science 'by TiMS' ;)

[jimmylegs]

An Exploratory Investigation of Social Stigma and Concealment in Patients with Multiple Sclerosis (2016)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4849400/

Participants were recruited by electronic announcements with a link to an online survey about “people's experiences with—and thoughts and feelings about—having MS.” This announcement was posted on two websites (the National Multiple Sclerosis Society and This Is MS, an online forum used by patients with MS) and was included in an electronic newsletter distributed by the Consortium of Multiple Sclerosis Centers...

[frodo]

An Exploratory Investigation of Social Stigma and Concealment in Patients with Multiple Sclerosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4849400/

Participants were recruited by electronic announcements with a link to an online survey about “people's experiences with—and thoughts and feelings about—having MS.” This announcement was posted on two websites (the National Multiple Sclerosis Society and This Is MS, an online forum used by patients with MS) and was included in an electronic newsletter distributed by the Consortium of Multiple Sclerosis Centers...

Now we are famous ...

[jimmylegs]

From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis (2018)
https://link.springer.com/article/10.10 ... 017-0066-z

People who pursue unproven therapies are often portrayed as ‘desperate’ individuals duped by medical racketeers peddling ‘false hope’. These patients, in contrast, present themselves as empowered citizens who have taken an informed decision to pursue an experimental therapy. This paper explores the latter perspective through the case of the so-called ‘liberation procedure’: a controversial endovascular intervention proposed as a treatment for Multiple Sclerosis (MS). Drawing on interviews with 48 people affected by MS, we analyse the decision-making processes and justifications thereof of those who had the procedure (n = 31). While the decision to have the intervention might not have been justified according to the standards of evidence-based medicine, it was nonetheless premised on a shared ‘experiential logic’ – conceptualised as a logic of embodied risk/hope – that extends beyond the specific condition and therapy in question. The paper explicates this logic, concentrating on patients’ negotiations of (a) risk and uncertainty; (b) expertise and evidence; and (c) hope and experiment. In particular, we foreground how, through a combination of therapeutic experimentation and experiential information sharing, patients turn their own bodies into (contested) sources of hope for themselves and others, which, in turn, shapes their embodied experiences of living with MS in the present.

"For the Canadian study, the research was advertised on the CCSVI discussion board on a patient-led forum for people affected by MS, http://www.thisisms.com (TIMS)..."

[jimmylegs]

Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency (2012)
https://www.sciencedirect.com/science/a ... 1612000285

ThisIsMS (http://www.thisisms.com) ThisIsMs is an unbiased, unaffiliated Web site that aims to keep users up-to-date on the latest MS-related research and treatments, with forums available for discussion on topics regarding all aspects of MS. CCSVI is one of the popular topics discussed on this Web site. Both patients and physicians find this Web site to be an interesting source of information about CCSVI. Many patients who have been treated previously are using this site to discuss their individual experiences and to subsequently offer advice and encouragement to patients who are going through or have been through treatment.

This particular Web site and, in particular, its group specifically concerning CCSVI has evolved into a forum for physicians to communicate directly with patients, although this has been discouraged.21 Physicians are using this Web site to answer questions in a public forum so that other patients who presumably have the same questions can benefit as well. Several physicians have gained significant recognition because of their active participation as an expert on this site. It is important for physicians using this site for this purpose to be cautious about the advice that they give directly to patients in this type of public forum, which some are seeing as a precursor for formal Internet-based consultations.22 In addition, it is important for patients to be cautious about the information they are receiving because it is not monitored or peer-reviewed. This differs significantly from journal articles and textbooks because there is no expectation that the information being shared is being appropriately referenced or substantiated. Therefore, patients may have a difficult time distinguishing between the opinions of a physician, the anecdotal experience of a patient, and facts based on previously reviewed information. Despite this Web site’s disclosure on its home page that “this site does not offer medical advice” and that “all treatment decisions should be made with the full consent of a physician,” patients continue to take what they read on this site at face value and base many of their own medical decisions on the information they receive from this site.
...
Internet-based social networking, coupled with increasing online health information-seeking behavior of many patients, presents an opportunity to extend the physician–patient relationship beyond the office or hospital.2,7,9,10 As a result, an increasing number of physicians are tempted to maintain a professional online presence.1 Physicians are interacting with patients both directly and indirectly. As described earlier, the CCSVI forum on http://www.ThisIsMS.com offers a venue for such interactions, and interventionalists regularly engage in a question–answer forum on this Web site. In addition, other physicians are active under pseudonyms or post messages or statements via a third party member of the forum. The challenge, however, is for any physician to understand how best to interact with patients in a “social” context, while still maintaining professional standards inherent to the physician–patient relationship.

[jimmylegs]

Untangling the Web of e-Health: Multiple Sclerosis Patients’ Perceptions of Online Health Information, Information Literacy, and the Impact on Treatment Decision Making (2013)
https://link.springer.com/chapter/10.10 ... 39371-6_35

Social media have changed how patients, caregivers and physicians produce, manage and use information when making medical treatment decisions. Because Multiple Sclerosis (MS) patients rely on online information to self-educate about treatment options, it is important to determine whether online decision-making tools are reliable and useful given patients’ knowledge of their disease and varying information literacy skills. Therefore, this study investigates the online search practices, perceptions, and usability of web-based information among MS patients. Perceptions of MS patients are measured by a questionnaire administered to a convenience sample of MS patients. Their online search practices are evaluated to determine the kind of information sought and used. Second, online search behaviors and needs are examined for trends related to MS disease type, stage and severity. Third, the relationship between online search behaviors and perceived impact on patient-neurologist communication is examined. Recommendations are offered for improved patient-neurologist communication and the development of inclusive treatment decision-making tools.

Table 3. Online visitation of health discussion forums
Forum...............................Daily.....1x/wk.....2-3/mo.....1x/mo.....<1x/mo.....Never
This Is MS (www.thisisms.com)..0%........0%..........0%...........0%..........11%.........89%

[ElliotB]

I think most people underestimate the seriousness of MS primarily because most cases are mild and the disease often goes into remission, perhaps giving a false sense of security. And like so many things, unless the cure is a simple one or a 'magic' pill, few are truly interested IMHO...

[jimmylegs]

Chapter 5 Work package 2a: practices and platforms for sharing experiences of multiple sclerosis patient experience online – interviews, participant observation and content analysis
fft https://www.ncbi.nlm.nih.gov/books/NBK401194/
"... Conclusions: online PEx is an integral part of the MS health information landscape. Developing and maintaining productive spaces for sharing PEx requires work and expertise (emotional and technical). People affected by MS share PEx as a means of actively engaging with and sometimes challenging mainstream medicine. This has consequences for biomedical research, health-care policy and practice. More research is needed on how health-care professionals, patient organisations, charities and patients produce and respond to online PEx in different conditions.
...
Observation and analysis of patient forums and online information sharing
Between June 2011 and July 2012, one researcher (FM) spent extended periods of time (approximately 1–3 hours per day, 3–4 days per week) reading MS-related websites, following news items and analysing forums. She familiarised herself with different platforms and key debates, analysing current as well as historic data within and across different websites. Although this involved moving between websites and sources of information, three forums were chosen as key ‘sites’ to focus on: the MS Society forum (www.mssociety.org.uk/forum); Shift.MS (http://shift.ms); and ThisIsMS (referred to as TIMS by its members) (www.thisisms.com). ..."