ME/CFS Quotes Profile picture
Nov 12, 2021 10 tweets 11 min read Read on X
Dr. David Putrino is a physical therapist with a PhD in neuroscience. He runs @PutrinoLab at Mt Sinai, which builds state-of-the-art tools to rehabilitate those w/ #LongCOVID & other conditions. 🧵

bit.ly/mecfsquotes-pu…

@MountSinaiRehab @microbeminded2 #PolyBioPodcast #MECFS “I think it’s really import...
2/ The most devastating words for the severely unwell: “Your lab results look great!”

It means science/medicine has nothing for you… or that your doctor doesn’t even believe your suffering is real.

Dr. Putrino’s perspective brings hope.

#LongCOVID #MECFS #MedTwitter “And it’s crazy to me how m...
3/ Rehabilitation can help, but for many it is not a cure. Dr. Putrino offers a counterpoint to all those selling silver bullet solutions, subtly blaming all those who remain chronically ill.

Rehabilitation. Rigorous biomedical research. We need both.

#LongCOVID #MECFS “[Our rehab paradigm] does ...
4/ Doctors are human, but also hold a special responsibility. When it comes to treating chronic illness many need to #dobetter.

#LongCOVID #MECFS #medtwitter “[A] piece of advice I give...
5/ Putrino to fellow medical professionals: quiet your ego and keep working the problem.

#LongCOVID #MECFS #medtwitter "Your ego tells you: b...
6/ Those who are unwell did not choose to be that way. Neglect, or even scorn, from medical professionals multiplies the burden of illness.

#LongCOVID #MECFS #medtwitter “Don't close off emotionall...
7/ Doctors may choose an “easy option” to avoid having to say “I don’t know” but patients deserve better.

Doctors who aspire to a higher standard of care exhibit empathy, courage, and humility to keep working with patients with complex cases.

#LongCOVID #MECFS #medtwitter "So we need to stay th...
8/ Decades of scientific literature and patient reports indicate the harms of exercise in #dysautonomia #MECFS and related conditions.

#LongCOVID #POTS "There’s 20+ years of ...
9/ The sheer number of new #LongCOVID patients exhibiting exercise intolerance may finally turn back the tide of bad science that has led to the mistreatment of so many patients. #MECFS #dysautonomia #POTS "But hopefully there a...
10/ Listen to the full #PolyBioPodcast episode with Dr. Putrino, hosted by Amy Proal @microbeminded2: bit.ly/mecfsquotes-pu… #LongCOVID #MECFS

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More from @mecfsquotes

Mar 20, 2022
1/ While some like Dr. Ian Lipkin are more bullish on there being biological commonalities between #longCOVID (that resembles ME/CFS) and #MECFS, Dr. Maureen Hanson urges caution — and the continuation of dedicated ME/CFS research.🧵 1/ One thing I'd like to caution is the conclusion that common symptoms mean the same underlying mechanism. [Is] Long COVID really the same thing as ME/CFS?
2/ #MECFS #longCOVID #GWI 2/ Many years of study, with more luxurious funding, of Gulf War Illness (GWI) has shown that ME/CFS and GWI are not the same at the molecular level despite considerable overlap in symptoms...
3/ #MECFS #longCOVID 3/ If I had to lay a bet, I will bet that Long COVID and ME/CFS will turn out not to be the same, because there are already not only overlapping symptoms but some different symptoms that people experience with Long Covid that people with ME/CFS don't normally experience.
Read 6 tweets
Jan 23, 2022
1/ Dr. Peter C. Rowe has been the director of the Johns Hopkins Children's Center Chronic Fatigue Clinic in Baltimore, MD since 1996. He has published over 20 studies on #MECFS and #POTS with a focus on pediatric ME/CFS.🧵
@HopkinsMedicine #longCOVID

Photo credit: @mattrothphoto 1/ "The similarity between these [Long COVID] patients
2/ Preliminary findings show biological similarities between #MECFS and #longCOVID, such as reduced brain blood flow. 2/ "[Both Long COVID and ME/CFS] have the reduction in
3/ #MECFS 3/ "If you start off with mono, it makes sense that you
Read 9 tweets
Jan 7, 2022
1/ Dr. @resiapretorius has found signs of vascular pathology, including microclots in the blood, that could be causing widespread tissue hypoxia — potentially explaining the debilitating symptoms in #LongCOVID, and maybe even #MECFS.

Source: bit.ly/mecfsquotes-pr… 1/ "One of the biggest failures during the Covid-19 pan
Read 6 tweets
Dec 7, 2021
1/ Dr. Ian Lipkin is internationally recognized in the use of molecular methods for pathogen discovery w/ 30+ years of experience in diagnostics, microbial discovery and outbreak response. He runs the ME/CFS Collaborative Research Center at @ColumbiaMSPH. #MECFS #LongCOVID 1/ "[Regarding] the stigma associated with [post-viral]2/ "We are very concerned that in the process of invest3/ "[Long COVID researchers need] to look up the ME/CFS4/ "This is a plea... for those of you who would like t
2/ On a recent panel, Dr. Lipkin referenced emerging #MECFS biomarkers uncovered by the Collaborative Research Centers, which may be applicable to #LongCOVID.

He also noted biological commonalities he has found between ME/CFS and Long Covid in preliminary analyses.

Related:
3/ In the past Dr. Lipkin has been known for his role in a $2.3M study (published in 2012) that showed no evidence supporting the theory that ME/CFS is caused by the XMRV retrovirus.

nature.com/articles/natur…
Read 4 tweets
Dec 5, 2021
1/ Excerpts from Francis Collins’s (@NIHDirector) speech from the Accelerating Research into Myalgic Encephalomyelitis conference, April 2019. 🧵

As you said, Dr. Collins: “No action, no hope.” (Apr 2019)

bit.ly/mecfsquotes-co… #MECFS #pwME “I know that we have, in th...
2/ In March 2017, Francis Collins @NIHDirector and Walter Koroshetz @NINDSdirector had committed to “unravelling the underlying biologic cause(s) of #MECFS as swiftly as possible”. directorsblog.nih.gov/2017/03/21/mov… “You should keep pushing us...
3/ “We want to be [the National Institutes of Hope] for ME/CFS” @NIH @NIHDirector #MECFS "We think of the Natio...
Read 5 tweets
Sep 30, 2021
At an @MEActNet press briefing back in March, Dr. Anthony Komaroff confirmed his earlier prediction that we had reason to expect some w/ COVID-19 would develop a debilitating chronic #LongCOVID syndrome with symptoms similar to post-viral #MECFS. bit.ly/mecfsquotes-ko…

🧵 "It is not surprising that some [with COVID-19] develop
Dr. Komaroff suggested that the underlying pathology of #LongCOVID may be similar to problems that have been observed in #MECFS.

Long COVID researchers can refer to ME/CFS research across the past few decades for a substantial head start. "It’s my bet that Long Covid is going to prove to be
ME/CFS: a final common pathway that can be triggered by different things?

#LongCOVID #MECFS "ME/CFS, my guess, is an illness with a final common pa
Read 10 tweets

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