Advancing recognition, empathy, treatment and support services for Chronic Immunological and Neurological Diseases (CIND) including ME, FM, ES/MCS, CFS
Canada
Joined January 2016
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Action CIND retweeted
Do you write a blog? The #Blog4May12th is back! Include this hashtag in your blog and let [email protected] know so we can post about it. #may12th, #MyalgicE, #pwme, #Fibromialgia , #mcs
Action CIND retweeted
Disappointing to see Professor Paul Garner, featured in today's @thetimes (£) article by @whippletom, still advocating for recovery from serious post-viral illness by thinking oneself better. My blog post from 1 year ago explains more valerieeliotsmith.com/2021/0… via @ValeriEliotSmit
Action CIND retweeted
Exercise duration by itself is not an appropriate functional outcome measure for #pwme and patients with #LongCovid. If we wouldn’t stress test a diabetic with a candy bar, we shouldn’t stress #pwme and patients with #LongCovid using bike and treadmill “exercise-for-time” tasks.
Action CIND retweeted
OMFCA is thrilled to announce that we are funding a new collaborative research project! Conducted across the OMF Collaborative Network, this research initiative will investigate sleep disturbances in ME/CFS. Learn more: ow.ly/Qtyt50Gyr0e
Action CIND retweeted
The @NIH is hosting an #MECFS advocacy call on Oct. 22nd at 1 pm MT. Pre-registration isn’t required, so be sure to mark your calendars: nih.gov/mecfs/events
Action CIND retweeted
"It is hard to describe the thrill I felt when reading the words “now-discredited study” rendered as a normative statement in The Atlantic."
virology.ws/2021/09/24/trial…
Action CIND retweeted
We are repeating in two years what has been taking place over forty painful and horrifying years – at California, USA
Great article by @SarahGraham7 featuring my colleague Kelly Fearnley, @b_m_hughes & myself. Attempts to paint #LongCovid as psychological are in full flow #MECFS #MillionsMissing inews.co.uk/opinion/long-cov…
Action CIND retweeted
Ron Davis’s ME/CFS Collaborative Research Center at Stanford’s annual international Working Group meeting is this Wed-Fri on Zoom. Over 100 great scientists are attending. By invitation only. Exciting! Lots of info, ideas and interactions.
Action CIND retweeted
Update from @JanetDafoe: “Ron Davis’s ME/CFS Collaborative Research Center at Stanford’s annual international Working Group meeting takes place this Wed-Fri on Zoom. Over 100 great scientists are attending. By invitation only. Exciting! Lots of info, ideas and interactions.”
Action CIND retweeted
this is what I've experienced for the last few years writing about ME/CFS. It is heartbreaking. The neglect of this patient population has been profound.
Action CIND retweeted
(1/6): From the desk of Ronald W. Davis, PhD, Chair of OMF's Scientific Advisory Board:
NICE has abruptly paused the publication of its new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. (Cont..)
Action CIND retweeted
To feel seen and understood is a powerful thing. I cried watching this, thinking of all the good it would do.
A shout out to @SimonDecary and @darrenabrown and so many others who are opening doors and educating their peers in a way we have never seen before. 🙏
Our #LongCOVIDPhysio Research Co-Director @SimonDecary shares a message about #LongCOVID #WorldPTDay (part 1)
Action CIND retweeted
In 2019, among young people aged 15-29, #suicide was the 4th leading cause of death after road injury, tuberculosis and interpersonal violence.
▶️ bit.ly/38SqBsz
#WorldSuicidePreventionDay
Action CIND retweeted
In honor of #NationalSuicidePreventionDay, we want our chronic illness community to know that we see you, we honor you, & are fighting for you! You are not alone. If you or someone you know are struggling, BHC has a Crisis Support page batemanhornecenter.org/outre… #MCFS #FM #LongCOVID
Action CIND retweeted
Oh, I love this one, I would put more 🤨🤨🤨🤨🤨🤨🤨🤨 at the end though
EBV --> M.E.
Cytomegalovirus --> M.E.
Ross River virus --> M.E.
Enterovirus --> M.E.
Human herpesvirus --> M.E.
SARS-CoV --> M.E.
[insert any virus] --> ME
Covid 19/Long Covid --> "Something never seen before"
🤨
#ME #LongCovid
Action CIND retweeted
People often do not understand how debilitating #MECFS can be. Professor Ron Davis, Stanford University: ”If you get chronic fatigue syndrome or ME/CFS, your life as you know it’s over. That is really sad, because it hits people at the prime of their life.” #MEAwarenessHour
Action CIND retweeted
COVID-19 is still very much a part of our lives. Special considerations should be taken for treating pw #MECFS and severe #FM should they become sick from the COVID-19 virus. This letter provides basic care considerations w/COVID-19 infection: bit.ly/3zJjHl7
Action CIND retweeted
ICanCME Research Network has launched the 2021/22 New Frontier ME Discovery Grant Program #ME #MECFS #MedTwitter bit.ly/3p0TJ8c
