Purple_Shaman @purple_shaman@qoto.org
ME/CFS x 10 yrs. Oncology doctor.
Battery half empty, glass half full
Joined Nov 2022
Purple_Shaman
boosted
Whoa, this quality of life study comparing ME/CFS to other illnesses...
Source: https://journals.plos.org/plosone/article/figure?id=10.1371/journal.pone.0132421.g003
Purple_Shaman
boosted
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(Please BOOST!)
Purple_Shaman
boosted
⬆️
At David Tuller's talk yesterday, I was reminded of:
-how important his work is
-how good he is at highlighting & challenging problematic statements
-how glad I am that I've been able to pull back from such work
So happy to be able to support him
https://crowdfund.berkeley.edu/project/43450
Hashtags:
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PwLC @IrishMECFSAssociation
I'm not sure I would read too much into some of these findings. It looks like the study assumes a diagnosis of long COVID if someone had a cough or back pain or any of the 30 odd symptoms they associated with long COVID. Less than 10% of what the study counted as 'long COVID' actually had a diagnosis of long COVID by their doctor.
If you have a pre-existing condition, you're more likely to mention a cough or back pain etc. even though you're going to the doctor for a different reason.
Purple_Shaman
boosted
@tomkindlon @longcovid @mecfs
https://www.bbc.co.uk/news/health-69040592
It is the lightening process...
I think this chart could be really useful. Partly because it is attractively laid out and easy to follow, and partly because I have an issue with the severity scale from the NICE guidelines. In the NICE guidelines, mild disease includes anyone who can work, even part time. I would argue that an illness which prevents you from working more than 10-20 hours a week over the long term is not mild.
It's a shame that the chart forms part of another paper, rather than being the focus of a paper on its own.
Purple_Shaman
boosted
2/
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
from:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full
#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs
A randomized open-label clinical trial on the effect of Amantadine on post Covid 19 fatigue
@NilaJones @trendless @longcovid
Interesting study. Some notes:
-Only 31 patients in each arm
-No placebo control
-No objective measures of fatigue. (Self- reporting of fatigue can be unreliable - this will be influenced by a 'placebo effect' in the intervention group)
-Longer term follow-up might have been useful to see if the effect is maintained.
-The control arm had a higher BMI so might be expected to recover more slowly to begin with.
-A patient who couldn't tolerate amantadine was excluded. (It might have been better to keep them in the analysis - to show 'real life' results.
Note:
'COVID-related fatigue' in this study refers to fatigue 30-60 days post infection (so a bit different from long COVID).
Amantadine was previously tried in ME/CFS. Of 30 patients, half couldn't tolerate an 8 week course. In the remaining 15, there was no difference in symptoms.
Purple_Shaman
boosted
I'm surprised they didn't do two day CPET, that's pretty much the gold standard test for ME/CFS exertion intolerance now.
Also seems like the battery of tests they did would exclude anyone with severe or even moderate ME? A bit disappointing! We really need more studies examining the severe cohort.
But the confirmation of previous findings is something.
Purple_Shaman
boosted
I've read a draft. It reconfirms previous findings, pushes back on pervasive medical misinformation & reports a few things that, to my eye, look new. But I don't think there's anything really earth-shattering in there. The researchers have come up with an overarching hypothesis for the illness, but they're doing so based on 17 patients...so that's a little dicey.
Now NIH has to follow through with clinical trials. The paper has some ideas for drugs to try. They need to do so.
/end
Purple_Shaman
boosted
@mecfs For about a year, depression and anxiety have been tough for me. I’ve tried medications, and had to stop each one due to side effects. Medications were not very effective prior to #MECFS but fewer side effects. I wish I knew why I can’t seem to get relief and I wonder if it’s a symptom of #MECFS, if maybe it’s because fatigue makes it harder to emotionally regulate, or maybe it’s due to neuroinflammation. Maybe it’s a form of #AutisticBurnout? #ActuallyAutistic @actuallyautistic
Purple_Shaman
boosted
Purple_Shaman
boosted
Blood transcriptomics reveal persistent #SARSCoV2 RNA and candidate biomarkers in #LongCOVID patients
https://www.medrxiv.org/content/10.1101/2024.01.14.24301293v1
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #longCovidChat
@covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain @auscovid19
1/
"Kumar and Clark" is the main textbook for many medical students.
I hadn't realised it still places ME/CFS in the psychology chapter and recommends graded exercise therapy, along with derogatory descriptions of patient characteristics.
Please sign this petition asking the authors to update this misleading information.
#mecfs @mecfs
Purple_Shaman
boosted
3/
Press release:
"Tiredness experienced by #LongCOVID patients has a physical cause"
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
@covid19 #Coronavirus
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #COVIDBrain
@auscovid19
Purple_Shaman
boosted
Recording now available for NIH conference: "Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from #LongCOVID" (day 2 = Dec 13)
https://videocast.nih.gov/watch=52738
See image for agenda including speaker list
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19
@halcionandon @chronicpain @mecfs @longcovid
Naltrexone will block the effect of buprenorohine (or any other opiate). I don't think the two are an ideal combination.
This could be really important. Long term damage to mitochondria after infection would explain much of the symptoms that long COVID (or ME/CF) sufferers experience.
Purple_Shaman
boosted
Study reveals how #SARSCoV2 alters mitochondria, leading to energy outages and organ failure
> An interdisciplinary #COVID19 International Research Team found that SARS-CoV-2 alters mitochondria on a genetic level, leading to widespread "energy outages" throughout the body and its major organs.
Core mitochondrial genes are down-regulated during SARS-CoV-2 infection of rodent and human hosts
Purple_Shaman
boosted
Press release:
CSPI sues EpicGenetics, maker of test for fibromyalgia, for false and misleading claims
Updated: October 4, 2023
