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Stop Per Fink from Spreading Misinformation about ME: Sign the Petition

October 9, 2018 3 Comments

The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME) is a psychosomatic illness. Per Fink has been invited to speak at a psychosomatic conference at Columbia University in New York City on Oct. 20th. Columbia University will reward medical providers who come to hear Per Fink speak with continuing education credits.

Living Deeply in Tiny Rooms

October 7, 2018 10 Comments

Listen to the article: Here is a question for you: Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to me

Australia: National Committee will Issue Report on ME and CFS

October 2, 2018 3 Comments

The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical Research Council to advise the government on research and clinical guidelines, has one more meeting before releasing their report for public consultation. The ME and CFS Advisory Committee will be finalising the report at the next meeting. The

Alphabet Soup – Your Guide to Current U.S. Actions

September 17, 2018 1 Comment

When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory Committee. While flawed,

Scottish Lib. Dems Pass Motion for ME, with Amendment

September 13, 2018 3 Comments

ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is now party policy. It is a hugely

Beauty Sleeping: A Real Life Fairytale

September 9, 2018 15 Comments

Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful was that she knew it. She didn’t bother with big puffy dresses, or make up—she was beautiful on a tyre swing out in the woods of her poor little kingdom, and she was beautiful fixing a

Scottish Liberal Democrats will Vote on Motion for ME

September 7, 2018 1 Comment

At the Scottish Liberal Democrats conference this Saturday in Dunfermline, party member Emma Walker will present a motion about Myalgic Encephalomyelitis (ME), focussing on the need for biomedical research and the removal of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) as treatments for ME in Scotland. If it passes, it will become Liberal

Enrolling: Cornell Brain Imaging

September 7, 2018 No Comments

Cornell Center for Enervating Neuroimmune Disease aims to collect brain images (MRSs) from individuals with ME to study oxidative stress and neuroinflammation. Dr. Dikoma Shungu hopes to identify possible biomarkers for ME as well as add to the overall understanding of the disease. Who: Cornell Center for Enervating Neuroimmune Disease is collecting information from both ME patients

August 2018 — Research Roundup

September 1, 2018 No Comments

August was a mixed month in the world of ME research, with some truly innovative studies coming out and a few that needed another couple of rounds with the thesis advisor. Some great books and book chapters debuted — and we faced Afflicted, battling not only the usual stigma, but the directors’ framing of chronically ill patients

Advocacy Roundup – Holding Our Institutions Accountable

August 31, 2018 1 Comment

It has been a hot summer for many around the world, and another month of courage, resilience and bravery as people with ME continue to demand equitable research, treatments and respect. We continue to fight against harmful treatments and stigma worsening the health of everyone from the newly diagnosed to those who have lived with

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