Tom Kindlon · @tomkindlon
773 followers · 2007 posts · Server disabled.social
New pre-print from Taiwan:
How post-infection status could lead to the increasing risks of #chronicfatiguesyndrome & the potential mechanisms: A 17-year population-based Cohort study
"The findings of this study demonstrate the association between CFS and infection with common pathogens, including bacteria, virus and fungi"
#MyalgicEncephalomyelitis #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness #MEcfs #CFS #PwME #MyalgicE
#chronicfatiguesyndrome #MyalgicEncephalomyelitis #postviralfatiguesyndrome #postviralsyndrome #pvfs #PostViralIllness #mecfs #cfs #pwme #myalgice
Tom Kindlon · @tomkindlon
575 followers · 998 posts · Server disabled.socialMay 5 press release:
"NIH study identifies features of #LongCOVID neurological symptoms: Findings offer insight into biological mechanisms, pointing to possible treatments"
This in-depth study was run by Avi Nath who also is leading the in-depth NIH ME/CFS study using a similar format
@longcovid #longhaulers #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness
#LongCovid #LongHaulers #covidlonghaulers #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #postviralfatiguesyndrome #postviralsyndrome #pvfs #PostViralIllness
Tom Kindlon · @tomkindlon
567 followers · 932 posts · Server disabled.social
"Self-Tracking to Do Less: An Autoethnography of #LongCOVID That Informs the Design of #Pacing Technologies"
Free
https://dl.acm.org/doi/pdf/10.1145/3544548.3581505
#EnergyManagement #Spoonie #EnergyConservation #MEcfs #CFS #PwME #MEeps #PostViralFatigueSyndrome #PVFS #postviralillness @mecfs @longcovid
#LongCovid #pacing #energymanagement #spoonie #energyconservation #mecfs #cfs #pwme #meeps #postviralfatiguesyndrome #pvfs #PostViralIllness
Tom Kindlon · @tomkindlon
562 followers · 896 posts · Server disabled.social
I have just donated to David Tuller.
I only get to read some of what he writes these days but it’s reassuring to know he's keeping a close eye on the output from those from the biopsychosocial viewpoint who have caused so many problems over the years
Donate link: https://bit.ly/40kHhkY
@mecfs @cfs @longcovid #MyalgicEncephalomyelitis #myalgice #pwme #PwMEs #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #CFIDS #PostViralIllness #PostViralSyndrome
#MyalgicEncephalomyelitis #myalgice #pwme #pwmes #pwmecfs #pwlc #LongCovid #PostCovid #PostCovid19 #cfs #cfsme #cfids #PostViralIllness #postviralsyndrome
Tom Kindlon · @tomkindlon
535 followers · 723 posts · Server disabled.social2/
2. Use validated tools and instruments to appropriately screen all patients who report cognitive symptoms after COVID-19.
3. Current practices to treat ME/#CFS can help guide treatment recommendations for #longCOVID–related cognitive symptoms.
4. Using an individualized patient-centered approach when choosing the appropriate treatment will help meet the patient's needs.
#postviralsyndrome #pwLC
@longcovid @mecfs @cfs #pwme #mecfs #PostViralIllness
#LongCovid #postviralsyndrome #pwlc #pwme #mecfs #PostViralIllness
Tom Kindlon · @tomkindlon
535 followers · 722 posts · Server disabled.social🧵
Good to see the prestigious CDC recognising the overlap:
“Treating #LongCOVID Brain Fog With ME/CFS Guidelines”
https://www.medscape.com/viewarticle/989887
(may require free registration)
1. Cognitive symptoms, commonly referred to as brain fog, occur in people who had COVID-19, no matter how severe their infection
@longcovid @mecfs @cfs #brainfog #postviral #PostViralIllness #postcovid #brainfog #MyalgicEncephalomyelitis #foggybrain
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#LongCovid #brainfog #postviral #PostViralIllness #PostCovid #MyalgicEncephalomyelitis #foggybrain
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
“How to help friends and employees living with #LongCovid” (people with #MEcfs would also appreciate such help):
Headings:
- Be compassionate
- Help out around the house
- Help set up medical appointments
- Respect their comfort levels
- Reach out
- Implement work accommodations
- Donate to research
- Participate in research
etc.
https://edition.cnn.com/2023/03/09/us/iyw-how-to-help-long-covid-wellness/index.html
@longcovid #postviralfatigue #PostCovid #PostCovid19 #cfs #PostViralIllness #pasc #pwlc
#LongCovid #mecfs #postviralfatigue #PostCovid #PostCovid19 #cfs #PostViralIllness #PASC #pwlc
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.socialOne year post Covid & my brain functioning still hasn't returned to normal. ☹️
Other possible changes are not so clear-cut given my #MyalgicEncephalomyelitis
Best to avoid Covid infections/re-infections if can. I had had 3 vaccinations (one 10 weeks before) so that didn't "save" me
#LongCovid #PwLC @longcovid #postviral #PostViralIllness #postviralsyndrome #covidbrain
#MyalgicEncephalomyelitis #LongCovid #pwlc #postviral #PostViralIllness #postviralsyndrome #covidbrain
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social10/
“Post-exertional malaise in the first few months after a viral infection is usually a red flag for ME/CFS.”
#postviralillness #postviralsyndrome #postexertionalmalaise #mecfs #cfs @longcovid
#PostViralIllness #postviralsyndrome #postexertionalmalaise #mecfs #cfs
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social🧵
“Research review suggests #longCOVID may last indefinitely for some people and mimic other ailments”
https://medicalxpress.com/news/2023-01-covid-indefinitely-people-mimic-ailments.amp
On the recent comprehensive review paper by Hannah David et al.
#postcovid @longcovid #postviral #postviralsequelae #postviralillness #mecfs #cfs #pots
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#LongCovid #PostCovid #postviral #postviralsequelae #PostViralIllness #mecfs #cfs #pots
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
New from Poland:
Study examining the prevalence of 8* out of the 9 symptoms of #CFS (Fukuda criteria) following #Covid19.
CFS symptoms tended to be higher in women (similar to CFS itself which is more prevalent in women)
Free:
https://onlinelibrary.wiley.com/doi/10.1002/brb3.2849
*all but cognitive symptoms
#LongCovid @longcovid @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #postviralillness #PostViralFatigueSyndrome #PostViralSyndrome #PVFS
#cfs #COVID19 #LongCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #PostViralIllness #postviralfatiguesyndrome #postviralsyndrome #pvfs
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social2/
""Isolation in #longCOVID comes in various forms and it's not primarily just that physical isolation," says Yochai Re'em, MD..."A different yet equally challenging type of isolation is the emotional isolation, where you need more emotional support, connection with other people who can appreciate what it is you are going through without putting their own needs and desires onto you — and that can be hard to find"
@longcovid #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness
#LongCovid #postviralfatiguesyndrome #postviralsyndrome #pvfs #PostViralIllness
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
🧵
From:
"COVID Isolated People. #LongCOVID Makes It Worse"
May require free registration
Re'em is a psychiatrist
https://www.medscape.com/viewarticle/985983
I think similar things in the quote & elsewhere in article, would apply to #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome.
Good to see two psychiatrists in this article making perceptive ponts
#postviralillness #PostViralFatigueSyndrome #CFS @mecfs @longcovid #MEcfs
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#LongCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #PostViralIllness #postviralfatiguesyndrome #cfs #mecfs
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
New:
"ME/CFS and Post-Exertional Malaise among Patients with Long COVID"
Free full text:
https://www.mdpi.com/2035-8377/15/1/1
"Among the 465 participants [with #LongCovid], 58% met a ME/CFS case definition"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs #longhaulers #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness
#LongCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #covidlonghaulers #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #postviralfatiguesyndrome #postviralsyndrome #pvfs #PostViralIllness
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social"Potential New Treatment for “Brain Fog” in Long COVID Patients"
https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/
Not a placebo-controlled trial but still interesting esp. given this #MEcfs study:
"N-Acetylcysteine Alleviates Cortical Glutathione Deficit & Improves Symptoms in #CFS: An In Vivo Validation Study using Proton Magnetic Resonance Spectroscopy"
https://www.s4me.info/threads/n-acetyl-cysteine-nac.3913/#post-414561
@mecfs #PostCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #postviralillness #MyalgicE #PwME #PwLC
#mecfs #cfs #PostCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #PostViralIllness #myalgice #pwme #pwlc
Tom Kindlon · @tomkindlon
303 followers · 112 posts · Server disabled.social
🧵
Sympathetic TIME article focusing on #PostCovid & #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome with quotes from Lucinda Bateman, @virusesimmunity & Nancy Klimas
“It Isn't Just #LongCOVID. Post-Viral Illnesses Are More Common Than You Think”
https://time.com/6240058/post-viral-illnesses-common-long-covid/
#MEcfs #PwME #CFSME #CFIDS @mecfs #postviral #PostViralIllness #PostViralSyndrome #postviralfatiguesyndrome
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#PostCovid #MyalgicEncephalomyelitis #LongCovid #mecfs #pwme #cfsme #cfids #postviral #PostViralIllness #postviralsyndrome #postviralfatiguesyndrome
Tom Kindlon · @tomkindlon
287 followers · 89 posts · Server disabled.social2/
“Lucinda Bateman…has been treating and researching [#MyalgicEncephalomyelitis] for more than three decades. “I can tell you from our close assessments that many people with #LongCovid become severe enough and chronic enough to meet these criteria [for ME/#CFS],” she says. ‘So I would consider them SARS-CoV-2 induced ME/CFS.’”
@mecfs #ChronicFatigueSyndrome #PostCovid #PostCovid19 #PwME #PwMEs #meeps #postviral #PostViralIllness #CovidLong #COVID_19 #covid #COVID19 #COVIDlonghauler
#MyalgicEncephalomyelitis #LongCovid #chronicfatiguesyndrome #PostCovid #PostCovid19 #pwme #pwmes #meeps #postviral #PostViralIllness #CovidLong #COVID_19 #covid #COVID19 #COVIDlonghauler
Tom Kindlon · @tomkindlon
287 followers · 88 posts · Server disabled.social
🧵
“What patients find at #LongCovid clinics: rejection, outdated therapies, and unanswered questions: Roughly 16 million Americans are living with long COVID, but many are not getting the right medical care. One way to improve the system is by letting patients lead”
https://www.popsci.com/health/long-covid-care-chronic-illness/
I thought this was good, with lots of sympathetic & informed comments about #mecfs
@mecfs #cfs #pwme #MyalgicEncephalomyelitis #PostCovid #PostViralIllness
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#LongCovid #mecfs #cfs #pwme #MyalgicEncephalomyelitis #PostCovid #PostViralIllness
Tom Kindlon · @tomkindlon
253 followers · 48 posts · Server disabled.social"9 tips for surviving Christmas with ME/CFS/PVF*" (2014)
http://www.eat4.me/9-tips-for-surviving-christmas-with-mecfspvf/
*Post-Viral Fatigue
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #NeuroME #Spoonie #LongCovid #PostViralFatigueSyndrome #PVFS #postviralillness @mecfs
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #NeuroME #spoonie #LongCovid #postviralfatiguesyndrome #pvfs #PostViralIllness
kate · @haven4books
82 followers · 137 posts · Server disabled.social
I'll be working on these for awhile (reading is tiring), but they're topically interrelated, with Osler's Web focusing on #MECFS history and The Long Haul on #longCOVID. #PostViralIllness is also discussed more broadly to an extent.
#EpsteinBarr #amReading #books #MEAction #RyanPrior #COVID #COVID19 #NIH #PatientLed #lyme #disability #NEISvoid #postCOVID #epidemics #PatientScientists #pwME #PEM
#weekendreads #mecfs #LongCovid #PostViralIllness #epsteinbarr #amreading #books #meaction #ryanprior #covid #COVID19 #nih #patientled #lyme #disability #NEISvoid #PostCovid #epidemics #patientscientists #pwme #PEM