I am Sofiia, starting university next year to study biomedical science and in love with all things musicals, animals, biology, STEM, science, disability awareness, neurodiversity inclusion and more.
linktr.ee/floraandfi
SofiiaF
Karma: 88
How is this?
Is Big Pharma hiding the cure for cancer? No but someone else is*
The rise of antiscience and why Big Wellness is hiding cures
TLDR: There is unlikely to be a promising cure or new management that would be completely buried (even if delayed)by for profit pharmaceuticals, due to a mix of diverse stakeholders, non profits in the space, and ‘first to beat’ reasoning. Pharmaceuticals are villified more than alternative medicines despite having documents side effects and processes rather than the potential for harm from unlicensed herbal, supplemental and other forms, plus branches such as chiropractics, naturopathy, homeopathy and more are being conflated as ‘leaning into lifestyle changes’ rather than for their pseudoscientific origins, blurring the lines between science as a process and science as an entity to attack. Historically, scientists and clinicians have done a bad job (through many factors) of representing these diverse cultures and voices, but alternative medicine should not have a seat at the table as it does more harm than good.
PREMISE: Big Pharma wants you sick
3. The pharmaceutical landscape
5. Risk and reward in pharmaceuticals
6. HPV vaccines and Big Pharma’s interest in a cure
7. Nocebo effects, clinical trial optics and fall guys
8. Big Pharma can’t veto a cure
10. Alternative medicine origins
Thank you! Will implement now!
How much of EA comms is angled at funders/donors vs academics/researchers/peers ve general public. Which ones are most effective at bringing about ‘change’ in the broad sense, e.g. technical papers or more general for policy proposals in general governments? And does the rise of illiteracy mean shifting from say age 16-18 educated level to around age 10 (as suggested by the mean and median US reading level) for our assumed audience style?
There are some anonymous whistle lowers but nothing verified so im going under the assumption whether deleted or removed they are both removing short term access and we need an alternative central point for critical information.
I sincerely hope it’s just offline but honestly the order was to remove it, but nothing in terms of specifics, and deleting it seems like a logical next step unfortunately in the way it’s currently going.
I am crossing my fingers the orders are reversed and they are brought back, but without dynamic updates and a central resource point, global health and public data is in jeopardy in my opinion.
They’ve also closed freedom of information request forms to ask for the data or papers. So can’t access it even in case by case requests.
Thank you so much for being proactive! It’s true partial archives of some CDC datasets have been done, but the issue is is it’s usually dynamic, in the sense that guidelines get republished each week (or day for outbreaks) and get updated continually. Furthermore, IA is working on archiving datasets, but downloading or using them only brings the static dataset without necessarily capturing the actual sitemap schema for navigation. Plus IA and EOT are great but are begging people to help out to decentralised our dependandance and provide alternatives if they get targeted.
At the very least, the hope is the most critical day to day functioning information can be reported and provided.
For example, HIV prescribing guidelines for clinicians and NGOs valid since last week have been put onto the doc, and vaccine information sheets valid from 28 Jan 2025 also put onto the doc if anyone needs them.
But thank you for looking into it 💕
Why the current mass science data deletion should be a key priority according to the INT framework
Thanks for the question! Should have provided context. With new executive orders, entire databases are being deleted of open sourc public academic data. Efforts to retain access are kind of disparate and keeping track is hard, whilst datasets are too big for lone people to download and archive or host.
For example, here’s a short excerpt of just some of the deletions since yesterday (started collating to keep track in the masterdoc, hoping to make a website/distribution etc):
PAPERS AND TOPICS DELETED or UNAVAILABLE: (as of 2/2/25) AND ALTERNATIVE SOURCES (IF AVAILABLE)Broad topics:
HIV and Sexual Health
Contraceptive guidelines https://www.cdc.gov/contraception/hcp/contraceptive-guidance/
STI treatment guidelines https://www.cdc.gov/std/treatment-guidelines/adolescents.htm
Discussing HIV and Sexual Health resources https://www.cdc.gov/healthyyouth/healthservices/infobriefs/birth_control_information.htm
STIs in adolescents treatments https://www.cdc.gov/std/treatment-guidelines/adolescents.htm
Up from 17:46 GMT 2⁄2
Contraception guidance for healthcare providers https://www.cdc.gov/contraception/hcp/contraceptive-guidance/
Preventing HPV in women https://www.cdc.gov/hiv/prevention/index.html
STI statistics https://www.cdc.gov/sti-statistic
Gender and diversity
Disability inclusion
Youth and childhood
Diseases and outbreaks, global health
Health disparities in TB, HIV, STDS and hepatitis https://www.cdc.gov/health-disparities-hiv-std-tb-hepatitis/
Vaccines
Vaccine guidance https://www.cdc.gov/vaccines/hcp/acip-recs/index.html
Misc
A-Z Index of Birth Defects https://www.cdc.gov/ncbddd/sitemap.html
Intellectual Disabilities Information Hub https://www.cdc.gov/ncbddd/developmentaldisabilities/facts-about-intellectual-disability.html
Contact CDC https://www.cdc.gov/contact/wcms-auto-sitemap.xml
Cancer screening hub https://www.cdc.gov/wcms-auto-sitemap-root-cancerscreening.xm
Covid treatment sitemap
Covid vaccine information https://www.cdc.gov/covidvaccines
Archived content I could find https://archive.cdc.gov/#/results?q=covid%20vaccine&start=0&rows=10
VetoViolance site https://vetoviolence.cdc.gov/apps/maintenance/
TO SORT: Deletions and removals
INCLUSIVE PRACTICES FOR HELPING STUDENTS THRIVE
YOUTH RISK BEHAVIOUR SURVEILLANCE SYSTEM
PREVENTING CHRONIC DISEASE | SEXUAL RISK FACTORS
SEXUAL HEALTH RISK ADVISORY CONCERNS
Also down was AtlasPlus, an interactive tool that lets users analyze CDC data on HIV, STDs, TB and viral hepatitis, and the CDC’s Social Vulnerability Index, data that helps researchers and public policy leaders identify communities that are vulnerable to the effects of disasters and public health emergencies.
A page about food safety during pregnancy called “Safer Food Choices for Pregnant People” was also removed.
CDC with surveillance data on HIV, viral hepatitis, STDs and TB. Also gone missing: a page with basic information about HIV testing. The CDC’s Social Vulnerability Index, a tool that assesses community resilience in the event of natural disaster was also taken down.
For the first time in 60 years, MMWR weekly morbidity and mortality report isn’t published
Vaccine info sheets
As of Friday afternoon, several CDC pages related to HIV were down, including the CDC’s HIV index page, testing page, datasets, national surveillance reports and causes pages.
Many of the CDC’s sites related to LGBTQ youth were also removed, including pages that mentioned LGBT children’s risk of suicide, those focused on creating safe schools for LGBTQ youth and a page focused on health disparities among LGBTQ youth.
The site for the Youth Risk Behavior Surveillance System — a long-running survey that tracks health behaviors among high school students in the United States — said “The page you’re looking for was not found.”
Several webpages from Centers for Disease Control and Prevention with references to LGBTQ+ health were no longer available. A page from the HHS Office for Civil Rights outlining the rights of LGBTQ+ people in health care settings was also gone as of Friday. The website of the National Institutes of Health’s Office for Sexual & Gender Minority Research Office disappeared.
[Question] Looking for individuals to help create an open, free, accessible community to track and share global health and medical resources to bridge info loss and scientific deletion
Ethics and practicalities of Enoses and passive scent based surveillance systems (short paper)
Thank you so much for this! Amazing to see some application-based ways to make an impact with biology/health!
Biology for good role play
[Question] Quick Q) Information hazards in open source lit reviews
Quick Take:
In most educational settings or even healthcare campaigns for the general public, the only mosquito-borne disease highlighted prominently in the UK tends to be malaria, and most mosquito-borne diseases may be non-domestic in countries we’d consider HICs and with healthcare infrastructure, and yet turns out quite a few are considered now natively established in regions such as Spain, France, US, Croatia.
Currently doing a lit review on different methods of reducing populations, transmission or exposure to bites to control mosquito borne diseases, and that has more context, information and sources, but if anyone was considering doing some cause prio on types/vectors of disease we may want to work on/should consider, then here are some key mosquito-borne diseases that I feel get mentioned less.
Working on a longer write up but if it helps anyone considering wrapping their head around mosquito borne diseases, here is a short list of the most prominent diseases in terms of the burden of morbidity and mortality from worldwide disease, with a mention of endemic to HICs diseases:
Malaria
Protist Plasmodium spread by female Anopheles mosquitos
Spread directly during bites, minority spread through contaminated needles with infected blood and congenital in utero
Agnostic to most innate risk factors but sickle cell uni-recessive carriers appear to be immune, and external factors are mainly climatic region (living in endemic countries, near equator, international travel), malnutrition, working outdoors especially during evenings, working with animals
children or elderly are more susceptible
90% of malarial deaths occur in Africa south of the Sahara and most are in children under 5
Testing is recommended after suspected bites or during local outbreaks, through microscopic blood smears or RDTs (expensive but can detect small pieces of malarial parasites), or lab PCR testing (most accurate especially to determine species but highly rare, specialised and very expensive)
Prevention involves removing stagnant water, pouring oil in wells, reducing malarial breeding, spraying insecticides, barrier nets, remaining indoors and during peak mosquito periods, staying away from hotspots, and more
Currently no protective individual measures are highly effective, some very expensive chemicals (especially DEET insect repellants) are good external measures but can cause injury to living beings, and anti malarial drugs have questionable protection or cost effectiveness
Treatment depends on the type of malaria and severity of illness, and is usually artemisinin-based combination therapy (ACT) and are typically used for chloroquine-resistant malaria
Treatments can not be given preventatively in a cheap or safe way, and have severe side effects, or contribute to resistance if incorrect treatments are given (eg chloroquine phosphates for resistant strains)
Chikungunya
Found usually in Africa, Americas, Asia, Europe and Indian islands but infected travellers can spread further
Most common symptoms are fevers and joint pain so can be confused or mistreated as other conditions such as flu
No medication to treat chikungunya so only prevention to either limit likelihood of being bitten or having vaccinations before travels
A type of alphavirus (such as Mayaro and Ross River virus), and spreads during bites, and people with high enough levels of virus in their blood (viremia) in the first few days can transmit the virus to new mosquitos that bite them, or spread during blood exchanges such as transfusions, in utero, during organ transplants, through contaminated needles and more
The virus is not spread through touching, coughing or person to person however many fear campaigns and misinformation around it can cause isolation which further complicates access to care and can be detrimental to the social and emotional wellbeing of infected individuals
One vaccine (IXCHIQ) is available (mainly in the US for foreign travellers) but is very expensive and not approved for under 18s
Dengue fever
Of most of these diseases, dengue is the most likely to get better on its own and is usually mild, but in some people can cause severe illness
Found mainly in tropical areas, but also in Croatia, France, Italy, Spain and Portugal
Symptoms are once again vague, such as temperature, headache, pain behind the eyes, muscle and joint pain and rash
Severe dengue can lead to seizures, dehydration, bleeding gums, and death
Treatment is usually resting and fluids and over the counter painkillers, but anti inflammatories such as NSAIDs (aspirin, ibuprofen) can intensify bleeding
Dengue is also multiinfective and having dengue previously increases the risk of severe illness at reinfection
The only prevention is preventing mosquito bites, a vaccine is available but is usually limited to US and UK travellers and is only privately funded
Yellow fever
Found mainly in Africa, the South and Central America
Vaccines are much more common but still only readibly available in countries that have robust healthcare access
Aside from vaccines, the only prevention is avoiding mosquito bites, and symptoms are once again common such as temperature and headache, but can also lead to bleeding from the eyes and mouth, dark pee and jaundice
Treatment also includes over the counter painkillers and fluids, but yellow fever tends to be quite deadly in young children, those with preexisting liver conditions, and elderly
Unlike the previous disorders, the vaccine is more available (for a price) and is highly effective and safe for anyone over 9 months old, and recommendations include vaccines at least 10 days before travelling to at risk areas, and revaccination is also safe if past exposure is unknown
The prophylaxis effect is lifelong, the cost tends to be around £85 which is highly affordable for most travellers, but out of reach for most endemic countries
Eastern Equine Encephalitis
Found mainly in North America and the Caribbean and is one of the 2 most deadly mosquito-borne diseases in the US, and is closely related to Madariaga virus
Can circulate between mosquitos and birds that are near freshwater hardwood swamps, some animals (emus) can also become bridge vectors by feeding birds and humans, whilst people (and horses) are ‘dead end’ hosts as they do not spread the virus, even if they get infected. (but one case did have 3 recipients of organ transplants from an infected donor who were infected)
Prevention also relies on preventing mosquito bites, and no specific treatment exists, only pain control and hydration to try to reduce meningeal symptoms as supportive measures
West Equine Encephalitis
Very similar to EEE but most people who get infected don’t get sick, no vaccines or prevention aside from avoiding bites, and tends to cause sporadic outbreaks of disease in horses and people, but risk increases from summer to fall
St Louis Encephalitis
Very similar to previous diseases, but most people don’t display symptoms, however encephalitis complications and meningitis is common in at risk groups, and no vaccine or prevention aside from avoiding bites exists
West Nile
80% of people don’t display symptoms but about 1% develop severe CNS encephalitis and 50% of infections occur in over 60s, about 10% of those who get nervous inflammation pass away
No specific treatment or vaccine but lifelong immunity is common in healthy individuals after a past infection
Marburg
Thank you so much for both these amazing suggestions!!!
Looking for guests working in EA Bio fields
[Question] DALYs and Disabilities guest speaker?
Sofya Lebedeva has been so wonderfully kind and helpful and today she suggested changing the plethora of links to a linktree. I was expecting a very difficult set up process and a hefty cost but the lifetime free plan took me 5 min to set up and I’d say it works amazingly to keep it all in one place.
I would say societies (eg EA uni groups) may benefit, and perhaps even the cost (around £40 a year) to be able to advertise events on Linktree may be helpful.
Commented on an article but expanding to a (very) quick take:
the absolute rabbit holes I’ve gotten into from “hmm, I should check about diseases in dogs to keep an eye on” to “wow, mosquito borne diseases are very high” to ” oh my goodness, why do I have so many papers saved on impeding the ventral nerves in mosquitos to test blood hunting mechanism inhibitions...” have nearly all converted to genetically engineered mosquitos with Ago2 gene disactivation or susceptibility to infection symptoms. The fears of genetic engineering to evade diseases by almost the flip side of making the vector susceptible strikes me with the same ethical, biological and genetic risks, plus the huge issues with bioweaponory and double use tech.
Seems as if the media stories of non technical nature of 30 mainstream sources (e.g. BBC news, Times, Guardian) from all sides of the spectrum are favourable of genetic engineering to prevent spread but make no mention of the information hazards or dual use. Wonder if that’s just journalism doesn’t favour nuance but also perhaps maybe some intentional silence....
Such an interesting article that I can’t wait to mull over. I can’t add anything of technical value but the absolute rabbit holes I’ve gotten into from “hmm, I should check about diseases in dogs to keep an eye on” to “wow, mosquito borne diseases are very high” to ” oh my goodness, why do I have so many papers saved on impeding the ventral nerves in mosquitos to test blood hunting mechanism inhibitions...” have nearly all converted to genetically engineered mosquitos with Ago2 gene disactivation or susceptibility to infection symptoms. The fears of genetic engineering to evade diseases by almost the flip side of making the vector susceptible strikes me with the same ethical, biological and genetic risks, plus the huge issues with bioweaponory and double use tech.
Clarification: by not changing biases, I meant ‘don’t try to change intuitive society bias such as valuing cuteness’ for effectiveness, but rather work with them to our advantage. E.g. if I was raising money for animals, maybe don’t pick a cockroach. You could- to get the shock factor and some uniqueness/bust stereotypes- but you are climbing an uphill battle when bigger wars are needed.