I cannot express how huge this is. Being able to get a diagnosis via blood test is so HUGE. For those lucky enough to have never experienced it, many of the conditions along with #MECFS that they hope this blood test could diagnose with over 90% certainty normally take YEARS to be diagnosed. #LongCovid#fibromyalgia#ms#LymeDisease
These are all life changing illnesses. The quicker you are diagnosed the quicker you can be treated.
I just want to add that treatment does not equal cured for many of us. Treatment can mean different things to different people. For me it was learning how to live in my new body. Learning what pacing means using #SpoonTheory for context. Making a pain management plan with my doctor. Relearning a bunch of dexterity based skills etc.
Quote from an interview with Dr. Asad Khan, talking about Long Covid:
"We worship exercise, and exercise is good for most people, but when you have a post viral illness, it is the worst thing you can do ... and this is not really well known.
So there are other illnesses for example like M.E. (myalgic encephalomyelitis), Long Covid, and Lyme disease, for example, where if you make people exercise they only get worse."
"It's a bit like you charged your phone overnight, and you wake up with 10% battery, but you keep running your phone and doing things it doesn't have the capacity to do. So it's just going to eventually stop working, isn't it? And that's what our bodies are like.
Our mitochondria, which are the energy production factories of our body, they just don't generate enough energy. So flogging those doesn't work."
Journalist Ed Yong continues to cover #LongCovid and #MECFS with immense clarity. This new article is so important. It shows how our traditional understanding of fatigue is totally undermined by these illnesses.
As usual Ed Yong is perhaps the only scicom journalist bringing a true patient-centered perspective to this writing. Please share -- these symptoms aren't mine but they are so wildly debilitating and happening to so many in our community. And our healthcare system and doctors are failing those of us with #LongCovid and #MECFS
We don't care about data: I am an expert in OVER TIME LONGITUDINAL DATA and I've kept symptom logs for months. No doctor has ever looked at this as a diagnostic tool. We don't even bother to record good data: my doctor notes are riddled with errors or their software systems don't have the right labels for long covid, and I watch them input things that don't make sense and symptoms that aren't right.
We have designed a culture in healthcare in which patients must be unfailingly extraordinary, incredibly patient, unbelievably communicative, expertly political, and lucky, at every moment, simply to survive.
"Oxygen extraction by the body’s tissues was compromised in patients who had symptoms of #exerciseIntolerance after #COVID"
"Patients are told that their symptoms are a result of deconditioning, or decline from lack of physical activity.
Our findings contradict that hypothesis."
If you have #LongCovid or #MEcfs and are considering filing a long-term disability claim, this white paper by my old lawyer, Barbara Comerford, is a must-read.
Barbara has been helping people win lawsuits against insurers for three decades now.
She took my case against Prudential to federal court & kicked their asses so hard the judge wrote an absolutely scathing ruling against Prudential that set some precedents.
Some takeaways: LTD carriers are protected by an awful law called ERISA. When claims are denied, a claimant's only recourse is a federal lawsuit with NO jury & NO punative damages.
But you can still win your case. The key is developing medical evidence with objective tests like cardio-pulmonary exercise testing, neurocognitive batteries, and so on.
My last day at work has been scheduled. In just 3 shifts, my 25 year career in #proAudio comes to a screeching halt while I enter the terrifying world of #disabilityInsurance.
All this because I caught #covid19, once, at work, in June 2022, despite having 4 vaccines.
The first 12 weeks were bad. Then I got a little worse each week. My weight tanked. I am 6' 3 and was a little over 200lbs (my normal weight). A year and a half later, I presently weigh 145 and dropping.
I was diagnosed with #meCFS, #PEM, #POTS, and am still having tests (CT, gastroscopy, biopsy) done on my GI.
#LongCovid is very real, and has robbed me of the luxury of clear though, easy movement, and a "normal" life.
Don't get Covid. Don't get Covid again. #WearAMask, please.
American scientists have identified a protein that seems to play a part in chronic fatigue by screwing with the mitochondria ("the powerhouse of the cell", if you'll remember highschool biology).
At least on a petri dish level, they managed to de-fatigue human cells.
This might be an important step for #MECFS and #LongCOVID patients.
And: even before this leads to any therapeutic solutions, I'm strongly hoping that this will produce some sort of standardised test to diagnose chronic fatigue.
Chronic fatigue and Long COVID are primarily "rule out everything else" diagnoses that are diagnosed when there is no other cause to find, i.e. when you've had COVID, are fatigued since then, and it's not any similar diagnosis.
Having some way to diagnose it (similar to MS, which is also often a diagnosis of exclusion, but can in many cases be diagnosed via CT/MRI imaging detecting lesions in the brain) would be a huge step forward, and one less way for doctors to play ye olde "it's just psychosomatic".
"Fatigue is just psychosomatic" is also why a similar study in 2011 didn't follow up on hints that would have led to the same discovery, afaik.
'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'
"I don't think I can remember what it feels like to wake up rested. Every day my entire body is in pain. Having been sick for almost seven years now, I hardly remember my life before” - Becca Thomas
"The very term "chronic fatigue" undermines the severity of the illness, painting an inaccurate picture of cumbersome burnout, as opposed to the debilitating reality, which leaves many bed-ridden or requiring a wheelchair." #MECFS#pwME @mecfs