LC/ME Apr 2022 | ME, when triggered by SARS-CoV-2, is a subset of Long COVID | Repeated triggering of PEM leads to lowering of baseline | 🏳️🌈 | 🇮🇪
Amsterdam, The Netherlands
Joined January 2015
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Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment.
Brian Fog retweeted
Bekijk het rondetafelgesprek Long Covid PAIS in de Tweede Kamer live vanaf 13:00
Link in tweet hieronder👇👇
Doing text boxes on IG stories and putting genuine effort into the posts feels like sitting down in a room in front of all the people you’ve ever known and they just stare at you and don’t react at all.
"Stop calling us 'PAIS patients.' Patients receive care. We are left to fend for ourselves." Good point.
Coverage of the severity of severe ME done in a very upfront and unambiguous way.
Not buried in the article or juxtaposed with a feel good story
Anne lebt mit ME/CFS in einem dunklen Raum, komplett isoliert. Sie kann nicht allein essen, nicht zur Toilette – wie hält man das aus? trib.al/QiUFK28
Read this tweet while thinking of how I was looking forward to hotel breakfast in an hour.
The scrambled eggs at a hotel breakfast are 19% water, and they're dyed.
A lot of hotels and cafeterias pour them from a carton of Papetti's Breakfast Blend. The spec sheet reads whole eggs, 19% water, then under 2% of salt, xanthan gum, citric acid, annatto color and natural butter flavor. Papetti's is part of Michael Foods, one of the biggest egg processors in the country.
Every ingredient has a job on a steam table. Xanthan gum holds the added water in the egg so it doesn't weep into the pan. Citric acid keeps the eggs from turning gray or green under a heat lamp. Annatto puts back the yolk color the water washed out. The butter flavor is there because nobody is going to add butter. The carton keeps for 98 days in the cooler.
The plain version from the same company is whole eggs, whey, skim milk, xanthan and citric acid, with almost no added water and half the sodium.
Brian Fog retweeted
Morgen is de PAIS protestwake in den Haag. Om stil te staan bij alle PAIS patiënten en de patiënten die zijn overleden 🌹 Maar ook om op te roepen tot structureel onderzoek en zorg voor deze patiëntengroep. #paisprotestwake #paisinzicht
Update PAIS protestwake a.s. zondag 25 oktober
🕯️ Aanstaande zondag 25 oktober vindt om 15:00 de PAIS Protestwake plaats in Den Haag om stil te staan bij de honderdduizenden patiënten die een PAIS hebben.
➡️ De protestwake vindt plaats aan de Laan van Reagan en Gorbatsjov in Den Haag.
👉 Ben je van plan fysiek aanwezig te zijn? Meld je aan via het formulier: nl.surveymonkey.com/r/R6BS7G…
🎤 Het programma wordt gepresenteerd door Fred Verdult en duurt ongeveer 1 uur:
-Welkom
-Speech: Overlijden aan PAIS
-Speech: Naasten
-Speech: Patiënten
-Een minuut stilte
-Bloemlegging
🌹 Je mag een bloem meenemen om neer te leggen voor iemand met een PAIS die je mist, ook als diegene er nog is.
📹 Er is geen professionele livestream. Op instagram zal iemand van het account maskblocnl met een mobiele telefoon een livestream starten. Enkele dagen na afloop zullen er foto's en videobeelden beschikbaar zijn.
❗️Kom alleen naar de locatie in Den Haag als je belastbaar genoeg bent, of vraag een mantelzorger of naaste om aan te sluiten. Er zijn waarschijnlijk geen stoelen of andere voorzieningen aanwezig.
De PAIS Protestwake wordt door twee patiënten en drie naasten georganiseerd. Long Covid Nederland is geen organisator, maar wij steunen dit initiatief van harte. Wil je meer weten? Volg dan PAISprotestwake op de socials.
#PaisProtestwake #LongCovid #PAIS #TweedeKamer
Not enough focus on the hopelessness here. People aren’t just exhausted; they’re suffering and hopeless and many are “choosing” euthanasia, while
no one takes accountability.
Opinie: Een jaar na het eerste PAIS-protest in Den Haag is het nog steeds donker
volkskrant.nl/columns-opinie…
#longcovid #longcovidnieuws
Brian Fog retweeted
im just horny but at the grocery store yesterday, I thanked a man in front of me for putting that stick between our groceries on the conveyor belt, and he looked directly into my eyes and said, "you're very welcome."
Brian Fog retweeted
pwME, what has been most helpful for your cognitive PEM, asking for a friend who has 2 kids affected?
Please RT
This was a nice little manoeuvre wasn’t it?
There used to be American English and British English options once upon a time.
Now there’s just English, native language of the US.
Brian Fog retweeted
If we could drop the word ‘fatigue’ from being the leading definition of #ME it would make a huge difference to the whole perception of this illness. People don’t die or take their own lives because they are fatigued. The name CFS was a political decision, a very dark decision.
Brian Fog retweeted
Rund 11.000 Euro für die ME/CFS-Forschung. Und es wird weiter gesammelt.
Am 23. Oktober haben sich Schülerinnen und Schüler vom Bundesrealgymnasium Seekirchen, der HAK.HAS Neumarkt und der HLW Neumarkt am Wallersee gemeinsam auf den Weg gemacht: von ihren Schulen bis nach Zell am Wallersee. Jeder Schritt für Menschen mit ME/CFS.
Danke an alle, die den Walk organisiert haben, die mitgegangen sind und die für Essen und Getränke gesorgt haben.
Allein in Salzburg leben rund 5.000 Menschen mit ME/CFS, darunter auch Kinder und Jugendliche. Jeder Euro unterstützt die Forschung, damit für sie und alle anderen Betroffenen eines Tages wirksame Behandlungen entwickelt werden können.
Gespendet werden kann noch bis Ende November:
WE&ME Stiftung
IBAN: AT95 2011 1842 5439 4200
BIC: GIBAATWWXXX
Verwendungszweck: Spendenlauf Wallersee
Den Endstand teilen wir anschließend mit euch.
Den Beitrag aus „Salzburg heute“ seht ihr hier: on.orf.at/video/14344786/161…
Fotocredit: julescheler.com/
Brian Fog retweeted
We're happy to share that we now have an MP briefing live (joint with Action for ME) which you can send to your MP to give them all the info they need to support @BethDobbin in her campaign for increased ME research funding.
You can find the briefing and our template 👇
Who needs a delivery when there’s a Delivery Plan?
A pretty generic, non-commital response to @BethDobbin letter to @andyburnham
A key problem of the Delivery Plan (which doesn't deliver) is that it's used as policy theatre to ensure change doesn't happen on the scale that is needed. 1/4
ALT Screenshot of a statement from a Department of Health and Social Care spokesperson responding to concerns about ME. The spokesperson acknowledges the devastating impact of ME and says the government is committed to accelerating research and treatment. The statement highlights genetic research, a clinical trial investigating potential treatments, and the government’s ME/CFS Delivery Plan, which it says it remains committed to implementing.
