MEpedia:Science guidelines

Thank you so much for deciding to contribute to MEpedia, and for rolling up your sleeves to work on the science! Let's dive right in.

Guidelines for writing in MEpedia

Goals

The basic goals of an MEpedia science article are to:

• Inform the reader of the basics
• Provide resources via links and citations so the reader can learn more

Start with a one-paragraph summary

At the start of every article on MEpedia, there should be a plain-language summary of the content below. Sometimes, it is easier to write the summary last; you will have a much clearer conception of the main idea once the rest of your writing is done. The summary should be above the table of contents.

Outlines

You can find MEpedia article outlines for potential treatments, medical hypotheses, and body systems, e.g.. Just copy the outline (Ctrl-C) and paste it (Ctrl-V) into the article to have a template you can use.

A note on ME v. CFS

We have separate pages for Myalgic Encephalomyelitis, ME/CFS and Chronic Fatigue Syndrome as well as SEID. The convention is that the terminology used in an ME-pedia article should match the terminology used in the underlying source. Where there is a tension between the term used in the source and the definition (e.g., ME defined by the Oxford criteria or ME/CFS defined by the Canadian Consensus Criteria), it may be useful for clarity to mention the definition used.

Guidelines for writing science in MEpedia

Just the facts

Science writing should be about what we know to be true, so far as our current understanding of science can tell us.

It's important to omit descriptive words that encourage the reader to think in a certain way, such as adjectives and adverbs. For example, "intriguingly", "disastrously", and other adverbs inform the reader what they ought to think about the next piece of information. The facts must speak for themselves.

Aim as close to the objective truth as possible.

Avoid the omission of credible sources with which you may disagree.

Less is more

The goal of an MEpedia page is to inform the reader of the basics and link out to resources that will provide a more thorough grounding in the topic. To best serve our community in the long run, that may mean reading a long article and typing one sentence (or even one phrase!) into MEpedia.

If you aren't certain how to interpret a study or summarize it, you may be able to find more information if you look on Phoenix Rising or Science for ME and search for the study's title in quotes. Often there will be a thread with detailed discussions of the study's implications. You may also check out the MEpedia Project Facebook group and chat about the study there.

Do your best to avoid cutting and pasting, or paraphrasing blocks of information. Find the simplest way to convey the information so that brain-fogged readers can understand.

No advice

Do not give advice or offer recommendations. If a particular professional or patient group gives advice, for example in dose of a potential treatment, make it clear who is advising this.

Use equivocal language

Recognize that our understanding of science changes by using equivocal language: "it may be that..." "it is possible that..." are good examples. Avoid language like "it has been proved" or "we now know".

Citation

Even if you are certain it is true, if you can't cite it, you can't say it. And unless it's common knowledge, be sure to cite everything you say, whether you're quoting the source or paraphrasing information from it.

You should be cautious of citing the following

• Unreferenced articles: If the article you are referencing does not list its own references at the end of the article, it’s probably not a reliable scientific reference.
• Blogs may be useful references when talking about the blog author or advocacy in general, but blogs should never be used as a reference for scientific evidence, as they are not peer-reviewed.
• A doctor's website or book may be a good source when talking about the doctor or the doctor’s ideas, but a doctor's website or book should not be used as a reference for scientific evidence, as it is not typically cited. These often reflect the doctor's opinion rather than an expert consensus.
• Wikipedia or other wikis may be good to list under the “Learn more” section of an article, but they should not be used as a reference for a particular fact. You may, however, find a reliable reference in the “References” section of a Wikipedia article. Wikipedia itself reports that Wikipedia is not a reliable source.
• Generally speaking, be aware that sources that are not published in a peer-reviewed journal may reflect only the authors' opinion.
• And remember that it’s always best to hunt down the original source of an idea you are citing. If your source merely cites a different source for that idea, it is best to use the original (“primary”) source instead of a copycat (“secondary”) source. However, secondary sources are fine if they are published review articles or consensus statements.

Suggested sources

See '''What counts as an academic source''' (Monash University)

General topics (tertiary sources)

• MSD Manuals - Consumer (basic topics) or Professional editions
• Medical dictionary citations shown for each term
• Merckx Manuals
• Medline Medical Encyclopedia
• Merriam-Webster Medical Dictionary
• NHS Health Conditions (UK health service)
• Drugs.com - medications, side effects, brand & generic names
• International Classification of Diseases v10 (2016) - World Health Organization
• DSM-5 - American psychiatric manual (2013) - many websites have the diagnostic criteria

ME/CFS High Quality sources (secondary sources)

• Canadian Consensus Criteria for ME (2003) - Copy citation
• International Consensus Criteria Primer for clinicians for Myalgic encephalomyelitis (2011) - Copy citation
• Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Institute of Medicine report 2015 - especially for SEID - Copy citation
• Fukuda criteria for CFS - Copy citation
• PACE trial main outcome (2011) - Copy citation
• OpenStax books - some images not for reuse

Searching for sources

• Google scholar
• Pubmed
• Google books
• Science direct - many topics including book chapters
• MedlinePlus
• ME Research UK very long list of articles

Suggested image sources

• WikiMedia Commons
• Public Health Image Library - CDC
• Creative Commons
• Google advanced images search - use the ''images for re-use'' option
• Gray's anatomy - all have a public domain license since copyright has expired
• pixabay.com - all images are public domain

Tertiary/secondary vs primary sources

If you have worked on medical pages on Wikipedia before, you may be aware that they encourage the use of reference books (tertiary sources), and review articles (secondary sources). There are few review articles on ME/CFS, so it is acceptable to cite primary sources, so long as you use the equivocal language described above.

Important studies and the age of works

The goal in scientific writing is to represent the most up-to-date information. For that reason, in biomedical research it's important to make the attempt to find primary and secondary sources that were published in the past several years.

An exception to this general guideline are particularly influential studies called seminal works. These notable studies are publications that changes the way the field thinks about a topic. Did your source define something new or introduce a novel idea? If so, it may be a seminal work.

A second exception are works that focus on history or discuss a sequence of events as an important aspect of the narrative.

A good example in ME might be the Fukuda criteria (1994) that presented a working definition for 'CFS'. Because it defines something new, it makes sense to cite it even in a modern paper, or in an article that discusses the history of ME. The notable studies category lists these key studies.

Types of studies

In vivo or in vitro studies

Studies on humans or animals are in vivo studies, studies on tissue, cells, etc are in vitro studies. Human studies carry the most weight.

Clinical trial phases

Clinical trials that have been classified by the FDA are given a phase number. Phase 3 and Phase 4 clinical trials are required for a drug to be approved for a particular use, so these trials carry the most scientific weight.

Randomized controlled trials

Randomized controlled trials (RCTs) are often regarded as a "good standard" in research; they involve patients being allocated randomly to a group and the use of a similar control group. Blinded RCTs mean the patients don't know what treatment they are getting - it may be dummy pills. In unblinded RCTs patients know the treatment they are getting, so the risk of a placebo effect is higher. In double-blinded trials, neither the patient nor the investigator knows the treatment being provided, so both the risk of a placebo effect and the risk of investigator bias are reduced. Double-blind, placebo-controlled studies are considered the most authoritative.

Subjective outcomes are a matter of the doctor's or patient's opinion, and may involve the use of questionnaires. These are less reliable than objective outcomes which include measured data such as heart rate, step count, or anything that can be measured in blood or urine, for example.

See also

• Commonly used citations
• How to insert references in the Visual Editor.
• How to insert references in the Source editor.
• Editorial guidelines
• Manual of style
• Article outlines
• How to contribute

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

adverse reaction Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

phase three Last phase of clinical trials before a drug can be approved for public use. Whereas Phase one assesses basic safety, and Phase two assesses basic efficacy, Phase three uses many trial participants to fully assess both safety and efficacy, and overall benefit/risk.

phase four Carried out after a drug is FDA-approved, including postmarket requirements and studies required by the study sponsor. Phase IV trials collect additional information about a drug's safety, efficacy, or optimal use.

randomized controlled trial (RCT) - A trial in which participants are randomly assigned to two groups, with one group receiving the treatment being studied and a control or comparison group receiving a sham treatment, placebo, or comparison treatment.

double blinded trial A clinical trial is double blinded if neither the participants nor the researchers know which treatment group they are allocated to until after the results are interpreted. This reduces bias. (Learn more: www.nottingham.ac.uk)

Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

(HR) - the number of times the heart beats within a certain time period, usually a minute

heart rate (HR) - the number of times the heart beats within a certain time period, usually a minute