The new work, published this week in Nature Communications, affirms that ME/CFS is unquestionably biologically rooted, says Avindra Nath, clinical director of the U.S. National Institute of Neurological Disorders and Stroke, who led the study. It revealed brain activity differences, along with immune and other abnormalities, in...
The study by Eva Untersmayr-Elsenhuber and her team from MedUni Vienna's Center for Pathophysiology, Infectiology and Immunology builds on earlier research on immune disorders and the intestinal barrier function in patients with ME/CFS. It is well known that ME/CFS patients often differ greatly in the clinical manifestations of...
Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by profound fatigue, post-exertional malaise (PEM), and neurocognitive dysfunction. Immune dysregulation and gastrointestinal symptoms are commonly observed in ME/CFS patients. Despite affecting approximately 0.89% of the...
A while ago I moved in with my parents to relieve my wife from having to juggle two kids, the household, her elderly parents, her work and me. And my parents have this fancy digital thermostat I can control from my smartphone....
Temperature is a big issue for me and it worsening like that is usually a sign my body is under more strain (overdoing it, fighting off a random virus, too much PEM).
Issues regulating our core temp are not unusual for me/cfs.
I'm worried for you in the summer too. It's just been summer here and I do things like fill a squirt bottle with icy water and spray it over myself. Can you get some fans?
I can't even imagine having to go below 0° C with this illness. I think the body must use up a lot of energy trying to keep warm because like you, being cold crashes me.
Getting too hot is awful though, I end up with heatstroke.
You were disabled and realize it is not getting better, and no one seems to be able to fix the issue. You’re stuck laying down most of the day, you have enough mobility to function at home, but anything outside of home leaves you in bad shape beyond your control where you are not professionally functional. What do you do to...
A CPET is a cardiopulmonary exercise test. The 2 day CPET is when you get the test and then get it again 24 hours later.
People with me/cfs have different results than sedentary controls, so it's a good way of helping prove disability.
If you didn't know what ME/CFS is (myalgic encephalomyelitis) then you haven't been diagnosed with it and none of this applies to you, but I thought it was worth mentioning in case you had.
That sucks in terms of proving disability in your country (you would be eligible already in mine but since disability here is only half of minimum wage it's not really the solution like it is where you are).
But it's really fantastic that you are able to do so much!! That's way better. You're going to be able to work from home lying down. Lots of cool ideas in here.
I think you should still apply for disability every year. Maybe find a support group or organisation for people with broken necks/spinal injuries, they might know some aspects of the process.
Good luck to you. I know what it's like to lose everything, and I really hope you are able to rebuild some kind of life for yourself.
In 2019, Professor Ron Davis from America reported that researchers had developed a nanoelectronics test that could detect an impedance in white blood cells taken from people with ME/CFS1....
The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID aims to raise awareness, clarify misconceptions, promote understanding, and stimulate discussion among healthcare professionals, investigators, policymakers, patients, and community representatives on the clinical manifestations,...
Mitochondria retain bacterial traits due to their endosymbiotic origin, but host cells do not recognize them as foreign because the organelles are sequestered. However, the regulated release of mitochondrial factors into the cytosol can trigger cell death, innate immunity and inflammation. This selective breakdown in the...
The current approach isn’t working. The government needs to align its efforts with the economic needs of local communities. Over the past two decades, Sumatra’s peatland forests have undergone a significant decline, losing approximately 3 million hectares at an annual deforestation rate averaging 150 thousand hectares. This...
Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome (deep phenotyping study) (www.science.org)
The new work, published this week in Nature Communications, affirms that ME/CFS is unquestionably biologically rooted, says Avindra Nath, clinical director of the U.S. National Institute of Neurological Disorders and Stroke, who led the study. It revealed brain activity differences, along with immune and other abnormalities, in...
Change.org Petition for Millie, an ME sufferer in the UK currently suffering medical abuse (chng.it)
Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm
If you lost half of your income, but got memories of a a version of yourself living a life of leisure with that part of your income every night, would life be better or worse than it is right now?
COP14: UN summit concludes with set of actions to conserve migratory species (www.environewsnigeria.com)
CFS: number of patients is expected to double due to long-term effects of the COVID-19 pandemic: Scientists at MedUni Vienna have now identified possible biomarkers that could improve the diagnosis and treatment (www.meduniwien.ac.at)
The study by Eva Untersmayr-Elsenhuber and her team from MedUni Vienna's Center for Pathophysiology, Infectiology and Immunology builds on earlier research on immune disorders and the intestinal barrier function in patients with ME/CFS. It is well known that ME/CFS patients often differ greatly in the clinical manifestations of...
Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Rohrhofer et al 2024 (full text) (www.mdpi.com)
Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by profound fatigue, post-exertional malaise (PEM), and neurocognitive dysfunction. Immune dysregulation and gastrointestinal symptoms are commonly observed in ME/CFS patients. Despite affecting approximately 0.89% of the...
Anyone else's acceptable temperature going down?
A while ago I moved in with my parents to relieve my wife from having to juggle two kids, the household, her elderly parents, her work and me. And my parents have this fancy digital thermostat I can control from my smartphone....
You were disabled. You're stuck laying down most of the day. What do you do to earn a living and survive?
You were disabled and realize it is not getting better, and no one seems to be able to fix the issue. You’re stuck laying down most of the day, you have enough mobility to function at home, but anything outside of home leaves you in bad shape beyond your control where you are not professionally functional. What do you do to...
ME Research UK and the ME Association announce funding for a study that aims to create a diagnostic test for ME/CFS (www.meresearch.org.uk)
In 2019, Professor Ron Davis from America reported that researchers had developed a nanoelectronics test that could detect an impedance in white blood cells taken from people with ME/CFS1....
Grassroots women spearhead conservation of Kakamega Forest (www.the-star.co.ke)
Kenya Forest Services and the community urged to support tree planting initiatives.
April 3-4 The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID (free virtual registration) (conferencia-emsfc-pos-covid.pt)
The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID aims to raise awareness, clarify misconceptions, promote understanding, and stimulate discussion among healthcare professionals, investigators, policymakers, patients, and community representatives on the clinical manifestations,...
A break in mitochondrial endosymbiosis as a basis for inflammatory diseases (Abstract) (pubmed.ncbi.nlm.nih.gov)
Mitochondria retain bacterial traits due to their endosymbiotic origin, but host cells do not recognize them as foreign because the organelles are sequestered. However, the regulated release of mitochondrial factors into the cytosol can trigger cell death, innate immunity and inflammation. This selective breakdown in the...
How Indonesia Can Better Conserve Sumatra’s Peatland Forests (thediplomat.com)
The current approach isn’t working. The government needs to align its efforts with the economic needs of local communities. Over the past two decades, Sumatra’s peatland forests have undergone a significant decline, losing approximately 3 million hectares at an annual deforestation rate averaging 150 thousand hectares. This...