#postviralfatiguesyndrome — Public Fediverse posts

#PEM #LeonardJason #DSQPEM2 #Questionnaire

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC

Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.

Link to explorationpub.com:

https://www.explorationpub.com/Journals/ent/Article/1004116?fbclid=IwdGRleAOT9H9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xNzM4NDc2NDI2NzAzNzAAAR476-toqBdRCVEFXatvHemS9Da2SvmcK6S2r_TY13sSQ_YUt8m_n5pD1OM1Zg_aem__CMSqSImOPkVVo2i70V_xA

New factsheet from The Sick Times team:

"What are fatigue and Post-Exertional Malaise (PEM)?"
https://longcovidjustice.org/PEM

3-page PDF:
https://longcovidjustice.org/wp-content/uploads/PEM-LCE-series-2024.pdf

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PostExertionalMalaise #ChronicFatigue #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness

The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.

#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #Virology blog:

https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf

It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #BMJ :

https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177

Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

https://chng.it/bNj7W9bhst

#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:

1. M.E. Is a ‘physical’ (as opposed to psychological) disease;

2. M.E. can cause death;

3. #MEKills

Link to #Virology blog:

https://virology.ws/2024/08/12/trial-by-error-valerie-eliot-smith-on-the-inquest-findings/?sfnsn=scwspwa

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.

Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI

Today, 8th August, is #SevereMEDay aka #SevereMEAwarenessDay.

I have actually managed to write a blog-post this year!

#pwME #SevereME #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Link to Blogger:

https://crippledqueeranglo-europeanranter.blogspot.com/2024/08/severe-me-day-2024-funcap55.html

Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:

#ICD10 #G93point3

#ICD11 #8E49

Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.

#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder

Re #MaeveInquest :

I should have anticipated that all involved would have mentioned how they had since done various courses etc. in order to raise their awareness, knowledge & expertise of #MyalgicEncephalomyelitis #MECFS. If they did, I missed mention… 😡

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

May has been #InternationalMEAwarenessMonth #MEAwarenessMonth, but, alas, I have not been well enough to post nor share much this year. Here is a #poem from a decade ago. Matters have ameliorated slightly in that time, in that awareness has been raised and the issues are within the sights of politicos across the Globe due to #LongCovid.

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Couldn’t find #TheChronicCollaboration are on here, but this is an urgent letter - action prior to 30th April for a UK Parliamentary debate. If you are a #pwME or a carer or an ally, please consider signing the letter - and recall to send the email confirmation!

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

https://openletter.earth/sajid-javid-please-raise-very-severe-and-severe-me-cases-in-your-westminster-hall-debate-a0d1b905

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #PostViralFatigueSyndrome #PVFS #pwLC #LongCovid #PostViralDisorder

#DecodeME one week left to enrol!

Less than two weeks left for #pwME / #pwLC + M.E. to sign up to participate in the once-in-a-generation #DecodeME research. Please consider enrolling.

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #PostViralFatigueSyndrome #PVFS #pwLC #LongCovid #PostViralDisorder

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

Free:
https://assets.researchsquare.com/files/rs-3289981/v1/55890598-6f0d-4f73-a9f4-5349e07baac0.pdf?c=1693414746

"The findings of this study demonstrate the association between CFS and infection with common pathogens, including bacteria, virus and fungi"

@mecfs

#MyalgicEncephalomyelitis #PostViralFatigueSyndrome #PostViralSyndrome #PVFS #postviralillness #MEcfs #CFS #PwME #MyalgicE

Just finished sorting through the last of the stuff removed from my bed-cell one year ago in order to deep-cleanse my room.

And thus a reminder it’s time to re-do! 😂

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

My blog-post for this year’s M.E. events, on what the charities could do to help us.

#InternationalMEAwarenessMonth #MEAwarenessMonth

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #LongCovid #PostViralDisorder

https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

Whether my #Fibromyalgia &/or my #MyalgicEncephalomyelitis, my body is always in #pain (the visualisation below): differing degrees; different places. Always in pain. And no, even with #painkillers, the pain never totally absents itself!

#InternationalMEAwarenessMonth #MEAwarenessMonth

#pwME #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #LongCovid #PostViralDisorder

I am not very techie, so uncertain whether this is a ten-minute-or-so podcast or a radio-broadcast extract. It is all conducted in, for the most part, very clear Austrian-German. The subject matter is the background to the M.E. demonstration in central Vienna.

#InternationalMEAwarenessMonth #MEAwarenessMonth

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #LongCovid #PostViralDisorder

https://www.technikumone.at/internationaler-me-cfs-tag/

@greenway As we move into #WHO ‘s #ICD11, note the new code is 8E49.0 #8E49 and that #MyalgicEncephalomyelitis aka #ChronicFatigueSyndrome aka #PostViralFatigueSyndrome is classified under diseases of the nervous system. 💙

@cjfriess Signature 8276. If the petition reaches 10,000 #UKgov must respond.

#InternationalMEAwarenessMonth #MEAwarenessMonth

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #LongCovid #PostViralDisorder

It may be #InternationalMEAwarenessMonth #MEAwarenessMonth, but here is some good news about M.E.’s sister illness, #Fibromyalgia.

“the immune system and the peripheral nervous system are involved” which could “lead to a whole new array of treatment choices for a disease that desperately needs them.”

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #LongCovid

https://www.healthrising.org/blog/2023/05/10/immune-disease-neutrophils-fibromyalgia/

Herewith this year’s blog-post for #InternationalMEAwarenessDay #MEAwarenessDay, entitled “Pink Triangles, Blue Triangles” on the theme of pro-active, pragmatic support for individual people with M.E. (#PwME ).

#InternationalMEAwarenessMonth #MEAwarenessMonth

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #LongCovid #PostViralDisorder

https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

Perhaps 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. 🙏🏻🌈💕

May 5 press release:
"NIH study identifies features of #LongCOVID neurological symptoms: Findings offer insight into biological mechanisms, pointing to possible treatments"

https://www.nih.gov/news-events/news-releases/nih-study-identifies-features-long-covid-neurological-symptoms

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

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

https://www.omf.ngo/studyme/

"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

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

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

2/
""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

🧵
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

1/

2/

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

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

🧵
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

1/

"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

@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.]