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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Dec 4
You are very right and I just can't keep silent any more. Even if that's been told to him he deserves to know the true version too. Like all those cfs peeps who might have myalgic encephalomyelitis and not chronic fatigue syndrome.
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Moira Dillon Dec 1
Replying to @DrTedros
Funding for research; all medics educated; harmful treatments GET&CBT recognized as harmful & withdrawn; adoption of 1 gold standard criteria ie ; licensed treatments; expert consultants incl Paediatric; supports for Severe ME; end to delays in diagnosis
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Dec 4
Myalgic Encephalomyelitis M.E.-disease gives me SEVERE PAIN 24/7 and ANNOYING SPASMS Because of INFLAMMATIONS of my BRAIN AND SPINAL CORD I CAN'T FUNCTION like I used to Like having a REAL life ! Doctors use Update
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Nov 30
His work is important and so is that from many others. Looking from all different angels to myalgic encephalomyelitis is what hopefully will give answers.
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Dec 3
Yes very true. Just don't understand this. And it's all over the world the same. Takes so long to get guidelines updated with the ICC criteria and doctors to use the IC primer
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Ekhi Nov 28
Replying to @Ekhi_sasienGain
I could go for "we need a broader view to see the elephant in the room" but you don't need to see the whole Manhattan in that picture!! Do please use ! Even that is broad Or at least let us know WHY are you researching using those extremely-broad criteria 3/3
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Dec 4
We need everyone to use same criteria so it's clear what one is talking about. As also known there are comorbidities with MYALGIC ENCEPHALOMYELITIS Because that's the name of the still incureble disease! ME is not CFS.
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Kathryn Stephens Nov 27
An interesting video looking into the brain and brain stem abnormalities seen in . Glad to see they are using the in their work. (See slide pic.)...
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Colleen Steckel Nov 29
Thousands of us are asking for US HHS to adopt the in a petition at . See new org focusing on ICC. It is time anyone diagnosed with CFS or ME/CFS is evaluated for deserve proper recognition & care
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Nov 26
Thanks for your respond Claire I know all you say. And still I don't think anyone should say it like that. When it hurts people and you know it does. When it isn't the truth and you know it isn't.
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Colleen Steckel 20h
Replying to @DrTedros
and -. Please don't be confused by different criteria. ME is a distinct patient population. All need properly diagnosed using the . See links to detailed info at . We have knowledge - we need it in the hands of our doctors.
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Nov 30
Yep that's very true . That's why so many like the and soon share the happy little moments. ๐ŸŒป๐Ÿ’•
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Dec 3
Replying to @cfs_jo
๐ŸŒˆ๐ŸŒž๐Ÿ’–๐Ÿ’• Stay hopeful! More and more myalgic encephalomyelitis is getting it's name back, research results are coming closer to the center of what and why and how to work towards a cure. ๐Ÿ’™
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Joan McParland Nov 27
While waiting on NICE & new NI ME services, patients are โ€˜fightingโ€™ to help patients & educate professionals on & HR monitoring. Our 1st cross-border & booklet but funded by ONLY
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Nov 29
Replying to @LSharpeUSYD
Also watch After Unrest - (Low sensory version without music ... - YouTube
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Dec 1
Replying to @Petra_ikhebME_
Myalgische Encefalomyelitis Myalgic Encephalomyelitis Encรฉphalomyรฉlite myalgique ๐ŸŒWorldwide we need adequate care We need biomedical research funding, lot's of funding It's not enough for M.E. Petra ๐Ÿ‡ณ๐Ÿ‡ฑ ๐ŸŒท ๐Ÿ’™ Make it better in 2020๐ŸŒ 
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ Nov 26
Replying to @BillieHill64 @Dan_Wyke
For those who can't speak anymore and for those who are still suffering I will as long as I am able. ๐Ÿ•ฏ๏ธ๐Ÿ’™
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Petra๐Ÿ’Ž โœจ ๐ŸŽ๐ŸŽ„๐ŸŽ โœจ 11h
ME/cvs bestaat feitelijk niet Het is Myalgische Encefalomyelitis M.E. wat een ziekte is. Of CVS wat chronisch vermoeidheid syndroom is. Het is de M.E. ziekte die de meest vreselijke symptomen geeft en die niet bij cfs voorkomen. (Even update)
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Humbert ME.'sfc' Nov 29
"Miles de nosotros estamos pidiendo que el HHS de EE. UU. adopte el en una peticiรณn en Vea nueva organizaciรณn centrada en CCI (Criterios de Consenso Internacionales). (1/2)
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It's ME Carolien Dec 3
.: Geld inzamelen om de gedrukte versie van de Internationale Consensus Primer (=handleiding voor medici gebaseerd op de Internationale Consensus Criteria voor ME/cvs) te versturen naar huisartsen in Nederland en zo kennis te verspreiden.
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