami Joins Project To Find Cure For ME

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  By Agata Gurkovska in Zagami.   Zegami, the Oxford University data visualisation spin-out, has joined an international team of medical researchers to try and find the cause of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). The startup believes the project could lead to the discovery of the root cause of the condition […]

As Lockdown Eases, Those Of Us With Chronic Illnesses Must Not Be Left Behind’

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  By Helen Wilson-Beevers in The Independent. When Boris announced that pubs, cinemas, hair salons and hotels will reopen from the 4th July, there came collective chatter about reclaimed freedom. There is a palpable feeling holidays and nights out are once again within reach; a new normal is just around the corner. In England, too, shielding for […]

The Impact Of Food On Cognition: Potential Implications For Brain Fog In ME

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From Jisc R&D.   This study is looking to recruit both healthy individuals and those with a diagnosis of MILD ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue). The aim is to investigate how food impacts your performance on 2 short cognitive tests, a colour naming task and a memory task. Participants will be allocated to either a food […]

Coronavirus: Government’s Failure To Offer Video PIP Appeals ‘Is Discrimination’

Benefits

  By John Pring in Disability News Service.   The government’s continuing failure to allow benefit appeals to be heard via video conferencing is discriminating against disabled claimants, say welfare rights experts. Many disabled people are being forced to ask for their tribunals to be postponed, because they are only being offered a telephone hearing, […]

The Fear In My Doctor’s Eyes

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  By Anil van der Zee in CAPTURE.DANCE.WORDS.   The honeymoon. Before becoming ill, my relationship with the medical world was always great. It was pretty much straightforward really. During my profession as a dancer, injuries were of course always of a concern. I had to be in close contact with doctors, physiotherapists, massage therapists, […]

Caution And Controversy

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  By Anna Redshaw in her M.E. Myself And I Blog.   This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. […]

Covid-19 At 14 Weeks—Phantom Speed Cameras, Unknown Limits, And Harsh Penalties

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  By Paul Garner in BMJ Opinion.   “If my husband had said he was still sick with covid-19 after a month, I’d say he was milking it.” Straight talking from a Liverpudlian woman on one of my WhatsApp groups in April when I had been ill for a month; what would she say to […]

UK To Launch World’s Largest Genetic Study Into Chronic Fatigue Syndrome

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  By Haroon Siddique in The Guardian.   The world’s largest genetic study into chronic fatigue syndrome is to be launched in the UK after receiving £3.2m of funding from the Medical Research Council and National Institute for Health Research. The research aims to shine a light on the debilitating long-term condition, about which little is […]

Trial By Error: BMJ Responds To Appeals About Norway’s CBT-Music Therapy Study

David Tuller

    By David Tuller, DrPH Earlier this week, I sent a nudge to Professor Imti Choonara, editor-in-chief of BMJ Paediatrics Open, and Fiona Godlee, editorial director of BMJ, about a problematic “feasibility study” published a few months ago. That followed a letter two weeks ago, to which I had not received a response. Previous posts on this […]

The UK ME/CFS Biobank: A Rich Resource Of Samples And Data

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  From London School of Hygiene and Tropical Medicine.   It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many […]

A Novel Neuroinflammatory Paradigm For Chronic Fatigue Syndrome (ME/CFS)

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  By Cort Johnson in Health Rising.   Mackay A, Tate WP. A compromised paraventricular nucleus with a dysfunctional hypothalamus: a novel neuro-inflammatory paradigm for ME/CFS. Int J Immunopathol Pharmacol. 2018:32:1-8. The HPA’s nexus in two important systems – the stress response and the immune system, both of which almost everyone believes are impaired in ME/CFS – […]

For The Non-Believers

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  This excellent summary of the scientific evidence for M.E. was shared on Twitter by Research Scientist, Dr Mark Guthridge. M.E. patients face disbelief that they are sick. Many are told that they are simply tired, stressed, anxious, depressed, lazy or malingering. How can people with M.E. respond to such disbelief and lack of understanding? […]

From The Tahoe Outbreak To COVID-19 Dr. Peterson And Simmaron Take On The Coronavirus – And ME/CFS

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  By Cort Johnson in Simmaron Research.   “Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this […]

Do Graded Activity Therapies Cause Harm In Chronic Fatigue Syndrome ?

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From The Journal of  Health Psychology.   Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures of fitness […]

Trial By Error: Joan McParland’s Lightning Process Experience

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by David Tuller, DrPH Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of recovery from illness. […]

Trial By Error: A King’s College London Press Release Hides The Bad News

NLP CBT

  By David Tuller, DrPH In teaching courses on covering public health and medical issues, I have often highlighted how university press releases about studies can read like efforts at obfuscating problematic findings rather than providing an accurate account of research. A recent press release from King’s College London, about a high-profile study published by Lancet […]

Press Release – Scientists Call For More European Research On ME/CFS

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From European ME Coalition.   Brussels, 10 June 2020  More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and […]

Narrowed Small Blood Vessels Linked To Fatigue In ME/CFS

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  The Scheibenbogen Effect With the studies pouring out, it’s getting hard to keep up with Carmen Scheibenbogen and friends in Germany. Scheibenbogen has co-authored no less than five papers on chronic fatigue syndrome (ME/CFS) in 2020. With Klaus Wirth coming on board, the autoantibody testing lab there, and Scheibenbogen and company in a publishing […]

The (Welsh) Health Minister Comments On Covid-19, ME, Rehabilitation & NICE

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From The Welsh Association of ME & CFS Support (WAMES).   The Health Minister Vaughan Gething has replied to the letter WAMES sent to him on International ME Awareness Day highlighting the links between Covid-19, PVFS and ME, and requesting a combined strategy for care.  We note that the forthcoming guidance on rehabilitation “will not be condition specific” so […]

From Fight/Flight To Neuroinflammation: Explaining The “Functional Pain” In Fibromyalgia And ME/CFS ?

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By Cort Johnson in Health Rising.   There’s neuroinflammation and there’s the stress response. Recently, we saw Mackay and Tate propose that neuroinflammation in ME/CFS and FM was linked to a whacky stress response centered in the hypothalamus. In 2018 Chinese-Duke University collaboration suggested that the stress response and neuroinflammation are linked as well, although […]

Post Viral Fatigue In Covid-19

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  From Frontline. As we enter the next phase of pandemic response, physiotherapy services are looking to support people recovering from Covid-19. One of the most prevalent problems is fatigue. Fatigue following a viral infection is common, but for some people the symptoms may persist for months and impact on their quality of life. We […]

Bacteriophage Lyme Test Offers ME/CFS Patient New Possibility

Deer tick, Ixodes scapularis, on a fingertip

  By Dominic Stanculescu in Health Rising.    Dominic reports on the new Phelix bacteriophage Lyme test his wife with ME/CFS tested positive on. Possible new “break-through” blood test for Lyme and other tick-borne diseases Summary: A new type of blood test for tick-borne bacterial infections became available in September 2019: the Phelix Phage Test. The test looks […]

Unseen: Black People Living With ME

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  By Wilhelmina Jenkins in #MEAction.  When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in physics that […]

The ‘Lightning Process’: Implausible, Unproven, Hyped And Expensive

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  By Edzard Ernst in edzardernst.com. The Lightning Process  (LP) is a commercial programme developed by Phil Parker based on ideas from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. Parker claims that LP works by teaching people to […]

Trial By Error: Two Letters To Dagbladet About Its ME Coverage

David Tuller

  By David Tuller in Trial By Error. In recent weeks, the Norwegian tabloid Dagbladet has published a series of articles about ME, which it also calls CFS/ME. These articles have promoted the use of the Lightning Process as an intervention, criticized patients and the Norwegian ME Association for expressing opinions about the Lightning Process and cognitive […]

Fatigue And ME

Fatigue

Fatigue And ME I have a worry on my mind That spins my head around It causes grief, it’s beyond belief And an answer must be found It’s about a word that’s used a lot A word filled with intrigue Not beat, not weary, not tired or wired But that bleedin’ word fatigue ! It’s […]

OMF Announces New Treatment Trial

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  From Open Medicine Foundation.   As part of #MayMomentum, Open Medicine Foundation is thrilled to announce a new clinical trial that builds on OMF-funded research and shows the interconnected strategies of the four OMF-Established ME / CFS Collaborative Research Centers. We hope that you will agree that this thoughtful research strategy deserves your support and that today […]

It’s Not You, It’s M.E.

Writing Poetry

As we approach the end of ME Awareness Month….. It’s Not You, It’s M.E. When we first started out Wide eyed at the coming years We were so strong We just bowled along No worries, no cares, no fears. Now times have changed We’re growing apart Body and soul It’s breaking my heart It’s such […]

My Comments To The Cochrane Review On Exercise Therapy For CFS

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By ME/CFS skeptic.   Problems with the amended version (Version published: 02 October 2019) part I. I appreciate the efforts made by Cochrane and the authors to correct some of the errors in the previous version of this review. There are however some major problems that remain and significantly impact the results and conclusion. I hope […]

Trial By Error: Norway’s Double Whammy Of Fuzzy Science

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    By David Tuller, DrPH Norway’s got a double whammy going on. First there’s the group of investigators that seems to have had trouble determining whether their newly published research on CBT and music therapy was an actual randomized trial or merely a feasibility study. (More on that below.) Then we have Dagbladet, a widely […]

Untangling The MUS Web

Research Study

  By Good Elf in Opposing MEGA. Untangling The MUS Web How badly have UK proponents of ‘Medically Unexplained Symptoms’ (MUS) misled the medical community? From the murky mire of ‘medical’ literature on ‘MUS’, one reference emerges as more rancid than the rest. This 2001 paper – https://www.sciencedirect.com/…/…/abs/pii/S0022399901002239… – by Nimnuan, Wessely and Hotopf has been used […]

Seizing the Moment: International ME/CFS COVID-19 Research Effort Begins

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  By Cort Johnson in Health Rising.   “I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms.” Paul Garner – Infectious Diseases Specialist A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds […]

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