Purple_Shaman boosted
Bill Tschumy

@3TomatoesShort @mecfs @tomkindlon I wouldn’t put too much stock in what they found. It was kind of a scattershot study where they looked for correlations between a bunch of genetic differences and a bunch of diseases. That may be fine for getting an idea for what to investigate further but in itself the correlations in this study prove nothing. You will always get random correlations in something like this. They often disappear when later restudied.

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Purple_Shaman boosted
*
Ruben Verweij

Long-covid, request for advice 

Friends, I've been more quiet here because I came down with a flu for the last week, on top of my long covid (3yrs) and I'm still trying to recuperate from that and now an extended flu.

This is another setback, while I remain hopeful and positive, I could really use some advice on how to heal. Things I've tried are: GET with a physical therapist (slight negative effect), occupational therapy (positive) and a rehabilitation specialist (positive).

Things I'm doing now to manage/heal include: pacing to prevent PEM, yoga asana (though not currently because of the flu), breathing exercises, meditation, short walks (also not atm) and I work 4x4h remotely, spread over the day to conserve strength (but also not atm).

Please let me know if you have suggestions for treatments/approaches/devices/exercises/you name it that have helped you. I'm also interested in recommendations for who to follow on here to stay up to date.
Boosts to increase reach are appreciated.

My heartfelt thanks for any help you can provide 🙏

Edit: I'm overwhelmed and humbled by your useful advice and support, I appreciate it so much. We have a beautiful community going on here. I'll take a break for today, so I'll reply to any comments later. I wish us all the best and a speedy recovery to everyone!

#LongCovid #Covid #PostCovid #ME #MECFS #CFS @longcovid #Recovery #Illness
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Purple_Shaman boosted
Steve Herman

Actor John Cleese, an avid poster on Twitter/X with 5.4 million followers, says he’s quitting the Elon Musk platform for Substack. deadline.com/2025/01/john-clee

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Purple_Shaman boosted
Indigo (Rainbow system)

Whoa, this quality of life study comparing ME/CFS to other illnesses...

Source: journals.plos.org/plosone/arti

#MEcfs

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Purple_Shaman boosted
jilleduffy

US voters overseas! If you missed the deadline to mail your ballot, check whether you can vote by fax! You can send a fax by uploading documents to a website FOR FREE.

A friend registered in California did it and got confirmation that her vote was counted. Check your voting district!

DO NOT MISS YOUR CHANCE TO VOTE! More info on online faxing services here:

pcmag.com/picks/the-best-onlin

(Please BOOST!)

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Purple_Shaman boosted
Tom Kindlon

⬆️
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

crowdfund.berkeley.edu/project

Hashtags:
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PwLC @IrishMECFSAssociation

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Purple_Shaman

@tomkindlon @longcovid

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.

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Purple_Shaman boosted
Matthew.Dodwell

@tomkindlon @longcovid @mecfs
bbc.co.uk/news/health-69040592

It is the lightening process...

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Purple_Shaman

@tomkindlon @mecfs

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.

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Purple_Shaman boosted
Tom Kindlon

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:
frontiersin.org/journals/immun

#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs

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Purple_Shaman

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.

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Purple_Shaman boosted
thermonuclear small claims

@tomkindlon @mecfs

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.

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Purple_Shaman boosted
Brian Vastag

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

Show thread
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Purple_Shaman boosted
ImmedicableME

@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

Show thread
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Purple_Shaman boosted
Tom Kindlon

A failure, but I'm going to take it as a win. 😀

Thanks to everyone who nominated me for this, or who have supported me in some other way over the years 👍

#MEcfs #CFS #PwME @mecfs

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Purple_Shaman boosted
Tom Kindlon

Blood transcriptomics reveal persistent #SARSCoV2 RNA and candidate biomarkers in #LongCOVID patients

medrxiv.org/content/10.1101/20

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid #longCovidChat
@covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain @auscovid19

1/

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Purple_Shaman

"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.

chng.it/W5N5TqpPwS

@mecfs

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Purple_Shaman boosted
Tom Kindlon

3/
Press release:
"Tiredness experienced by #LongCOVID patients has a physical cause"

amsterdamumc.org/en/spotlight/

@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

Show thread
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Purple_Shaman boosted
Tom Kindlon

Recording now available for NIH conference: "Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from #LongCOVID" (day 2 = Dec 13)

videocast.nih.gov/watch=52738

See image for agenda including speaker list

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19

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Purple_Shaman

@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.

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