#postviraldisorder — 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

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

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

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

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

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

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

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

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/

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

#InternationalMEAwarenessMonth #MEAwarenessMonth

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

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

Per #ONS:

“An estimated 1.9 million people living in private households in the UK (2.9% of the population) were experiencing self-reported #LongCovid (symptoms continuing for more than four weeks after the first confirmed or suspected #coronavirus (#COVID19) infection … as of 5 March 2023”

#PostViralDisorder

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/30march2023

#BhupreshPristy (following earlier comments I previously tooted here) tweeted on 30.03.23:

“#MECFS #LongCovid You don’t have to wait long. We will present our work in Berlin & Hinxton meeting. As always, we believe in functional & meaningful, data driven biomedical research that can make sense for understanding complex molecular processes. Let’s dive deeper this time.”

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralDisorder

For German-speakers, yesterday evening #ORF (the #Austrian equivalent to the #BBC) in their news-programme #ZeitimBild, broadcast an item on #MyalgischeEnzephalomyelitis.

I have to say I cried a few tears. I cannot imagine the BBC’s main news even making such an item.

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

https://tvthek.orf.at/profile/ZIB-2/1211/ZIB-2/14173239/Kaum-Hilfe-gegen-chronische-Erschoepfung/15367043

“Pandemic or no, [#Cochrane are] hoping no one is looking too closely at their promise.

…

There IS an answer out there. It WILL be found. I’m an optimist.”

Alicia Butcher Ehrhardt, #pwME, author

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MECFS #LongCovid #PostViralDisorder

This in response to David Tuller’s blog of 21st March:

https://www.virology.ws/2023/03/21/trial-by-error-what-the-hell-is-going-on-with-cochranes-long-delayed-re-review-of-exercise-therapies/