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In case anyone needs this.
This people.
Life should not have to be this hard.
#MECFS
@dysclinic @IhabFathiSulima @DrScomaME_CFS @DrJBhattacharya @dr_todd @BatemanHorne @MEActNet @minadjenkins @brian
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Kristina Osobka
7.2K posts
Kristina Osobka
@ChronicallyTina
Founder of the ROCK ME Project. Wife, Cat mom, Author, Advocate, and medical DUMPSTER FIRE. Living life one SPOON at a time. ME is a DISEASE not a LIFESTYLE!
Michigan, USA Katılım Haziran 2017
1.7K Takip Edilen1.3K Takipçiler
@Kristinartz "You may or may not have had a heart attack". Sent me home without considering a cardiac cath. Turns out... I did have that heart attack and ended up with stents a couple years later. He blew me off because I have a myriad of other diseases and conditions and thought I was lying.
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What's the most unprofessional thing a doctor has ever said to you?
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@AetherFox_ @HenryFordHealth Inappropriate editorial comments, flat out LYING in notes, patient blaming, and more inappropriate and damaging comments.
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@ChronicallyTina @HenryFordHealth Out of curiosity, what sort of things have you found in their clinical notes?
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I have even seen it where other doctors bully patients in retaliation for calling out their bad behavior. I'm looking at YOU @HenryFordHealth I encourage people to read their clinical notes. You would be amazed at the editorial commentary & biases. Again, looking at YOU HF.
Patients with Power@PtsWithPower
It's horrific the way that doctors cover for each other, using medical jargon to hide the truth. And the way that for medical concepts, a doctor's word holds so much weight and a non-doctor's has next to none. Anything you say as a non-doc has to be verified by a doc likely to cover for his mates.
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My thoughts go out to Tulsi Gabbard and her family, as her husband battles this serious health problem. I hope and pray that he makes a speedy and full recovery.
While the circumstances around her departure are deserving of our sympathy, let’s be clear: Tulsi Gabbard’s only positive contribution to our nation's national security is her resignation.
She politicized intelligence. She dismantled critical agencies keeping Americans safe. She weaponized the IC to pursue baseless election fraud claims. And more.
We must ensure that her tenure — marked by a devotion to the person of the president and not to the security of the country — represents a terrible exception at DNI and not the new normal.
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@ompsychiatrist @TTExulansic Not fair that patients get mistreated, ignored, laughed at, labeled w/ a FND when they are profoundly sick? Modern Psychiatry treating physiological diseases where people SUFFER like they are attention seeking? YOU make your money by treating patients like that. THATS NOT FAIR.
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As a psychiatrist I see this regularly - patients with ME/CFS, Long COVID and hEDS who have real trauma from being dismissed and disbelieved by doctors for years. Their pain is genuine.
I do have a problem though with the term 'clinician-associated traumatization' (here iatrogenic/Medical PTSD). It feels like it is making clinicians as 'the enemy'. A big part of the problem is the honest uncertainty these conditions create as they often lack clear biomarkers and are difficult to diagnose. We need more empathy and better training on both sides instead of blame.
Neurologist Mom@NeurologistMom
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@ompsychiatrist As a patient advocate for MECFS, the HUGE problem is PSYCHIATRY labeling a PHYSIOLOGICAL DISEASE as a mental health issue.
Lots of diseases do not have BIOMARKERS.
There are MDS who have no business being doctors with the way patients get mistreated. @HenryFordHealth
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Don't expect @HenryFordHealth to treat patients w/chronic illness w/respect or compassion.
Expect to be dismissed, humiliated, FIRED & bullied. Expect to leave appointments disgusted & traumatized. Expect to be blacklisted for having the audacity to report their bad behavior.
Cee@AetherFox_
No, people have full blown, life-altering PTSD from their clinical encounters in which they are dismissed, bullied, humiliated, and taunted, over and over again, for their crime of fighting for their life back. They are repeatedly denigrated by being told it’s all in their head or ‘psycosomatisation’, despite factual contradiction. This is a profound form of gaslighting, epistemic invalidation and threat to sense of self and safety - by its very definition, traumatising. If doctors are unable to engage with patients without psychologically abusing them, they should remove themselves from medicine. If they don’t know the answer to something, they should say “I don’t know”, rather than inventing defamatory little narratives to blame the patient.
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@TiffMoodNukes I can't wait to see this miscreant POS perp walked. He is vermin.
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As a chronically ill person, my experience @HenryFordHealth providers have been traumatic, belittling, stressful & disheartening. Everything from laughing at MECFS DX, gaslighting, FIRING patients, biased clinical notes & bullying. If you are chronically ill HF is not the place.
Solitary Native Bee, PhD@Anon61152358473
Well said!!! "Many chronically ill patients no longer fear only their disease. They fear the healthcare system itself"
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@HenryFordHealth ZERO POTS specialists. ZERO MECFS or LONG COVID specialists & ZERO compassion, caring or patient support for chronic illness. They have shown BLATANT & harmful bias towards these struggling patients. @AmyAndrewsFOX2 @RobertKennedyJr @DrJBhattacharya @Local4News
S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic@dysclinic
I learned today that some clinicians are specifically told by their healthcare organizations NOT to see patients with #POTS. Perhaps it's time to mobilize and organize from a legal standpoint to fight this blatant patient discrimination.
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This happens frequently with @HenryFordHealth . I recommend people asking for your records and read some of flat out wrong, defamatory, biased comments from the medical community. It's appalling.
Cee@AetherFox_
When you see your medical records and they’re full of made-up defamatory nonsense
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@SharonC97936831 @jewstein3000 @loscharlos @ahandvanish @Naomi_D_Harvey @MEActNet @PlzSolveCFS @MEawarenesshour @MassMECFS @BatemanHorne @AmmesAdmin @bhsuborger @exceedhergrasp1 @Myalgic_ME I have been with Dr. Levine in NYC since Dr Lerner died in 2015. I live in Michigan and there literally is no one here. I see Dr. Grubb in Toledo for POTS
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@ChronicallyTina @jewstein3000 @loscharlos @ahandvanish @Naomi_D_Harvey @MEActNet @PlzSolveCFS @MEawarenesshour @MassMECFS @BatemanHorne @AmmesAdmin @bhsuborger @exceedhergrasp1 @Myalgic_ME I’ve never seen that but I did get to 2 ME CFS specialists from the patient community- Dr Sue Levine (NYC); and NSU INIM. By sheer luck .. heard about Dr Mitchell Kurk who practices alternative and traditional medicine (Lawrence, NY).
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Has anyone ever created a directory of ME or LC doctors that patients like?? Or even just a directory?
There’s one LC one online which is a half decade old.
@loscharlos @ahandvanish @Naomi_D_Harvey
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@deborahbrian It's ridiculous. I was more active in advocacy during the Unrest years and the blatant sabotage that was going on at the time apparent has not changed either. It's a whole new generation of this BS. No wonder no one takes us seriously. Seriously.
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@ChronicallyTina Advocacy would be so much easier and more effective without the sabotage, though, too…
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I see the ME vs LC separatists are at it again… 🙄
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@AllisonRFloyd Shocking! You can't stand there long enough to make a can of soup let alone commit homicide. Now they are trying to PSYCHOLOGIZE POTS/Dysautonomia. Do you have a link to any articles on this?
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Oh goodie gumdrops, I just found out about the young woman who committed double homicide and both she and her garbage parents are trying to blame POTS 🫠
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@ChronicallyTina Ugh, how are we still in this mess? 😩
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@mediumwhite @MEAssociation They need to start being RAW & make people uncomfortable. Show us not showered in days, pain, exhaustion, caregivers, PTSD from the medical establishment & the countless friends I have known & loved who couldn't take it & "opted out". @TomKindlon @MEActNet @myalgic @PlzSolveCFS
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I don't understand this. I don't understand why somebody at the @MEAssociation thinks this is a good idea.
What is it about the desperate need for research, understanding, and advocacy which makes people believe that photos of pot plants provide hope?
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@HenryFordHealth 67 MILLION worldwide and not one clinician who deals w #MECFS. Patients are FIRED, dismissed, blacklisted, gaslit, & labeled a WASTE of TIME before we are even seen. Patients NEED care. 67 MILLION. And you have ZERO docs. Why? @AmyAndrewsFOX2 @RobertKennedyJr
World ME Alliance@WorldMEAlliance
ME/CFS is a seriously disabling condition impacting at least 67 million people. Medical education is lacking in most countries. Patients are denied the care they deserve. Consequences are significant. Share your story and the World ME Alliance's Medical Education Hub #EducateME
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@Kristinartz By that logic we can definitely say that people can actually "Smell BS" before it starts.
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Seriously, can people actually "smell rain" before it starts? My grandpa used to say,
"I can smell rain coming"
🤔🤔
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Kristina Osobka retweetledi
@HenryFordHealth does not care about chronic illness patients w/MECFS, LC, Dysautonomia, & more. You get ridiculed, bullied, DISMISSED, Gaslit & blown off because apparently if they see these on our charts, you are automatically written off as a waste of time! @AmyAndrewsFOX2
Cee@AetherFox_
One of the most disheartening things about being discriminated against in the healthcare system is that for many conditions, the knowledge and the treatments are there. They just don’t get applied to you.
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