Post-Exertional Malaise & Pacing (8-minute video) (May 2024)
Another useful resource from the Bateman Horne Center
(Distressing topic)
5-minute video piece on UK local TV plus associated text article:
"Maeve Boothby-O'Neill inquest: Woman died from malnutrition due to ME, coroner finds"
I found this interesting. We owe a great deal to Melvin Ramsay & his work over many decades.
(Distressing topic)
‘Our Daughter’s Death Was Preventable’ Calling for Change in the Care of ME Patients
15-minute piece on UK national TV can be seen here
Features Sarah Boothby, Maeve's mum, & Dr Shepherd of @MEAssociation
How Coroner’s Inquiry into death of Maeve Boothby-O’Neill unfolds – in quotes with media links – Week 2
Dr Nigel Speight Talk on "ME/CFS in Children and Adults: An Overview" (2024)
YouTube link:
It would be great if more people could subscribe to our channel
Lee Colligan recently completed a marathon 2500km walk around Ireland in memory of his brother Josh & to raise money for ME charities.
Here is a poignant 45-second video from his popular IG account.
Lee’s page
From April: A Shocking Indictment of European Research and Healthcare Policies for Myalgic Encephalomyelitis
The European ME Alliance today releases the findings of a comprehensive survey shedding light on patients across Europe
It includes a link to the full survey report, "EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences"
2024 leaflet that can be printed out from ME Action Network UK
Note that the CPD course is free for people around the world. And non-doctor healthcare professionals can also do it.
Myalgic Encephalomyelitis often leaves sufferers quanked along with many other symptoms
ME Research UK
Whilst the fatigue in ME/CFS is debilitating, there is far more to ME/CFS than just this symptom. Fatigue is accompanied by cognitive dysfunction, sleep dysfunction, and post-exertional malaise (PEM; worsening of ME/CFS symptoms following minimal physical or mental exertion). Beyond these core symptoms individuals with ME/CFS can experience an array of symptoms, such as - but not limited to - pain, gastrointestinal issues, visual disturbances, and sensory hypersensitivities. People with ME/CFS also often have comorbidities (co-occurring conditions) such as postural orthostatic tachycardia syndrome (POTS), irritable bowel syndrome (IBS), mast cell activation syndrome (MCAS), and fibromyalgia.
Read more about POTS:
Read about why the view that ME/CFS is a psychosomatic illness is inconsistent with biomedical research:
ME Research UK
This week we are raising awareness about the debilitating symptoms of ME/CFS. Sleep dysfunction is a frustrating symptom which includes changes in sleep quality, quantity, and patterns. One article states, “unrefreshing sleep is used to describe a light sleep that, even after a full night, doesn't leave you rested. People with ME/CFS often report waking up exhausted and feeling as if they haven't slept at all—no matter how long they were actually asleep.”
Studies reveal a correlation between poor sleep quality and diminished quality of life in ME/CFS patients. Sleep disturbances intensify existing symptoms like fatigue and cognitive dysfunction.
Read more about sleep in ME/CFS:
ME Research UK
This week we are raising awareness about the debilitating symptoms of ME/CFS. The experience of cognitive dysfunction cannot be equated to the occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather cognitive dysfunction is a complex and distressing symptom. The CDC states “Most people with ME/CFS have trouble thinking quickly, remembering things, and paying attention to details. Patients often say they have “brain fog” to describe this problem because they feel “stuck in a fog” and not able to think clearly.”
Read more about cognitive dysfunction and the brain in ME/CFS:
ME Research UK
This week we are raising awareness about the debilitating symptoms of ME/CFS. As “fatigue” is such a widely used word, healthy individuals may mistakenly equate their own experience with the reality of fatigue in ME/CFS. Fatigue in ME/CFS is not just tiredness, it is a persistent symptom that is not adequately relieved by rest and significantly impacts activities of daily living. Fatigue, in addition to other symptoms, can be significantly worsened through post-exertional malaise (PEM) – see yesterday’s post.
A physical therapist with ME/CFS describes her personal experience of fatigue - “The most severe symptom that I have experienced daily has been unrelenting exhaustion. I often describe it as having a battery that is at a maximum of 10% full, draining quickly. Once the battery is drained, I cannot charge it.” Read full account: https://bit.ly/3WT7F7B
Read more about an ME Research UK-funded study which explored fatigue and PEM in relation to mitochondrial dysfunction: