Laura Boné
@2laurabone
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Battling ME/CFS & Long Covid at the moment. Sometimes I'm up. Sometime's I'm down. Maybe I'll do it tomorrow.
Bay Area CA
Joined February 2010
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@oldfshndanne
He stole your last moments together w/your Mom. Unforgiveable. I had an estranged uncle burst into my Mom's room last minute. To clear clear his conscience for being a permanent jerk. He selfishly took those last moments from me to say goodbye to my Mom.
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@DrMBotha
Good doctors don't have time to hang out on Reddit to mock and bitch about patients. Good doctors are too busy treating patients and making time to inform themselves with the latest scientific research."
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@RQELLC
@featherty
PTSD from pandemic is a ridiculous answer from an uninformd doctor spreading propaganda. We informed patients w/Long Covid call it gaslighting. If you've had Covid you should expect that Covid has affected your brain. Early treatment can help a lot. You can do a lot w/out doc
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@luckytran
@ReverendWarnock
The pandemic taught me nobody, President and neighbors included, care that I and Millions of others have disappeared from society, can't work, take care of ourselves or our families & losing homes because we have Long Covid & yr 5 of pandemic still no help, research, or treatment
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@tattooed_bug
My first smile today. Thank you! Doubly so because the moderator was a man. We need more men to do this!
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@dysclinic
Everytime I have a good day or even two, I run around doing all the "things" and start thinking it's time to just make myself exercise again. Then I'm in PEM from doing all the things and realize I can't. Then think if I could exercise, I could do "things" again! I know better!
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@NeurologistMom
Two recent posts from patients who declined to remove mask while unnecessary in ER. One nurse called security, the other threatened the patient w/5150. Psych released but referred for further covid anxiety counseling. We are being forced to fight for basic right to protect.
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@KellyOwens9997
@EM_RESUS
The night Grandma died in hospital. My aunt (her youngest daughter) with Down Syndrome, in mid-teens, was asleep at home in her bed. In the am she came out of her room announcing "Mom came to see me last night. Mom's in heaven!"...then rode her bike announcing it to neighbors
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@NIHDirector
Why are you more concerned with lonliness than you are protecting the public from disability and death? I can survive lonely. Living with pre-Covid ME/CFS and an early Covid infection has destroyed my life.
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@sunsopeningband
@ahandvanish
Bodies lying everywhere in post-advocacy crash w/no 2nd string for backup. Ian Lipkin said at NIH Intramural symposium "You need better advocates." What we need is for medical academia to stop mocking sick patients forced to advocate for biomedical research and care!
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@leurah_
Someone sent Leurah a link to a letter to physicians, written by ME experts. If you can get this to the psych hospital it might help her case. I read the hospital was forcing her do physical therapy 5 days a week?
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@MchP66592467
I carry embarassment that I am ill as well. I also just "disappeared" w/out explanation. Why should we be embarassed? It doesn't make any sense. We were disabled in a pandemic. It can happen to anyone.
Stigma prevails.
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@DisabledDoctor
Diagnosed myself in 2022. Printed out a physician toolkit and sent a video from Open Medical Foundation to my physician. She said "That's it! You have PEM. I'm sorry. They don't teach this in medical school." She then did her best to learn and support me so I stuck with her.
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@DaniBeckman
ME/CFS & LC communities also fortunate and grateful to have a handful of caring, competent scientists, clinicians and journalists. After years of abuse and neglect from medical community. You all provide scarce new science and compassion for people who are hanging by a thread.
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@broadwaybabyto
It's actually a good technique to confront the confronter. Answer the question with the question "Why aren't you masking?" and force them to lay out their bias. "not required to" "Covid is a cold" or "masks don't work" or "I wash my hands"... answer "I mask because you won't"
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@michael_hoerger
So many studies lately revealed to have faulty methodology, many not retracted. I wonder if this was incompetence or deliberately misleading? Will this outrage parents to know children at much higher risk than told? Will they insist on mitigations at school?
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@AaronCa11
You're right. Additionally, these articles that focus on the experience of individuals as their story, do nothing to move public perception. Monbiot's article framing mass gaslighting, abuse and stigmatization of millions of people is far more effective at explaining our plight.
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@I_need_a_razor
I had a huge improvement on LDN. I'll take that 60% improvement while pursuing further solutions. Lots of people do well. Many people do not. There is not ever going to be one magic pill that does it all. Handling inflammation as early as possible is a huge key in treatment.
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..."This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness. This is a nationwide failure to help ME/CFS sufferers. This is the very definition of a major systemic failing.”
#pwME
“Sajid Javid: Labour must deliver on ME as patients suffer without a cure.”
“Former health secretary’s call to action coincides with a landmark inquiry into the death of Maeve Boothby-O’Neill, the eldest daughter of [
@TimesONeill
]”
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@sunsweptforest
We definitely need to reframe that sentence. "In hundreds of studies, the science says....yet a cabal of influential psychiatrists w/deep industry ties continue to cling to their narratives in spite of scientific facts."
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@scott_squires
I masked in busy courthouse. Had to testify. Sitting in busy lobby, attorney says w/annoyance "Do you really have to wear that thing?" Me: "Yes!" Says "Well, I guess if you want to breathe C02 just to avoid a cold!". Me: "Covid disabled me 4 1/2 yrs ago, not a cold!"
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@AnciraBecky
@DrMarjorieRobe1
I am so sorry you are going through so much. We really need to do a patient campaign where we bombard the NIH Director and politicians with photos. This would be really impactful. They're wasting so much time/money.
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@featherty
Covid causes brain damage. Even in asymptomatic people. Gets worse with every infection. This is now a common ailment in part causing executive dysfunction among other problems. Watch also for abnormal fatigue, mood problems. Take care of mitochondria/gut health to improve.
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We owe immense gratitude to Jeannette Burmeister. She has delivered a masterful, well-researched analysis that unmasks serious breaches of the scientific process.
Illuminating the tactics used by NIH researchers to misrepresent key findings on effort preference.
#pwME
NIH’s malicious Effort Preference claim is propped up by a misleading manipulation of the EEfRT and a shameless misrepresentation of the EEfRT data. Read all about it in Part 2 of my new series.
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@danaparish
You're probably already aware of Low Dose Naltrexone (LDN)? If he isn't using opiod medications, he might benefit from extra anti-inflammatory/immune support LDN can offer. I hope all goes well with your Dad.
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@ABrokenBattery
Now there's something we don't hear every day...if ever. Media digging deeper into the ME scandal. She said there was so much interest in the topic that there will be another podcast on this. Well done everyone who called in. All so articulate in adding to the story.
#pwME
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@luckytran
@NYCMayor
Why not ban sunglasses, hats, makeup, baggy clothes....they all help disguise the true appearance of the wearer.
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@drseanmullen
@ToughRoom
@2Newfs
When CDC says "We're now treating this just like any other common respiratory infection" it leads uninformed people to believe the virulance has diminished to a non-threat level so even medical professionals believe there's no longer much threat!
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@TimesONeill
I hope there will be an inquisition into Wessely and associates for perpetuating misinformation and patient harms. I hope you find rest and solace while you await the final report.
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@luckytran
Mask-wearing patients reporting being mocked, threatened, and even confronted w/security and psychiatrists by medical professionals in hospitals and ER's. Yeah, the cops are totally going to get this right.
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@dysclinic
The psychiatric profession seems to be quite predatory toward chronic illness patients. Why does medical profession lend credibility to this quackery in place of medical treatment? Why isn't this considered an embarassment? So much harm being done to patients.
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@JKBurmeister
Great news! Jeannette I'm in awe of the work you did on this, and thankful to all the other advocates as well for pushing back on this study. I have many hopes for positive outcomes, and I'm inspired by your optimism.
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@twoShaws
@JKBurmeister
What makes me angrier is an ME charity invited and platformed Walitt alongside serious researchers and clinicians. Patient funding? It really is a circular profit scheme. Count me out of donations. Or maybe I've been gaslit so much I just can't see the forest for the trees.
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@DissentFu
Out of your entire class, is there not even one parent that would cover this cost for the sake of their children's health? If I had a child in class, I would show gratitude and not allow the teacher to pay for any of this.
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@chydorina
Naps maybe not the best word for this. Sudden, onset crash. Immediate need for sleep. Cannot fight it. 1-3 times/day for me. Early on I was only down for 20 min then back to work. Then it was 1-2 hrs 2-3X/day. LDN stopped this permanently. Root cause? Inflammation?
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@maladyvessel
Not all cognitive dysfunction is the same. You're being rather ableist by suggesting others aren't affected in this way because you aren't. Research has shown Covid impairs the brain in unique ways, in particular inhibition/anger. I and many others have struggled w/this.
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@doyouseem_e_now
I'm more impressed by her than I am anyone who has climbed Everest or won an Olympic medal. What she endured to get there was far more difficult.
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@cbarbermd
Reading between the lines it says "FDA issued last hour demand for more data AGAIN (delay tactic) while Pfizer and Moderna get the jump". "Novavax battling to get its vax approved throughout this devastating Summer wave, but FDA is orchestrating for competing interests."
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We knew this already from ME! How much more $ wasted
@NIH
?!? I support LC Moonshot but tell me you trust
#NIH
w/the $ to do any real research. Send $ to private researchers who do more with less!
#pwLC
@BernieSanders
#NIHRecover
@NIHRresearch
@NIHDirector
#LongCovid
#pwME
New
#NIHRECOVER
research: 25 common lab biomarkers may not be useful for identifying
#LongCOVID
. This finding suggests that patients with the condition might have normal lab results, making reliable biomarkers crucial for understanding the condition.
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@RickABright
Wish I could read it. In the face of emerging pandemic emergencies. I wish these publications wouldn't keep pertinent public health information behind paywalls. Please consider publishing your work so everyone can read it.
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I want to hear the words
#LongCovid
from my President. Trump was hiding virus when I got it 1/2020. Biden is still hiding it now & I'm in year 5. Still no research $, social support or medical care for over 27,000,000 voters. WHY?
#HarrisWalz2024
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@kayewhitehead
Wasp spray works well too. There is also a newer kind of pepper gel spray that eliminates risk of wind blowback into your face. Unfortunately I've had to use all these items to protect myself, and I have used them.
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@BCarfree
You are exactly right. UCSF is in a study and using many scans. It's probably not possible to get spike-free organs anymore. The virus goes everywhere.
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@MECFSNanoneedle
@sunsopeningband
I have pre-Covid ME and one of first Covid infections in California. pwLC should want research to build on ME research instead of this starting fresh nonsense. How many years would they like to wait for biomarkers and treatment? Studies repeating what is already discovered?
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@StephTaitWrites
Stephanie I'm so sorry this happened to you! May I ask what state, or willing to name the hospital? We MUST find effective ways to push back on this. Moreover mental health hospitals are shady & have quotas. Easily you could have been committed w/out cause!
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@dysclinic
Thank you for saying this! WHY are there so many poor-quality studies? WHY is there so much published research misconduct? WHY does the same research keep getting done over and over again?!? WHY?!? WHY?!? WHY?!? (not yelling at you, I'm just sick, cranky and fed-up!) 🤦♀️
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@PlanetEarth_HD
I hope you informed the nurse she needs a further education. And you're sorry you wasted your time in that clinic. I haven't even tried to get into one because of all these reports.
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@davidtuller1
I had to look up Esther Crawley's bio. Action for ME has been one of her regular funders, it says. What's up with that organization?
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@Michael59503746
At least in California, with fires burning for months on end, I'll be in fashion!
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@AltenbergLee
Nobody has a problem with her being there with an active Covid infection? She shouldn't have gone. Period. Regardless of what public health policy suggests.
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@JennaACunninham
Just have to give a shout-out to Kaiser in Northern California. Almost all staff masked up today and/or wearing face shields. No patient mandates in the waiting room, but do appreciate the efforts of the staff masking at the very least.
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@queerBengali
You seem politicized & uninformed about Long Covid.
Are we in competition? HIV is less debilitating than ME/CFS & Long Covid thanks to Billions in research. Still, many of us die too. And there is a less than 5% recovery rate for ME/CFS, which Long Covid usually turns into
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@danaparish
@calirunnerdoc
Thanks for saying this. What is obvious to us patients needs to be said by medical professionals. Make it make sense.
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@DeryaTR_
@ruoyun_x
@jjsso0
@jacksonlab
This sounds really exciting. I'm not sure I fully understand it though. Would you consider doing an online interview for benefit of patients to explain the impact of your work?
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@dysclinic
The FND zealots seem to be increasing their aggressiveness to "own" our diseases. So grateful to you for publishing this. It is so unfair we have to work so hard to fight these people. Where are the licensing boards in all this? Why do they get away with this?
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@luckytran
Two years ago I couldn't get a meal in San Francisco because I forgot to bring my stamped vaccine card. Now I can't get one if I want to wear a mask. Great public health messaging...
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@cal_bear_girl
Well, now the President of the United States has Covid. Proving nobody is immune to Covid. I'd say her speech is aging quite well. Covid is still everywhere and it disables far more people than it kills.
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@mediumwhite
People are dying not only for lack of competent medical care. But for lack of funds and physical energy to coordinate informed legal and medical advocacy. Why aren't the charities intervening w/severe patients in crisis?
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@NeurologistMom
It was a mind-bender in the pandemic. To realize that some conspiracies are true. The sins of medical misogyny in decades past is still alive today. Let's make sure we bury it now...
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@NeurologistMom
That wasn't gaslighting. That was working the problem and being open to hearing a witness account on daily life you couldn't witness.
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@dysclinic
That's outrageous! Now I want to read your paper! I guess you can't say who rejected it...
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@DisabledDoctor
It frustrates me that my vote will be viewed as a stamp of approval for Biden. It isn't. He wasn't the worst but I'm really unhappy with him on pandemic and other issues.
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@michael_hoerger
This interview was a double insult to me. I work with electric vehicle / automotive manufacturers. I was supposed to be at that Detroit show, but my career had just ended due to Long Covid. I yelled a big F bomb at the TV that evening!
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@swastrosarah
I am so sorry Sarah. I hope the proceedings expose the failings at every level of the system that harmed you both.
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@elljuna
@Ramyisback
Oooh, very good, keep posting that quote on medical Reddits! I might add that their time might be better spent reading actual medical research on the disease rather than venting on Reddit about patients when it's really their lack of keeping up w/science that is the problem.
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@baddestmamajama
Consider the angle of at least 4 decades of ignored medical research into ME/CFS, Lyme, etc and why we now cannot treat Long Covid. Interview ME Action on history, politics, med research & get lots of footage. History infuriating and needs to be told
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@luckytran
Maybe KKK is exempted...because the people writing the laws are members of KKK? Just a thought...
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@MamaSitaa__
Wow that brings me to tears. I logged in to see and you are doing a GREAT job on your TikTok videos! Thanks for speaking out so eloquently for Long Covid.
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@emilyesfraser
I was also approved on my first try. But what may have helped me is my age (w/in a couple years of retirement age), and I waited over two years since disability to file (since I had no diagnosis). I think younger people filing earlier have a harder time.
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@JKBurmeister
@TurnItUp4ME
@arisonsned
@NIH
In reviewing Nath's interview in American Scientific, where he focuses in on their "key finding" of Effort Preference as a functional disorder, w/all the psychiatric connotations. Claiming patients misunderstand vs public framing its psychosomatic. I won't be "getting over it".
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@AlanBixter
I live in a low crime very tiny old historical western town in California. Last week our local sandwich shop owner was repeatedly stabbed in the neck by a patron (thankfully, he is out of hospital). I suspect Covid has increased violent tendencies of those already prone.
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@mrjasonroy
I offered a link to the PACE study to alert you to common research misconduct into both conditions. Guess you didn't look at it. Moreover, the very sick LC patients who fought for the $ for these studies expected research for drug trials. Not wasting it on mild rehab programs.
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@keithgeraghty
@TheLancet
The Lancet has certainly lost its once stellar reputation and now caters to fringe opinion-based "science." This study is yet another disgusting display of fake medical research being pushed into the mainstream.
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@jzellis
When I was 21 I blew the motor in my '68 Mustang. With a little help I rebuilt it, mostly on my own, in two weeks after work/weekends. I know women who cannot gas up their car or check oil. If you can learn it. Never be dependent for the basics, ladies.
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@Tits_McDick
@molly7anne
Dentists commonly invent problems to fix to meet their profit objectives. I found one, finally, that doesn't. I've been told I needed teeth pulled. Go to a new dentist, and told my teeth are in great shape. In all the years dentists tried to pull my teeth, still got 'em!
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@drseanmullen
I commend you for being willing to step outside the box of your training with behavioral interventions. That makes you a good doctor. Most will cling to their beliefs and training no matter what evidence is presented.
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@CureLongCovid
Just wow. A neurologist that employs magical thinking instead of appropriate testing and treatment. He thinks there's a "very good chance" she'll spontaneously improve over time w/out treatment. Then a doubling-down of medical rejection based on prior idiotic assessment.
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@FatiguedStill
Yes. Also have a now former friend with the "gift of gab" who never takes a break. Funnelling irrelevant "good ol boy" stories at me that make my head explode. Can't break in anywhere. I ended in a screaming meltdown asking him to stop! Couldn't interrupt to even warn him
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@mrjasonroy
@emilyesfraser
Yes, it IS political. Not in the way you're suggesting.
She's being quite accurate and knowledgeable. You are just arguing with people who know better. From a point of not knowing or caring what you don't know about. Pointless exchange I guess.
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@fsociety4sure
@StephTaitWrites
Certainly they should lose licenses but if no training is mandatory, they won't. We've moved into opinion-based medicine and everyone in the profession is just fine with it.
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#JohnVsJonVsME
...oh! She forgot to mention. We have the craziest psychiatrists who have controlled narrative over this 100% biological disease. Who even section and kidnap their patients for torture. If it QUACKS LIKE A DUCK EXPOSE IT!
#helpME
#GreatestMEdicalScandal
There's everything in this
#GreatestMEdicalScandal
! I mean, mostly suffering & medical neglect & abuse, but also misogyny, conflicts of interest, media manipulation, an actual KNIGHT... We're counting on you
@iamjohnoliver
!
#JohnVsJonVsME
@lastweektonight
@Charleswmwilson
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@emilyesfraser
So she's in pain and her rights have also been taken away to seek treatment elsewhere after being denied treatment. This is unreal. This poor woman. We have to get her out of there.
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@chronicallybeee
Covid continues to surprise the researchers & those of us who are chronically ill. People think if symptoms are mild, they're healed and life goes on. If they only knew the damage even a mild asymptomatic infection can cause down the road.
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@Danny08886934
I prefer no treatment vs inappropriate, PEM-inducing worthless doctor appointments that drain my wallet. I get better advice on X.
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@karenmitchell__
@lovewins11011
Wouldn't being a narcissist be exhausting? How do these people keep up all the acts? How do the know how to be, which lie to tell, and who to target next? Seems like constant juggling.
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@sunsweptforest
That is the truth. I am thinking a lot about needs for trained medical advocacy for severe patients. It doesn't exist. This community is exhausted by trying to save it's own, case-by-case, from a dangerous and dehumanizing medical system.
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#JohnVsJonVsME
I vote for BOTH too! This scandal is so HUGE I think it's going to take two to handle it. Crack open those quack psychiatrist jokes! They are giving you GREAT MATERIAL! It's so real it practically writes itself!
#GreatestMEdicalScandal
Trying to choose between John Oliver and Jon Stewart to cover the
#GreatestMEdicalScandal
! … Why don’t we have BOTH?!
#JohnVsJonVsME
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@StenHelmfrid
Well said. Though you humanise Sharpe by suggesting he just doesn't "get it". In defiance of decades of biomedical research. His positions and actions are a well-calculated construct motivated by profit, prestige, and power. He demonstrates a sadistic glee in mocking patients
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@DisabledDoctor
What state will you be practicing? I'm sure the community will love to support you.
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@JKBurmeister
@TurnItUp4ME
How do we protest/find expert analysis to attack the obvious flaws in this study? NIH says this study will become the basis for all their future research. Presumably, for everyone else's, too. Bad research on top of bad research. We deserve better.
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@ibrake4ants
She's only concerned about how it impacts her and her kids. Being out in public with symptoms she thought were a "bug", and still not even acknowledging w/any shame spreading Covid to likely hundreds of people in their public exploits. A % killed or disabled. Oh well. UdoU!
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@linakhanFTC
@FTC
Non-competes have long been banned in California. I was shocked to discover most of the country has non-competes, preventing people from leaving jobs or even working after being fired for a year! How could this have ever been legal? Anywhere?!?
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Leurah is on last thread. Please help us help Leurah. She need medical advocacy and a specialist or two to step in. She is being stripped of her proper diagnosis. Psychologized, exercised, starved and tortured in Ohio!
#pwME
#pwLC
#LongCovid
#MECFS
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@DrZedZha
I have ME/CFS. Given the amount of gaslighting, misdiagnosis and lack of care I have received. No, I no longer trust doctors or system. I'm cordial, pretend to but my life is on the line. They're so often very wrong enough to harm me. This is why we have to Google...
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@karenmitchell__
I belong to a patient community w/ME/CFS & Long Covid. We are severely harmed by a cabal of influential psychiatrists who for 40 yrs have hijacked our 100% biological disease (worse than HIV, Cancer, MS) to psychologize it, block medical research & disability benefits. 1/
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@JessicaLexicus
Wow, they put the "talking and breathing" dead last on the "close and intimate contact" list. WHO, CDC really like to downplay the airborne threat. From here on out I will assume everything is airborne!
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