Discover and read the best of Twitter Threads about #patients

Most recents (24)

I am perplexed how #RogerChou can not only sit on the #CDCOWG but is a lead author. He recused himself at the #CDC meeting due to #COIs bc of his work as ‘expert witness’ in Purdue litigation but is lead author 🤷🏻‍♀️ @CDCDirector @CDCInjury could you explain how this is ethical? 1/
Listening to the #CDCOWG from perspective of #caregiver & advocate was disheartening. For me @CDCDirector assurances that #patients voices were heard was meaningless. She may say that we’ve been heard but then how are so many feeling as we haven’t been? Why are the #legislation 2
of these guidelines continuing? Why are those who have benefitted from #opioid #pain medications being removed, shamed & stigmatized? Why is care not individualized? It’s very clear our #voices have not been heard. There is nothing that was said that eased my concern for 3/
Read 19 tweets
I want to again express my concern to my senators @SenJohnHoeven and @kevincramer about the lack of transparency by the @CDCDirector @CDCInjury in the revising of the #OpioidGuidelines. Great harm has been done to those w #chronicpain in our state. @SanfordHealth 1/
cut all #patients off of #opioids at once due to what administration stated was because of ‘national standard’ (#CDC Guidelines). So many harmed. How are actions like this ok? Three weeks prior to my son being removed from #opioid #pain medications we had met with his 2/
#pain physician & had a long talk about #opioid #pain #medications being best option for him. Removing individuals w #chronicpain from #opioid pain medication was not a decision based on individual care of #patients BUT @SanfordHealth taking care of own needs. Multiple 3/
Read 12 tweets
Thread: Thoughts on #valuebased & #patientcenteredcare

Within #healthcare & #advocacy there seems to be a great deal of discussion on both #valuebased care & #PCC. #Healthcare costs have skyrocketed’ & thus a need to #reduce. I am not an #economist but as a #caregiver I 1/
definitely have seen ‘waste’. From my POV costs will continue to skyrocket even if #valuebased care is implemented. One reason (again not an economist) is the vulture ‘istic’ aspect of industries profiting from our system. The other reason is that our system is not centered 2/
around the #patient or patients needs. Thus, if the value based metric is reduced hospital admissions, this, on the face seems straight forth, however if the patients needs are not taken into account but only focused on established metric, costs could (& I will argue often r) 3/
Read 14 tweets
I can’t remember who said this, so I apologize, but the app -lication of #healthcare is not the answer to magically transforming the system. So many applications, portals, surveys…. They can assist but first a true cultural shift must be made in #healthcare. For this to be 1/
those working in system need to be supported. Currently our #healthcare system lays the burdens of the broken system at feet of #patients, #caregivers & healthcare professionals. So much must change. It must not be a system based on vulturism (I know not a word) of entities 2/
focused on making millions of dollars of the backs of those who are vulnerable. We have allowed this, we must change this. One persons voice I appreciate is @RepKatiePorter but others must understand the harm occurring. Our system is not functional. For some reason those 3/
Read 4 tweets
I posted this yesterday with parents permission. I wanted to expand on this video a bit.

1st, a big part of me feels very uncomfortable with posting. Just like a big part of me felt uncomfortable about posting about my kids experience (w permission). It feels exploitive. 1/
Yet, when I share experiences of #caregivers & or #patients (who had given me permission to share) those experiences were/are often questioned or I’ve been excused of exaggerating. Or like many others called a #shill for #Pharmaceutical companies. I am a mother, who 2/
witnessed first hand the harms of pain ignored, not treated, under treated or labeled as #psychosomatic. I remember very vividly how my kids would arch their backs in pain & scream. How helpless I felt. I have seen the repercussions of this #harm & am absolutely obsessed 3/
Read 15 tweets
I wanted to share some comments by #parents whose children have #pancreatitis. As I have shared before, the #pain care for these kids is NOT adequate. Their #pain is often not being addressed. I have asked parents to start writing up their stories to share. When #pain is not 1/
addressed it causes trauma, not only for the child/youth but parents. We know unaddressed #pain can lead to #chronicpain. I absolutely believe in #biopyschosocial approach but what we are seeing is a #psychosocial approach being utilized and #bio aspect missing. This leaves 2/
#parents and #patients feeling angry & abandoned. One of the reasons I started getting involved in #advocacy is that my kids #pain was dismissed, they were labeled. This leads to #trauma, #chronicpain & distrust of #physician. What HCP need to understand is that when this is 3/
Read 7 tweets
MUST READ: *Terrific* letter to @SecBecerra, @SecYellen, and @SecMartyWalsh signed by 97 Members of Congress and spearheaded by @RepTomSuozzi and @RepBradWenstrup.

They urge @HHSGov, @USTreasury, and @USDOL to not only reflect congressional...

➡️ hanys.org/communications…
...intent in their rulemaking by ensuring a balanced process to settle payment disputes between #health plans and providers, but also ensure an #IDR process that captures the unique circumstances of each billing dispute and does not cause any single piece of information to be...
Read 11 tweets
#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
Read 21 tweets
If #HealthCare positions itself as public priority number one during a #pandemic, then it goes without saying #nurses in fact perform a critical and central role in delivering said #health care. #NursesWeek2021 #NursesWeek #NursesDay #NursesMonth #Nursing #NurseTwitter #Nurse
By not only advocating for #HealthPromotion in general, but by also educating #patients directly and the public at large of the preventive measures necessary to avoid illness and injury, it's not an exaggeration to call #nurses out as #noble..
...or, at the very least their selfless #professional #nursing pursuits can be considered as such. Conjoined with providing actual #MedicalCare AND assisting with #rehabilitation AND providing emotional & psychological #support AND...
Read 5 tweets
I’ve continued to see a divide in #pain community, a lack of support as well as pretty blatant attacks. My position: none of us speak for the entire community. We all have are personal stories. Each is unique and sacred. Pain occurs on a continuum and there are 1/
a variety of variables involved. As a parent what I want is a wider variety of options that is paid by insurance, I want voices to be heard, I want individual care, transparency and partnership with physicians & HCP. I want accessibility in the community I live 2/
I want a coordinated approach that is patient and family centric that takes into account barriers of treatments. When I say I want a variety of strategies & treatments I absolutely mean it. My kids have utilized ACT and CBT in a variety of settings. Sadly in only 3/
Read 15 tweets
1. Point Sanitaire 23/04 #Genève

-Quasi que du #variant #britannique
-Quelques variants #brésiliens / #sudafricains
dont contamination intra-communautaire (pas que retours de voyage). #Enquêtes d'#entourage précise et + intense pour ces variants
-Pas variant #indien pr l'instant
2. Vaccination #Genève
▪️74 et +: Bcp de vaccinés doses 1+2
▪️65-74: bcp de 1ères doses, pas encore de 2ème (ça ne fait pas 4 sem. que vaccination ouverte)
▪️45-64: bcp de #vaccinosenthousiastes ds cette tranche d'âge. Vaccination a commencé. #Palexpo
3. Vaccination #Genève

Aujourd'hui

▪️Priorité 1:
- 65 et+
- femmes enceintes avec critère vulnérabilité

▪️Priorité2:
- 45 et+
- collaborateurs (prof de santé)
- personnes avec critère de vulnérabilité qq soit âge
Read 18 tweets
@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz First, reaction to what #patients think about the new #UniversalDefinition ... A step forward ... ? But it is still #failure Should be #FunctionNotFailure /2
@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz What about #CHD "Does this mean I was at risk when I was born?" ... "I could be at risk for HF, but how am I to manage my days is still missing ... " "It's nice that there are categories, but how do you translate that to people who need to process it?" /3
@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz "You can go back and forth between stages" ... at least HF and Advanced HF. The NYHA classes seem to recognize the transient nature..." Heart failure should remain heart failure, but clinics should be #FunctionNotFailure /4
Read 9 tweets
1/
Don't look at it as a JOB

See it as one's DUTY.

A patient is a doctor's extended #family

The art of #medicine goes well beyond the realm of a 'work-shift'

There is no current proven role of #herbal medicines in #cancer even though a lot of basic #science work is ongoing +
2/
Oral cancer is treatable condition. Please C Indian Clinical Practice Guidelines for oral cavity cancer bit.ly/3vnJoWJ

Ther R guidlines formulated for management in low resource areas too onlinelibrary.wiley.com/doi/full/10.10…

None of these feature #herbal drugs or #Ayurveda +
3/
The professor mite B right in his own terms, but not scientifically

A student must B able to rise to the occasion & correct/question his/her teacher if need B - this is truly success of practical education

Neither the professor, nor the patient, knws abt effect of herbals
Read 6 tweets
You shouldn't seek to prove your hypotheses right. *If you're a scientist, you should only seek to prove them wrong.* This is widely accepted & has been naturalized long enough to be normative. So WHAT are we doing to pain patients?

#Science #EpistemicViolence

🔽 Thread 🔽
It appears a twisted form of methodological skepticism is being forced on us. #Patients are routinely told by psychologists, who don't treat physical diseases or injuries, that the psychologists' & drs' Cartesian doubt about a patients' subjective knowledge of their OWN ...
physical experience, is a MEDICAL TREATMENT. What do I mean?

Translation: Patients must simply accept that pain is inherently in one's own mind because perceptions of one's own sensory in/output are interpreted by the brain via electrical impulses. "I think therefore I am."
Read 21 tweets
Daily Bookmarks to GAVNet 01/01/2021 greeneracresvaluenetwork.wordpress.com/2021/01/01/dai…
Beyond Climate War: Writings on Deep Adaptation to societal collapse

jembendell.com/2020/12/31/bey…

#SystemsChange #adaptation #ClimateChange #conflict
“Those of Us Who Don’t Die Are Going to Quit”: A Crush of Patients, Dwindling Supplies and the Nurse Who Lost Hope — ProPublica

propublica.org/article/those-…

#supplies #hope #patients #nurse #COVID19
Read 10 tweets
Hello #chronicillness friends. This is a very important thread. Recently @sciam published a promotional (instead of journalistic) article promoting the idea that functional neurological disorder (FND) is a legitimate neurological illness instead of repackaged hysteria. 1/
Many physicians have denied what we experienced patients, particularly women, know to be the truth: FND is the newest hysteria term they are pushing very hard to sound like something “new.” Recently this discussion was discovered on Reddit that proves what we knew all along. 2/
FND is a wastebasket drs use to fool patients into thinking they’re being taken seriously when in they actually want to punt them on mental health for their own convenience. They do not give a crap about your well-being. @DianeOLeary has discovered this in medical literature. 3/
Read 7 tweets
Did you miss the talk "Panorama of #lupus in 2020?" I did yesterday for @LupusEurope?

No worries, I'm starting a #tweeter #SLE #thread so that you can pick up the slides you're interested in 👍

Check below for the SLIDES ⬇️
Slide #1
Current classification of #Lupus
Slide #2
What is #lupus #SLE
#Lupusawareness
Read 18 tweets
ATTN #CBD stakeholders: @US_FDA today holding scientific conf. on CBD/other #cannabinoids. I'll be live tweeting throughout. Not sure we'll get much insight on immediate path forward for consumer products but I'll share noteworthy observations. Agenda: bit.ly/3pHXU8V
I'll be paying particular attention to @DrAbernethyFDA's remarks at 9:05a (head of #FDA's #CBD Policy Working Group) and @DThrockmortonMD's keynote at 9:15a (one of Agency's principals for regulating R&D, manufacture & marketing of #cannabis & cannabis-derived #drug products).
And we're underway! First up is Kaveeta Vasisht, MD, PharmD. Associate Commissioner for Women’s
Health and Director, Office of Women’s Health, FDA. She's noting ubiquity of #CBD products in marketplace, many of which are targeted to #women.
Read 56 tweets
It's now time for the third and last conference of the #OAFIPreCongress2020, The impact of #COVID19 pandemic on OA Research, with Professor Ali Mobasheri, President of OARSI, Dr. Leigh F. Callahan, Director Osteoarthritis Action Alliance (OAAA) and ... (1/2)
... Professor @ProfDavidHunter , Florance and CopeChair of Rheumathology at the @Sydney_Uni. The moderator is @DrJosepVerges, President & CEO of OAFI Foundation.

#OAFIPreCongress2020

You can follow this conference here:
For OAFI is really important the collaboration between diverse organitzations in order to help improve the quality of live of #oasteoarthritis patients. One example of that is the cooperation between OAFI and @OARSInews and further collaborations with @oaactionallianc.
Read 8 tweets
We start the second conference of #OAFIPreCongress2020,
Patients and Public Involvement (PPI) in the peer review publication process, with Dr. Ciaran Fitzpatrick, Editor BMC Musculoskeletal Disordes, with Mr. Jonathan Collin, Journal Development Editor BioMed Central and ...(1/2)
@AmyPricePhD, The BMJ Editor, Research and Evaluation Editor (Patient and Public Partnership). The moderator is Professor Krysia Dziedzic, Arthritis Research UK Professor of Musculoskeletal Therapies at @KeeleUniversity.

Watch the Pre-Congress live here:
@AmyPricePhD, The BMJ Editor, Research and Evaluation Editor:

"Patients are involved in every paper we produce in @bmj_latest."

"We have teams of patients and researchers working together and improving the quality of publications".

#OAFICongress2020
Read 6 tweets
Now it's time for the first conference of the #OAFIPreCongress2020, Pre & Clinical Research with OA Patients, with Dr. Mariana Vitaloni, Professor Ali Mobasheri and @DrJosepVerges. You can watch the Pre-Congress live here:
The moderator is Professor Krysia Dziedzic, Arthritis Research UK Professor of Musculoskeletal Therapies at @KeeleUniversity.
Follow the conference live here:
Professor Ali Mobasheri, president of @OARSInews:

"The cooperation of OARSI and OAFI is a perfect example of the collaboration between researchers and patients."

#OAFIPreCongress2020

Watch it live here:
Read 10 tweets
#PainKills
I am angry tweeting and usually that is never good but I am angry. My heart is breaking for another mother who lost their child to pain. She had her entire life in front of her. Her entire life! For many years she struggled with #pancreatitis. She was 1/
not in an area where there were many #physicians aware of #pancreatitis. I provided the mother names of experts in the field but sadly they never followed up or called. I have often seen this. As a parent I would carry around my husband & kids genetic 🧬 results 2/
in order to ensue that physicians would listen to me. I’d provide them with the names or our specialists. A few times physicians listened many times they did not. So often my husband was questioned about his alcohol use relentlessly EVEN with the test results. It was a 3/
Read 16 tweets
The RED Talk on The #Business and #Science of #Healthcare is now live! Still time to join us at ruralpolicy.group/red.
The next big issue facing NICE & #healthcare will be our relationship with the European Medicines Agency after Brexit; it will impact our #medicines research, trials. We could see a dramatic reduction in research, access to medicine and disrupt the supply of meds - @steve_mccabe
The British #taxpayer makes a phenomenal contribution to the development of new #drugs - but these can then be prohibitively priced. We need to improve access to new medicines and there is a question around cost, access and funding. @steve_mccabe
Read 24 tweets

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