Kaiser ME Neglect

Nearly 200,000 ME/CFS + Long-COVID DISABLED, severely ill Kaiser patients with no informed or experienced medical care. This is negligence on a massive scale.

[Kaiser ME Neglect @KaiserMEneglect]

@FranceyME That's toxic positivity.

I'd tell him "crash" is poetry:

Think of a car crash: the brutal impact,
the wallop of pain, the suffering,
the extremely limited mobility,
the inability to do things you love,
the endlessness of exhaustion
for which even exhaustion is too kind a word.

[Dr. Lucky Tran @luckytran]

Note that NYC switched to a more sensitive COVID wastewater detection method in March. But per Dr. David Larsen who runs the dashboard, this isn't responsible for the increase. So likely uptick is due to real world COVID spread.

(Reported by @Gothamist: https://t.co/gczq77vmLc)

[Emily Chatelet Brossard @EmilyCBrossard]

@sunsopeningband @Naomi_D_Harvey @mrjasonroy @LongCovidComms @D_Bone @LongCOVIDPhysio @PhysiosForME .
Yours is an enormous job then, to turn around the rusty old tanker that is Kaiser & pivot it towards finally giving 130,000+ ME/CFS pts medical care, when Kaiser's dangerously neglected that for years.
No #MECFS physicians in network;
no referrals out.
Hell.
@KaiserMEneglect

[AMA @AmerMedicalAssn]

New data shows that food workers who showed up while sick or contagious were linked to about 40% of restaurant food poisoning outbreaks with a known cause between 2017 and 2019. Learn more @AP @CDCgov. https://t.co/jW7KpJWU4y

[Biomedics MECFS @BiomedicsMECFS]

SEEKING INPUT on treatment for extremely low Natural Killer cell function in #MECFS patients.

IVIG, Cuvitru, Interluekin-2, Ampligen, B Cell treatments, others?

Immunologists, authors, journal articles, MDs, studies...

@OpenMedF @LBatemanMD @ngklimas @RedefiningMECFS (photo)

[NYT Science @NYTScience]

Medicare officials are proposing to tighten oversight over private Medicare Advantage plans. “The proposals in this rule we feel would really meaningfully improve people in Medicare’s timely access to the care they need,” one official said. https://t.co/pItXuiYGSX

[Kaiser ME Neglect @KaiserMEneglect]

PATIENT STORY (thread):

Exposing the Abuse and Continued Medical Neglect of ME/CFS Patients at Kaiser Permanente:

Lori, severely ill & disabled with ME/CFS,

Despite her asking, her illness has gone untreated for years and years.
Kaiser has repeatedly denied her medical care.

[Biomedics MECFS @BiomedicsMECFS]

@aboutKP All right, then, "If the shoe fits:"
See changes in CAPS.

"We're calling upon calling KAISER'S health care leaders
to commit to #MECFS health equity, which directly impacts YOUR 150,000+ UNTREATED SEVERELY ILL ME/CFS PATIENTS' physical and mental health."

Stop your hypocrisy.

[Lisa Hire @LisaHire]

I have had to give my @kpthrive (Kaiser) doc CDC and NIH info about #MECFS repeatedly. @kpthrive, one of the largest healthcare org in nation, has neglected #MECFS and has failed to keep doctors up-to-date.

[Mary Garrido @3boyzzforme]

@BernardJTyson @Benioff Patients with #mecfs need to be listened to, acknowledged, and provided with medical care options through referrals to out of network #mecfs specialists. Shame on #KaiserPermanente for denying us. No option to #thrive. What about us?@kpthrive @PermanenteDocs

[Do The Right Thing. Help Others. @KaiserNoWay]

@KaiserMEneglect I'm just one #pwME whose #MECFS is not treated, but 100,000 Kaiser Patients #pwME are super-sick & @PermanenteDocs refuse to treat them.
No improvement for years, so this is intentional.
Docs even refuse to write #MECFS into your chart.
@kpthrive. Thrive, what a complete joke.

[Kaiser ME Neglect @KaiserMEneglect]

Horrible: They have coronavirus.
But what's worse: They're at Kaiser.

There's another virally caused severe illness affecting 64-128K Kaiser patients that @kpthrive refuses to treat. #MECFS
Horrible patient suffering IGNORED. @KaiserMEneglect
@latimes @AP
https://t.co/37E5Wq3y9d

[Mary Garrido @3boyzzforme]

@BernardJTyson @Benioff #KaiserPermanente please focus some attention on patients with #mecfs. We are ignored, denied access to specialists. @kpthrive @PermanenteDocs @KPEBMedEd @NIHDirector @aboutKP

[Kaiser ME Neglect @KaiserMEneglect]

Did someone say "malignant indifference" about #MECFS?

They must have been talking about Kaiser @aboutKP @PermanenteDocs
who refuse to treat ONE HUNDRED THOUSAND SEVERELY ILL PATIENTS,
even tho treatments exist.

@DrRichardIsaacs @tedeytan @kpthrive @KaiserMEneglect @MEActNet

[Biomedics MECFS @BiomedicsMECFS]

@TruthAbout_ME2 Have you rec'd any #MECFS medical care from Kaiser Permanente @aboutKP?
They're notoriously bad at neglecting #MECFS, ignoring it or using unqualifed MDs.
In a survey of nat'l healthcare, @kpthrive came in dead last of all providers for #MECFS medical care.
@KaiserMEneglect

[Emily Chatelet Brossard @EmilyCBrossard]

@s4me_info There was no shift:
This was a @kpthrive PR stunt.

130,000 #MECFS pts still being neglected.
Illness is similar to COVID-long.
Gonna ignore that too?

@permanentedocs have no current knowledge of this multi-system illness, unique biochemistry or EBM treatments. @DrRichardIsaacs

[Mary-Jane Kohler MT(ASCP) @TruthAbout_ME2]

I just heard that I'm going to receive my first Moderna shot tomorrow at home from Kaiser Permanente. I've been homebound for 3+ years with #MECFS and I didn't know how I was going to get it.

[Kaiser ME Neglect @KaiserMEneglect]

.
There are nearly 200,000 ME/CFS + Long-COVID DISABLED, severely ill Kaiser patients.

Kaiser physicians intentionally and routinely refuse to treat them, dismissing the severity of their #MECFS illness.

This is negligence on a massive scale.

@KaiserMEneglect
#KaiserMEneglect

[Biomedics MECFS @BiomedicsMECFS]

SAD NEWS.
Our medical group has heard an avalanche of horror stories abt lack of #MECFS medical care from Kaiser Permanente. Severely ill Kaiser patients are suffering from this disabling multi-system illness, but Kaiser, repeatedly, as a pattern, refuses to offer medical care.

[Biomedics MECFS @BiomedicsMECFS]

.
Here, a ME/CFS patient advocator and research analyst, weighs in on the situation:

https://t.co/tDU5MmSku1