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
Colin-Roy Hunter · @criquaer
381 followers · 2179 posts · Server mstdn.socialPerhaps I ought to have elucidated that this is not solely for #pwME, but also those with #Fibromyalgia #pwFM, #LongCovid #pwLC, #PostViralFatigueSyndrome #PVFS, etc. as well as healthy folk to act as #controls. Please consider signing up. There is no guarantee one will be selected, but the act of volunteering lends support to this much-needed effort. 🙏🏻🌈💕
#controls #pvfs #postviralfatiguesyndrome #pwLC #LongCovid #pwfm #fibromyalgia #pwme
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
Colin-Roy Hunter · @criquaer
380 followers · 2153 posts · Server mstdn.social
I have signed up to #OpenMedicineFoundation‘s volunteer research-participant register, #StudyME , whereby scientists can locate potential contributors. The sign-up takes approximately five minutes.
I have #SevereME and the last page of text was the most difficult & time-consuming section for me to follow.
#InternationalMEAwarenessMonth #MEAwarenessMonth
#pwME #MyalgicEncephalomyelitis #MECFS
#pwFM #Fibromyalgia
#PVFS #PostViralFatigueSyndrome
#postviralfatiguesyndrome #pvfs #fibromyalgia #pwfm #mecfs #myalgicencephalomyelitis #pwme #MEAwarenessMonth #internationalmeawarenessmonth #SevereME #studyme #openmedicinefoundation
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
555 followers · 866 posts · Server disabled.socialVarsity (Cambridge Uni newspaper): The invisibility of Long Covid has an even longer history
Science student & #LongCovid sufferer Rebecca Siddall takes a historical look at prejudice about post viral illness and hopes history will stop repeating itself with Long Covid.
"I found I existed in a new state, somewhere between healthy and critically ill. But most frighteningly of all – somewhere forgettable"
#LongCovid #PostCovid #mecfs #cfs #pvfs #CovidLong #pwlc
Tom Kindlon · @tomkindlon
551 followers · 832 posts · Server disabled.socialFrom New Zealand:
“This support tool is a series of videos with downloadable information for everyone who has, or thinks they might have, #LongCovid. It will also be useful for people who have other post viral illnesses like ME/#CFS.”
I haven’t vetted but the fact an ME charity created it gives me some confidence.
https://www.mesupport.org.nz/longcovidhelp
@longcovid @mecfs @cfs #PostCovid #PostCovid19 #CovidLong #COVIDlonghauler
#postcovidsyndrome #pvfs
#LongCovid #PostCovid #PostCovid19 #CovidLong #COVIDlonghauler #postcovidsyndrome #pvfs
Irish ME/CFS Association · @IrishMECFSAssociation
121 followers · 709 posts · Server mastodon.ie
2/2
Longer message about this competition where 420 charities will win £1000 https://movementforgood.com/index.php?cn=20100254&ct=health&i=1680527423-83536.jpg&utm_source=holiday+card&utm_medium=social&utm_campaign=M4G2023card&utm_id=M4G2023card
#meawarenesshour #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE #MEeps
@Ecclesiastical
#MovementForGood #PostViralFatigueSyndrome #PostViralSyndrome #PVFS
#meawarenesshour #cfs #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #mye #meeps #movementforgood #postviralfatiguesyndrome #PostViralSyndrome #pvfs
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
Colin-Roy Hunter · @criquaer
233 followers · 2013 posts · Server mastodon.lol@ahimsa_pdx I was fortunate to have both a G.P. (Senior partner) & later a #NHS hospital consultant who accepted that #PVFS, #CFS, #ME - specifically #SevereME - precluded the ability to join in with #GET. I did have a course of general #CBT which helped me immensely to cope with loss of function, etc. Nonetheless, the fact that others were/are forced was/is still unsettling to read or hear about. The other day I had an #AnxietyAttack re such occurring in Germany & Norway!
#nhs #pvfs #cfs #me #SevereME #get #cbt #anxietyattack
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.social2/
Often even within samples of long-term patients who see themselves as having ME/CFS, a percentage don't satisfy ME/CFS criteria for one reason or another at a particular point in time. We are seeing that with @DecodeMEstudy but also in previous Leonard Jason studies
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs #longhaulers #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #PostViralFatigueSyndrome #PostViralSyndrome #PVFS
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #covidlonghaulers #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #postviralfatiguesyndrome #postviralsyndrome #pvfs
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
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
Colin-Roy Hunter · @criquaer
155 followers · 1170 posts · Server mastodon.lol@brokenbattery Pity they stated “chronic fatigue” (R53.82) as this is a #symptom of many illnesses incl. cancers, #Fibromyalgia, #MS, etc. #ChronicFatigueSyndrome aka #MyalgicEncephalomyelitis is a neurological condition per #WHO, per ICD-10 G93.3. This same code is additionally used for #PVFS #PostViralFatigueSyndrome. It puts into question the accuracy & legitimacy of their research! [NB1 I have not cited ICD-11 as this is not yet current everywhere. NB2 US uses different system.]
#symptom #fibromyalgia #ms #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #who #pvfs #postviralfatiguesyndrome
SafetyFirst · @SafetyFirst
317 followers · 1597 posts · Server mastodonapp.uk
RT @ClagueNjc36@twitter.com
A quick skim - The Long Covid self-help guide appears to take the traditional route with a guide to return to physical activity, whereas the Long Covid Handbook appears to be more aware of #pvfs and #ME. Neither seem to mention #pem. Need to read in more detail now @PhysiosForME@twitter.com
🐦🔗: https://twitter.com/ClagueNjc36/status/1591370302050930688