Top Tweets for #notenoughforME
@NINDSdirector If you wish #MECFS patients to believe a single word out of your mouth
* increase ME/CFS funding to 472-600 Million a year
* Fast-track Nanoneedle funding and get us our diagnostic test
* Meet the demands of @MEActNet that were made in 2019
#NotEnoughForME
@NIHDirector .@NIHDirector I am a 21 year #MEcfs long hauler. You forgot to mention the millions of people who never recovered from their infections and have been suffering for decades. #pwME had to become #CitizenScientists.
#CitizenScience #NotEnoughForME #COVID19 #LongCovid
Today is International ME Awareness Day. Please support by RT this pic made of me by @JourneyFog, and by reading and sharing other links I post today. Or click some of these hashtags and READ.
#MillionsMissing
#notenoughforME
#MECFSchallenge
#MyalgicEncephalomyelitis
#MyalgicE
@NIHDirector Francis Collins, today you told Whitney and Matina “I do want you to know that the condition ME/CFS, Chronic Fatigue Syndrome, is of great concern to the NIH." Then #showMEthemoney
$13M is #notenoughforME
#meawarenesshour
We are not giving up.
We will not stop fighting for our lives.
We deserve to get our lives back.
We need to know what this disease of ours really is.
We need more research.
The scientists are there.
We just need money.
#meawarenesshour
#MECFS
@NIHDirector $13M is #notenoughforME
Thank you, Whitney and Matina for standing up for us.
#MEawarenesshour
Today #MEAction protesters in #MillionsMissing t-shirts interrupted Dr. Francis Collins’ remarks to House Appropriations LHHS Subcommittee to demand #NIH take urgent, comprehensive action to stem the crisis of ME/CFS that has been growing unchecked for more than 3 decades.
@NIHDirector Francis Collins, fund ME research comensurate with disease burden. $200M now, not later. $13M is #notenoughforME
#MEAwarenessHour
Our son is so sick with ME/CFS that he can’t talk or eat. He is fed through a j tube and has been lying in bed since 2011. So sensitive to sound He has to wear headphones, unable to tolerate human contact. #MEAwarenessHour
With ME, either you fit it into your minuscule energy budget, or you don't get to do it. How would you like to stop every activity that matters to you, Francis Collins? @NIHDirector
13M is #NotEnoughForME
Read:
#MEAwarenessHour
ME patients experience a worsening of symptoms following ANY activity. This is called Post-exertional malaise (PEM), or ‘payback’. This means that if I choose to spend a few minutes talking to a friend, I’m likely to ‘pay’ for it for hrs, or even days afterwards #MEawarenessHour
@NIHDirector we need $200M research funding, commensurate with disease burden. $13M #NotEnoughForME I am sick in bed 15 years. I want treatment in my lifetime, and your $13M isn't going to get us there. Patients are waiting.
#meawarenesshour. When you have mecfs, the day goes by very slowly, but the months and years go by very fast. Anyone with this disease would understand this.
Life keeps going and we are just watching it go by. NIH FUNDING is needed urgently!!!
@NIHDirector @HenryLouisGates @PBS We need more from you. We have no confidence in your current plan for #MECFS. You are not getting us to success. No timelines, no commitments. Address the stigma. Fund trials. Take action. Lead. We are not going to settle. Listen to the outcry. Do Better! #NotEnoughForME
Dr. Koroshetz doesn't get it! #pwME are #FightingForOurLives yet @NINDSdirector refuses to fund research to end the #MyalgicE health crisis. This is #NotEnough4ME & we won't stop fighting until our demands are met! Sign/share @meactnet petition: https://t.co/wUuJ7k8mJd
@NINDSdirector Your current plan for #MECFS is not enough. We need you to do more. Address the stigma. Fund trials. We are fighting for our lives & we will be heard. We are committed to finding a solution & bringing treatments/biomarkers. We are fighting for our community! #NotEnoughForME
@NIHDirector @fredhutch We need more from you. We have no confidence in your current plan for #MECFS. You are not getting us to success. No timelines, no commitments. Address the stigma. Fund trials. Take action. Lead. We are not going to settle. We are building a movement! Do Better! #NotEnoughForME
It’s the no medical help whatsoever, and the accusations and dismissal of all co-morbid illnesses that come along with this, that makes it such a living hell. #NotEnoughForME #MEawarenesshour #MEcfs #pwME
ME is a living death. I have lived in one room for 28 years, apart from hospital visits. I was a busy, working mother of four. Now I am 98% bedbound all day everyday. Often unable to speak. I have received no useful medical help whatsoever. #MEawarenesshour
@NIHDirector We need more from you. We have no confidence in your current plan for #MECFS. You are not getting us to success. No timelines, no commitments. Address the stigma. Fund trials. Take action. Lead. We are not going to settle for less. We are building a movement! #NotEnoughForME
@JanetDafoe @NINDSdirector @NINDSdirector you need to do more for ME/CFS. Have u any idea what it's like to be bedridden locked away from life with very little social interaction? No you don't. I do though as I have severe ME. Stop looking away #notenoughforME
@NINDSdirector We need you to do more. We have no confidence in your current plan for #MECFS. You are not getting us to success. No timelines, no commitments. Address the stigma. Fund trials. You can take action. Be a leader. We are not going to settle for less.We will be heard! #NotEnoughForME
One of the Millions Missing - The hollow man
Dire stories happen b/c what #POLITICIANS do is #NotenoughforME
#MECFS
@NIHDirector @NINDSdirector
@NHSuk @NICEcomms
@regsprecher
@BMG_Bund @BMBF_Bund
@BAEKaktuell
@vdk_bb @Paritaet
@bzberlin @BR24
https://t.co/p4VrjHm0nq via @ABCNews
That's the life of Ron Davis's son!
Because what you do is #notenoughforME🔥
#MECFS @OpenMedF
@NIHDirector @NINDSdirector
@NHSEngland
@RegSprecher @jensspahn @MelanieHuml
@BMG_Bund @BMBF_Bund
@BAEKaktuell
@VdK_Deutschland @Paritaet @Caritas_web
@bzberlin @BR_Wissen @Dlf_Forschung
.@NIHDirector @NINDSdirector This is the life of Ron Davis’s son. For YEARS! And many others. YOU can do something about this. At Stanford meeting we had 60 top notch scientists eager and full of ideas. What you are doing is #notenoughforME
Who will step up for the #MillionsMissing with this dreadful debilitating disease? Not only have I not gotten proper care from drs and specialists, I have been given advice that has actually hurt me. Others too. #NotEnoughforME
@MikeDeWine @FranDeWine @SherrodBrown @RepSteveChabot @senrobportman Sick 6 yrs with Myalgic Encephalomyelitis #MECFS. Mostly bedbound. Not 1 single ME specialist in the state of #Ohio. Devastating & debilitating disease affecting thousands of Ohioans. Drs don’t know enuf 2 treat
Thank you to all our amazing volunteers that worked hard on this campaign! Thanks to each person that participated!
Our Cards to Koroshetz campaign is the 3rd action in our #NotEnoughforME campaign We are seeking volunteers who are interested! https://t.co/wmsePgr0G7
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