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"Open source society" ?!


"Today, despite the global rollout of covid-19 vaccines and treatments, the anonymised participant level data underlying the trials for these new products remain inaccessible to doctors, researchers, and the public--and are likely to remain that way for years to come. This is morally indefensible for all trials, but especially for those involving major public health interventions."

by Tom2 on Fri Jan 21st, 2022 at 02:15:55 PM EST
I think the issue is more complex than is admitted in the editorial. For example,

...there are strong arguments against sharing raw data routinely. Raw data sets are large and complex, include potentially sensitive individual participant data, and are not needed for most secondary analyses of shared clinical trial data.

More comprehensive discussion.

by asdf on Fri Jan 21st, 2022 at 03:13:39 PM EST
[ Parent ]
Yes. I do this kind of work for a living, and the issue number two in health (clinical, real world, cohort) data sharing is that it's all over the place: it has to be made sane and harmonized before doing anything with it.

Also the currently popular tools kinda requires as much data as they can for "statistically significant" finds instead of looking for the minimum data required to answer a question.

The number one issue is that data has value to research (due to the funding mechanisms) groups (and hospitals and biobanks) and no one is willing to share their data until they have squeezed every possible funding out of it. Then they're willing to pool it to squeeze out some more, but it can take months or years for the lawyers to agree on what is shared and how and who gets the credit because there is no trust.

And that's just the paper part of it, I won't start on the actual implementation of any data sharing project, which usually also takes months to sort out all issues.

by pelgus on Fri Jan 21st, 2022 at 03:35:35 PM EST
[ Parent ]
Lublin et al., "Defining the clinical course of multiple sclerosis" (2014)
Standardized descriptions published in 1996 based on a survey of international MS experts provided purely clinical phenotypes based on data and consensus at that time, but imaging and biological correlates were lacking. Increased understanding of MS and its pathology, coupled with general concern that the original descriptors may not adequately reflect more recently identified clinical aspects of the disease, prompted a re-examination of MS disease phenotypes by the International Advisory Committee on Clinical Trials of MS.
In 2011, the Committee (now jointly sponsored by NMSS and The European Committee for Treatment and Research in MS) and other experts (The MS Phenotype Group) re-examined MS phenotypes, exploring clinical, imaging, and biomarker advances through working groups and literature searches. In October 2012, we convened to review the 1996 clinical course descriptions and determine if sufficient progress and new insights were available to recommend changes. ...
4 years later
Reich, et al., "Multiple Sclerosis," (2018)
The MS Phenotype Group has reconsidered prior MS disease course descriptors, some 16 years after their original publication. We recommend the following: ...
The Astounding Run-on Sentence
As of October 2017, the US Food and Drug Administration has approved 15 medications for modifying the course of MS: 5 preparations of interferon [!] beta; 2 preparations of glatiramer acetate; the monoclonal antibodies [!] natalizumab, alemtuzumab, daclizumab, and ocrelizumab (the first B-cell targeted therapy); the chemotherapy [!] mitoxantrone; and the small-molecule [mRNA!] oral agents fingolimod, dimethyl fumarate*, and teriflunomide. Dalfampridine* has been approved as a symptomatic therapy to improve walking speed. [start]It is beyond the scope of this article to discuss the relative benefits, risks, modes of action, and routes of administration of these various medications (though some targets are depicted in Figure 4), except to say that all are approved for relapsing-remitting MS and reduce, to various extents, the likelihood of developing new white matter lesions, clinical relapses, and stepwise accumulation of disability.[end]
boilerplate conclusion: moar "broadly conceived" research is needed.
At the same time, a renewed focus on lesion development and repair - more broadly conceived to include lesions in white matter, gray matter, and leptomeninges - should ultimately unify lines of research, particularly on the side of fluid and imaging biomarkers and clinical outcomes, which have sometimes strayed too far from the causative biology.
3 years later
* 2 drugs taken together with which I briefly had intimate personal experience 3Q2021, because neither manufacturer had reported this particular drug-drug interactions (DDI); in fact, no DDIs with monomethyl-, dimethyl-, or diroximelfumerate are published in publicly available literature or public libraries, (NIH) DailyMed and (Canada PPP) DrugBank.
by Cat on Sun Jan 23rd, 2022 at 06:32:49 PM EST
[ Parent ]
What is your take on the latest claims, "MS is a virus" ?
How is that possible when some families have multiple cases?
(given the source, it must be true, uh?
by Tom2 on Sun Jan 23rd, 2022 at 08:31:40 PM EST
[ Parent ]
A desperate attempt by special interest groups to lever $$ donations out of the MS patients they purport to support*... with pharma and medical device ads as well as the occasional ADL advice column for R&R noobs distracted by years of misdiagnoses or nasty interferon side-effects, possibly unpaid med insurance claims.

National MS Society featured that Harvard study of VA dependents in their monthly newsletter emailed 20 Jan 2022.

The National MS Society invested in this study as part of its ongoing research commitment to ending MS.
The Harvard team used blood samples collected to test for HIV among more than 10 million active-duty United States military personnel between 1993 and 2013. Looking for specific antibodies that signal past infection, they determined the EBV status at the time the first sample was taken, and then followed additional samples to determine the relation between EBV infection and MS onset during the period of active duty. The team identified 801 people who developed MS and 1,566 controls without MS whose samples were available.
Using a novel tool called VirScan, which screens for evidence of an immune response [antibodies] to approximately 200 viruses, they also found no links between other viruses and MS risk.
The design is trash, and the hypothesis has been hanging for years. See Reich 2018 link (above).
On the environmental side, major risk factors include geographical latitude (higher incidence in more temperate climates), which may reflect seasonal changes in sunlight exposure influencing vitamin D levels or pathogens prevalent in these regions, although a genetic contribution is possible as well. Tobacco exposure, obesity, and mononucleosis are also associated with enhanced risk for developing MS. Mononucleosis results from infection by Epstein-Barr virus in the post-pubertal population, and only a minority of people with a history of mononucleosis (and a tiny minority of all those infected with the nearly ubiquitous Epstein-Barr virus) eventually develop MS. Viruses other than Epstein-Barr have been suggested as potential causes of MS or MS-related disease activity, but none has been definitively proven. Some of these may act as molecular mimics...
The lamest entry in the genre that I've come across since a mundane MS clinical diagnosis by an opthalmologist in '97 is (not as you might suspect, exposure to certain maple tree species), B12 deficiency "mimics" MS symptoms if not CNS demyelination, must draw blood--and that was out of the mouth of the 1st neuro I'd consulted since '99... before he got my MRI in his hot hands. The 2nd neuro I consulted (2018) didn't have access to a PC to read the CD, but did prescribe vit D because I was menopausal. So there's that. The 3rd--MD, PhD--to whom I read my DDI riot act, I refer above.

The only research breaking ground in org chem is sm molecule wght (BBB) mRNA in vitro experiments to switch progenitor neurons (OLGs) on and off as well as T- and B-cells. There's also a small body of clinical trials testing metabolic anti-imflammatory MoAs.  

* I didn't subscribe to MS Society or MS Foundation at all until 2021. I'd been advised by PC and neuro case workers that these organizations could provide transpo vouchers to med appointments. That turned out to be false.

by Cat on Mon Jan 24th, 2022 at 12:02:32 AM EST
[ Parent ]
Thanks for these. I have an uncle who has MS and apparently slowed it down drastically by becoming very active (he was not before, rather a math teacher, chess player and intellectual). Now he cycles almost a thousand kilometers per year and is doing well! His sister and his mother died of MS.
by Tom2 on Mon Jan 24th, 2022 at 09:36:58 AM EST
[ Parent ]
has entered the room
posing as differential diagnosis.
Omicron [sic] amps up concerns about ["]long COVID["] and its causes
other than SARS-Cov-2 infection, regardless of a patient's "vaccine" status, actual medical history and commensurate maintenance drug regimen, or in/out patient COVID-indicated "cocktails".
Another is that latent viruses in the body, such as the Epstein-Barr [and varicella-zoster] virus that causes mononucleosis [that causes "shingles"], are reactivated. A recent study in the journal Cell pointed to Epstein-Barr in the blood as one of four possible risk factors, which also include pre-existing Type 2 diabetes and the levels of coronavirus RNA and certain antibodies in the blood. Those findings must be confirmed with more research.

A third theory is that autoimmune responses develop after acute COVID-19.

In a normal immune response, viral infections activate antibodies [T-cell, B-cell] that fight invading virus proteins. But sometimes in the aftermath, antibodies remain ["]revved up and mistakenly attack["] normal cells. That phenomenon is thought to play a role in autoimmune diseases such as lupus and multiple sclerosis

but not cancer
by Cat on Mon Jan 31st, 2022 at 03:55:25 PM EST
[ Parent ]


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