Top Tweets for #CountMECFS
When you deny a #MECFS patient a #MECFS diagnosis you are bullying #MECFS patients.
We need patients to be diagnosed:
- to be counted
- to be made visible
- to be available for research
- to access the resources they need
- to understand their own battle
#CountMECFS
@davidtuller1 @PutrinoLab Erasing #MECFS is not insightful.
It's prejudice, pure and simple.
Erasure of #Covid19 #LongCovid and #MECFS cannot be justified or rationalized.
It means that #MECFS patients won't be available.
It's wrong. It's unscientific.
#CountMECFS CountLongCovid CountCovid19
I am coming up on 4 years indoors because of #SevereMECFS.
4 Years since I saw the sun.
4 Years since I had my glaucoma checked by a doctor.
So yes, I think a #MECFS diagnosis is relevant and should be given to people who have it.
#CountMECFS
@PutrinoLab It means that #MECFS will not be counted, that a #MECFS patient will not be seen, and that the #MECFS global emergency will not be realized.
Good Science asks of you one thing as a scientist.
Tell the truth. Be honest. Count everything.
#CountCovid19 #CountLongCovid
#CountMECFS
Last chance to complete the survey - closes today at 1pm
https://t.co/JKD818ACKn
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid #pwLC #pwLongCovid #CountMECFS #CountLongCovid
#CountMEin Campaign - The survey closes Today - Monday 31st July at 1pm.
Don't miss your opportunity to be counted and be heard
Complete the survey here: https://t.co/JKD818BazV
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid
CountMEin survey - Closing date 31st July 2023 at 1pm. - only a few days to go!
Don't miss your opportunity to be counted and be heard.
Take the survey here:
https://t.co/o4ewd1xhLZ
#pwME #MyalgicE #MyalgicEncephalomyelitis #PostCovid #pwLC #pwLongCovid #CountMECFS #CountLongCovid #CountMEin
Thank you to everyone who has taken part so far in our #CountMeIn campaign by completing the survey and/or sharing their lived experiences with us.
The campaign closes on 31st July!
Check out the latest news on our website to read Penny's story: https://t.co/yxIE2wjMG7
CountMEin survey - Closing date 31st July 2023
Take the survey here:
https://t.co/JKD818ACKn
#pwME #MyalgicE #MyalgicEncephalomyelitis #PostCovid #pwLC #pwLongCovid #CountMECFS #CountLongCovid #CountMEin
Many of you shared your personal experiences with us in response to our #CountMeIn campaign.
Thank you to everyone who has taken part so far.
This is Sarah's story
There is still time to take the survey and/or share your story with us
https://t.co/2SchhZOf7B
#pwME #MyalgicE
Count ME In Campaign - Please complete the survey…..
Be counted, be heard. Long Covid is here, and the need for appropriate care and support is abundantly clear!
https://t.co/o4ewd1xhLZ
#pwME #MECFS #MyalgicE #PostCovid #pwLongCovid #pwLC #CountMECFS #CountLongCovid #CountMEin
Count ME In Campaign – Please take the survey...
Be counted, be heard. Post Viral Fatigue Syndromes are not new, funding for healthcare services is long overdue!
Complete the survey today:
https://t.co/o4ewd1xhLZ
#pwME #MECFS #MyalgicE #PostCovid #pwLongCovid #CountMECFS #CountLongCovid #CountMEin
Count ME In Campaign – Please take the survey...
Be counted, be heard. Healthcare for ME/CFS and Long Covid needs improvement. Complete the survey and join the movement!
Take part here:
https://t.co/o4ewd1xhLZ
#pwME #MECFS #MyalgicE #PostCovid #pwLongCovid #CountMECFS #CountLongCovid #CountMEin
A small favour to ask .....please share as widely as possible.....
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelits #LongCovid #PostCovid #pwLongCovid #CountMECFS #CountLongCovid #BeCounted #CountMEin
Count ME In Campaign – Take the survey today! Please RT
If you have symptoms or a diagnosis of #MyalgicEncephalomyelitis/ #ChronicFatigueSyndrome or #LongCovid, please complete the survey so we might better understand how you are affected.
https://t.co/o4ewd1xhLZ
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid #pwLongCovid #CountMECFS #CountLongCovid #CountMEin
@MEFoggyDog @DHSCgovuk @SteveBarclay @wesstreeting In BOTH cases, the Govt should
#CountLongCovid
AND
#CountMECFS
How is it so hard to find, probably totally under estimated, NHS prevalence figures for both?
Support groups are still trialing how we can get figures from ICB for ME/CFS, by FOI
So far taken since 3/22
@cbme_mark
Excellent thread #MECFS #LongCovid
#CountLongCovid needs to trend again &
#CountMECFS should start too!
Baroness Scot's powerful speech in the @UKHouseofLords 'Long Covid' debate
🔹#ME has been neglected, dismissed, ridiculed & under researched for far too long
🔹Not a new clinical entity
🔹No diagnostic test for LC or ME
🔹1/4 mill #ME now joined by 2 mill with #LongCovid
Was es in der Schweiz offiziell nicht gibt oder bzw. nicht geben darf, kann schliesslich auch in keiner Statistik auftauchen, nicht?
Wieviele verschwinden einfach, als ob es sie nie gegeben hätte?
#CountLongCovid
#CountMeCfs
#MillionsMissing
2/2
The UK thinks there are about 260,000 ppl with #MyalgicEncephalomyelitis here, but no one has ever officially counted.
Why not? 🤷♀️
Please #CountMECFS
The UK thinks there are about 260,000 ppl with #MyalgicEncephalomyelitis here, but no one has ever officially counted.
Why not? 🤷♀️
Please #CountMECFS
When the EBV vaccine comes out and if it is effective, we might get to know if EBV is responsible for #MECFS too (no matter the triggering infection).
If it is the culprit, the incidence of ME/CFS (new cases) will significantly drop. This is why we really need to #CountMECFS.
@ka_ashy @DecodeMEstudy Exactly, and I would imagine the existing figure of around 250k is a gross underestimate as the no hasn't changed in over a decade?
I wonder the best way we could #CountMECFS? The coding on most pwME's medical records is unlikely to be accurate. @MEFoggyDog
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