liv
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liv

@liv@kbin.social

鐵鉢の中へも霰
teppachi no naka e mo arare

into my
iron begging bowl, too
hailstones

—Santōka Taneda

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...

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This literally happened to me, only I lost way more than half my income.

It's horrible, and frequently remembering the life I had is very painful.

I can't work out what possible upside you think there is to this situation.

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...

liv,
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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?

liv,
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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.

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Our partners are affected horribly by our disease.

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...

liv,
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You may have something different but if you have me/cfs you need to hit up the support groups, you can prove disability with a 2-Day CPET test.

I'm not in the US but many of the Americans in my support group were denied the first time they applied and got it on the second.

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You can also do temp work, English language teaching, proofreading, data entry.

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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.

liv,
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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.

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....

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,...

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Speakers include Lucinda Bateman, Ed Yong, David Systrom, Susan Levine.

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...

liv,
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This is probably somewhat relevant to ME/CFS because of the role mitochondrial dysfunction appears to have in the disease.

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...

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