Dakota Profile picture
Apr 1 5 tweets 2 min read Twitter logo Read on Twitter
The Long Covid Revolution'

'Millions of American adults are impaired by long Covid. They have a vision for what our society owes to chronically ill and disabled people'

thenation.com/article/societ…
"The night before, President Biden had announced that “the pandemic is over.” The protesters knew that this wasn’t true. Long Covid, they argued, is a national emergency."
"#MillionsMissing demonstrations like this one began in 2016 to raise awareness about myalgic encephalomyelitis, an infection-associated complex chronic illness (often abbreviated as ME/CFS). The hashtag alludes to the millions of dollars missing from research into ME/CFS and
the millions of patients who are so marginalized from society that they sometimes seem to have disappeared. In the past three years, there has been an explosion of ME/CFS cases."

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More from @Dakota_150

Apr 3
I understand the nature of NDA’s but I *really* hope the MD’s affiliated w/RECOVER are speaking up to this harmful decision, not just the patients.

This was me days before a virus induced PEM in 2017. The advice I received wrecked my life.

Let’s not make these same mistakes. Image
Please MD’s, “if you see something, say something”

This burden shouldn’t have to fall all on the shoulders on the sick. We will need all the voices to change the harmful narrative that the @NIH refuses to relinquish.

We need to relegate this to the recycling bin once & for all.
I was told repeatedly “you aren’t trying hard enough - keep pushing. There is nothing wrong with you.”

How much more suffering has to be subjected to this barbaric treatment until we collectively say “enough is enough”?
Read 5 tweets
Apr 1
'Long COVID is Real'

'A Look at the Challenging Road to Recovery'

'Patients can be experiencing a number of disturbing, real symptoms....very real and very alerting," explains Alba Azola, MD, codirector of the Johns Hopkins Post-Acute Covid-19 Program'

chronogram.com/wellness/long-…
"Instead of validating the patient's experience and symptoms, many physicians dismiss the patient as if there's nothing wrong with them—which, in my view, is doing harm. So, it's a huge problem. I think the least we can do as physicians is to acknowledge the symptoms and the
limitations of our abilities to diagnose and capture pathology."
Read 5 tweets
Apr 1
Last night, 3 ME patients & a ME/LC expert physician testified at the Health and Human Services Finance and Policy Committee in the MN Senate.

They testified in support of Governor Walz’s Long COVID budget proposal.

Their testimony was reinforced..

🧵
...by a bevy of supportive written testimonies.

Their virtual testimonies begin at:

2:26 minute mark: Director, Minnesota ME/CFS Alliance - Billy Hanlon

2:31: Chair of MEAction MN, Terri Wilder

3:18: President, Minnesota ME/CFS Alliance Suzanne Wheeler
3:37: ME/CFS Clinic Minnesota, Dr. Ruby Tam

Dr. Ruby Tam's testimony:

“I am Dr. Ruby Tam, I am the founder of the ME/CFS Clinic Minnesota. I am also a Family Doctor for over 10 years. Since 2016, I have been treating patients with Myalgic Encephalomyelitis and Chronic Fatigue
Read 17 tweets
Apr 1
'People with smell disorders may get relief with an experimental treatment'

'Is it 'voodoo' or does a procedure called a stellate ganglion block help patients with long Covid-related loss of smell or taste?'

nbcnews.com/health/health-…
"I have had many patients crying in my office telling me that the parosmia — not just the smell loss, but the smell change — is destroying their life," said Dr. Nyssa Farrell, an assistant professor of otolaryngology-head & neck surgery at Washington University School
Some reported that the problem was ruining their sex lives. One person wrote about a partner's "rotten breath." The stench was "unbearable, no matter how hard I tried to put it out of my mind."

Some patients fall into despair.
Read 4 tweets
Mar 31
'Long COVID exercise trials proposed by NIH raise alarm'

'Long COVID exercise trials proposed by NIH raise alarm Advocates ask the US biomedical agency to rethink the design of its RECOVER initiative, citing possible harm and funding waste'

nature.com/articles/d4158…
Sincere TY to the patient advocates for your voice, @exceedhergrasp1 @loscharlos @LisaAMcCorkell @TheCrankyQueer
“In a world where there’s hundreds of things to trial, why are we choosing this one thing that we know has the potential to cause harm to a substantial portion of patients?” asks Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative for long COVID, a research...
Read 12 tweets
Mar 31
'‘We have our work cut out for us’: Raising awareness of pediatric long COVID'

'The medical world has to overcome the perception that children are not susceptible to long COVID, physicians said during a U.S. News and World Report webinar on the topic'

healio.com/news/primary-c…
“We have our work cut out for us to kind of create awareness that this is the real deal,” said Uzma Hasan, MD, medical director of the pediatric post-COVID care program and chief of pediatric infectious diseases at Cooperman Barnabas Medical Center in Livingston, New Jersey...
"These children are really struggling, and if we don't offer them the support in this right time ... it's going to be tougher for them to get back to normalcy.”
Read 8 tweets

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