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@kibrightly @lyme_x did he appeal? # & #tbdwg haven’t done s… to get #lymedisease recognized as #disabling. there is a special ruling for #cfs & #lyme causes it, so that ruling spells out exactly what qualifies u for #disability & most #longlyme patients have all those & #cfsme. |
many # events are free and open to the public! keep an eye on any upcoming events and check out any ones you might have missed here: https://t.co/dezv7iyzdl https://t.co/bdihgulnwq |
@lyme_x for 5 years #’s given #lymedisease patients false hope & kept them waiting for change that will remain delayed as the narrative of “the science is controversial” keeps being pushed by the same feds that have kept that narrative going for 40 years sit at the #lyme-x table. |
@lyme_x # has ignored patients for a year when they ask how will the new #lymedisease tests in the #diagnosticschallenge be validated? will use the #cdc’s acute-only (weeks 4-6) & 71% false negatives #lyme test or cdc’s lyme serum (not from the sickest, from cdc-positives)? 4/ |
@lyme_x # invites federal agency #lymedisease reps to their round tables & other meetings that even last year said “the #lyme test works because it tells us what we expect”. expected after 40 years of telling #doctors not to test & to use 71% false negatives acute only test! 3/ |
@lyme_x # bridging the trust gap? when what it is- is disguised? 1st it looked like a nonprofit, then a partnership, now lingo to make it appear a neutral non-fed entity (that just allows the feds to say we didn’t say that)-but who hires the contractors that run ? #hhs https://t.co/hzfimubqzt |
@lyme_x # claims to be bridging the trust gap when it doesn’t listen to or answer patients. it published #lymedisease is merely “disruptive” instead of disabling & didn’t call for the feds to issue a special #ssdi #disability ruling for #lyme. 1/ |
the #: bridging the trust gap webinar featured inclusive strategies and emerging technologies for patient-driven research & innovation in tick-borne diseases. watch it here: https://t.co/iczjw6cirg |
@lyme_x then- given # is #hhs, why doesn’t hhs put out a public service announcement admitting the #cdc #lymedisease test is acute only (weeks 4-6 after bite) & results in 71% false negatives- & that many have been disabled & made chronically ill when left undiagnosed & untreated? |
@tjantv @de @codadrea @venitroll omg |
#dyk: # focuses on including lyme diseases patients and the community at every step of the #innovation process? read more about the partnership and our focus areas: https://t.co/pfxy98bb9y https://t.co/at6s4azgtf |
# is #hhs! who trusts the hhs #cdc or #nih still? what do they have to do? make testing of a serious disabling illness that causes x hundreds of other illnesses fail so they can push a #vaccine & use misdiagnosis to make billions for #bigpharma? they’ve done that. #lyme |
curious to how # started and the history of community-led lyme innovation? check out our historical timeline from 2015 to today: https://t.co/0sd1kmzaj0 https://t.co/m9zv4gxu47 |
looking for our past work including the health+ #lyme human-centered design report and the roundtable: bridging the trust gap summary? all previously published # reports are available to read on the website: https://t.co/pfxy97uy7y https://t.co/8ren2bvyyx |
invisible int’l is supporting several teams that are applying for the diagnostics prize through its “tick-borne illness diagnostics development incubator.” one team mentor is amanda elam, phd, and ceo/cofounder of galaxy diagnostics. read more: https://t.co/xumvi11bum https://t.co/yskfprmrrq |
why aren’t we seeing this acknowledged by the #tbdwg or # ? cause both are controlled manipulations of #lymedisease medicine? @lyme_x #lyme |
@lyme_x, patients don’t want the feds in charge of #lyme medicine. the feds (# is #hhs) have been manipulating #lymedisease medicine for 40 years so that people can’t get an accurate test, diagnosed, treated, etc. there is no way patients would benefit from more fed-control |
@jgownder failure to mask has
sucessfully created disabled people.
we saw this coming!
let's all hope,
gets fully funded, asap!
https://t.co/jrevelfa5j |
into its 5th year now, & the #tbdwg doesnt provide the searchable database required & that their website says is required. that #hhs’s job? @khoney #lymedisease is disabling, #, not just disruptive. #lyme @lyme_x |
# is #hhs - the federal health agencies create or control orgs and fake orgs to keep patients silenced with “waiting to see if this/that will finally make a difference.” #lyme #lymedisease |
@kylegriffin1 @msnbc $ fully fund$$$
# innovation accelerator
a moonshot, 2cure cancer? @podus
will accelerate #lyme innovation progress and strategically advance tbd solutions, w lyme pts, advocates & diverse stakeholders across academia, nonprofits, industry& gvmt https://t.co/77bktdsmsg |
@mildanalyst initiative |
how #tbdwg & # are setting us up for 4 more decades of #lymedisease medicine’s not evolving? when they recommend efforts fall under the control of #hhs, #cdc, or #nih, giving continued control to the very people that have caused 4 decades of #gaslighting & undiagnosed #lyme |
if @lyme_x is independent of #hhs how about real & informed #lymedisease patients have decision-roles (in the majority, not like #tbdwg) in # & every # meeting be streamed & recorded so #lyme patients can hear what drives decisions? |
what is #tbdwg & # actually doing? 5 years into tbdwg & several years into #hhs starting # (it’s not independent when #hhs started it & contractors running it are hhs’s) & doctors are still having their licenses taken away for treating #lymedisease. #lyme @lyme_x |
@healthcaremonth @timkaine , as a component of a larger moonshot, is identifying, developing, and implementing advancements in lyme disease care — including next-generation diagnostics. |
@healthcaremonth @timkaine the lyme innovation accelerator (), a partnership between the u.s. department of health and human services (hhs) and the steven & alexandra cohen foundation, is the world’s largest public-private partnership for lyme disease. |
#hhs has said they created # to control all research money, private & federal. see how @cdcdirector’s husband suddenly gets federal grant $ after she gets her job. he starts an org & gets a grant when it’s existed less than a year? #lyme med manipulation makes #bigpharma $ https://t.co/z6ebodkwqi |
@de @iammi11846805 @ninahrx ok abi🥰🥰 |
@khoney @farid__jalali when will #hhs, #cdc, & #nih deliver the truth? having a 3rd party (…. whatever # is) working on behalf of hhs isn’t transparent. says they listen to patients but won’t answer our questions. #tbdwg is suppose to have searchable database but doesn’t. not transparent. |
@de w |
@vsinanxd @marvnabi https://t.co/xwteaf5acl |
getting an accurate #lymedisease diagnostic is so important! thank you @ @cohengive for this important work! we hope you get some great concept papers today!
@bayarealyme @texaslyme @coloradoticks @realmalachowski @khoney @liv_lyme @projectlyme |
@senwhitehouse needs cash to match donors!
# |
# #lyme disease diagnostic submissions are open til 5pm 8/8/22. diagnostic competition will award $10m in prizes in phase 1. public-private partnership @hhsgov @cohengive seeks innovative lyme diagnostic solutions https://t.co/vhnvpyyt1x |
from expert webinars to tools for patient-centered design, # has curated a range of resources to support #diagnosticsprize entrants as they finalize their submissions. concept papers are due by 4:59 p.m. et on august 8: https://t.co/4omxhuapq4 https://t.co/atpfu7zd95 |
@lyme_x how will the #lymedisease test be validated? we haven’t gotten a reply on that even though # is suppose to be patient centric & we’ve not heard you explain the tests will have to be validated & if use #cdc #lyme test or serum they will appear to have 2 many false positives |
@beauxreliosis @karen98randomly @projectlyme @johnshopkins @longevitymag “right!”, that’s what’s wrong with millions undiagnosed & misdiagnosed that have #lymedisease. 5 years into the #tbdwg & however many # has been working for control of all #lyme research money & the cdc site still says this stuff. |
# is #hhs & the ignore patients but say they are working with us. they don’t answer questions- i think because they have no good answers, the #lymedisease coverup & #lyme for profit #bigpharma profit (off misdiagnosis) is still their agenda. |
following the #diagnosticsprize virtual information session on june 16, the # team answered questions from attendees. you can find a summary of questions and answers here: https://t.co/9nzdex7wvn |
tezted will compete at the diagnostics prize with its unique diagnostic tool for tick-borne diseases!
https://t.co/jwa2xhtnuk
https://t.co/ojfyc4i4n6
#
#diagnostics
#lymedisease
#tickbornediseases
#diagnostics
#tickplex
#tez_ted https://t.co/obnrhu3hi2 |
@ajackso63831215 @lyme_x why doesn’t # answer our questions? they claim to be patient-centric yet ignore us & publish #lyme is just disruptive instead of disabling! |
@hhs_ash @hhsgov or does this #communityengagement look like #, with #hhs making it appear it’s a 3rd party non-profit that engages with patients when it’s controlled by hhs & instead of listening to #lyme patients it published #lymedisease is merely disruptive instead of disabling? |
@lyme_x @cohengive if looking at the # diagnostic challenge u should ask how they will determine if your test works or not. it has to be m assured against something & #cdc test & serum will make it look like good tests have too many false positives. want your work doomed? |
@lyme_x # still isn’t saying how the new tests will be shown to work or not work. #lyme patients have asked you address this issue & you’ve remained silent. using the #cdc test or serum will make them appear to have false positives. they have to be shown to work. so what’s up? |
on june 16, 2022, the team provided an in-depth overview of the # diagnostics prize & discussed the #lymediagnosticsprize's goal to accelerate development of #lyme disease diagnostics. watch here: https://t.co/wtmcqi4zl4 |
@lyme_x #- u don’t answer our questions but claim u are patient-centric. how will #lymedisease tests get validated? not the judgement criteria-the validation part-it works or not. cdc’s test=71% false negatives & every study requires a positive cdc test so won’t study the sickest |
@de my is gay |
@holylawler @igenexlab i hope they don’t use the #cdc 71% false negatives #lyme test or the cdc fake lyme serum (from those who don’t get that sick) to validate those tests. #hhs said they created # so they could control all federal & private research $. best 2 keep the feds & # out of it. |
i’m sick of the #tbdwg & # not immediately stopping this from happening over & over & all over the country (even the ne)- even though you aren’t an acute case, we have to run the cdc #lymedisease test cause these positive bands on the @igenexlab test are true. it’s bs! |
@lonnisaurus @de hat game |
missed the june 16th webinar where the # team gave an in-depth overview of the #diagnosticsprize? highlights and a recording are available here: https://t.co/pccngmcyxf |
@lonnierhea @jutraslab @lyme_x yes, per america competes act, which is us law that applies to all federal innovation prizes — not only @lyme_x
submit through your us institution or collaboration
diagnostics prize $1m phase 1
all solvers wanted! #lymeinnovation #
faqs https://t.co/ucefh0ohr4 |
@jutraslab @lyme_x @hhsgov @lymenews @lyme yes, you can!
just need to submit your @lyme_x application through an institution like virginia tech or collaborate with us citizen
see faqs for the diagnostics prize with more info on eligibility and $1m phase 1, accepting applications until 8/8: https://t.co/ucefh0ohr4 |
@lyme_x @cohengive & who will the #diagnosticsprize judges be? since #hhs runs # & hhs put sood (at dearborn & told the public ridiculously false #lymedisease misinfo for years) & an #aldf advisor this year (hhs used wormser & shapiro to control the vote & tbdwg info b4)-there’s no trust |
@lyme_x y won’t you answer-how will the #diagnosticsprize be validated? # is run by #hhs & hhs is still putting trolls onto the #tbdwg to control the vote & report to congress to keep #lyme truth from coming out. will cdc serum or 71% false negatives test be used to validate? |
@sthetixofficial hello you know how make it show 256gb ? |
@ajackso63831215 @lyme_x great way for #hhs to perpetuate the #lymedisease #bigpharma collusion scam to keep people from learning they have #lyme-keep new tests that work from being approved. # is hhs. hhs controls the #tbdwg & lyme medicine by putting an anti #longlyme troll on to control the vote |
@lyme_x if # is accelerating #lyme medicine innovation why is it taking u so long to tell us how the new #lymedisease tests in your #diagnosticchallenge will be validated? using #cdc’s 1. acute-only 71% false negatives test or 2. fake lyme serum (not from chronic cases)? |
@lyme_x how will # #lymedisease test be validated? with the #cdc serum or 71% acute-only lyme test? so no chance a good lyme test will get approved? patient-centric? then why don’t you answer our questions? |
@de @yungjqyhe ok |
#truth! #bigpharma & #medicalindustrialcomplex truth. when #tbdwg & # start off with, “that’s in the past if it happened, get over it.” i call bs. a lot of what they do & don’t do is to keep truth covered up & people sick. |
@de @salutwasgeht |
the truth about @lyme_x. # is hhs. & #hhs is manipulating the #tbdwg, keeping their
‘ #persistentlymedisease doesn’t exist’ agenda & coverup going & pushing #lyme vaccines when they’ve pushed #lymedisease is no big deal for decades. y push a #vaccine if it’s no big deal? |
the u.s. department of health and human services and the steven and alexandra cohen foundation have launched the diagnostics prize, a $10 million competition to accelerate the development of lyme disease diagnostics. |
@lyme_x is #hhs. why # won’t tell us if the new #lymedisease tests will be validated using the #cdc #lyme serum or test? maybe cause is hhs & our federal health agencies worked with #bigpharma to make lyme testing fail in 1st place-for the 1st #vaccines & $ off misdx |
@lyme_x 2. # is #hhs & 3 times in a row now hhs has put an anti-#longlyme troll onto the #tbdwg to control the vote & report to congress- wormser, shapiro, & now sood (all at dearborn when #lyme tests were knowingly made to fail). all federal #lyme efforts & @lyme_x is a federal..3/ |
@lyme_x 1. that one thing is #/@lyme_x won’t tell us how their #diagnosticchallenge test will be validated. they use the crap-#cdc #lyme test or fake #cdc lyme serum (not from those who get very sick) then they will say good tests have too many false positives. is #hhs & …2- |
@de @schickfuesse du fetter versager was willst du |
@lyme_x or # is #hhs our federal health agencies are agents of #bigpharma, they don’t make money off of cures! money is made off of illness. #longlyme is a very prevalent illness that’s been a #crimesagainsthumanity, so many illnesses are rooted in #lyme.#lymedisease |
@bris516 @stephen02873518 @lyme_x @cohengive @hhsgov i think i followed finally- i thought you meant a person. i try to toe a line to be universally “all parties & politicians have screwed us over” as #lymedisease has been manipulated for at least 40 years (since 1993 when #lyme testing was made to fail). |
@lyme_x @cohengive @hhsgov why would any researcher sign up to have #hhs use the failed #cdc #lymedisease test or fake cdc #lyme serum to falsely show their test has too many false positives when they actually work. claiming to be patient-centric, # ignores patients & is an #hhs tactic of false hope |
the roundtable summary report called bridging the trust gap is in itself a securitization paper. the brain trust extols ai and using google to collect patient data. that "insurance companies could [not should?] add long term lyme treatment programs to their systems," |
@ajackso63831215 @ exactly |
#lymedisease peeps! we need to keep liking & retweeting the #lyme tweets that expose #hhs #cdc #alsf #idsa #nih,# being #hhs & #tbdwg being all of them. &adding hashtags gets those messages out to new people. it’s great we see the truth now, but we need lymies & others to. |
@lyme_x pushed they’d be bringing in the “tipping point” for #lyme medicine- we thought that meant making a positive difference, then when they put out their 1st long awaited #lymedisease report it said lyme was just disruptive. we’re patients surprised? # is #hhs-we learn |
why isn’t @lyme_x publishing this type of easily understood info? why is it working with #hhs & #cdc? hhs is over cdc & cdc said in 2020 the #lyme test works because it tells us what we expect it to- (expect after 40 years of don’t test/& known bad test). cause # is hhs! |
how #privatedisability actually works- thanks to #erisa’s making it so they have no repercussions for denying valid claims. & what did @lyme_x do? they helped them by publishing #lymedisease is just disruptive. #lyme # |
@beauxreliosis @ @lyme_x 😁 that was it! |
@beauxreliosis @ @lyme_x i will be retweeting myself with the correct @ a lot today. more of us get to see it that way. thanks again! had a total “doh!” palm to forehead moment when i figured out what you were telling me. |
@beauxreliosis @ @lyme_x dang it! i knew that at one point. i quit trying to talk at them then forgot. thank you! |
@ajackso63831215 @ andrea—it’s @lyme_x |
#neisvoid #chronicillness #disabilitytwitter #disablednotdisposable #disability #erisa #humanresources #longcovid #lymedisease - & # said #lyme is merely disruptive - #hhs is @ |
teach your #family to be safe from #ticks with these age-specific educational videos from high schooler, ananya potluri, who also designed flyers, posters, and #discord servers. https://t.co/d8rth5dobd a education & awareness “healthathon” challenge winning solution. https://t.co/c6jwed1tu4 |
don't miss the informational webinar for @ #diagnostics #prize #competition. thurs june 16 1-2pm et; it will be recorded. you need to be entered in phase 1 to advance to additional phases. register here https://t.co/qlxtstpihf #lyme #research # |
the reason @ published #lymedisease is merely “disruptive” instead of #disabling- then said they did it to avoid using labels…. |
have you seen tickula today? funeducate kids on tick awareness by downloading free #teacher plans https://t.co/jevi3pjww9 or find comic books in your local free library. team @natcaplyme submitted this winning solution to the 2021 education & awareness “healthathon." https://t.co/f3w8k50mr1 |
@ajackso63831215 @luciousspartac1 @thedeanpodcast @ these labels have very important legal definitions. example: how do you stop someone from getting disability? answer: don't diagnose them as disabled. |
oh wow! #lyme peeps take this 1 in! when some of the feds of the #cdc, #nih, & #hhs (# is hhs) have recently been admitting we need better #lymedisease testing (2020 cdc said their test works fine), they mean the test for the robust immune response cases which very few get |
#dyk the # diagnostics prize virtual informational webinar is thursday june 16, 2022 from 1-2pm et. interested entrants can register to attend here: https://t.co/rlfzuqvd8f @cohengive @hhsgov https://t.co/lbnhghujje |
the message from alison lewis, who submitted this winning solution to the 2021 # education & awareness “healthathon” challenge, is clear and designed to educate individuals about when to seek medical care after a #tick bite: @cohengive @hhs_health https://t.co/cg4hitr4m4 |
@luciousspartac1 @thedeanpodcast oh- the latest # (a.k.a. #hhs) report about #lymedisease describes #lyme as resulting in a person being “disrupted without capacity.” wth? when asked why they didn’t just say “disabled,” the hhs rep in charge of @ said they decided to avoid using “labels.” |
@ajackso63831215 @ @cohengive yes, we don’t trust #hhs- they still are using tactics to make patients think they are trying to help them while still manipulating the #lymedisease arena. one huge example-hhs keeps putting controlling people that work against us on the #tbdwg. #lyme patients don’t trust hhs. |
@de ah |
@ # @cohengive #cohengive - joining with #hhs was very detrimental for #lyme patients. not a thing has changed for those with #lymedisease. most can’t get an accurate test, certainly not a #cdc test (which will be used to validate the # test invalid) or treatment. |
@ #tbdwg - haven’t changed a thing! #lymedisease patients still can’t find a doctor to help even when they are lucky enough to have a positive test. they need actual #lyme doctors not the ones the #cdc, #nih, #hhs would send them to (# recommends hhs would refer docs) |
@lymeconcerns @hhs_ash @hhsgov @ the only satisfaction i get from his absurd comment is the odds are he or someone close to him is bound to get a tick borne illness, not catch it in time, not be treated properly, and then he’ll finally get it. |
@hhs_ash @hhsgov this is what #cdc, #aldf, #idsa, #nih, #hhs has caused. @ have you/ #hhs done a thing to change this? has the #tbdwg? #aldf got steere to go from #lymedisease is a serious #neuroimmune illness to this- it’s a hysterical woman’s non-illness (for 1st #lyme vax to look good) https://t.co/dldbgztwr6 |
become a citizen scientist today! help track and report ticks with the free tick tracker app. https://t.co/hfjpect4zx the @livlyme foundation submitted this winning solution to the 2021 education & awareness “healthathon” challenge. @cohengive #patientcenteredinnovation |
@hhs_ash @hhsgov @ 3 of 3. y would any #lymedisease test developer sign up to have their #lyme test falsely proven to have too many false positives? based on #hhs’s putting wormser, shapiro, & sood onto the #tbdwg after the things they’ve published & patient outcry-they should know not to trust hhs |
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