ME/CFS Information

DwME Joins Call For NICE To Maintain Scientific Process

From Doctors With ME. Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community. DwME considers the 2021 NICE guideline to be a watershed moment in the history of […]

News In Brief – July 2021

From Science For ME. This thread has a Science for ME ‘News in Brief’ post for each week in July 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week’s news. to read all the news, click on the link below: News in Brief – July 2021 | Science for ME (s4me.info)

Position Statement: 2021 NICE Guideline Update

From Doctors With ME. On the 10th of November 2020, the National Institute for Health and Care Excellence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise […]

Follow-Up To Previous Post On Responses To The Draft NICE Guideline For “ME/CFS” + The Need For A Communications Strategy Rethink

By Valerie Eliot Smith. This post follows up on some of the feedback from my previous post on possible community responses to the draft NICE guideline for “ME/CFS”. A number of points have been raised directly and on social media. It’s easier to address them here rather than trying to pick them off individually.  NICE GUIDELINE RESPONSES Re-cap […]

Department Of Health And Social Care – Must Do Better

By Sally Callow in mefoggydog.org Despite being extra unwell with Covid19/Long Covid myself, I have been beavering away in the background (as much as my weary M.E-slammed body would allow) to try and make ‘the powers that be’ as aware as possible that Covid19 had the potential to cause chronic illness in many people during […]

Deconditioning Does Not Explain Orthostatic Intolerance In ME/CFS (Myalgic Encephalomyelitis/Ehronic Fatigue Syndrome)

From the Journal of Translational Medicine. Abstract Background Orthostatic intolerance (OI) is a frequent finding in individuals with myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Published studies have proposed that deconditioning is an important pathophysiological mechanism in various forms of OI, including postural orthostatic tachycardia syndrome (POTS), however conflicting opinions exist. Deconditioning can be classified objectively […]

Research: Medical School Education On Myalgic Encephalomyelitis By Dr Nina Muirhead

From The ME Association. Overview Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed. For two decades, the medical education establishment in the UK has been challenged to remedy these […]

Long COVID – We’ve Been Here Before

by Jennifer Trueland in BMA. Long COVID is a new condition, but those who have endured years of ME/CFS can share their common experience – and a long history of being misunderstood. When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about what […]

Continuing Pressure On NHS To Vaccinate People With ME In Light Of Survey Results

From #MEAction. As reported last week, the preliminary findings from the joint survey between #MEAction and Action for M.E demonstrated that most respondents with ME experienced an exacerbation of their underlying disease and  prolonged illness from Covid-19 itself. The survey is still live for people who with ME who have had Covid-19 to take part. To read the rest […]

Symptoms Of Long-Covid “Like ME” Find Researchers

By Maja Grantham in Deadline. RESEARCHERS have discovered strong links between long Covid symptoms and those experience by Myalgic Encephalomyelitis (ME). sufferers. The effects of long Covid are now being realised around the world as around 10% of people who have covid 19 suffer from it. Some of those have ongoing organ problems, such as lung and heart […]

Behind The Scenes At NICE: The Justification For Further Delay To The ME/CFS Guideline Publication Date

By Dom Salisbury. On March 29, the National Institute for Health and Care Excellence (NICE) announced that the expected publication date for the revised guideline for ME/CFS had been pushed back from 21 April 2021 to 18 August 2021 “because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work […]

Life-Threatening Malnutrition In Very Severe ME/CFS

By Helen Baxter, Nigel Speight and William Weir in MDPI.   Abstract Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME […]

Apparently Just By Talking About It, I’m Super-Spreading Long Covid

By George Monbiot in The Guardian.   Rejoice! A mystery has been solved. We now have an explanation for long Covid, a condition afflicting many thousands of people. A super-spreader has been identified. Important as this finding is, I’m reluctant to call for the vector to be eradicated. Why? Because it’s me. In a presentation to the reinsurance giant […]

Video: “A Conversation About Myalgic Encephalomyelitis With Dr. Nina Muirhead”

By Pyrrhus in Pheonix Rising. After their last webinar with Trish Greenhalgh, which turned into a disaster, the Canadian Institute for Health Research (CIHR) scheduled another webinar, but this time with British doctor-patient Dr. Nina Muirhead:   To watch the video,click on the link below:   Link to Dr Muirhead Video

How COVID Long-Haulers Might Renew The Focus On Chronic Fatigue Syndrome

By Jad Sleiman in WHYY. Psychologist Leonard Jason knew the COVID long-haulers were coming long before anyone even had a name for them. “When we began hearing about individuals getting sick with this particular virus, we just assumed that there would be a certain percentage of individuals who did not recover,” he said. “And they ended up calling them […]

NICE Announce New Publication Date For The ME/CFS Clinical Guideline

  Russell Fleming, Content Manager, ME Association Dear Stakeholder,  Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.  29 March 2021    The ME Association was expecting NICE (The […]

The PACE Trial Should Be Retracted, Because It Was Seriously Unethical, And The Lead Investigators Continue To Deny That.

  By Dr Neil MacFarlane MRCPsych in DrNMblog.   This was submitted (December 2020) to NICE in response to the new draft ME/CFS guidance of November 2020,[1] which had removed the recommendation for Graded Exercise Therapy (GET), and downgraded CBT from therapeutic to a ‘supportive’ option. [1] https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents I appear to be the first UK psychiatrist to be […]

Long Covid Isn’t As Unique As We Thought – (Mentions ME)

By Julia Belluz in Vox.   Dr. Craig Spencer, an emergency room doctor in New York City, was no stranger to dangerous viruses when a brush with one landed him in Bellevue Hospital for 19 days. But it was only after he was discharged, and declared virus-free, that the really bizarre symptoms set in. Back at home, he noticed he […]

Research Digest 12/03/21

    From Emerge Australia.   Welcome to the 65th Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles. You can also join our community and choose to have the Digest delivered straight to your inbox every fortnight on […]

ME And The PACE Trial

  By David F Marks. Here I review the disastrous trial known as the ‘PACE trial’. This updates a post from several years ago. Review of the evidence indicates that none of the Wessely School’s hypotheses about the causes of ME/CFS are supported by the science (see here, here and here). Under these circumstances it would be scientifically impossible for […]

ME/CFS And Deconditioning

  By David F Marks. A previous post examined the Wessely School hypothesis that ME/CFS is caused by unhelpful beliefs. This idea was exploded as a myth. Here I examine a second Wessely School hypothesis (H2) that states: Deconditioning causes, or exacerbates the symptoms of, ME/CFS and MUS Deconditioning refers to multiple, potentially reversible changes in body systems […]

Fog And M.E.

Fog And M.E. In a car when fog descends Lights go on to see the bends Other dangers illuminated A flick of a switch, clarity created An M.E. fog is not the same It wraps around our words, our brain There is no switch, no helpful light Just confusion, loneliness and fright An M.E. symptom […]

Team Run For M.E. 2021

  From ME Research UK. ME Research UK is grateful once more to be chosen as one of the featured charities for 2021’s Walk for ME scheme. Covid-19 restrictions permitting and adhering to all social distancing and health advice, the initiative is most popular around ME Awareness Week. Walk for ME began in 2013 with the founders hoping […]

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