ME Support and Awareness in York – The York ME Community

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 […]

In The Balance. Immune-System Research In ME/CFS Part 2

Here is the second part of Dr Eleanor Roberts’ article looking at ways in which the immune system may be disrupted in ME/CFS. Click here for part 1, and click here for Eleanor’s introduction to the immune system. ‘Leaky gut’ For some people with ME/CFS, their symptoms may be due to changes in the different species of […]

Help The Millions Missing

Help The Millions Missing Have you heard of the Millions MissingHave you heard the newsSurely they’ve been on the radioLooking for any clues Have you heard of the Millions MissingPeople just gone amissNo longer turning up for workGone down some abyss Have you heard of the Millions MissingIt’s not something they’d suppressYou can’t have people […]

Understanding Muscle Dysfunction In Chronic Fatigue Syndrome

By Gina Rutherford, Philip Manning, and Julia L. Newton. Abstract Introduction. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a debilitating disorder of unknown aetiology, characterised by severe disabling fatigue in the absence of alternative diagnosis. Historically, there has been a tendency to draw psychological explanations for the origin of fatigue; however, this model is at odds […]

Trial By Error: In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense

By David Tuller, DrPH On Tuesday (four days ago), The Guardian published an opinion piece from Professor Carmine Pariante titled “Long Covid is very far from ‘all in the mind’–but psychology can still help us to treat it.” The article is the latest from a member of the biopsychosocial ideological brigades to demonstrate what has long been […]

Slow-Onset ME

From Gwenfar’s Garden and other musings. This article was first published in the ME Association’s ME Essential magazine, Spring 2021, pages 32-33. Slow onset ME. You’ve probably never heard of it. It’s mentioned here and there, and on the ME Association website, but there are no explanatory leaflets or research articles. This isn’t anybody’s fault. It’s just that this […]

It’s Not Your Fault

By Whitney Dafoe. think at some level we all blame ourselves for the symptoms and consequences of ME/CFS. Even if you truly know and believe it is a real physical illness I think in the back of all our minds there’s a little voice that tells us we could be doing better if we tried […]

Living With ME: Lucy’s Story

From Helping Hands. Lucy was a healthy and active teenager. A keen swimmer, member of a running club, hockey player and a volunteer for children with special educational needs, Lucy was preparing for a vibrant and exciting future. In her final year of Sixth Form, Lucy contracted chicken pox. After a few weeks away from […]

In The Balance. Immune-System Research In ME/CFS part 1

From ME Research UK. Following her introduction last week, Dr Eleanor Roberts now takes a look at some of the ways in which the immune system may be disrupted in ME/CFS. Have a look back at her previous article for a reminder of some of the cells and processes discussed here. While there is evidence that the […]

People With Chronic Fatigue Syndrome Are Less Likely To Reach Out For Support

ByJulia Métraux in Very Well Health. People with Chronic Fatigue Syndrome Are Less Likely to Reach Out For Support Key Takeaways A study published in April suggests that people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are less likely to reach out for social support than others with chronic health conditions. Treatment for ME/CFS often involves […]

A Brief But Spectacular Take On Chronic Illness

The emergence of long COVID has drawn attention to poorly understood chronic illnesses. This week, over a thousand people living with those diseases signed up to meet virtually with members of Congress to push for more funding for chronic illnesses. Disability advocate Rivka Solomon gives us her Brief But Spectacular take on advocating for those […]

ME, The Insurance Industry And Psychiatry

About psychiatry and the insurance industry’s impact on financial support systems for ME patients, in Denmark and Norway. From melivit. Insurance companies that have financial advantage of having ME defined as a psychosomatic disorder connect with health professionals and researchers with exactly this understanding of the disease. In addition, these companies fund research that can […]

Open Letter To The NIH

From Body Politic. We write to you on behalf of Body Politic – a grassroots health justice organization at the forefront of the patient-led movement for Long COVID – with regards to the NIH’s funding for research into Long COVID. We were thrilled to learn of the NIH’s plan to investigate Long COVID and other […]

The Ending Suffering Project for ME/CFS, Fibromyalgia, Long COVID, and Allied Disorders

By Cort Johnson in Health Rising. Something new has become possible with the long-COVID funding. Long sought answers to ME/CFS are not a pipe dream anymore but appear achievable. They will, however, take some time to emerge. Yet many people are suffering now, and some may not make it until those answers emerge. What a […]

In The Balance. An Introduction To The Immune System.

The purpose of our immune system is to protect the body from invading infectious agents such as viruses and bacteria (called ‘pathogens’). But there is a fine balance between providing this protection without overreacting and causing harm. The immune system is unbalanced in diseases such as rheumatoid arthritis and multiple sclerosis, and this is also […]

“Doctors Can Commit Scientific Fraud And Financial Fraud And Not Be Punished”

  By David F Marks. Press Release by Dr Myhill concerning Dr Myhill’s Virtual Hearing 22 MARCH 2021 – vs ICO & GMC Doctors can commit scientific fraud and financial fraud and not be punished. This is the conclusion of Dr Sarah Myhill following her recent hearing vs the ICO and GMC. Dr Sarah Myhill tells […]

Let’s Drop ‘Chronic Fatigue Syndrome’

  By Ev Francis in West England Bylines. viral and I felt like Piers Morgan – difference being I wasn’t spouting tedious commentary on Prince Harry again. Someone pass him someone new to pick on. It came following the BBC Coronavirus special that discussed Long Covid and the parallels I’ve alluded to for the last 12 […]

‘Concerning Silence’ From Government Over Disability Ambassador Roles

By John Pring in Disability News Service. The government has failed to explain why it has made no contact for more than two months with a string of disabled experts who applied for voluntary positions as its “disability and access ambassadors”. The Disability Unit announced in early January that it was seeking 14 “senior business people” to […]

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 […]

Could High-Dose Thiamine (B-1) Help With ME/CFS, Fibromyalgia, And The Neurological Complications Of Ehlers-Danlos Syndrome ?

By Jeffrey Lubell in Health Rising.    Longtime readers of the Health Rising blog may remember an article that Cort wrote in 2013 about the promising results of a small study that found marked reductions in fatigue among three individuals with Fibromyalgia who took high doses of thiamine (Vitamin B-1). In the intervening years, several important studies on high-dose thiamine have been published, […]

Guest Blog: Outdoor Seating Plans For York City Centre

  From York Disability Rights Forum.   We invited Make it York and City of York Council to tell us about the outside seating that’s being introduced as part of the plans to reopen the city. Here you can find out about the ways that disabled access has been incorporated into those plans. As well […]

Trial By Error: Jennie Spotila Tracks Down–and Busts–an Old Tale About “Death Threats” from Patients

  By David Tuller, DrPH In early 2011, the first report of the PACE results in The Lancet drew widespread criticism from patients and advocates. Later that year, stories about unhinged, anti-science patients harassing and threatening leading researchers in the field appeared in high-profile UK outlets like BMJ and The Times. In the UK, this appears to […]

What Is Hypopituitarism And Could It Be An Alternate Explanation For ME/CFS ?

  By Joanne Lane with comment from Dr Charles Shepherd in The ME Association.   I don’t have ME, but I have something important to say that I hope may help people who have. Twelve years ago, our 31-year-old son Christopher killed himself. We were devastated and desperate to find reasons. We wondered about the serious head injury he’d had when he was seven and we found that […]

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