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Long Haulers

Research Studies and Informed Consent – A Short Reflection


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For me, an evaluation of a research study is always bound up with the practice of informed consent.

First – is the complete study available to me? Is the study available in the public domain or is access restricted to the study behind a pay wall?

I cannot evaluate a study if I am only able to read the Abstract or commentary on the study by others. My pockets are not deep enough to obtain the information in a research study that has financial restricted access.

For me, the excuses to place studies behind a pay wall because of the need to protect copyright or compensate those publishing the study hold no water.

Some questions I must be able to answer in order to satisfy my need for informed consent before acting on the information in a study are:

1 – who paid for the study

2 – what are the financial interests of all those involved in the production and publication of the study?

3 – how are all of the terms used in the study defined?

4 – how were the participants in the study selected?

5 – what happened during the study to all the participants?

There have been ample examples of research studies regarding the consequences of the use of psychotropic drugs that have misled the public while restricting public access to the study.

This is why I only offer studies to BB that are in the public domain with unrestricted access.

This is my body. If you want me to consider your research make the entire research freely available to me so that I can make an informed decision about my body.

Be Well.

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Good Day, Colin ...

The comments are particular to my point that I need access to studies to make informed decisions regarding my health care.

My experience has been one where I have received inaccurate information from health care providers who have all to often said "all the studies say so".

If one wished to explore this issue further I would think that the work of Robert Whitaker would provide an entry into the availability and misuse of psychotropic drug studies over the last 70 years.

I am of two minds regarding using the services of an agent like "Sci-Hub". That would be another discussion all together. Thank you for suggesting them.

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3 hours ago, [[N...] said:

I am of two minds regarding using the services of an agent like "Sci-Hub". That would be another discussion all together. Thank you for suggesting them.

Yeah. It is a somewhat controversial matter. But I think it worth me mentioning that, apparently, very many academics are supportive of Sci-hub. I do not think information such as this should be walled-off, accessible only by those who can afford it or have free access through their institution.

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And ... I believe that most folks recommending or promoting a research study have likely never read the study. They may have read the abstract or are passing on some blarney from a news clip or a so-called medical influencer.

I have found that working through a study can be quite the challenge. Oftentimes it is disheartening to find that the published conclusions of a study bear no resemblance to the promotions in the abstract.

When practising what I call "self-defence medicine" it most useful to gather as much legitimate information as possible before proceeding with any protocol.

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