We are extremely concerned that some medical/care professionals and sports/exercise specialists are still recommending exercise programmes and/or graded exercise therapy (GET) to people who suffer from ME without even adding very prominent warnings about the harm that exercise can cause to ME sufferers – especially those with severe ME 25% Read more…
A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. https://www.mdpi.com/2227-9032/8/3/211?fbclid=IwAR2vSLjQuoc9j-Lb6bMgP2GedyO2suHBpWmAoKVFDKHyZIsNYurfVijCyTY
Could COVID-19 trigger chronic disease in some people? A handful of viruses have been associated with long-term, debilitating symptoms in a subset of those who become infected. Early signs hint that SARS-CoV-2 may do the same. https://www.ibtimes.com/fauci-warns-post-viral-syndrome-among-covid-19-patients-causes-fatigue-brain-fog-3012876
Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptom are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to Read more…
Many people with severe Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) commonly receive no care from healthcare professionals, while some have become distanced from all statutory medical services. healthcare-08-00197
This helps explain scientifically something everyone with ME knows. Pacing enough to avoid PENE is very hard and for the more severe it can be impossible. It does have guidance as to how to pace with more understanding of what is gong wrong. https://chronicallycaroline.com/2020/06/29/energy-systems-and-pacing-in-me-cfs/?fbclid=IwAR13J-vcISBUH2DqUq4mEArx1dmvlFJ2eB8bFg4oLgmGucOf9sg0Hd0_-Zk
During this pandemic, we have seen a spotlight shone brightly on chronic illness like never before. That those with pre-existing health conditions and the elderly are most likely to be significantly affected by Covid-19, means we have come together to protect people who previously felt invisible. Covid-related messaging that no Read more…
This is a radio podcast on Post Covid Syndrome that was broadcast yesterday. It is very good and the neglect of ME and the gaslighting of patients is blamed for the lack of knowledge about Post Covid Syndrome. Click on the red button top left to listen. https://www.wbur.org/onpoint/2020/06/25/whats-it-like-to-recover-from-covid-19
Hundreds of families whose children suffer from the debilitating condition ME have faced child protection investigations in the past decade, The Times has learnt. https://www.thetimes.co.uk/article/chronic-fatigue-syndrome-me-families-accused-of-child-abuse-np968v9dt
We have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments. Press Release: £3.2m Read more…