MEpedia - User contributions [en]

Talk:Non-celiac gluten sensitivity

2022-02-10T03:50:49Z

EscapeTheFog:/* Salerno Criteria -- ~~~~ */ new section

== Salerno Criteria -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 03:50, February 10, 2022 (UTC) ==

In a [paper on brain fog and NCGS](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7454984/#pone.0238283.ref013) I saw mention of the "Salerno criteria" for diagnosing NCGS. The reference points to [Diagnosis of Non-Celiac Gluten Sensitivity (NCGS): The Salerno Experts’ Criteria](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4488826/) as the source of the criteria. This seems like a useful addition to the page, but I'm not yet sure how to present it since I'm not yet sure whether any consensus has developed on this criteria (I'm guessing not).

--[[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 03:50, February 10, 2022 (UTC)

Dynamic Neural Retraining System

2021-05-11T15:37:14Z

EscapeTheFog:Fix last name (Hooper => Hopper)

Annie Hopper created the '''Dynamic Neural Retraining System''' or '''DNRS''' in 2008, and states this is based on her recovery from "severe Multiple Chemical Sensitivity, Fibromyalgia and Electric Hypersensitivity Syndrome".<ref name="team">{{Cite web|url=https://retrainingthebrain.com/meet-the-dnrs-team/|title=Meet the DNRS™ Team|last=Tozer|first=James|website=Dynamic Neural Retraining System|language=en-CA|access-date=2020-09-23}}</ref> Hopper is not a doctor or a scientist.<ref name="team" /><ref name="Tuller2Sep2020">{{Cite web|date=2012-09-02|url=https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/|title =Trial By Error: What Is the Dynamic Neural Retraining System?|website=[[Virology blog]]|last=Tuller |first =David |author-link =David Tuller}}</ref>

==Theory ==
DNRS's website states that [[trauma]] is the cause of brain changes, and that trauma causes a "maladaptive stress response" which then causes certain physical symptoms, which the website lists.<ref name="about" /> However, the symptoms listed have many possible causes and DNRS is not an approved trauma recovery program.<ref name="about">{{Cite web|url=https://retrainingthebrain.com/how-the-program-works/|title=How The Program Works|last=Tozer|first=James|authorlink=|last2=|first2=|authorlink2=|date=|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2020-09-23}}</ref> Various scientific claims on the website about the long term effects of trauma and about how the program physically alters the brain do not have scientific references, including the claim that the program will help you create "new, healthy neural pathways".<ref name="about" />

==Components ==
The program is a psychologically based self-help approach that states it involves
*[[cognitive behavioral therapy]]
*[[mindfulness]] based cognitive restructuring
*emotional restructuring therapy
*[[neural linguistic programming]] (NLP)
*incremental training (a form of neural shaping)
*behaviour modification therapy"• cognitive-behaviour therapy"<ref name="about" />

The program states it takes 14hrs to complete the training, with 4 days suggested for this, followed by regular practice. It can be done online or by DVD. You are expected to commit to 6 months of practice, at a minimum of one hour per day.<ref name="about" />

==ME/CFS ==
The DNRS website claims it can "rewire chronic illness disease patterns in the brain" and that "the program is an effective treatment for [[Multiple chemical sensitivity|chemical sensitivities]], [[chronic fatigue syndrome]], [[fibromyalgia]] and many other chronic illnesses". No brain scans or brain imaging studies support this "rewiring the brain" claim, no other evidence is given to support this claim, and there is no evidence that brain-only dysfunction is the sole cause of any of these illnesses.<ref name="about" /> DNRS does not suggest any benefits that could lead to improvement in [[Mitochondrion|mitochondria]] or [[immune system]] functioning, or any change in [[dorsal root ganglia]] inflammation,<ref name="about" /> all of which research has found to be involved in ME/CFS. Peripheral nerve changes, the [[autonomic nervous system]] changes, and POTS are not mentioned.<ref name="about" /> The only scientific support is not published in full and not peer-reviewed, and appears as a graph and basic summary of some aspects of a preliminary report based on questionnaires from a group who tried DNRS. Only some results are reported, and it shows a high drop-out rate, and unsurprisingly shows that those who did not drop-out did improve to a degree.<ref name="Guenter2019" /> There is no information about whether participants had been professionally diagnosed, the results of the patients self-reporting CFS are not given, and full results are not reported, which is an indicator or [[research bias in ME/CFS|bias]].

ME/CFS is a neurological disease which is also multisystemic; symptoms include immune system dysfunction including altered [[cytokine]] expression, digestive / gastrointestinal symptoms that in some cases become severe enough to need tube feeding or even cause death from [[Sophia Mirza|kidney failure]], [[mitochondria dysfunction]], hormonal changes caused by the endocrine system, multiple types of pain, new intolerances to certain foods or sensory intolerances, alterations in the shape of [[erythrocyte|red blood cells]], changes in the circulatory system for example [[postural orthostatic tachycardia syndrome]] (POTS), and significant [[cognitive dysfunction]].<ref name="ICC2011primer" />

The theory of ME/CFS as a long-term consequence of [[trauma]] lacks evidence and has significant evidence against it, with many patients have no trauma history and most reporting that the onset if the disease was linked to a [[viral onset hypothesis|virus]], other [[infection]], or physical injury.<ref name="ICC2011primer" /> A study of military veterans by Murphy et al. (2003) could not find a link between [[Post-traumatic stress disorder]] and CFS-like symptoms.<ref name="veterans2003">{{Cite journal|last=Murphy|first=Frances M.|author-link=Frances Murphy|last2=Lee|first2=Kyung Y.|author-link2=Kyung Lee|last3=Mahan|first3=Clare M.|author-link3=Clare Mahan|last4=Natelson|first4=Benjamin H.|author-link4=Benjamin Natelson|last5=Kang|first5=Han K.|author-link5=Han Kang|date=2003-01-15|title=Post-Traumatic Stress Disorder and Chronic Fatigue Syndrome-like Illness among Gulf War Veterans: A Population-based Survey of 30,000 Veterans|url=https://academic.oup.com/aje/article/157/2/141/90101|journal=American Journal of Epidemiology|language=en|volume=157|issue=2|pages=141–148|doi=10.1093/aje/kwf187|issn=0002-9262|quote=|via=}}</ref> Heins et al. (2011) found no relationship between childhood maltreatment and response to [[Cognitive behavioral therapy|CBT]] therapy for CFS.<ref name="Heins2011">{{Cite journal|last=Heins|first=Marianne J.|author-link=Marianne Heins|last2=Knoop|first2=Hans|author-link2=Hans Knoop|last3=Lobbestael|first3=Jill|author-link3=Jill Lobbestael|last4=Bleijenberg|first4=Gijs|author-link4=Gijs Bleijenberg|author-link5=|date=Dec 2011|title=Childhood maltreatment and the response to cognitive behavior therapy for chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/m/pubmed/22118383/|journal=Journal of Psychosomatic Research|volume=71|issue=6|pages=404–410|doi=10.1016/j.jpsychores.2011.05.005|issn=1879-1360|pmid=22118383|quote=|via=}}</ref><ref name="Clark, 2018">{{Citation
| last1 = Clark | first1 = James E. | authorlink1 = James Clark
| last2 = Davidson | first2 = Sean L. | authorlink2 = Sean Davidson
| last3 = Maclachlan | first3 = Laura | authorlink3 = Laura Maclachlan
| last4 = Newton | first4 = Julia | authorlink4 = Julia Newton
| last5 = Watson | first5 = Stuart | authorlink5 = Stuart Watson
| title = Rethinking childhood adversity in chronic fatigue syndrome
| journal = Fatigue: Biomedicine, Health & Behavior | volume = | issue = | page = | date = 2017 | pmid =
| doi = 10.1080/21641846.2018.1384095
}}</ref><ref name="Morris2019">{{Cite journal|last=Morris|first=Gerwyn|author-link=Gerwyn Morris|last2=Berk|first2=Michael|author-link2=Michael Berk|last3=Maes|first3=Michael|author-link3=Michael Maes|last4=Carvalho|first4=André F.|author-link4=André Carvalho|last5=Puri|first5=Basant K.|author-link5=Basant Puri|date=2019-01-26|title=Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations|url=https://doi.org/10.1007/s12035-019-1498-1|journal=Molecular Neurobiology|language=en|volume=|issue=|pages=1-25|doi=10.1007/s12035-019-1498-1|issn=1559-1182|quote=|via=}}</ref>
{{See also|Trauma}}

==Risks and safety ==
There is no scientific evidence that DNRS has positive benefits or that it is a safe treatment, no clinical trials have been conducted, and DNRS was not developed by a medical professional or scientist.<ref name="about" /><ref name="Guenter2019" />

The hallmark symptom of ME/CFS is [[post-exertional malaise]] which can be triggered by too much cognitive effort; in [[severe and very severe ME]] watching too much TV or listening to audio may cause post-exertional malaise or permanent deterioration, which may mean the commitment and work needed by DNRS is both impossible and very harmful.<ref name="ICC2011primer">{{citation
| last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers
| last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande
| last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir
| last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas
| last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick
| last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell
| last7 = Staines | first7 = D | authorlink7 = Donald Staines
| last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles
| last9 = Speight | first9 = N | authorlink9 = Nigel Speight
| last10 = Vallings | first10= R | authorlink10= Rosamund Vallings
| last11 = Bateman | first11= L | authorlink11= Lucinda Bateman
| last12 = Bell | first12= DS | authorlink12= David Bell
| last13 = Carlo-Stella | first13= N | authorlink13= Nicoletta Carlo-Stella
| last14 = Chia | first14= J | authorlink14= John Chia
| last15 = Darragh | first15= A | authorlink15= Austin Darragh
| last16 = Gerken | first16= A | authorlink16= Anne Gerken
| last17 = Jo | first17= D | authorlink17= Daehyun Jo
| last18 = Lewis | first18= DP | authorlink18= Donald Lewis
| last19 = Light | first19= AR | authorlink19= Alan Light
| last20 = Light | first20= KC | authorlink20= Kathleen Light
| last21 = Marshall-Gradisnik | first21= S | authorlink21= Sonya Marshall-Gradisnik
| last22 = McLaren-Howard | first22= J | authorlink22= John McLaren-Howard
| last23 = Mena | first23= I | authorlink23= Ismael Mena
| last24 = Miwa | first24= K | authorlink24= Kunihisa Miwa
| last25 = Murovska | first25= M | authorlink25= Modra Murovska
| last26 = Stevens | first26= SR | authorlink26= Staci Stevens
| title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners
| date = 2012
| isbn = 978-0-9739335-3-6
| url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
}}</ref>The hallmark symptom of ME/CFS is [[post-exertional malaise]] which can be triggered by too much cognitive effort; in [[severe and very severe ME]] watching too much TV or listening to audio may cause post-exertional malaise or permanent deterioration, which may mean the commitment and work needed by DNRS is both impossible and very harmful.<ref name="ICC2011primer">{{citation
| last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers
| last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande
| last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir
| last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas
| last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick
| last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell
| last7 = Staines | first7 = D | authorlink7 = Donald Staines
| last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles
| last9 = Speight | first9 = N | authorlink9 = Nigel Speight
| last10 = Vallings | first10= R | authorlink10= Rosamund Vallings
| last11 = Bateman | first11= L | authorlink11= Lucinda Bateman
| last12 = Bell | first12= DS | authorlink12= David Bell
| last13 = Carlo-Stella | first13= N | authorlink13= Nicoletta Carlo-Stella
| last14 = Chia | first14= J | authorlink14= John Chia
| last15 = Darragh | first15= A | authorlink15= Austin Darragh
| last16 = Gerken | first16= A | authorlink16= Anne Gerken
| last17 = Jo | first17= D | authorlink17= Daehyun Jo
| last18 = Lewis | first18= DP | authorlink18= Donald Lewis
| last19 = Light | first19= AR | authorlink19= Alan Light
| last20 = Light | first20= KC | authorlink20= Kathleen Light
| last21 = Marshall-Gradisnik | first21= S | authorlink21= Sonya Marshall-Gradisnik
| last22 = McLaren-Howard | first22= J | authorlink22= John McLaren-Howard
| last23 = Mena | first23= I | authorlink23= Ismael Mena
| last24 = Miwa | first24= K | authorlink24= Kunihisa Miwa
| last25 = Murovska | first25= M | authorlink25= Modra Murovska
| last26 = Stevens | first26= SR | authorlink26= Staci Stevens
| title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners
| date = 2012
| isbn = 978-0-9739335-3-6
| url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
}}</ref>

Some components of the program such as [[cognitive behavioral therapy]], mindfulness and stress management techniques have not been to be effective in the majority of ME/CFS, and some have resulted in substantial rates of harm. If used as a trauma recovery or stress management program, it is not known how this compares with well-established, proven treatments.

==Evidence ==
No clinical trials have been conducted to show the effectiveness or potential risks of DNRS, and there is no evidence that the brain is "rewired" or "retrained" or that neural networks within the brain are altered by the treatment.<ref name="about" />

Evidence consists of an unpublished presentation, which has not been peer reviewed, part of which can be found on the DNRS website, and a number of claims by coaches or facilitators who stated they recovered from multiple illnesses using it.<ref name="ResearchSep2020">{{Cite web|url=https://retrainingthebrain.com/research-3/|title=Research|last=Tozer|first=James|authorlink=|last2=|first2=|authorlink2=|date=n.d.|website=Dynamic Neural Retraining System|language=en-CA|archive-url=|archive-date=|url-status=|access-date=2020-09-23}}</ref> According to the presentation, brain imaging or brain function tests were not used to assess neuroplasticity after the DNRS course, and all results were based on patient questionnaires.<ref name="Guenter2019">{{Citation|vauthors=Guenter et al|first=|title=Neuroplasticity-based treatment for fibromyalgia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes|publisher=|date=2019|url=|volume=|issue=|pages=|chapter=|edition=|last2=|first2=|author-link=}}</ref>

The presentation on the website does not provide results separately for patients with ME/CFS, although some patients reported having it.<ref name="Guenter2019" />

==Learn more ==
*[https://www.virology.ws/2020/09/02/trial-by-error-what-is-the-dynamic-neural-retraining-system/ Trial By Error: What Is the Dynamic Neural Retraining System?] - [[Virology blog]]
*[https://paradigmchange.me/wp/retraining/ Some Comments on So-Called “Brain Retraining” Programs] - Psychologist Lisa Petrison comments on the unproven scientific claims and potential harm - Paradigmchange.me
*[https://retrainingthebrain.com/how-the-program-works/ How the program works - DNRS]

==See also ==
*[[Brain training]]

==References ==
{{Reflist}}

[[Category:Brain training]]
[[Category:Potential treatments]]
[[Category:Psychological and behavioral therapies]]

Lactulose breath test

2019-08-03T19:29:04Z

EscapeTheFog:/* Cost and availability */ Link to Metabolic Solutions

The Lactulose breath test is an indirect method of measuring bacteria in the digestive tract. It can indicate the approximate population, location, and some information about the type of bacteria. It is used to diagnose [[Small intestine bacterial overgrowth|Small Intestine Bacteria Overgrowth]] (SIBO).

==Theory==

Bacteria in the digestive tract produce gasses as a byproduct of food metabolism. Aerobic bacteria produce hydrogen gas, whereas anaerobic bacteria produce methane gas.

Both hydrogen and methane gasses produced by intestinal bacteria can be detected on a person's breath. Since food travels gradually through the small intestine before reaching the large intestine, the change in gas levels over time can indicate the location and population of bacteria.

Diagnosis of SIBO via breath testing is controversial due to the species-dependent nature of breath tests and the lack of an agreed threshold for a positive test.

== Procedure ==
The test is preceded by a 24 hour preparation period, which includes a limited diet and a period of fasting. Baseline gas levels are measured from the patients breath at the beginning of the test. In order to prevent results from being affected by food already in the digestive tract, the procedure continues only if the baseline gas levels are below a certain threshold.

A small amount of Lactulose solution is consumed by the patient. The patient's breath is sampled periodically over the course of a few hours, typically every 15 to 30 minutes. The gas levels from each sample are measured and recorded, then typically plotted a on a line graph. SIBO may be indicated if one or both of the following criteria are met:
* Gas level rises above a certain threshold within a certain timeframe. (The idea is that an early rise must be from bacteria in the small intestine, as food would not have reached the large intestine yet.)
* Gas level plot shows a double peak. (The idea is that this indicates two clusters of bacteria - one in the small intestine, and one in the large intestine.)
Test equipment may measure the concentration (in PPM) of hydrogen gas, methane gas, or both. Measuring the concentration of both gasses is ideal to ensure that both aerobic and anaerobic bacteria are detected. However, testing may be limited to measuring only hydrogen due to available equipment and/or cost considerations.

==Evidence==

==Subgroup==

==Cost and availability==
Testing may be done in-office or at home using portable, possibly even handheld, breath testing equipment. Alternatively, breath samples may be collected using a kit then shipped to a remote lab for analysis.
* [https://www.covita.net/gastrolyzer.html Gastro+] is a handheld hydrogen breath test machine which available for use through some medical providers
* [https://www.covita.net/gastrolyzer.html GastroCHECK] is a desktop hydrogen and methane breath test machine which is available for use through some medical providers
* [https://www.gdx.net/product/bacterial-overgrowth-of-the-small-intestine-sibo-test Genova Diagnostics - Small Intestinal Bacterial Overgrowth test] is a collection kit which is sent via FedEx courier to the company's lab for analysis. Kits are sold through clinics / doctors.
* [https://www.truehealthlabs.com/Small-Intestine-Bacterial-Overgrowth-SIBO-Breath-p/gen_sibo_3hours.htm TrueHealthLabs.com] sells SIBO test kits from Genova Diagnostics direct to patients, without requiring a prescription.
* [https://www.metsol.com/ Metabolic Solutions] sells a collection kit that is shipped to the company's lab for analysis. Kits are sold direct to consumer through their website.
* [https://www.breathtests.com/ QuinTron] sells equipment for breath testing in-office, and kits for in-home collection. Kits require a prescription.

==See also==

==Learn more==
==References==
{{reflist}}

[[Category:Tests]]
[[Category:Digestive system]]

Talk:Small intestinal bacterial overgrowth

2019-07-14T19:26:46Z

EscapeTheFog:/* Potential References */

=== Potential References ===
A few papers that are good candidates for source material and citations for existing text in the article:

* https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12531
* [https://www.gastrojournal.org/article/S0016-5085(19)37311-1/pdf A Large Scale Evaluation of the Small Intestinal Microbiome in Subjects on Proton Pump Inhibitors] - Found no link between PPI use and SIBO
* [https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2036.2010.04436.x Clinical trial: the combination of rifaximin with partially hydrolysed guar gum is more effective than rifaximin alone in eradicating small intestinal bacterial overgrowth]

== SBI treatment -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT) ==

Recently saw a few references to a "SBI" - immunoglobulin derived from bovine serum - as a treatment for SIBO. The wikipedia page on https://en.wikipedia.org/wiki/Serum-derived_bovine_immunoglobulin/protein_isolate mentions this. Would like to include SBI in the treatments section if I can find good source articles.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT)

As I read further, it seems like this is broader than a SIBO treatment. May warrant a separate article.

A few links that may be helpful:

* https://www.orthomolecularproducts.com/assets/1/30/PDN_SBI-Protect_powder.pdf - has a number of references which may be good primary sources
* https://drgaryk.com/2018/04/07/sbi-protect-help-for-leaky-gut-and-immune-system-issues/ - may be useful as background, but probably not as a reference

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 11:21, June 24, 2019 (EDT)

* http://drrusciodc.com/irf/# - is the product page (though in this case it's not called "SBI"). It has a number of references that may be helpful primary sources here.
* https://microbiomelabs.com/products/megaigg2000/ - another product with references to primary sources

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:51, July 3, 2019 (EDT)

Talk:Glucocorticoid

2019-07-06T01:43:13Z

EscapeTheFog:/* Misspelling in first sentence? -- ~~~~ */ new section

== References for expansion -- [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:54, July 5, 2019 (EDT) ==

Noting here for expansion when it's again possible to reference the material--

* http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf<ref name="">{{Cite web|url=http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf|title=MEAction Research Summary 2019|last=Selzer|first=Jaime|author-link=Jaime Selzer|website=[[MEAction]]|date=Jun 19, 2019}}</ref>
* https://www.britannica.com/science/glucocorticoid

[[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:54, July 5, 2019 (EDT)
::I don't know what the issue is with references not being generated. You can always use the Manual tab instead and fill in the date and author there. The MEAction one is a pdf and those normally don't work for automatically generating unless it's a citation. I've typed in info for the pdf on here for you [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:26, July 5, 2019 (EDT)

== Misspelling in first sentence? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 21:43, July 5, 2019 (EDT) ==

First sentence uses "Glucorticoid" but article title is "Glucocorticoid". Is this intentional?

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 21:43, July 5, 2019 (EDT)

Talk:Small intestinal bacterial overgrowth

2019-07-03T05:51:31Z

EscapeTheFog:/* SBI treatment -- EscapeTheFog (talk) 10:32, June 24, 2019 (EDT) */ More references

=== Potential References ===
A few papers that are good candidates for source material and citations for existing text in the article:

* https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12531
* [https://www.gastrojournal.org/article/S0016-5085(19)37311-1/pdf A Large Scale Evaluation of the Small Intestinal Microbiome in Subjects on Proton Pump Inhibitors] - Found no link between PPI use and SIBO

== SBI treatment -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT) ==

Recently saw a few references to a "SBI" - immunoglobulin derived from bovine serum - as a treatment for SIBO. The wikipedia page on https://en.wikipedia.org/wiki/Serum-derived_bovine_immunoglobulin/protein_isolate mentions this. Would like to include SBI in the treatments section if I can find good source articles.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT)

As I read further, it seems like this is broader than a SIBO treatment. May warrant a separate article.

A few links that may be helpful:

* https://www.orthomolecularproducts.com/assets/1/30/PDN_SBI-Protect_powder.pdf - has a number of references which may be good primary sources
* https://drgaryk.com/2018/04/07/sbi-protect-help-for-leaky-gut-and-immune-system-issues/ - may be useful as background, but probably not as a reference

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 11:21, June 24, 2019 (EDT)

* http://drrusciodc.com/irf/# - is the product page (though in this case it's not called "SBI"). It has a number of references that may be helpful primary sources here.
* https://microbiomelabs.com/products/megaigg2000/ - another product with references to primary sources

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:51, July 3, 2019 (EDT)

Talk:Small intestinal bacterial overgrowth

2019-07-03T05:24:41Z

EscapeTheFog:Fix link & title case

=== Potential References ===
A few papers that are good candidates for source material and citations for existing text in the article:

* https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12531
* [https://www.gastrojournal.org/article/S0016-5085(19)37311-1/pdf A Large Scale Evaluation of the Small Intestinal Microbiome in Subjects on Proton Pump Inhibitors] - Found no link between PPI use and SIBO

== SBI treatment -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT) ==

Recently saw a few references to a "SBI" - immunoglobulin derived from bovine serum - as a treatment for SIBO. The wikipedia page on https://en.wikipedia.org/wiki/Serum-derived_bovine_immunoglobulin/protein_isolate mentions this. Would like to include SBI in the treatments section if I can find good source articles.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT)

As I read further, it seems like this is broader than a SIBO treatment. May warrant a separate article.

A few links that may be helpful:

* https://www.orthomolecularproducts.com/assets/1/30/PDN_SBI-Protect_powder.pdf - has a number of references which may be good primary sources
* https://drgaryk.com/2018/04/07/sbi-protect-help-for-leaky-gut-and-immune-system-issues/ - may be useful as background, but probably not as a reference

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 11:21, June 24, 2019 (EDT)

Talk:Small intestinal bacterial overgrowth

2019-07-03T05:20:42Z

EscapeTheFog:Study which found no link between PPI use and SIBO

=== Potential References ===
A few papers that are good candidates for source material and citations for existing text in the article:

* https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12531
* [https://www.gastrojournal.org/article/S0016-5085(19)37311-1/pdf?referrer=https%3A%2F%2Fmail.google.com%2Fmail%2Fu%2F0%3Fui%3D2%26ik%3Dd48021c677%26view%3Dlg%26permmsgid%3Dmsg-f%3A1637614414851751581 A LARGE SCALE EVALUATION OF THE SMALL INTESTINAL
MICROBIOME IN SUBJECTS ON PROTON PUMP INHIBITORS] - Found no link between PPI use and SIBO

== SBI treatment -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT) ==

Recently saw a few references to a "SBI" - immunoglobulin derived from bovine serum - as a treatment for SIBO. The wikipedia page on https://en.wikipedia.org/wiki/Serum-derived_bovine_immunoglobulin/protein_isolate mentions this. Would like to include SBI in the treatments section if I can find good source articles.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT)

As I read further, it seems like this is broader than a SIBO treatment. May warrant a separate article.

A few links that may be helpful:

* https://www.orthomolecularproducts.com/assets/1/30/PDN_SBI-Protect_powder.pdf - has a number of references which may be good primary sources
* https://drgaryk.com/2018/04/07/sbi-protect-help-for-leaky-gut-and-immune-system-issues/ - may be useful as background, but probably not as a reference

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 11:21, June 24, 2019 (EDT)

Talk:Oregano

2019-07-03T05:01:55Z

EscapeTheFog:/* Sources worth considering -- ~~~~ */ new section

== Sources worth considering -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:01, July 3, 2019 (EDT) ==

* [https://www.ncbi.nlm.nih.gov/pubmed/11855736 Antifungal activities of origanum oil against Candida albicans]

User:EscapeTheFog

2019-07-01T04:10:14Z

EscapeTheFog:/* ME/CFS Topics on me-pedia */

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]
* [[Photophobia]]
* [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome]], and [[ME/CFS]]
* [[PACE trial]]
* [[Vitamin C]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* [[Brain fog|Brain Fog]]
* [[Azithromycin]]
* [[Clarithromycin]]
* [[Rifampicin]]
* [[Metronidazole]]
* [[Neomycin]]
* [[Ketogenic diet]]

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020

Fecal matter transplant

2019-06-30T19:27:39Z

EscapeTheFog:Add Digestive system category.

A '''fecal matter transplant''' or fecal microbiota transplant (FMT) is a therapy that involves the transfer of fecal waste from a healthy donor to the colon of a patient. It's most common use is in the treatment of recurrent ''[[clostridium difficile]]'' (''c.diff'') infections. Interest in fecal matter transplants has grown in those experiencing chronic gastric intestinal problems, including [[chronic fatigue syndrome]].

==Methods==
Fecal matter from a person with healthy [[Microbiome|gut flora]] is mixed with saline, strained, inserted into the recipient patient with via a colonoscopy, endoscopy, sigmoidoscopy, or enema in order to recolonize the ill person's bowels.<ref>{{Cite journal|last=Bakken|first=Johan S.|last2=Borody|first2=Thomas|last3=Brandt|first3=Lawrence J.|last4=Brill|first4=Joel V.|last5=Demarco|first5=Daniel C.|last6=Franzos|first6=Marc Alaric|last7=Kelly|first7=Colleen|last8=Khoruts|first8=Alexander|last9=Louie|first9=Thomas|date=2011-12-01|title=Treating Clostridium difficile Infection With Fecal Microbiota Transplantation|url=http://www.sciencedirect.com/science/article/pii/S1542356511008913|journal=Clinical Gastroenterology and Hepatology|volume=9|issue=12|pages=1044–1049|doi=10.1016/j.cgh.2011.08.014|issn=1542-3565}}</ref><ref>{{Cite web|url=http://thefecaltransplantfoundation.org/what-is-fecal-transplant/|title=What is FMT? – The Fecal Transplant Foundation|language=en-US|access-date=2019-06-11}}</ref> It is recommended that the donor be someone close to the patient, with the first choice being a spouse or significant other, but other close friends, relatives, or a “universal donor” source may be warranted. The physician should ensure that the “universal donor” source employs rigorous screening and testing standards.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref> Testing includes screening the donors’ blood for diseases such as [[HIV/AIDS|HIV]] and [[hepatitis]] and testing their stool for bacterial pathogens, ''[[Giardia lamblia|giardia]]'' and ''cryptosporidium'', parasites, and ''C. difficile''.<ref>{{Cite web|url=https://scienceline.org/2011/11/fecal-transplants-the-scoop-on-therapeutic-poop/|title=Fecal transplants: the scoop on therapeutic poop|date=2011-11-15|website=Scienceline|language=en-US|access-date=2019-06-11}}</ref>

== Risk ==
According to the [[U.S. Food and Drug Administration]] (FDA), FMT may cause serious or life threatening infections.<ref name=":2">{{Cite web|url=https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/important-safety-alert-regarding-use-fecal-microbiota-transplantation-and-risk-serious-adverse|title=Important Safety Alert Regarding Use of Fecal Microbiota for Transplantation and Risk of Serious Adverse Reactions Due to Transmission of Multi-Drug Resistant Organisms|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref>

=== Multi-drug resistant organisms ===
The FDA reported two cases of bacterial infections with multi-drug resistant organisms (MDROs) that occurred due to use of investigational FMT.<ref name=":2" /> In both cases, the FMT was prepared from stool obtained from the same donor, and the recipients became infected with extended-spectrum beta-lactamase (ESBL)-producing Escherichia coli (E.coli), which was later found to be present in donor stool.<ref name=":2" /> One of the recipients died.<ref name=":2" /> As a result of these cases, the FDA has determined that donor screening must include questions that address risk factors for MDROs and donor stools must be tested for MDROs.<ref name=":2" />

== Availability ==

===United States===
FMT is regulated by the [[U.S. Food and Drug Administration]] (FDA), which has not approved it for any use.<ref>{{Cite web|url=https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-potential-risk-serious-infections-caused-multi-drug-resistant-organisms|title=FDA In Brief: FDA warns about potential risk of serious infections caused by multi-drug resistant organisms related to the investigational use of Fecal Microbiota for Transplantation|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref> The [[FDA]] has classified human stool as a biological agent and determined that its use in fecal matter transplantation (FMT) therapy and other research should be regulated to ensure patient safety. In order for a physician or researcher to use FMT in a clinical trial or to treat any condition other than reoccurring, antibiotic-resistant ''clostridium difficile'' infections, an investigational new drug (IND) permit is required.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref>

===United Kingdom===
In the [[United Kingdom|UK]], some clinics, such as the [http://taymount.com/ Taymount Clinic] offer FMT for a wide range of GI and chronic illnesses.<ref>{{Cite web|url=https://taymount.com/|title=Gut Flora Transplants|website=Taymount Clinic|language=en-GB|access-date=2019-06-11}}</ref>

===Australia===
[[Australia]] has some of the most active FMT clinics, such as the Centre for Digestive Diseases in Sydney, under the direction of Thomas J. Borody, MD, PhD.<ref>{{Cite web|url=https://centrefordigestivediseases.com/|title=The Centre for Digestive Diseases – The centre of excellence for gastroenerology|language=en-US|access-date=2019-06-11}}</ref> Dr Borody has conducted many FMT studies over the past 30 years on FMT, including studies assessing efficacy for chronic fatigue syndrome, although criticism regarding patient selection and follow-up have caused doubt on the study results. (Critique can be found in a section [[Fecal matter transplant#Study using FMT for chronic fatigue syndrome|below]].) Additionally Dr Paul Froomes, Melbourne, performs FMT.<ref>{{Cite web|url=http://www.drpaulfroomes.com.au/|title=Home|website=Dr Paul Froomes - Consultant Gastroenterologist {{!}} Melbourne|language=en-US|access-date=2019-06-11}}</ref>

===Norway===
In 2017, the Research Council of [[Norway]] (Norges forskningsråd) announced undertaking a randomized controlled trial for use of fecal microbiota transplant in [[chronic fatigue syndrome]].<ref name=":0">{{Cite web|url=https://clinicaltrials.gov/ct2/show/NCT03691987|title=The Comeback Study - Full Text View - ClinicalTrials.gov|website=clinicaltrials.gov|language=en|access-date=2019-06-11}}</ref>

A randomized, placebo-controlled trial called "The Comeback" study is currently underway at the University Hospital of North Norway. Eighty ME/CFS patients will be followed up for 12 months after receiving either fecal microbiota transplantation (FMT) or a placebo. The trial will take many years to complete. Final results are expected in 2023.<ref name=":0" />

==Home experimentation==
The medical cautions and strict FDA regulation hasn't stopped people, especially those with GI illnesses, such as [[ulcerative colitis]] or [[irritable bowel syndrome]], from experimenting on their own with FMT. Recipes for do-it-yourself FMT are abundant online, including Dr. [[Sarah Myhill]]'s protocol, Probiotic Therapy Home Infusion Protocol.<ref>{{Cite web|url=http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf|title=Probiotic Therapy Home Infusion Protocol|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=2019-06-11}}</ref>

==Critique of study using FMT for chronic fatigue syndrome==
A 2012 study by Borody, at el, using a variety of antibiotics followed by one to three fecal matter transplants (and in six patients an oral course of cultured bacteria), reported a 70% rate of improvement of sleep and "lethargy/fatigue" symptoms in [[Fukuda criteria|Fukuda]] CFS patients recruited from a clinic for digestive disorders.<ref name=":1">{{Cite journal|last=Borody|first=Thomas J|author-link=|last2=Nowak|first2=Anna|author-link2=|last3=Finlayson|first3=Sarah|author-link3=|author-link4=|author-link5=|date=Dec 2012|title=The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy|url=https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA|journal=Journal of the Australasian College of Nutritional and Environmental Medicine|volume=31|issue=3|pages=3-8|quote=|via=}}</ref> The authors reported a 58% success rate at long term followup 15-20 years post-treatment, but only 12 patients (out of the original 60) were contacted at that point. Accordingly, the long-term followup results would not have been statistically significant.

That study also neglected to use any objective outcome measurements, a control group was not included, and the symptoms used to determine a successful outcome regarding "CFS symptoms" did not account for physical limitations or many other fundamental ME/CFS symptoms. It is not clear how many symptoms were measured before and after treatment, hence it cannot be determined if any results were statistically significant. Furthermore, all patients were recruited from a clinic for digestive disorders, which would suggest that they were not typical ME/CFS patients. The recruitment criteria did not require that patients have the symptom of [[post-exertional malaise]], hence the results may not be applicable to ME/CFS patients meeting more stringent criteria.

There was no study protocol published, and there is no explanation provided for the results first being published as a full paper fifteen years after the initial treatments took place. A conference poster abstract from 1995 indicates that other symptoms were tested at an earlier followup,<ref>{{Cite journal|last=Borody|first=TJ|author-link=|author-link2=|author-link3=|author-link4=|author-link5=|date=1995|title=Bacteriotherapy for Chronic Fatigue Syndrome – A long-term follow-up study|url=|journal=Proceedings of ACMA Complementary Medicine Sydney 1995|volume=|issue=|pages=|quote=|via=}}</ref> but those symptoms are not reported or discussed in the 2012 long-term followup, which may indicate that the treatment was less successful than reported. The poster abstract does not appear to have been published, and the full long-term followup was published in an obscure online journal with no apparent peer review process.

This study has not been replicated, and no other studies for FMT and ME/CFS have been conducted. Accordingly, the existing evidence base in favor of this therapy is very weak.

==Research studies==
*2012, The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy<ref name=":1" />
*2013, High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients<ref>{{Cite journal|last=Frémont|first=Marc|author-link=|last2=Coomans|first2=Danny|author-link2=|last3=Massart|first3=Sebastien|author-link3=|last4=De Meirleir|first4=Kenny|author-link4=Kenny De Meirleir|author-link5=|date=Aug 2013|title=High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients|url=https://linkinghub.elsevier.com/retrieve/pii/S1075996413000929|journal=Anaerobe|language=en|volume=22|issue=|pages=50–56|doi=10.1016/j.anaerobe.2013.06.002|quote=|via=}}</ref>
*2016, Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders<ref>{{Cite journal|last=Evrensel|first=Alper|last2=Ceylan|first2=Mehmet Emin|date=2016-08-31|title=Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders|url=http://www.cpn.or.kr/journal/view.html?doi=10.9758/cpn.2016.14.3.231|journal=Clinical Psychopharmacology and Neuroscience|language=en|volume=14|issue=3|pages=231–237|doi=10.9758/cpn.2016.14.3.231|issn=1738-1088}}</ref>

==See also==
*[[Microbiome]]
==Learn more==
*[https://designershitdocumentary.com/ Designer Shit] – a documentary about FMT scheduled for release sometime in 2019
*[http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf Home Infusion Protocol] published by [[Sarah Myhill]]
*[https://www.idsociety.org/FMT/ Infectious Diseases Society of America Information about FDA regulations re: FMT]
*[http://thefecaltransplantfoundation.org/what-is-fecal-transplant/ The Fecal Transplant Foundation]

==References==
<references />

[[Category:Potential treatments]]
[[Category:Probiotics]]
[[Category:Digestive system]]

User:EscapeTheFog

2019-06-30T19:27:28Z

EscapeTheFog:/* Contribute To */ Ketogenic diet

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]
* [[Photophobia]]
* [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome]], and [[ME/CFS]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* [[Brain fog|Brain Fog]]
* [[Azithromycin]]
* [[Clarithromycin]]
* [[Rifampicin]]
* [[Metronidazole]]
* [[Neomycin]]
* [[Ketogenic diet]]

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020

Intestinal permeability

2019-06-30T19:26:22Z

EscapeTheFog:Add Digestive system category.

In a healthy [[gastrointestinal system|digestive tract]], the intestinal walls provide a tight, selective barrier to allow the absorption of nutrients but prevent the entry of bacteria or pathogens.

== Potential Treatments ==
* [[Glutamine]]

==See also==

*[[Gastrointestinal system]]
*[[Leaky gut diet]]
*[[Zonulin]]

==References==
<references />

[[Category:Body systems]]
[[Category:Diagnoses]]
[[Category:Digestive signs and symptoms]]
[[Category:Digestive system]]
[[Category:Signs and symptoms]]

Lactulose breath test

2019-06-30T19:23:35Z

EscapeTheFog:Add Digestive system category.

The Lactulose breath test is an indirect method of measuring bacteria in the digestive tract. It can indicate the approximate population, location, and some information about the type of bacteria. It is used to diagnose [[Small intestine bacterial overgrowth|Small Intestine Bacteria Overgrowth]] (SIBO).

==Theory==

Bacteria in the digestive tract produce gasses as a byproduct of food metabolism. Aerobic bacteria produce hydrogen gas, whereas anaerobic bacteria produce methane gas.

Both hydrogen and methane gasses produced by intestinal bacteria can be detected on a person's breath. Since food travels gradually through the small intestine before reaching the large intestine, the change in gas levels over time can indicate the location and population of bacteria.

Diagnosis of SIBO via breath testing is controversial due to the species-dependent nature of breath tests and the lack of an agreed threshold for a positive test.

== Procedure ==
The test is preceded by a 24 hour preparation period, which includes a limited diet and a period of fasting. Baseline gas levels are measured from the patients breath at the beginning of the test. In order to prevent results from being affected by food already in the digestive tract, the procedure continues only if the baseline gas levels are below a certain threshold.

A small amount of Lactulose solution is consumed by the patient. The patient's breath is sampled periodically over the course of a few hours, typically every 15 to 30 minutes. The gas levels from each sample are measured and recorded, then typically plotted a on a line graph. SIBO may be indicated if one or both of the following criteria are met:
* Gas level rises above a certain threshold within a certain timeframe. (The idea is that an early rise must be from bacteria in the small intestine, as food would not have reached the large intestine yet.)
* Gas level plot shows a double peak. (The idea is that this indicates two clusters of bacteria - one in the small intestine, and one in the large intestine.)
Test equipment may measure the concentration (in PPM) of hydrogen gas, methane gas, or both. Measuring the concentration of both gasses is ideal to ensure that both aerobic and anaerobic bacteria are detected. However, testing may be limited to measuring only hydrogen due to available equipment and/or cost considerations.

==Evidence==

==Subgroup==

==Cost and availability==
Testing may be done in-office or at home using portable, possibly even handheld, breath testing equipment. Alternatively, breath samples may be collected using a kit then shipped to a remote lab for analysis.
* [https://www.covita.net/gastrolyzer.html Gastro+] is a handheld hydrogen breath test machine which available for use through some medical providers
* [https://www.covita.net/gastrolyzer.html GastroCHECK] is a desktop hydrogen and methane breath test machine which is available for use through some medical providers
* [https://www.gdx.net/product/bacterial-overgrowth-of-the-small-intestine-sibo-test Genova Diagnostics - Small Intestinal Bacterial Overgrowth test] is a collection kit which is sent via FedEx courier to the company's lab for analysis. Kits are sold through clinics / doctors.
* [https://www.truehealthlabs.com/Small-Intestine-Bacterial-Overgrowth-SIBO-Breath-p/gen_sibo_3hours.htm TrueHealthLabs.com] sells SIBO test kits from Genova Diagnostics direct to patients, without requiring a prescription.
* [https://www.breathtests.com/ QuinTron] sells equipment for breath testing in-office, and kits for in-home collection. Kits require a prescription.

==See also==

==Learn more==
==References==
{{reflist}}

[[Category:Tests]]
[[Category:Digestive system]]

Small intestinal bacterial overgrowth

2019-06-30T19:22:57Z

EscapeTheFog:Add Digestive system category.

'''Small intestinal bacterial overgrowth''' (SIBO) is an excessive population of bacteria in the [[small intestine]]. Unlike the large intestine, which is has a very high population of bacteria, the small intestine ordinarily has a very low population of bacteria in healthy people. SIBO is highly prevalent in ME/CFS patients, for whom it appears to cause or worsen symptoms. Treatment often improves ME/CFS symptoms.

== Prevalence ==

The rate of a positive lactulose test is low in healthy adults (0 to 20%).<ref name="Dukowicz2007">{{Citation
| last1 = Dukowicz | first1 = AC | authorlink1 = Andrew Dukowicz
| last2 = Lacy | first2 = BE | authorlink2 = Brian Lacy
| last3 = Levine | first3 = GM | authorlink3 = Gary Levine
| title = Small Intestinal Bacterial Overgrowth
| journal = Gastroenterology & Hepatology | volume = 3| issue = 2| pages = 112–122
| date = Feb 2007
| pmid = 21960820
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/
}}</ref>

== Comorbidities ==

Anecdotal reports suggest a high prevalence of SIBO among CFS patients. One study found 77% of CFS patients had SIBO and eradication lead to decrease in symptoms.<ref name="Pimentel2000">{{Citation
| last1 = Pimentel | first1 = M | authorlink1 = Mark Pimentel
| last2 = Hallegua | first2 = D | authorlink2 = David Hallegua
| last3 = Chow | first3 = EJ | authorlink3 = Evelyn Chow
| last4 = Wallace | first4 = D | authorlink4 = Daniel Wallace
| last5 = Bonorris | first5 = G | authorlink5 = George Bonorris
| last6 = Lin | first6 = HC | authorlink6 = Henry Lin
| display-authors = 3
| title = Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study
| journal = Gastroenterology | volume = 118| issue = 4| pages = –414
| date = 1 Apr 2000
| doi = 10.1016/S0016-5085(00)83765-8
| url = http://www.gastrojournal.org/article/S0016508500837658/abstract
}}</ref> Patients with CFS have alterations in microbiota, including lower levels of bifidobacteria and SIBO.<ref name="Logan2003">{{Citation
| last1 = Logan | first1 = Alan C
| last2 = Venket Rao | first2 = A
| last3 = Irani | first3 = Dinaz
| title = Chronic fatigue syndrome: lactic acid bacteria may be of therapeutic value
| journal = Medical Hypotheses | volume = 60| issue = 6| pages = 915–923
| date = Jun 2003
| pmid = 12699726
| url = http://www.ncbi.nlm.nih.gov/pubmed/12699726
}}</ref>

Several studies have shown that up to 84% of patients with [[irritable bowel syndrome]] have SIBO<ref name="Dukowicz2007" /> and that symptoms improve after treatment<ref name="Pimentel2004">{{Citation
| last1 = Pimentel | first1 = M | authorlink1 = Mark Pimentel
| last2 = Wallace | first2 = D | authorlink2 = Daniel Wallace
| last3 = Hallegua | first3 = D | authorlink3 = David Hallegua
| last4 = Chow | first4 = EJ | authorlink4 = Evelyn Chow
| last5 = Kong | first5 = Y | authorlink5 = Y Kong
| last6 = Park | first6 = S | authorlink6 = S Park
| last7 = Lin | first7 = HC | authorlink7 = Henry Lin
| display-authors = 3
| title = A link between irritable bowel syndrome and fibromyalgia may be related to findings on lactulose breath testing
| journal = Annals of the Rheumatic Diseases | volume = 63| issue = 4| pages = 450–452
| date = Apr 2004
| pmid = 15020342
| doi = 10.1136/ard.2003.011502
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1754959/
}}</ref><ref name="LinHC2004">{{Citation
| last1 = Lin | first1 = HC | authorlink1 = Henry Lin
| title = Small intestinal bacterial overgrowth: A framework for understanding irritable bowel syndrome
| journal = JAMA | volume = 292| issue = 7| pages = 852–858
| date = 18 Aug 2004
| doi = 10.1001/jama.292.7.852
| url = http://jama.jamanetwork.com/article.aspx?articleid=199251
}}</ref>, while others fail to replicate these results<ref name="Walters2005">{{Citation
| last1 = Walters | first1 = B | authorlink1 = B Walters
| last2 = Vanner | first2 = SJ | authorlink2 = S J Vanner
| title = Detection of bacterial overgrowth in IBS using the lactulose H2 breath test: comparison with 14C-D-xylose and healthy controls
| journal = The American Journal of Gastroenterology | volume = 100| issue = 7| pages = 1566–1570
| date = Jul 2005
| pmid = 15984983
| doi = 10.1111/j.1572-0241.2005.40795.x
| url = http://www.ncbi.nlm.nih.gov/pubmed/15984983
}}</ref><ref name="Parisi2003">{{Citation
| last1 = Parisi | first1 = Giancarlo
| last2 = Leandro | first2 = Gioacchino
| last3 = Bottona | first3 = E
| last4 = Carrara | first4 = M
| last5 = Cardin | first5 = F
| last6 = Faedo | first6 = A
| last7 = Goldin | first7 = D
| last8 = Pantalena | first8 = M
| last9 = Tafner | first9 = G
| last10 = Verdianelli | first10 = G
| last11 = Zilli | first11 = M
| last12 = AISGE Group
| display-authors = 3
| title = Small intestinal bacterial overgrowth and irritable bowel syndrome
| journal = The American Journal of Gastroenterology | volume = 98| issue = 11| pages = 2572–2573-2574
| date = Nov 2003
| pmid = 14638371
| doi = 10.1111/j.1572-0241.2003.08686.x
| url = http://www.ncbi.nlm.nih.gov/pubmed/15984983
}}</ref>.

One study found that a 100% of [[fibromyalgia]] patients tested positive to a lactulose breath test, indicating SIBO, and that the degree of abnormality on the breath test correlated with the amount of pain reported.<ref name="Pimentel2004" />

== Risk factors ==
* Bowel resection
* Bariatric surgery
* Disordered motility
* Disorders of the immune system
* IgA deficiency
* Low stomach acid
* Proton pump inhibitors
* Immunosuppressants
* Recurrent antibiotic use <ref name="Dukowicz2007" />
* Hypothyroidism
* T4-only thyroid hormone replacement
* Gastroparesis
* Celiac disease <ref name="Dukowicz2007" />
* Crohn's disease <ref name="Dukowicz2007" />
* Pancreatitis <ref name="Dukowicz2007" />
* Renal failure <ref name="Dukowicz2007" />
* Old age <ref name="Dukowicz2007" />

== Diagnosis ==

SIBO is usually diagnosed via a [[Lactulose breath test]]. Sometimes it is diagnosed using a bacterial culture. But this is rare due to the difficulty and cost of retrieving a sample from the small intestine. SIBO cannot be diagnosed via stool testing.

== Pathophysiology ==

SIBO appears to caused increased [[intestinal permeability]], also known as [[Leaky gut|Leaky Gut]]. It is believed that this enables lipopolysaccharides from bacteria, food particles, and other undesirable substances to enter the blood stream, ultimately leading to an inflammatory response.

Bacteria commonly implicated in SIBO include ''[[Escherichia coli]]'', ''[[Streptococcus]]'', ''[[Lactobacillus]]'', ''[[Bacteroides]]'' and ''[[Enterococcus]]''.<ref name="Bouhnik2016">{{Citation
| last1 = Bouhnik | first1 = Yoram | authorlink2 =
| last2 = Alain | first2 = Sophie | authorlink3 =
| last3 = Attar | first3 = Alain | authorlink4 =
| last4 = Flourié | first4 = Bernard | authorlink5 =
| last5 = Raskine | first5 = Laurent | authorlink6 =
| last6 = Sanson-Le Pors | first6 = Marie José | authorlink7 =
| last7 = Rambaud | first7 = Jean-Claude | authorlink8 =
| display-authors = 3
| title = Bacterial populations contaminating the upper gut in patients with small intestinal bacterial overgrowth syndrome
| journal = The American Journal of Gastroenterology | volume = 94| issue = 5| pages = 1327–1331
| date = May 1999
| doi = 10.1111/j.1572-0241.1999.01016.x
| url = http://www.nature.com/ajg/journal/v94/n5/full/ajg1999310a.html
}}</ref> Higher levels of ''Enterococcus'' and ''Stretptococcus'' have been found in [[ME/CFS]] patients.<ref name="Sheedy2009">{{citation
| last1 = Sheedy | first1 = John R | authorlink1 = John Sheedy
| last2 = Wettenhall | first2 = Richard EH | authorlink2 = Richard Wettenhall
| last3 = Scanlon | first3 = Denis | authorlink3 = Denis Scanlon
| last4 = Gooley | first4 = Paul R | authorlink4 = Paul Gooley
| last5 = Lewis | first5 = Donald P | authorlink5 = Donald Lewis
| last6 = McGregor | first6 = Neil | authorlink6 = Neil McGregor
| last7 = Stapleton | first7 = David I | authorlink7 = David Stapleton
| last8 = Butt | first8 = Henry L | authorlink8 = Henry Butt
| last9 = De Meirleir | first9 = Kenny L | authorlink9 = Kenny de Meirleir
| display-authors = 3
| title = Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome
| journal = In Vivo | volume = 2009 Jul-Aug;23(4) | page = 621-8
| date = Jul 2009
| pmid = 19567398
| url = http://iv.iiarjournals.org/content/23/4/621.long
}}</ref>

== Health complications ==

The symptoms of SIBO can vary greatly depending on the severity and the species of bacteria populating the small intestine.<ref name="Parisi2003" /> Symptoms include bloating, abdominal distension, abdominal pain or discomfort, diarrhea, fatigue, weakness, and brain fog.

It causes increased permeability of the small intestine.<ref>Reference needed</ref> It can cause malabsorption of nutrients including iron and [[Vitamin B12]], resulting in [[microcytic anemia]] or [[megaloblastic anemia]].

===Nutritional deficiencies===

Vitamin B12 malabsorption may be caused by competitive uptake of B12 by bacteria in the small intestine.<ref name="Dukowicz2007" /> It can also cause excess folic acid due to synthesis by bacteria in the small bowel.<ref name="Camilo1996">{{Citation
| last1 = Camilo | first1 = E
| last2 = Zimmerman | first2 = J
| last3 = Mason | first3 = JB
| last4 = Golner | first4 = B
| last5 = Russell | first5 = R
| last6 = Selhub | first6 = J
| last7 = Rosenberg | first7 = IH
| display-authors = 3
| title = Folate synthesized by bacteria in the human upper small intestine is assimilated by the host
| journal = Gastroenterology | volume = 110| issue = 4| pages = 991–998
| date = Apr 1996
| pmid = 8613033
| url = http://www.ncbi.nlm.nih.gov/pubmed/8613033
}}</ref>

In severe cases, malabsorption of fat-soluble vitamins ([[Vitamin A|A]],[[Vitamin D|D]],[[Vitamin E|E]] and [[Vitamin K|K]]) due to the deconjugation of [[bile salts]] can cause neuropathies and immune dysfunction.

SIBO can also cause carbohydrate and protein malabsorption.<ref name="Dukowicz2007" />

== Treatment ==

Treatment generally involves some combination of antibiotics, dietary changes, pro-kinetic agents, and probiotics. Treatment via antibiotics is most common <ref>Reference needed</ref>.

=== Antibiotics ===
Any antibiotic that is active in the small intestine may potentially affect the bacterial flora and therefore SIBO. However, certain antibiotics are used preferentially when treatment is explicitly targeting SIBO. These antibiotics may be synthetic or herbal, though synthetic antibiotics appears to be used most often.

==== Synthetic ====
* [[Rifxaimin]] is the most commonly used antibiotic used for SIBO treatment. It is effective on hydrogen producing bacteria, but not methane producing bacteria. Only a small percentage of the drug is absorbed by the body, and its activity is mostly limited to the small intestine. <ref name="Bures2010">{{Citation
| last1 = Bures | first1 = Jan
| last2 = Cyrany | first2 = Jiri
| last3 = Kohoutova | first3 = Darina
| last4 = Förstl | first4 = Miroslav
| last5 = Rejchrt | first5 = Stanislav
| last6 = Kvetina | first6 = Jaroslav
| last7 = Vorisek | first7 = Viktor
| last8 = Kopacova | first8 = Marcela
| display-authors = 3
| title = Small intestinal bacterial overgrowth syndrome
| journal = World Journal of Gastroenterology : WJG | volume = 16| issue = 24| pages = 2978–2990
| date = 28 Jun 2010
| pmid = 20572300
| doi = 10.3748/wjg.v16.i24.2978
| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2890937/
}}</ref>
* [[Neomycin]] is sometimes given in addition to Rifaximin when methane-producing bacteria are present. <ref>{{Cite journal|last=Low|first=Kimberly|last2=Hwang|first2=Laura|last3=Hua|first3=Johnson|last4=Zhu|first4=Amy|last5=Morales|first5=Walter|last6=Pimentel|first6=Mark|date=Sep 2010|title=A combination of rifaximin and neomycin is most effective in treating irritable bowel syndrome patients with methane on lactulose breath test|url=https://www.ncbi.nlm.nih.gov/pubmed/19996983|journal=Journal of Clinical Gastroenterology|volume=44|issue=8|pages=547–550|doi=10.1097/MCG.0b013e3181c64c90|issn=1539-2031|pmid=19996983}}</ref> However, one study comparing two herbal formulations to standard treatment found herbs to be as or more effect as antibiotics for eradicating SIBO.<ref name="Chedid2014">{{Citation
| last1 = Chedid | first1 = Victor
| last2 = Dhalla | first2 = Sameer
| last3 = Clarke | first3 = John O
| last4 = Roland | first4 = Bani Chander
| last5 = Dunbar | first5 = Kerry B
| last6 = Koh | first6 = Joyce
| last7 = Justino | first7 = Edmundo
| last8 = Tomakin | first8 = Eric
| last9 = Mullin | first9 = Gerard E
| display-authors = 3
| title = Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth
| journal = Global Advances in Health and Medicine | volume = 3| issue = 3| pages = 16–24
| date = May 2014
| pmid = 24891990
| doi = 10.7453/gahmj.2014.019
| url = http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/
}}</ref>
* [[Metronidazole]]

==== Herbal ====
* [[Oregano]]
* [[Allicin]]

=== Diet ===
Diets have been used and/or shown to be helpful in treating or controlling SIBO include:
* [[GAPS diet|GAPS Diet]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Elemental diet|Elemental Diet]]

=== Pro-kinetic Agents ===
Experts also recommend the use of [[prokinetic drugs]] or herbs for those for whom dysmotility is an issue.<ref name="Dukowicz2007" /> These agents include:
* [[Low dose naltrexone|Low Dose Naltrexone]] (LDN)
* 

=== Probiotics ===
The role of probiotics in treatment is controversial.

One school of thought is that SIBO is not due to a "bad" bacteria, but rather a simple overgrowth of ordinary / healthy bacteria. Therefore, it would follow that probiotics would be counterproductive to treating and managing SIBO.

Another school of thought is that SIBO is caused or worsened by the presence of a "bad" bacteria, or a bad mix of bacteria. Therefore, it would follow that probiotics that increase the level of "good" bacteria, or promote a healthier mix of bacteria, would be helpful in treating or managing SIBO. ''[[Lactobacillus casei]]'' has been found to improve breath hydrogen scores after six weeks of treatment.<ref name="Barrett2008">{{Citation
| last1 = Barrett | first1 = Jacqueline S
| last2 = Canale | first2 = Kim EK
| last3 = Gearry | first3 = Richard B
| last4 = Irving | first4 = Peter M
| last5 = Gibson | first5 = Peter R
| display-authors = 3
| title = Probiotic effects on intestinal fermentation patterns in patients with irritable bowel syndrome
| journal = World Journal of Gastroenterology : WJG | volume = 14| issue = 32| pages = 5020–5024
| date = 28 Aug 2008
| pmid = 18763284
| doi = 10.3748/wjg.14.5020
| url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2742929/
}}</ref> There is also evidence for [[VSL #3]] in the treatment of SIBO.<ref name="Meier2003">{{Citation
| last1 = Meier | first1 = Rémy
| last2 = Burri | first2 = Emanuel
| last3 = Steuerwald | first3 = Michael
| title = The role of nutrition in diarrhoea syndromes
| journal = Current Opinion in Clinical Nutrition and Metabolic Care | volume = 6| issue = 5| pages = 563–567
| date = Sep 2003
| pmid = 12913674
| doi = 10.1097/01.mco.0000087972.83880.d3
| url = http://www.ncbi.nlm.nih.gov/pubmed/12913674
}}

</ref> However, some probiotics may exacerbate SIBO, in particular those containing [[D-Lactate]] producing strains.

=== Increasing Stomach Acid ===
In cases where SIBO is caused by low stomach acid, treatment may include dietary supplements that increase stomach acid, such as [[Betaine hydrocloride|Betaine Hydrocloride]].

== See also ==

*[[Gastrointestinal system]]
*[[Dysbiosis]]
*[[Probiotics]]

== Learn more ==
* June 29, 2018 - [https://universityhealthnews.com/daily/digestive-health/sibo-treatment-with-herbs-is-as-effective-as-antibiotics-combine-with-a-sibo-diet-for-even-better-results/ "SIBO Treatment with Herbs Is as Effective as Antibiotics"]. University Health News

== References ==
[[Category:Diagnoses]]
[[Category:Signs and symptoms]]
[[Category:Digestive signs and symptoms]]
<references />

[[Category:Digestive system]]

Talk:Leaky gut diet

2019-06-30T19:20:11Z

EscapeTheFog:/* Is "Leaky gut diet" really an entity unto itself? -- ~~~~ */ new section

== Is "Leaky gut diet" really an entity unto itself? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 15:20, June 30, 2019 (EDT) ==

I spent a few minutes searching and couldn't find any specific diet known as "Leaky gut diet". It's definitely the case that several foods and supplements have been proposed as beneficial for leaky gut. But as far as I can tell, nobody has assembled the proposed items into a full diet that has become known by the name "Leaky gut diet". As such, I think the foods and supplements listed in this page are better suited as part of a "Potential treatments" section of the Intestinal permeability / Leaky gut pages.

What do others think?

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 15:20, June 30, 2019 (EDT)

Chronic Fatigue and its Syndromes

2019-06-29T01:33:29Z

EscapeTheFog:/* Publisher's synopsis */ Format as italic and in block quote to clarify this is quoting the publisher and not text written by mepedia editors. Add "(sic)" to word which my browser red underlines as misspelled.

{{Infobox book
| name = Chronic Fatigue and its Syndromes
| image = File:Chronic fatigue and its syndromes.jpg
| caption =
| author = [[Simon Wessely]], [[Matthew Hotopf]], [[Michael Sharpe]]
| illustrator =
| cover_artist =
| country = United Kingdom
| language = English
| subject = Medical textbook, biopsychosocial model
| genre = Medical
| publisher = Oxford University Press
| pub_date = 1999
| media_type = print
| pages = 448
| isbn = 978-0192630469
| website =
}}
'''Chronic Fatigue and its Syndromes''' is a book by [[Simon Wessely]], [[Matthew Hotopf]], and [[Michael Sharpe]].

==Publisher's synopsis==
<blockquote>''Chronic Fatigue Syndrome has been the subject of intense media debate over recent years. Such interest has been partially due to the scarcity of professional and scientific explorations of the topic - what is it, and what causes it? One school of thought argues that there is no medical basis to chronic fatigue and hence any such investigation is fruitless. An alternative view is that we should look at CFS purely as a physical problem, and that to attempt any psychological perspective is to trivialize the illness in the eyes of the sufferers. Chronic Fatigue and Its Syndromes presents a comprehensive review of the problem of chronic fatigue, mixing medical, psychological, social, and historical perspectives.''</blockquote><blockquote>''The book examines the historical origins of CFS, considering the epidemiology, and the various aetiological (sic) theories for the condition - viral, immunological, psychological, psychiatric, and neurological. The book concludes with a clinical section discussing the assessment and treatment of CFS. Throughout, the authors argue that chronic fatigue and its various syndromes cannot easily be pigeon holed into physical or psychological categories, and that the ambiguous nature of the illness actually provides us with a valuable chance to explore contemporary attitudes to sickness and health, one not offered by better defined or classified disorders.''</blockquote>

==Links==
*[https://www.amazon.com/Chronic-Fatigue-Syndromes-Simon-Wessely/dp/0192630466/ Chronic Fatigue and its Syndromes - Amazon (US)]
*[https://www.amazon.co.uk/Chronic-Fatigue-Syndromes-Simon-Wessely/dp/0192630466/ Chronic Fatigue and its Syndromes - Amazon (UK)]
*[https://global.oup.com/academic/product/chronic-fatigue-and-its-syndromes-9780192630469 Chronic Fatigue and its Syndromes - Oxford University Press]
*[https://www.goodreads.com/book/show/2187024.Chronic_Fatigue_and_Its_Syndromes Chronic Fatigue and its Syndromes - Goodreads]

==See also==
*[[Biopsychosocial model]]
*[[The 3Ps model|Cognitive behavioral model]]
*[[Cognitive behavioral therapy]]
*[[Wessely school]]

==References==
<references />
[[Category:Books]]
[[Category:English books]]
[[Category:Psychological paradigm]]
[[Category:Medical books]]
[[Category:Psychological paradigm path books]]
[[Category:Biopsychosocial model books]]

Talk:Small intestinal bacterial overgrowth

2019-06-24T15:21:20Z

EscapeTheFog:/* SBI treatment -- EscapeTheFog (talk) 10:32, June 24, 2019 (EDT) */ links

=== Potential References ===
A few papers that are good candidates for source material and citations for existing text in the article:

* https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12531

== SBI treatment -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT) ==

Recently saw a few references to a "SBI" - immunoglobulin derived from bovine serum - as a treatment for SIBO. The wikipedia page on https://en.wikipedia.org/wiki/Serum-derived_bovine_immunoglobulin/protein_isolate mentions this. Would like to include SBI in the treatments section if I can find good source articles.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT)

As I read further, it seems like this is broader than a SIBO treatment. May warrant a separate article.

A few links that may be helpful:

* https://www.orthomolecularproducts.com/assets/1/30/PDN_SBI-Protect_powder.pdf - has a number of references which may be good primary sources
* https://drgaryk.com/2018/04/07/sbi-protect-help-for-leaky-gut-and-immune-system-issues/ - may be useful as background, but probably not as a reference

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 11:21, June 24, 2019 (EDT)

Talk:Small intestinal bacterial overgrowth

2019-06-24T14:32:29Z

EscapeTheFog:/* SBI treatment -- ~~~~ */ new section

=== Potential References ===
A few papers that are good candidates for source material and citations for existing text in the article:

* https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12531

== SBI treatment -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT) ==

Recently saw a few references to a "SBI" - immunoglobulin derived from bovine serum - as a treatment for SIBO. The wikipedia page on https://en.wikipedia.org/wiki/Serum-derived_bovine_immunoglobulin/protein_isolate mentions this. Would like to include SBI in the treatments section if I can find good source articles.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 10:32, June 24, 2019 (EDT)

Mast cell

2019-06-24T05:40:05Z

EscapeTheFog:/* Gastrointestinal Tract and the Nervous system */ reword for clarity

A '''mast cell''' is a type of [[white blood cell]] that protects the body from immune threats by promoting [[inflammation]].<ref name=":1" /> Mast cells are present in all tissues but especially connective tissues. They are also found in the brain, in particular along the blood-cerebrospinal fluid barrier. They are most commonly known for their role in the [[mucosal immune system|immune system]] of mucosal membranes; however, they are necessary in maintaining basic human health and defending against pathogens.

When a mast cell encounters a perceived immune threat, pro-inflammatory mediators are released through a process known as degranulation. Some anti-inflammatory mediators may include [[histamine]], [[Cytokine|cytokines]], proteases, or [[heparin|heparin.]]<ref name=":1" />

==Mast cell activation==

===Degranulation===

Mast cells can become activated when they encounter a foreign substance. A cascade response allows for degranulation to begin and a subsequent release of inflammatory granules into the bloodstream.<ref name=":1">{{Cite journal|last=|first=|date=2016|title=Mast cell: a multifunctional master cell|url=https://www.frontiersin.org/articles/10.3389/fimmu.2015.00620/full|journal=|volume=|pages=|via=}}</ref>

=== Mechanisms of inhibition ===
There are several proposed supplements or treatments that might grant temporary mast cell degranulation inhibition:

Antioxidants: these are substances that are considered to remove potentially harmful reactive [[oxygen]] species from the body. [[Vitamin C]], [[vitamin A]], [[vitamin E]], and beta-carotene are examples of antioxidants. The properties of such antioxidants have been noted to be capable of reducing blood histamine levels<ref>{{Cite journal|last=Tettamanti|first=L|date=2018|title=Different signals induce mast cell inflammatory activity: inhibitory effect of Vitamin E.|url=|journal=J biol regul homeost agents|volume=|pages=|via=}}</ref>. The exact mechanisms that cause blood histamine levels to decrease are still unknown. However, antioxidants have been noted to be capable of inhibiting mast cell production and altering the enzymes that form ([[diamine oxidase]]) or breakdown (histidine decarboxylase) histidine.

Phototherapy: UVA and UVA1 phototherapy has been observed to significantly inhibit histamine release from mast cells and other white blood cells.<ref>{{Cite journal|last=Kronauer|first=C|date=2007|title=Influence of UVB, UVA and UVA1 Irradiation on Histamine Release from Human Basophils and Mast Cells In Vitro in the Presence and Absence of Antioxidants|url=|journal=Photochemistry and Photobiology|volume=|pages=|via=}}</ref>

==Infection==

Past findings have suggested that mast cell activation due to a viral infection may play a part in initiating autoimmune disease. [[Coxsackievirus]] infection has been observed to up-regulate [[toll-like receptor]] 4 (TLR4) on mast cells in mice, immediately following the period of infection.<ref>{{Cite journal|url=https://www.ncbi.nlm.nih.gov/pubmed/15386590|title=Viruses as adjuvants for autoimmunity: evidence from Coxsackievirus-induced myocarditis|last=Fairweather|first=D|date=2005|journal=Rev Med Virol|volume=|pages=|via=}}</ref> TLR4 up-regulation may have negative consequences on the immune system because TLR4 up-regulation may activate the [[innate immune system]] and the inflammatory response system.

==Gastrointestinal Tract and the Nervous system==

Mast cells are found within the nervous system and are capable of crossing the [[blood-brain barrier]], which separates [[blood]] from the [[central nervous system]]. The gastrointestinal tract and the brain are capable of communicating through the blood brain barrier, also known as the gut-brain axis (GBA). Exchange of information between the central (brain) and peripheral (gut) nervous systems ensures that the stomach and intestines are communicating with the brain. "Immune activation, intestinal permeability, enteric reflex, and entero-endocrine signaling" are all influenced by the GBA. Therefore mast cells may be a type of cell that indirectly affects neurological functioning when the gut is inflamed<ref>{{Cite journal|last=|first=|date=2015|title=The gut-brain axis: interactions between enteric microbiota, central and enteric nervous systems|url=|journal=Ann Gasteroenterol|volume=|pages=|via=}}</ref>.

One study found that [[acetylcholine]] via muscarinic receptors strongly inhibited the release of [[histamine]] in [[mucosal]] mast cells.<ref>{{Cite journal|title=Acetylcholine via Muscarinic Receptors Inhibits Histamine Release from Human Isolated Bronchi|url=http://www.atsjournals.org/doi/full/10.1164/ajrccm.156.2.96-12079#.V7vo-ZMrLMV|language=en|doi=10.1164/ajrccm.156.2.96-12079#.v7vo-zmrlmv}}</ref>

Like the tissue-resident macrophages known as [[microglia]], but unlike other bone marrow-derived cells of the [[immune system]], mast cells naturally occur in the [[human brain]] where they interact with the [[neuroimmune system]].<ref name="Mast cell neuroimmmune system">{{cite journal | vauthors = Polyzoidis S, Koletsa T, Panagiotidou S, Ashkan K, Theoharides TC | title = Mast cells in meningiomas and brain inflammation | journal = J Neuroinflammation | volume = 12 | issue = 1 | pages = 170 | year = 2015 | pmid = 26377554 | pmc = 4573939 | doi = 10.1186/s12974-015-0388-3 | quote = MCs originate from a bone marrow progenitor and subsequently develop different phenotype characteristics locally in tissues. Their range of functions is wide and includes participation in allergic reactions, innate and adaptive immunity, inflammation, and autoimmunity [34]. In the human brain, MCs can be located in various areas, such as the pituitary stalk, the pineal gland, the area postrema, the choroid plexus, thalamus, hypothalamus, and the median eminence [35]. In the meninges, they are found within the dural layer in association with vessels and terminals of meningeal nociceptors [36]. MCs have a distinct feature compared to other hematopoietic cells in that they reside in the brain [37]. MCs contain numerous granules and secrete an abundance of prestored mediators such as corticotropin-releasing hormone (CRH), neurotensin (NT), substance P (SP), tryptase, chymase, vasoactive intestinal peptide (VIP), vascular endothelial growth factor (VEGF), TNF, prostaglandins, leukotrienes, and varieties of chemokines and cytokines some of which are known to disrupt the integrity of the blood-brain barrier (BBB) [38–40]. [The] key role of MCs in inflammation [34] and in the disruption of the BBB [41–43] suggests areas of importance for novel therapy research. Increasing evidence also indicates that MCs participate in neuroinflammation directly [44–46] and through microglia stimulation [47], contributing to the pathogenesis of such conditions such as headaches, [48] autism [49], and chronic fatigue syndrome [50]. In fact, a recent review indicated that peripheral inflammatory stimuli can cause microglia activation [51], thus possibly involving MCs outside the brain.}}</ref><ref>{{Cite journal|last=Aguzzi|first=A.|last2=Barres|first2=B. A.|last3=Bennett|first3=M. L.|date=2013-01-11|title=Microglia: Scapegoat, Saboteur, or Something Else?|url=http://www.sciencemag.org/cgi/doi/10.1126/science.1227901|journal=Science|language=en|volume=339|issue=6116|pages=156–161|doi=10.1126/science.1227901|issn=0036-8075}}</ref> In the brain, mast cells are located in a number of structures that mediate visceral sensory (e.g., pain) or [[neuroendocrine]] functions or that are located along the [[blood–cerebrospinal fluid barrier]], including the [[pituitary stalk]], [[pineal gland]], [[thalamus]], and [[hypothalamus]], [[area postrema]], [[choroid plexus]], and in the dural layer of the [[meninges]] near meningeal [[nociceptor]]s.<ref name="Mast cell neuroimmmune system" /> Mast cells serve the same general functions in the body and central nervous system, such as effecting or regulating allergic responses, innate and adaptive immunity, [[autoimmunity]], and inflammation.<ref name="Mast cell neuroimmmune system" /> Across systems, mast cells serve as the main [[effector cell]] through which pathogens can affect the [[gut–brain axis]].<ref name="pmid24833851" /><ref name="Microbiome-CNS-ENS" />
== Role in human disease ==

=== Mast cell activation syndrome ===
{{Main article|page_name=Mast cell activation syndrome}}

[[Mast cell activation syndrome]] (MCAS) is a condition in which mast cells are over-responsive to various environmental triggers. When mast cells are over-responsive the result can be an increase in the release of [[histamine]] and other inflammatory molecules. Excessive inflammation can result from such a condition.

MCAS is often found in patients with [[Ehlers-Danlos syndrome]] (EDS) and [[postural orthostatic tachycardia syndrome]] (POTS), a form of [[orthostatic intolerance]],<ref>Milner, Joshua, Dr. "Research Update: POTS, EDS, MCAS Genetics." 2015 Dysautonomia International Conference & CME. Washington DC. Dysautonomia International Research Update: POTS, EDS, MCAS Genetics. Web. <https://vimeo.com/142039306></ref> two conditions commonly co-morbid with [[ME/CFS|ME]]. The overlap between EDS, POTS, and MCAS is thought to be due to increased [[tryptase]] production owing to an extra copy of a gene called TPSAB <ref>{{Cite journal|last=Cheung|first=Ingrid|date=February 2015|title=A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome|url=http://www.jacionline.org/article/S0091-6749(14)02927-3/abstract|journal=The Journal of Allergy and Clinical Immunology|volume=|pages=|via=}}</ref>.

MCAS should be distinguished from [[mastocytosis]], a genetic disorder causing excessive production of mast cells.

===Myalgic Encephalomyelitis===
Research on the relationship between mast cells and ME is in its infancy. One study found that individuals diagnosed with moderate to severe [[ME/CFS|ME]] have been noted to have higher amounts of dysfunctional mast cells in circulation<ref name="Nguyen, et al, 2017" />.

At a two-day physician summit in Salt Lake City, Utah March 2018, physicians discussed the relationship between “Chronic Fatigue Syndrome” and mast cell activation syndrome.<ref>{{Cite web|url=https://www.medscape.com/viewarticle/893858|title=Medscape Log In|website=www.medscape.com|access-date=2018-09-25}}</ref>
*[[David Kaufman]]: "ME/CFS is a descriptive diagnosis of a bunch of symptoms, but it says nothing about what's causing the symptoms, which is probably part of the reason it's so hard for it to get recognition. So, the question becomes, What other pathology is driving this illness and making the person feel so ill? I think mast cell activation is one of those drivers, whether cause, effect, or perpetuator, I don't know."
*[[Charles Lapp]]: "I see a lot of this. I think it's one of the many overlap syndromes that we've been missing for years."
*[[Susan Levine]]: "I suspect 50% to 60% of ME/CFS patients have it. It's a very new concept."...In Levine's experience, MCAS often manifests in patients being unable to tolerate certain foods or medications. "If we can reduce the mast cell problem, we can facilitate taking other drugs to treat ME/CFS," she said. However, she also cautioned, "It's going to be a subset, not all ME/CFS patients."
=== Fibromyalgia ===
Over expression of mast cells has been observed in the skin of patients with fibromyalgia.<ref>{{Cite journal|last=Ang|first=DC|date=2015|title=Mast Cell Stabilizer (Ketotifen) in Fibromyalgia: Phase 1 Randomized Controlled Clinical Trial|url=|journal=The clinical journal of pain|volume=|pages=|via=}}</ref>

==Notable studies==

*2017, Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in [[ME/CFS|chronic fatigue syndrome/myalgic encephalomyelitis]] patients<ref name="Nguyen, et al, 2017" /> [http://apjai-journal.org/wp-content/uploads/2017/07/75-81-AP0771.pdf (Full Text)]

==See also==
*[[Mast cell activation disorder]]
*[[Theoharis Theoharides]]

==Learn more==

==References==
<references>
<ref name="Nguyen, et al, 2017">{{Citation
| last1 = Nguyen | first1 = T. | authorlink1 =
| last2 = Johnston | first2 = S. | authorlink2 =
| last3 = Chacko | first3 = A. | authorlink3 =
| last4 = Gibson | first4 = D. | authorlink4 =
| last5 = Cepon | first5 = J. | authorlink5 =
| last6 = Smith | first6 = D. | authorlink6 =
| last7 = Staines | first7 = D. | authorlink7 = Donald Staines
| last8 = Marshall-Gradisnik | first8 = S. | authorlink8 = Sonya Marshall-Gradisnik
| title = Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in chronic fatigue syndrome/myalgic encephalomyelitis patients
| journal = Asian Pac J Allergy Immunol | volume = 35 | issue = 2 | page = 75-81
| date = 2017
| doi = 10.12932/AP0771
}}
</ref>
</references>

[[Category:Biochemistry and cell biology]]
[[Category:Immunology]]
[[Category:Allergy]]

Talk:Elemental diet

2019-06-23T22:27:20Z

EscapeTheFog:/* Additional products -- ~~~~ */ new section

== Additional products -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 18:27, June 23, 2019 (EDT) ==

* Neocate Junior
* Elecare Junior
* Peptamin (semi-elemental)

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 18:27, June 23, 2019 (EDT)

Open Medicine Foundation

2019-06-23T15:42:29Z

EscapeTheFog:/* Funding */ Clarify description of Pineapple fund and add citation.

[[File:OMF.png|right]]
The '''Open Medicine Foundation''' (OMF) is an American non-profit 501(c)(3) organization established in 2012. It funds and initiates groundbreaking research into complex chronic illnesses. It supports neuro-immune disease research with a focus on [[Chronic Fatigue Syndrome]] ([[CFS]]), [[Myalgic Encephalomyelitis]] ([[ME]]), [[Fibromyalgia]] (FMS), and [[Chronic lyme disease|Chronic Lyme Disease]].

The OMF's current project is the [[End ME/CFS Project]].

Many of those involved in OMF, including Executive Director [[Linda Tannenbaum]], either have a [[neuro-immune disease]] or have a family member who has a neuro-immune disease.

OMF's strategy is to include highly recognized and accomplished scientists with expertise in body systems linked to neuro-immune diseases. The organization also has an extensive [https://www.omf.ngo/community/ patient network] as developed through email [https://www.omf.ngo/newsletter-sign-up/ newsletter subscriptions].

[[Stuart Murdoch]] is Ambassador promoting the OMF's work "through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans."<ref>{{Cite news|url=https://www.omf.ngo/omf-ambassador-stuart-murdoch-2/|title=OMF Ambassador - Stuart Murdoch {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

== ME/CFS Scientific Advisory Board ==
The advisory board is made up of world-renowned researchers:<ref>{{Cite news|url=https://www.omf.ngo/scientific-advisory-board/|title=Scientific Advisory Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

*Dr. [[Ronald Davis]] (Scientific Advisory Board Director, and father of [[Whitney Dafoe]])
*[[Paul Berg]] (cellular metabolism, Nobel laureate)
*[[Mario Capecchi]] (genetics, Nobel laureate)
*[[Mark Davis]] (immunology)
*[[Craig Heller]] (exercise physiology)
*[[Andreas Kogelnik]] (OMI founder)
*[[Robert Naviaux]] (virology & cell biology, mitochondrial specialist)
*[[Baldomero Olivera]] (neurobiology & pain)
*[[Ronald Tompkins]] (trauma & metabolism)
*[[James Watson]] (genetics, Nobel laureate)
*[[Wenzhong Xiao]] (computational genomics)
*[[David Bell]] (ME/CFS clinician. See [[1985 Lyndonville outbreak|Lyndonville outbreak]])
*[[Maureen Hanson]] (cell and molecular biology)
*[[Øystein Fluge]] (oncology)
*[[Olav Mella]] (oncology)

==Board==
The OMF board comprises:<ref>{{Cite news|url=https://www.omf.ngo/about-us/omf-board/|title=Foundation Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

*[[Linda Tannenbaum]] (Executive Director)
*[[Kimberley Hicks]] (Treasurer)
*[[Patti Linsley]] (Secretary)
*[[R.P. Channing]] (MD)
*[[Deborah Rose]] (MD)
*[[H. Kenneth Walker]] (MD)

== Research Projects ==
The [[ME/CFS Severely Ill, Big Data Study]] was announced in May, 2015. The most severely ill [[ME/CFS]] patients are being studied to find a diagnostic bio-marker.

In 2016, [http://www.healthrising.org/blog/2016/05/19/mitochondria-man-gets-money-uk-goes-mega-chronic-fatigue-syndrome-research-moves-forward/ "Mitochondria Man Gets Money UK Goes Mega Chronic Fatigue Syndrome Research Moves Forward"]

== Notable research ==
* 2016, [[Metabolic features of chronic fatigue syndrome]]

== Funding ==
OMF have fund-raised primarily from ME sufferers and community for the research. The [[National Institutes of Health]] have not provided funding.

In January 2018 Pineapple fund, a philanthropic project by an early bitcoin investor<ref>{{Cite web|url=https://pineapplefund.org/|title=Pineapple Fund|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=June 23, 2019}}</ref>, donated $1 million to OMF.<ref name=":0" /> The anonymous donor was so touched by the outpouring of appreciation from the worldwide ME community that they increased the donation to $5 million.<ref name=":0">{{Cite news|url=https://www.omf.ngo/2018/02/02/pineapple-fund/|title=Pineapple Fund increases donation to $5 million {{!}} Open Medicine Foundation|date=2018-02-02|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref>

In May 2018, OMF received a new $1 million anonymous pledge to escalate Dr. [[Ronald Davis]]’s systems biology approach with [[Robert Phair]].<ref>{{Cite news|url=https://www.omf.ngo/2018/05/24/new-1-million-donation-for-me-cfs-research/|title=New $1 million donation for ME/CFS research! {{!}} Open Medicine Foundation|date=2018-05-24|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref>

== Advocacy ==
The OMF and the Davis-Dafoe Family held two screenings of [[Forgotten Plague|''Forgotten Plague'']]. Dr. Davis spoke about ME/CFS and research after the screening.<ref name="ForgottenPlague" /><ref name="MEACTION20151016fp" />

Dr. Davis, along with colleagues, have written and signed [[List of open letters from researchers|open letters]] in reference to research funds and the [[PACE trial]].

==Talks and interviews==

'''Ronald Davis'''

'''2017'''
*[https://www.youtube.com/watch?v=jXL2xzxCXBw Q&A on ME/CFS Research with Dr. Ron Davis] (Mar 7)
*[https://www.youtube.com/watch?v=sGBXXlQO49g An Update on ME/CFS Research with Dr. Ronald W. Davis] (Feb 21)
*[https://www.youtube.com/watch?v=-bs6_5Ldat4 Scientist Ron Davis Tells How We Are "Fast-Tracking" ME/CFS Research] (Feb 3)

'''2016'''
*[https://www.youtube.com/watch?v=wz5we-QZ2Q4 Getting Answers to ME/CFS Faster through Collaboration and Openness] (Dec 13)
*[https://www.youtube.com/watch?v=si_JJf-SVnQ Short Story of a Family's Struggle with ME/CFS] (May 21)

'''Linda Tannenbaum'''

'''2016'''
*[https://www.youtube.com/watch?v=L_7XmWcI3fE Episode 79 - Linda Tannenbaum] (May 8)

== Online Presence ==
*[https://www.omf.ngo Website]
*[https://www.facebook.com/OpenMedicineFoundation Facebook]
*[https://twitter.com/OpenMedF Twitter]
*[https://www.youtube.com/channel/UC0kN-Gt9WJp7pWZJn2oDUbA YouTube]

== Learn more ==
*[https://www.omf.ngo/what-is-mecfs/ What is ME/CFS?]

==See also==
*[[Ronald Davis]]
*[[Linda Tannenbaum]]
*[[Stuart Murdoch]]

== References ==
<references>
<ref name="ForgottenPlague">{{citation
| author1 = Ryan Prior (Director)
| author2 = Nicole Castillo (Director)
| author3 = Anthony Komaroff
| author4 = Hillary Johnson
| author5 = Ron Davis
| title = Forgotten Plague
| medium = documentary film
| date = 2015
| url = https://www.tugg.com/titles/forgotten-plague
}}</ref>
<ref name="MEACTION20151016fp">{{citation
| author = #ME Action
| title = Forgotten Plague Screening Announcement, Palo Alto USA
| date = Dec 2015
| url = https://www.facebook.com/MEActNet/posts/1661003820848684
}}</ref>
</references>

[[Category:Research initiatives]]
[[Category:American research initiatives]]
[[Category:Organizations]]
[[Category:Non-profit organizations based in the United States]]

Open Medicine Foundation

2019-06-23T15:29:05Z

EscapeTheFog:/* Funding */ Expand abbreviation and link it.

[[File:OMF.png|right]]
The '''Open Medicine Foundation''' (OMF) is an American non-profit 501(c)(3) organization established in 2012. It funds and initiates groundbreaking research into complex chronic illnesses. It supports neuro-immune disease research with a focus on [[Chronic Fatigue Syndrome]] ([[CFS]]), [[Myalgic Encephalomyelitis]] ([[ME]]), [[Fibromyalgia]] (FMS), and [[Chronic lyme disease|Chronic Lyme Disease]].

The OMF's current project is the [[End ME/CFS Project]].

Many of those involved in OMF, including Executive Director [[Linda Tannenbaum]], either have a [[neuro-immune disease]] or have a family member who has a neuro-immune disease.

OMF's strategy is to include highly recognized and accomplished scientists with expertise in body systems linked to neuro-immune diseases. The organization also has an extensive [https://www.omf.ngo/community/ patient network] as developed through email [https://www.omf.ngo/newsletter-sign-up/ newsletter subscriptions].

[[Stuart Murdoch]] is Ambassador promoting the OMF's work "through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans."<ref>{{Cite news|url=https://www.omf.ngo/omf-ambassador-stuart-murdoch-2/|title=OMF Ambassador - Stuart Murdoch {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

== ME/CFS Scientific Advisory Board ==
The advisory board is made up of world-renowned researchers:<ref>{{Cite news|url=https://www.omf.ngo/scientific-advisory-board/|title=Scientific Advisory Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

*Dr. [[Ronald Davis]] (Scientific Advisory Board Director, and father of [[Whitney Dafoe]])
*[[Paul Berg]] (cellular metabolism, Nobel laureate)
*[[Mario Capecchi]] (genetics, Nobel laureate)
*[[Mark Davis]] (immunology)
*[[Craig Heller]] (exercise physiology)
*[[Andreas Kogelnik]] (OMI founder)
*[[Robert Naviaux]] (virology & cell biology, mitochondrial specialist)
*[[Baldomero Olivera]] (neurobiology & pain)
*[[Ronald Tompkins]] (trauma & metabolism)
*[[James Watson]] (genetics, Nobel laureate)
*[[Wenzhong Xiao]] (computational genomics)
*[[David Bell]] (ME/CFS clinician. See [[1985 Lyndonville outbreak|Lyndonville outbreak]])
*[[Maureen Hanson]] (cell and molecular biology)
*[[Øystein Fluge]] (oncology)
*[[Olav Mella]] (oncology)

==Board==
The OMF board comprises:<ref>{{Cite news|url=https://www.omf.ngo/about-us/omf-board/|title=Foundation Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

*[[Linda Tannenbaum]] (Executive Director)
*[[Kimberley Hicks]] (Treasurer)
*[[Patti Linsley]] (Secretary)
*[[R.P. Channing]] (MD)
*[[Deborah Rose]] (MD)
*[[H. Kenneth Walker]] (MD)

== Research Projects ==
The [[ME/CFS Severely Ill, Big Data Study]] was announced in May, 2015. The most severely ill [[ME/CFS]] patients are being studied to find a diagnostic bio-marker.

In 2016, [http://www.healthrising.org/blog/2016/05/19/mitochondria-man-gets-money-uk-goes-mega-chronic-fatigue-syndrome-research-moves-forward/ "Mitochondria Man Gets Money UK Goes Mega Chronic Fatigue Syndrome Research Moves Forward"]

== Notable research ==
* 2016, [[Metabolic features of chronic fatigue syndrome]]

== Funding ==
OMF have fund-raised primarily from ME sufferers and community for the research. The [[National Institutes of Health]] have not provided funding.

In January 2018 Pineapple fund, a bitcoin investor, donated $1 million to OMF. The anonymous donor was so touched by the outpouring of appreciation from the worldwide ME community that they increased the donation to $5 million.<ref>{{Cite news|url=https://www.omf.ngo/2018/02/02/pineapple-fund/|title=Pineapple Fund increases donation to $5 million {{!}} Open Medicine Foundation|date=2018-02-02|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref>

In May 2018, OMF received a new $1 million anonymous pledge to escalate Dr. [[Ronald Davis]]’s systems biology approach with [[Robert Phair]].<ref>{{Cite news|url=https://www.omf.ngo/2018/05/24/new-1-million-donation-for-me-cfs-research/|title=New $1 million donation for ME/CFS research! {{!}} Open Medicine Foundation|date=2018-05-24|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref>

== Advocacy ==
The OMF and the Davis-Dafoe Family held two screenings of [[Forgotten Plague|''Forgotten Plague'']]. Dr. Davis spoke about ME/CFS and research after the screening.<ref name="ForgottenPlague" /><ref name="MEACTION20151016fp" />

Dr. Davis, along with colleagues, have written and signed [[List of open letters from researchers|open letters]] in reference to research funds and the [[PACE trial]].

==Talks and interviews==

'''Ronald Davis'''

'''2017'''
*[https://www.youtube.com/watch?v=jXL2xzxCXBw Q&A on ME/CFS Research with Dr. Ron Davis] (Mar 7)
*[https://www.youtube.com/watch?v=sGBXXlQO49g An Update on ME/CFS Research with Dr. Ronald W. Davis] (Feb 21)
*[https://www.youtube.com/watch?v=-bs6_5Ldat4 Scientist Ron Davis Tells How We Are "Fast-Tracking" ME/CFS Research] (Feb 3)

'''2016'''
*[https://www.youtube.com/watch?v=wz5we-QZ2Q4 Getting Answers to ME/CFS Faster through Collaboration and Openness] (Dec 13)
*[https://www.youtube.com/watch?v=si_JJf-SVnQ Short Story of a Family's Struggle with ME/CFS] (May 21)

'''Linda Tannenbaum'''

'''2016'''
*[https://www.youtube.com/watch?v=L_7XmWcI3fE Episode 79 - Linda Tannenbaum] (May 8)

== Online Presence ==
*[https://www.omf.ngo Website]
*[https://www.facebook.com/OpenMedicineFoundation Facebook]
*[https://twitter.com/OpenMedF Twitter]
*[https://www.youtube.com/channel/UC0kN-Gt9WJp7pWZJn2oDUbA YouTube]

== Learn more ==
*[https://www.omf.ngo/what-is-mecfs/ What is ME/CFS?]

==See also==
*[[Ronald Davis]]
*[[Linda Tannenbaum]]
*[[Stuart Murdoch]]

== References ==
<references>
<ref name="ForgottenPlague">{{citation
| author1 = Ryan Prior (Director)
| author2 = Nicole Castillo (Director)
| author3 = Anthony Komaroff
| author4 = Hillary Johnson
| author5 = Ron Davis
| title = Forgotten Plague
| medium = documentary film
| date = 2015
| url = https://www.tugg.com/titles/forgotten-plague
}}</ref>
<ref name="MEACTION20151016fp">{{citation
| author = #ME Action
| title = Forgotten Plague Screening Announcement, Palo Alto USA
| date = Dec 2015
| url = https://www.facebook.com/MEActNet/posts/1661003820848684
}}</ref>
</references>

[[Category:Research initiatives]]
[[Category:American research initiatives]]
[[Category:Organizations]]
[[Category:Non-profit organizations based in the United States]]

Open Medicine Foundation

2019-06-23T15:27:49Z

EscapeTheFog:/* Funding */ Rephrase to remove "stepped up", which is against the editorial guidelines as it tells us how to think about the facts.

[[File:OMF.png|right]]
The '''Open Medicine Foundation''' (OMF) is an American non-profit 501(c)(3) organization established in 2012. It funds and initiates groundbreaking research into complex chronic illnesses. It supports neuro-immune disease research with a focus on [[Chronic Fatigue Syndrome]] ([[CFS]]), [[Myalgic Encephalomyelitis]] ([[ME]]), [[Fibromyalgia]] (FMS), and [[Chronic lyme disease|Chronic Lyme Disease]].

The OMF's current project is the [[End ME/CFS Project]].

Many of those involved in OMF, including Executive Director [[Linda Tannenbaum]], either have a [[neuro-immune disease]] or have a family member who has a neuro-immune disease.

OMF's strategy is to include highly recognized and accomplished scientists with expertise in body systems linked to neuro-immune diseases. The organization also has an extensive [https://www.omf.ngo/community/ patient network] as developed through email [https://www.omf.ngo/newsletter-sign-up/ newsletter subscriptions].

[[Stuart Murdoch]] is Ambassador promoting the OMF's work "through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans."<ref>{{Cite news|url=https://www.omf.ngo/omf-ambassador-stuart-murdoch-2/|title=OMF Ambassador - Stuart Murdoch {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

== ME/CFS Scientific Advisory Board ==
The advisory board is made up of world-renowned researchers:<ref>{{Cite news|url=https://www.omf.ngo/scientific-advisory-board/|title=Scientific Advisory Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

*Dr. [[Ronald Davis]] (Scientific Advisory Board Director, and father of [[Whitney Dafoe]])
*[[Paul Berg]] (cellular metabolism, Nobel laureate)
*[[Mario Capecchi]] (genetics, Nobel laureate)
*[[Mark Davis]] (immunology)
*[[Craig Heller]] (exercise physiology)
*[[Andreas Kogelnik]] (OMI founder)
*[[Robert Naviaux]] (virology & cell biology, mitochondrial specialist)
*[[Baldomero Olivera]] (neurobiology & pain)
*[[Ronald Tompkins]] (trauma & metabolism)
*[[James Watson]] (genetics, Nobel laureate)
*[[Wenzhong Xiao]] (computational genomics)
*[[David Bell]] (ME/CFS clinician. See [[1985 Lyndonville outbreak|Lyndonville outbreak]])
*[[Maureen Hanson]] (cell and molecular biology)
*[[Øystein Fluge]] (oncology)
*[[Olav Mella]] (oncology)

==Board==
The OMF board comprises:<ref>{{Cite news|url=https://www.omf.ngo/about-us/omf-board/|title=Foundation Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref>

*[[Linda Tannenbaum]] (Executive Director)
*[[Kimberley Hicks]] (Treasurer)
*[[Patti Linsley]] (Secretary)
*[[R.P. Channing]] (MD)
*[[Deborah Rose]] (MD)
*[[H. Kenneth Walker]] (MD)

== Research Projects ==
The [[ME/CFS Severely Ill, Big Data Study]] was announced in May, 2015. The most severely ill [[ME/CFS]] patients are being studied to find a diagnostic bio-marker.

In 2016, [http://www.healthrising.org/blog/2016/05/19/mitochondria-man-gets-money-uk-goes-mega-chronic-fatigue-syndrome-research-moves-forward/ "Mitochondria Man Gets Money UK Goes Mega Chronic Fatigue Syndrome Research Moves Forward"]

== Notable research ==
* 2016, [[Metabolic features of chronic fatigue syndrome]]

== Funding ==
OMF have fund-raised primarily from ME sufferers and community for the research. NIH has not provided funding.

In January 2018 Pineapple fund, a bitcoin investor, donated $1 million to OMF. The anonymous donor was so touched by the outpouring of appreciation from the worldwide ME community that they increased the donation to $5 million.<ref>{{Cite news|url=https://www.omf.ngo/2018/02/02/pineapple-fund/|title=Pineapple Fund increases donation to $5 million {{!}} Open Medicine Foundation|date=2018-02-02|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref>

In May 2018, OMF received a new $1 million anonymous pledge to escalate Dr. [[Ronald Davis]]’s systems biology approach with [[Robert Phair]].<ref>{{Cite news|url=https://www.omf.ngo/2018/05/24/new-1-million-donation-for-me-cfs-research/|title=New $1 million donation for ME/CFS research! {{!}} Open Medicine Foundation|date=2018-05-24|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref>

== Advocacy ==
The OMF and the Davis-Dafoe Family held two screenings of [[Forgotten Plague|''Forgotten Plague'']]. Dr. Davis spoke about ME/CFS and research after the screening.<ref name="ForgottenPlague" /><ref name="MEACTION20151016fp" />

Dr. Davis, along with colleagues, have written and signed [[List of open letters from researchers|open letters]] in reference to research funds and the [[PACE trial]].

==Talks and interviews==

'''Ronald Davis'''

'''2017'''
*[https://www.youtube.com/watch?v=jXL2xzxCXBw Q&A on ME/CFS Research with Dr. Ron Davis] (Mar 7)
*[https://www.youtube.com/watch?v=sGBXXlQO49g An Update on ME/CFS Research with Dr. Ronald W. Davis] (Feb 21)
*[https://www.youtube.com/watch?v=-bs6_5Ldat4 Scientist Ron Davis Tells How We Are "Fast-Tracking" ME/CFS Research] (Feb 3)

'''2016'''
*[https://www.youtube.com/watch?v=wz5we-QZ2Q4 Getting Answers to ME/CFS Faster through Collaboration and Openness] (Dec 13)
*[https://www.youtube.com/watch?v=si_JJf-SVnQ Short Story of a Family's Struggle with ME/CFS] (May 21)

'''Linda Tannenbaum'''

'''2016'''
*[https://www.youtube.com/watch?v=L_7XmWcI3fE Episode 79 - Linda Tannenbaum] (May 8)

== Online Presence ==
*[https://www.omf.ngo Website]
*[https://www.facebook.com/OpenMedicineFoundation Facebook]
*[https://twitter.com/OpenMedF Twitter]
*[https://www.youtube.com/channel/UC0kN-Gt9WJp7pWZJn2oDUbA YouTube]

== Learn more ==
*[https://www.omf.ngo/what-is-mecfs/ What is ME/CFS?]

==See also==
*[[Ronald Davis]]
*[[Linda Tannenbaum]]
*[[Stuart Murdoch]]

== References ==
<references>
<ref name="ForgottenPlague">{{citation
| author1 = Ryan Prior (Director)
| author2 = Nicole Castillo (Director)
| author3 = Anthony Komaroff
| author4 = Hillary Johnson
| author5 = Ron Davis
| title = Forgotten Plague
| medium = documentary film
| date = 2015
| url = https://www.tugg.com/titles/forgotten-plague
}}</ref>
<ref name="MEACTION20151016fp">{{citation
| author = #ME Action
| title = Forgotten Plague Screening Announcement, Palo Alto USA
| date = Dec 2015
| url = https://www.facebook.com/MEActNet/posts/1661003820848684
}}</ref>
</references>

[[Category:Research initiatives]]
[[Category:American research initiatives]]
[[Category:Organizations]]
[[Category:Non-profit organizations based in the United States]]

Center for Complex Diseases

2019-06-22T15:15:33Z

EscapeTheFog:/* Learn more */ new clinic website

{{NeedsImage}}
The Center for Complex Diseases is a fee-for-service clinic operating in Mountain View, California. The clinic specializes in Chronic Fatigue Syndrome, Dysautonomia, Mast Cell Activation, and chronic infections.<ref>{{Cite web|url=https://centerforcomplexdiseases.business.site/|title=Center for Complex Diseases|website=centerforcomplexdiseases.business.site|language=en|access-date=2019-05-28}}</ref>

==People==
*[[David Kaufman]]
*[[Bela Chheda]]

== Fees, Billing, and Insurance ==
The practice is not a member of any insurance network, and does not accept insurance of any kind. Patients are billed directly, and must provide payment at the time of service. Patients are provided with a "superbill" which may be used to request reimbursement from insurance plans that cover out-of-network claims (typically PPO plans).

Laboratory testing is ordered through a combination of the major national labs (i.e. Quest Diagnostics and/or LabCorp) and specialty labs. In most cases, the lab fees are billed directly by the lab. Patients should check with their insurance carrier to check coverage policies.

==Location==
Center for Complex Diseases

Melchor Pavilion

2490 Hospital Drive, Suite 209

Mountain View, CA 94040

=== Nearby ===
* [[Open Medicine Institute]] - Offers blood draw and other laboratory services from major and specialty labs.

== Contact ==
* Phone: +1-650-447-3001
* Email: clinic@centerforcomplexdiseases.com

==Learn more==
*[https://www.centerforcomplexdiseases.com/ New clinic website]
*[https://centerforcomplexdiseases.business.site/ Old clinic website]

==References==
{{reflist}}

[[Category:Clinics]]
[[Category:American clinics]]
[[Category:California clinics]]

Talk:Bupropion

2019-06-15T16:26:33Z

EscapeTheFog:/* Potential sources -- ~~~~ */ new section

== Potential sources -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 12:26, June 15, 2019 (EDT) ==

A few potential sources that might be useful as citations for some of the currently uncited statements in this article:

* [https://www.ncbi.nlm.nih.gov/pubmed/16871471 Bupropion augmentation in the treatment of chronic fatigue syndrome with coexistent major depression episode.]
* [https://www.uofmhealth.org/health-library/hw33396 Chronic Fatigue: Antidepressants]

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 12:26, June 15, 2019 (EDT)

Modafinil

2019-06-15T16:19:26Z

EscapeTheFog:Citation for summary info.

{{stub}}

Modafinil is a non-stimulant medication used to improve wakefulness in adult patients excessive sleepiness associated with narcolepsy, obstructive sleep apnea, or shift work disorder (SWD).<ref>{{Cite web|url=https://www.accessdata.fda.gov/drugsatfda_docs/label/2010/020717s030s034s036MedGuide.pdf|title=Medication Guide|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019|quote=}}</ref> In the United States it is marketed with the name Provigil.

[[Category:Potential treatments]]

Modafinil

2019-06-15T16:12:24Z

EscapeTheFog:Add stub

Fecal matter transplant

2019-06-15T15:53:40Z

EscapeTheFog:/* Case Reports */ Rename section to "Multi-drug resistant organisms"

A '''fecal matter transplant''' or fecal microbiota transplant (FMT) is a therapy that involves the transfer of fecal waste from a healthy donor to the colon of a patient. It's most common use is in the treatment of ''[[clostridium difficile]]'' (''c.diff'') infections. Interest in fecal matter transplants has grown in those experiencing chronic gastric intestinal problems, including [[chronic fatigue syndrome]].

==Methods==
Fecal matter from a person with healthy [[Microbiome|gut flora]] is mixed with saline, strained, inserted into the recipient patient with via a colonoscopy, endoscopy, sigmoidoscopy, or enema in order to recolonize the ill person's bowels.<ref>{{Cite journal|last=Bakken|first=Johan S.|last2=Borody|first2=Thomas|last3=Brandt|first3=Lawrence J.|last4=Brill|first4=Joel V.|last5=Demarco|first5=Daniel C.|last6=Franzos|first6=Marc Alaric|last7=Kelly|first7=Colleen|last8=Khoruts|first8=Alexander|last9=Louie|first9=Thomas|date=2011-12-01|title=Treating Clostridium difficile Infection With Fecal Microbiota Transplantation|url=http://www.sciencedirect.com/science/article/pii/S1542356511008913|journal=Clinical Gastroenterology and Hepatology|volume=9|issue=12|pages=1044–1049|doi=10.1016/j.cgh.2011.08.014|issn=1542-3565}}</ref><ref>{{Cite web|url=http://thefecaltransplantfoundation.org/what-is-fecal-transplant/|title=What is FMT? – The Fecal Transplant Foundation|language=en-US|access-date=2019-06-11}}</ref> It is recommended that the donor be someone close to the patient, with the first choice being a spouse or significant other, but other close friends, relatives, or a “universal donor” source may be warranted. The physician should ensure that the “universal donor” source employs rigorous screening and testing standards.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref> Testing includes screening the donors’ blood for diseases such as [[HIV/AIDS|HIV]] and [[hepatitis]] and testing their stool for bacterial pathogens, ''[[Giardia lamblia|giardia]]'' and ''cryptosporidium'', parasites, and ''C. difficile''.<ref>{{Cite web|url=https://scienceline.org/2011/11/fecal-transplants-the-scoop-on-therapeutic-poop/|title=Fecal transplants: the scoop on therapeutic poop|date=2011-11-15|website=Scienceline|language=en-US|access-date=2019-06-11}}</ref>

== Risk ==
According to the [[U.S. Food and Drug Administration]] (FDA), FMT may cause serious or life threatening infections.<ref name=":2">{{Cite web|url=https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/important-safety-alert-regarding-use-fecal-microbiota-transplantation-and-risk-serious-adverse|title=Important Safety Alert Regarding Use of Fecal Microbiota for Transplantation and Risk of Serious Adverse Reactions Due to Transmission of Multi-Drug Resistant Organisms|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref>

=== Multi-drug resistant organisms ===
The FDA reported two cases of bacterial infections with multi-drug resistant organisms (MDROs) that occurred due to use of investigational FMT.<ref name=":2" /> In both cases, the FMT was prepared from stool obtained from the same donor, and the recipients became infected with extended-spectrum beta-lactamase (ESBL)-producing Escherichia coli (E.coli), which was later found to be present in donor stool.<ref name=":2" /> One of the recipients died.<ref name=":2" /> As a result of these cases, the FDA has determined that donor screening must include questions that address risk factors for MDROs and donor stools must be tested for MDROs.<ref name=":2" />

== Availability ==

===United States===
FMT is regulated by the [[U.S. Food and Drug Administration]] (FDA), which has not approved it for any use.<ref>{{Cite web|url=https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-potential-risk-serious-infections-caused-multi-drug-resistant-organisms|title=FDA In Brief: FDA warns about potential risk of serious infections caused by multi-drug resistant organisms related to the investigational use of Fecal Microbiota for Transplantation|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref> The [[FDA]] has classified human stool as a biological agent and determined that its use in fecal matter transplantation (FMT) therapy and other research should be regulated to ensure patient safety. In order for a physician or researcher to use FMT in a clinical trial or to treat any condition other than reoccurring, antibiotic-resistant ''clostridium difficile'' infections, an investigational new drug (IND) permit is required.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref>

===United Kingdom===
In the [[United Kingdom|UK]], some clinics, such as the [http://taymount.com/ Taymount Clinic] offer FMT for a wide range of GI and chronic illnesses.<ref>{{Cite web|url=https://taymount.com/|title=Gut Flora Transplants|website=Taymount Clinic|language=en-GB|access-date=2019-06-11}}</ref>

===Australia===
[[Australia]] has some of the most active FMT clinics, such as the Centre for Digestive Diseases in Sydney, under the direction of Thomas J. Borody, MD, PhD.<ref>{{Cite web|url=https://centrefordigestivediseases.com/|title=The Centre for Digestive Diseases – The centre of excellence for gastroenerology|language=en-US|access-date=2019-06-11}}</ref> Dr Borody has conducted many FMT studies over the past 30 years on FMT, including studies assessing efficacy for chronic fatigue syndrome, although criticism regarding patient selection and follow-up have caused doubt on the study results. (Critique can be found in a section [[Fecal matter transplant#Study using FMT for chronic fatigue syndrome|below]].) Additionally Dr Paul Froomes, Melbourne, performs FMT.<ref>{{Cite web|url=http://www.drpaulfroomes.com.au/|title=Home|website=Dr Paul Froomes - Consultant Gastroenterologist {{!}} Melbourne|language=en-US|access-date=2019-06-11}}</ref>

===Norway===
In 2017, the Research Council of [[Norway]] (Norges forskningsråd) announced undertaking a randomized controlled trial for use of fecal microbiota transplant in [[chronic fatigue syndrome]].<ref name=":0">{{Cite web|url=https://clinicaltrials.gov/ct2/show/NCT03691987|title=The Comeback Study - Full Text View - ClinicalTrials.gov|website=clinicaltrials.gov|language=en|access-date=2019-06-11}}</ref>

A randomized, placebo-controlled trial called "The Comeback" study is currently underway at the University Hospital of North Norway. Eighty ME/CFS patients will be followed up for 12 months after receiving either fecal microbiota transplantation (FMT) or a placebo. The trial will take many years to complete. Final results are expected in 2023.<ref name=":0" />

==Home experimentation==
The medical cautions and strict FDA regulation hasn't stopped people, especially those with GI illnesses, such as [[ulcerative colitis]] or [[irritable bowel syndrome]], from experimenting on their own with FMT. Recipes for do-it-yourself FMT are abundant online, including Dr. [[Sarah Myhill]]'s protocol, Probiotic Therapy Home Infusion Protocol.<ref>{{Cite web|url=http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf|title=Probiotic Therapy Home Infusion Protocol|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=2019-06-11}}</ref>

==Critique of study using FMT for chronic fatigue syndrome==
A 2012 study by Borody, at el, using a variety of antibiotics followed by one to three fecal matter transplants (and in six patients an oral course of cultured bacteria), reported a 70% rate of improvement of sleep and "lethargy/fatigue" symptoms in [[Fukuda criteria|Fukuda]] CFS patients recruited from a clinic for digestive disorders.<ref name=":1">{{Cite journal|last=Borody|first=Thomas J|author-link=|last2=Nowak|first2=Anna|author-link2=|last3=Finlayson|first3=Sarah|author-link3=|author-link4=|author-link5=|date=Dec 2012|title=The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy|url=https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA|journal=Journal of the Australasian College of Nutritional and Environmental Medicine|volume=31|issue=3|pages=3-8|quote=|via=}}</ref> The authors reported a 58% success rate at long term followup 15-20 years post-treatment, but only 12 patients (out of the original 60) were contacted at that point. Accordingly, the long-term followup results would not have been statistically significant.

That study also neglected to use any objective outcome measurements, a control group was not included, and the symptoms used to determine a successful outcome regarding "CFS symptoms" did not account for physical limitations or many other fundamental ME/CFS symptoms. It is not clear how many symptoms were measured before and after treatment, hence it cannot be determined if any results were statistically significant. Furthermore, all patients were recruited from a clinic for digestive disorders, which would suggest that they were not typical ME/CFS patients. The recruitment criteria did not require that patients have the symptom of [[post-exertional malaise]], hence the results may not be applicable to ME/CFS patients meeting more stringent criteria.

There was no study protocol published, and there is no explanation provided for the results first being published as a full paper fifteen years after the initial treatments took place. A conference poster abstract from 1995 indicates that other symptoms were tested at an earlier followup,<ref>{{Cite journal|last=Borody|first=TJ|author-link=|author-link2=|author-link3=|author-link4=|author-link5=|date=1995|title=Bacteriotherapy for Chronic Fatigue Syndrome – A long-term follow-up study|url=|journal=Proceedings of ACMA Complementary Medicine Sydney 1995|volume=|issue=|pages=|quote=|via=}}</ref> but those symptoms are not reported or discussed in the 2012 long-term followup, which may indicate that the treatment was less successful than reported. The poster abstract does not appear to have been published, and the full long-term followup was published in an obscure online journal with no apparent peer review process.

This study has not been replicated, and no other studies for FMT and ME/CFS have been conducted. Accordingly, the existing evidence base in favor of this therapy is very weak.

==Research studies==
*2012, The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy<ref name=":1" />
*2013, High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients<ref>{{Cite journal|last=Frémont|first=Marc|author-link=|last2=Coomans|first2=Danny|author-link2=|last3=Massart|first3=Sebastien|author-link3=|last4=De Meirleir|first4=Kenny|author-link4=Kenny De Meirleir|author-link5=|date=Aug 2013|title=High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients|url=https://linkinghub.elsevier.com/retrieve/pii/S1075996413000929|journal=Anaerobe|language=en|volume=22|issue=|pages=50–56|doi=10.1016/j.anaerobe.2013.06.002|quote=|via=}}</ref>
*2016, Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders<ref>{{Cite journal|last=Evrensel|first=Alper|last2=Ceylan|first2=Mehmet Emin|date=2016-08-31|title=Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders|url=http://www.cpn.or.kr/journal/view.html?doi=10.9758/cpn.2016.14.3.231|journal=Clinical Psychopharmacology and Neuroscience|language=en|volume=14|issue=3|pages=231–237|doi=10.9758/cpn.2016.14.3.231|issn=1738-1088}}</ref>

==See also==
*[[Microbiome]]
==Learn more==
*[https://designershitdocumentary.com/ Designer Shit] – a documentary about FMT scheduled for release sometime in 2019
*[http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf Home Infusion Protocol] published by [[Sarah Myhill]]
*[https://www.idsociety.org/FMT/ Infectious Diseases Society of America Information about FDA regulations re: FMT]
*[http://thefecaltransplantfoundation.org/what-is-fecal-transplant/ The Fecal Transplant Foundation]

==References==
<references />

[[Category:Potential treatments]]
[[Category:Probiotics]]

Talk:Fecal matter transplant

2019-06-15T15:51:50Z

EscapeTheFog:/* MDRO testing guidelines -- ~~~~ */ new section

== SIBO -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:15, June 11, 2019 (EDT) ==

Would like to get some text about FMT as a potential treatment for SIBO. I have heard of this being used experimentally. [https://designershitdocumentary.com/fecal-transplant-for-sibo/ Fecal Transplant for SIBO] has some basic info and claims it has never been studied. This sounds plausibly correct, but I wonder if I can find a more authoritative source. [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:15, June 11, 2019 (EDT)

== MDRO testing guidelines -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 11:51, June 15, 2019 (EDT) ==

I recently added text on risk and case reports of serious/deadly complications. For this I cited
[http://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/important-safety-alert-regarding-use-fecal-microbiota-transplantation-and-risk-serious-adverse safety alert document] from the FDA. Within the doc I was confused by the following text "FDA scientists have determined the specific MDRO testing and frequency that should be implemented." It's unclear to me if this is a typo (should have been "have not determined" or "have not yet determined") or where the testing guidelines have been published. If anyone can find the answer to this, I think it would be great to clarify in the MEpedia article whether there is an official testing guideline/standard, or practitioners are free to develop their own.

Fecal matter transplant

2019-06-15T15:41:27Z

EscapeTheFog:/* Risk */ Add source date to citation.

A '''fecal matter transplant''' or fecal microbiota transplant (FMT) is a therapy that involves the transfer of fecal waste from a healthy donor to the colon of a patient. It's most common use is in the treatment of ''[[clostridium difficile]]'' (''c.diff'') infections. Interest in fecal matter transplants has grown in those experiencing chronic gastric intestinal problems, including [[chronic fatigue syndrome]].

==Methods==
Fecal matter from a person with healthy [[Microbiome|gut flora]] is mixed with saline, strained, inserted into the recipient patient with via a colonoscopy, endoscopy, sigmoidoscopy, or enema in order to recolonize the ill person's bowels.<ref>{{Cite journal|last=Bakken|first=Johan S.|last2=Borody|first2=Thomas|last3=Brandt|first3=Lawrence J.|last4=Brill|first4=Joel V.|last5=Demarco|first5=Daniel C.|last6=Franzos|first6=Marc Alaric|last7=Kelly|first7=Colleen|last8=Khoruts|first8=Alexander|last9=Louie|first9=Thomas|date=2011-12-01|title=Treating Clostridium difficile Infection With Fecal Microbiota Transplantation|url=http://www.sciencedirect.com/science/article/pii/S1542356511008913|journal=Clinical Gastroenterology and Hepatology|volume=9|issue=12|pages=1044–1049|doi=10.1016/j.cgh.2011.08.014|issn=1542-3565}}</ref><ref>{{Cite web|url=http://thefecaltransplantfoundation.org/what-is-fecal-transplant/|title=What is FMT? – The Fecal Transplant Foundation|language=en-US|access-date=2019-06-11}}</ref> It is recommended that the donor be someone close to the patient, with the first choice being a spouse or significant other, but other close friends, relatives, or a “universal donor” source may be warranted. The physician should ensure that the “universal donor” source employs rigorous screening and testing standards.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref> Testing includes screening the donors’ blood for diseases such as [[HIV/AIDS|HIV]] and [[hepatitis]] and testing their stool for bacterial pathogens, ''[[Giardia lamblia|giardia]]'' and ''cryptosporidium'', parasites, and ''C. difficile''.<ref>{{Cite web|url=https://scienceline.org/2011/11/fecal-transplants-the-scoop-on-therapeutic-poop/|title=Fecal transplants: the scoop on therapeutic poop|date=2011-11-15|website=Scienceline|language=en-US|access-date=2019-06-11}}</ref>

== Risk ==
According to the [[U.S. Food and Drug Administration]] (FDA), FMT may cause serious or life threatening infections.<ref name=":2">{{Cite web|url=https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/important-safety-alert-regarding-use-fecal-microbiota-transplantation-and-risk-serious-adverse|title=Important Safety Alert Regarding Use of Fecal Microbiota for Transplantation and Risk of Serious Adverse Reactions Due to Transmission of Multi-Drug Resistant Organisms|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref>

=== Case Reports ===
The FDA reported two cases of bacterial infections with multi-drug resistant organisms (MDROs) that occurred due to use of investigational FMT.<ref name=":2" /> In both cases, the FMT was prepared from stool obtained from the same donor, and the recipients became infected with extended-spectrum beta-lactamase (ESBL)-producing Escherichia coli (E.coli), which was later found to be present in donor stool.<ref name=":2" /> One of the recipients died.<ref name=":2" /> As a result of these cases, the FDA has determined that donor screening must include questions that address risk factors for MDROs and donor stools must be tested for MDROs.<ref name=":2" />

== Availability ==

===United States===
FMT is regulated by the [[U.S. Food and Drug Administration]] (FDA), which has not approved it for any use.<ref>{{Cite web|url=https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-potential-risk-serious-infections-caused-multi-drug-resistant-organisms|title=FDA In Brief: FDA warns about potential risk of serious infections caused by multi-drug resistant organisms related to the investigational use of Fecal Microbiota for Transplantation|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref> The [[FDA]] has classified human stool as a biological agent and determined that its use in fecal matter transplantation (FMT) therapy and other research should be regulated to ensure patient safety. In order for a physician or researcher to use FMT in a clinical trial or to treat any condition other than reoccurring, antibiotic-resistant ''clostridium difficile'' infections, an investigational new drug (IND) permit is required.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref>

===United Kingdom===
In the [[United Kingdom|UK]], some clinics, such as the [http://taymount.com/ Taymount Clinic] offer FMT for a wide range of GI and chronic illnesses.<ref>{{Cite web|url=https://taymount.com/|title=Gut Flora Transplants|website=Taymount Clinic|language=en-GB|access-date=2019-06-11}}</ref>

===Australia===
[[Australia]] has some of the most active FMT clinics, such as the Centre for Digestive Diseases in Sydney, under the direction of Thomas J. Borody, MD, PhD.<ref>{{Cite web|url=https://centrefordigestivediseases.com/|title=The Centre for Digestive Diseases – The centre of excellence for gastroenerology|language=en-US|access-date=2019-06-11}}</ref> Dr Borody has conducted many FMT studies over the past 30 years on FMT, including studies assessing efficacy for chronic fatigue syndrome, although criticism regarding patient selection and follow-up have caused doubt on the study results. (Critique can be found in a section [[Fecal matter transplant#Study using FMT for chronic fatigue syndrome|below]].) Additionally Dr Paul Froomes, Melbourne, performs FMT.<ref>{{Cite web|url=http://www.drpaulfroomes.com.au/|title=Home|website=Dr Paul Froomes - Consultant Gastroenterologist {{!}} Melbourne|language=en-US|access-date=2019-06-11}}</ref>

===Norway===
In 2017, the Research Council of [[Norway]] (Norges forskningsråd) announced undertaking a randomized controlled trial for use of fecal microbiota transplant in [[chronic fatigue syndrome]].<ref name=":0">{{Cite web|url=https://clinicaltrials.gov/ct2/show/NCT03691987|title=The Comeback Study - Full Text View - ClinicalTrials.gov|website=clinicaltrials.gov|language=en|access-date=2019-06-11}}</ref>

A randomized, placebo-controlled trial called "The Comeback" study is currently underway at the University Hospital of North Norway. Eighty ME/CFS patients will be followed up for 12 months after receiving either fecal microbiota transplantation (FMT) or a placebo. The trial will take many years to complete. Final results are expected in 2023.<ref name=":0" />

==Home experimentation==
The medical cautions and strict FDA regulation hasn't stopped people, especially those with GI illnesses, such as [[ulcerative colitis]] or [[irritable bowel syndrome]], from experimenting on their own with FMT. Recipes for do-it-yourself FMT are abundant online, including Dr. [[Sarah Myhill]]'s protocol, Probiotic Therapy Home Infusion Protocol.<ref>{{Cite web|url=http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf|title=Probiotic Therapy Home Infusion Protocol|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=2019-06-11}}</ref>

==Critique of study using FMT for chronic fatigue syndrome==
A 2012 study by Borody, at el, using a variety of antibiotics followed by one to three fecal matter transplants (and in six patients an oral course of cultured bacteria), reported a 70% rate of improvement of sleep and "lethargy/fatigue" symptoms in [[Fukuda criteria|Fukuda]] CFS patients recruited from a clinic for digestive disorders.<ref name=":1">{{Cite journal|last=Borody|first=Thomas J|author-link=|last2=Nowak|first2=Anna|author-link2=|last3=Finlayson|first3=Sarah|author-link3=|author-link4=|author-link5=|date=Dec 2012|title=The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy|url=https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA|journal=Journal of the Australasian College of Nutritional and Environmental Medicine|volume=31|issue=3|pages=3-8|quote=|via=}}</ref> The authors reported a 58% success rate at long term followup 15-20 years post-treatment, but only 12 patients (out of the original 60) were contacted at that point. Accordingly, the long-term followup results would not have been statistically significant.

That study also neglected to use any objective outcome measurements, a control group was not included, and the symptoms used to determine a successful outcome regarding "CFS symptoms" did not account for physical limitations or many other fundamental ME/CFS symptoms. It is not clear how many symptoms were measured before and after treatment, hence it cannot be determined if any results were statistically significant. Furthermore, all patients were recruited from a clinic for digestive disorders, which would suggest that they were not typical ME/CFS patients. The recruitment criteria did not require that patients have the symptom of [[post-exertional malaise]], hence the results may not be applicable to ME/CFS patients meeting more stringent criteria.

There was no study protocol published, and there is no explanation provided for the results first being published as a full paper fifteen years after the initial treatments took place. A conference poster abstract from 1995 indicates that other symptoms were tested at an earlier followup,<ref>{{Cite journal|last=Borody|first=TJ|author-link=|author-link2=|author-link3=|author-link4=|author-link5=|date=1995|title=Bacteriotherapy for Chronic Fatigue Syndrome – A long-term follow-up study|url=|journal=Proceedings of ACMA Complementary Medicine Sydney 1995|volume=|issue=|pages=|quote=|via=}}</ref> but those symptoms are not reported or discussed in the 2012 long-term followup, which may indicate that the treatment was less successful than reported. The poster abstract does not appear to have been published, and the full long-term followup was published in an obscure online journal with no apparent peer review process.

This study has not been replicated, and no other studies for FMT and ME/CFS have been conducted. Accordingly, the existing evidence base in favor of this therapy is very weak.

==Research studies==
*2012, The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy<ref name=":1" />
*2013, High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients<ref>{{Cite journal|last=Frémont|first=Marc|author-link=|last2=Coomans|first2=Danny|author-link2=|last3=Massart|first3=Sebastien|author-link3=|last4=De Meirleir|first4=Kenny|author-link4=Kenny De Meirleir|author-link5=|date=Aug 2013|title=High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients|url=https://linkinghub.elsevier.com/retrieve/pii/S1075996413000929|journal=Anaerobe|language=en|volume=22|issue=|pages=50–56|doi=10.1016/j.anaerobe.2013.06.002|quote=|via=}}</ref>
*2016, Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders<ref>{{Cite journal|last=Evrensel|first=Alper|last2=Ceylan|first2=Mehmet Emin|date=2016-08-31|title=Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders|url=http://www.cpn.or.kr/journal/view.html?doi=10.9758/cpn.2016.14.3.231|journal=Clinical Psychopharmacology and Neuroscience|language=en|volume=14|issue=3|pages=231–237|doi=10.9758/cpn.2016.14.3.231|issn=1738-1088}}</ref>

==See also==
*[[Microbiome]]
==Learn more==
*[https://designershitdocumentary.com/ Designer Shit] – a documentary about FMT scheduled for release sometime in 2019
*[http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf Home Infusion Protocol] published by [[Sarah Myhill]]
*[https://www.idsociety.org/FMT/ Infectious Diseases Society of America Information about FDA regulations re: FMT]
*[http://thefecaltransplantfoundation.org/what-is-fecal-transplant/ The Fecal Transplant Foundation]

==References==
<references />

[[Category:Potential treatments]]
[[Category:Probiotics]]

Fecal matter transplant

2019-06-15T15:40:20Z

EscapeTheFog:/* United States */ Correcting FDA approval status with citation to recent press release.

A '''fecal matter transplant''' or fecal microbiota transplant (FMT) is a therapy that involves the transfer of fecal waste from a healthy donor to the colon of a patient. It's most common use is in the treatment of ''[[clostridium difficile]]'' (''c.diff'') infections. Interest in fecal matter transplants has grown in those experiencing chronic gastric intestinal problems, including [[chronic fatigue syndrome]].

==Methods==
Fecal matter from a person with healthy [[Microbiome|gut flora]] is mixed with saline, strained, inserted into the recipient patient with via a colonoscopy, endoscopy, sigmoidoscopy, or enema in order to recolonize the ill person's bowels.<ref>{{Cite journal|last=Bakken|first=Johan S.|last2=Borody|first2=Thomas|last3=Brandt|first3=Lawrence J.|last4=Brill|first4=Joel V.|last5=Demarco|first5=Daniel C.|last6=Franzos|first6=Marc Alaric|last7=Kelly|first7=Colleen|last8=Khoruts|first8=Alexander|last9=Louie|first9=Thomas|date=2011-12-01|title=Treating Clostridium difficile Infection With Fecal Microbiota Transplantation|url=http://www.sciencedirect.com/science/article/pii/S1542356511008913|journal=Clinical Gastroenterology and Hepatology|volume=9|issue=12|pages=1044–1049|doi=10.1016/j.cgh.2011.08.014|issn=1542-3565}}</ref><ref>{{Cite web|url=http://thefecaltransplantfoundation.org/what-is-fecal-transplant/|title=What is FMT? – The Fecal Transplant Foundation|language=en-US|access-date=2019-06-11}}</ref> It is recommended that the donor be someone close to the patient, with the first choice being a spouse or significant other, but other close friends, relatives, or a “universal donor” source may be warranted. The physician should ensure that the “universal donor” source employs rigorous screening and testing standards.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref> Testing includes screening the donors’ blood for diseases such as [[HIV/AIDS|HIV]] and [[hepatitis]] and testing their stool for bacterial pathogens, ''[[Giardia lamblia|giardia]]'' and ''cryptosporidium'', parasites, and ''C. difficile''.<ref>{{Cite web|url=https://scienceline.org/2011/11/fecal-transplants-the-scoop-on-therapeutic-poop/|title=Fecal transplants: the scoop on therapeutic poop|date=2011-11-15|website=Scienceline|language=en-US|access-date=2019-06-11}}</ref>

== Risk ==
According to the [[U.S. Food and Drug Administration]] (FDA), FMT may cause serious or life threatening infections.<ref name=":2">{{Cite web|url=https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/important-safety-alert-regarding-use-fecal-microbiota-transplantation-and-risk-serious-adverse|title=Important Safety Alert Regarding Use of Fecal Microbiota for Transplantation and Risk of Serious Adverse Reactions Due to Transmission of Multi-Drug Resistant Organisms|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref>

=== Case Reports ===
The FDA reported two cases of bacterial infections with multi-drug resistant organisms (MDROs) that occurred due to use of investigational FMT.<ref name=":2" /> In both cases, the FMT was prepared from stool obtained from the same donor, and the recipients became infected with extended-spectrum beta-lactamase (ESBL)-producing Escherichia coli (E.coli), which was later found to be present in donor stool.<ref name=":2" /> One of the recipients died.<ref name=":2" /> As a result of these cases, the FDA has determined that donor screening must include questions that address risk factors for MDROs and donor stools must be tested for MDROs.<ref name=":2" />

== Availability ==

===United States===
FMT is regulated by the [[U.S. Food and Drug Administration]] (FDA), which has not approved it for any use.<ref>{{Cite web|url=https://www.fda.gov/news-events/fda-brief/fda-brief-fda-warns-about-potential-risk-serious-infections-caused-multi-drug-resistant-organisms|title=FDA In Brief: FDA warns about potential risk of serious infections caused by multi-drug resistant organisms related to the investigational use of Fecal Microbiota for Transplantation|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=June 13, 2019|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref> The [[FDA]] has classified human stool as a biological agent and determined that its use in fecal matter transplantation (FMT) therapy and other research should be regulated to ensure patient safety. In order for a physician or researcher to use FMT in a clinical trial or to treat any condition other than reoccurring, antibiotic-resistant ''clostridium difficile'' infections, an investigational new drug (IND) permit is required.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref>

===United Kingdom===
In the [[United Kingdom|UK]], some clinics, such as the [http://taymount.com/ Taymount Clinic] offer FMT for a wide range of GI and chronic illnesses.<ref>{{Cite web|url=https://taymount.com/|title=Gut Flora Transplants|website=Taymount Clinic|language=en-GB|access-date=2019-06-11}}</ref>

===Australia===
[[Australia]] has some of the most active FMT clinics, such as the Centre for Digestive Diseases in Sydney, under the direction of Thomas J. Borody, MD, PhD.<ref>{{Cite web|url=https://centrefordigestivediseases.com/|title=The Centre for Digestive Diseases – The centre of excellence for gastroenerology|language=en-US|access-date=2019-06-11}}</ref> Dr Borody has conducted many FMT studies over the past 30 years on FMT, including studies assessing efficacy for chronic fatigue syndrome, although criticism regarding patient selection and follow-up have caused doubt on the study results. (Critique can be found in a section [[Fecal matter transplant#Study using FMT for chronic fatigue syndrome|below]].) Additionally Dr Paul Froomes, Melbourne, performs FMT.<ref>{{Cite web|url=http://www.drpaulfroomes.com.au/|title=Home|website=Dr Paul Froomes - Consultant Gastroenterologist {{!}} Melbourne|language=en-US|access-date=2019-06-11}}</ref>

===Norway===
In 2017, the Research Council of [[Norway]] (Norges forskningsråd) announced undertaking a randomized controlled trial for use of fecal microbiota transplant in [[chronic fatigue syndrome]].<ref name=":0">{{Cite web|url=https://clinicaltrials.gov/ct2/show/NCT03691987|title=The Comeback Study - Full Text View - ClinicalTrials.gov|website=clinicaltrials.gov|language=en|access-date=2019-06-11}}</ref>

A randomized, placebo-controlled trial called "The Comeback" study is currently underway at the University Hospital of North Norway. Eighty ME/CFS patients will be followed up for 12 months after receiving either fecal microbiota transplantation (FMT) or a placebo. The trial will take many years to complete. Final results are expected in 2023.<ref name=":0" />

==Home experimentation==
The medical cautions and strict FDA regulation hasn't stopped people, especially those with GI illnesses, such as [[ulcerative colitis]] or [[irritable bowel syndrome]], from experimenting on their own with FMT. Recipes for do-it-yourself FMT are abundant online, including Dr. [[Sarah Myhill]]'s protocol, Probiotic Therapy Home Infusion Protocol.<ref>{{Cite web|url=http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf|title=Probiotic Therapy Home Infusion Protocol|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=2019-06-11}}</ref>

==Critique of study using FMT for chronic fatigue syndrome==
A 2012 study by Borody, at el, using a variety of antibiotics followed by one to three fecal matter transplants (and in six patients an oral course of cultured bacteria), reported a 70% rate of improvement of sleep and "lethargy/fatigue" symptoms in [[Fukuda criteria|Fukuda]] CFS patients recruited from a clinic for digestive disorders.<ref name=":1">{{Cite journal|last=Borody|first=Thomas J|author-link=|last2=Nowak|first2=Anna|author-link2=|last3=Finlayson|first3=Sarah|author-link3=|author-link4=|author-link5=|date=Dec 2012|title=The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy|url=https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA|journal=Journal of the Australasian College of Nutritional and Environmental Medicine|volume=31|issue=3|pages=3-8|quote=|via=}}</ref> The authors reported a 58% success rate at long term followup 15-20 years post-treatment, but only 12 patients (out of the original 60) were contacted at that point. Accordingly, the long-term followup results would not have been statistically significant.

That study also neglected to use any objective outcome measurements, a control group was not included, and the symptoms used to determine a successful outcome regarding "CFS symptoms" did not account for physical limitations or many other fundamental ME/CFS symptoms. It is not clear how many symptoms were measured before and after treatment, hence it cannot be determined if any results were statistically significant. Furthermore, all patients were recruited from a clinic for digestive disorders, which would suggest that they were not typical ME/CFS patients. The recruitment criteria did not require that patients have the symptom of [[post-exertional malaise]], hence the results may not be applicable to ME/CFS patients meeting more stringent criteria.

There was no study protocol published, and there is no explanation provided for the results first being published as a full paper fifteen years after the initial treatments took place. A conference poster abstract from 1995 indicates that other symptoms were tested at an earlier followup,<ref>{{Cite journal|last=Borody|first=TJ|author-link=|author-link2=|author-link3=|author-link4=|author-link5=|date=1995|title=Bacteriotherapy for Chronic Fatigue Syndrome – A long-term follow-up study|url=|journal=Proceedings of ACMA Complementary Medicine Sydney 1995|volume=|issue=|pages=|quote=|via=}}</ref> but those symptoms are not reported or discussed in the 2012 long-term followup, which may indicate that the treatment was less successful than reported. The poster abstract does not appear to have been published, and the full long-term followup was published in an obscure online journal with no apparent peer review process.

This study has not been replicated, and no other studies for FMT and ME/CFS have been conducted. Accordingly, the existing evidence base in favor of this therapy is very weak.

==Research studies==
*2012, The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy<ref name=":1" />
*2013, High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients<ref>{{Cite journal|last=Frémont|first=Marc|author-link=|last2=Coomans|first2=Danny|author-link2=|last3=Massart|first3=Sebastien|author-link3=|last4=De Meirleir|first4=Kenny|author-link4=Kenny De Meirleir|author-link5=|date=Aug 2013|title=High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients|url=https://linkinghub.elsevier.com/retrieve/pii/S1075996413000929|journal=Anaerobe|language=en|volume=22|issue=|pages=50–56|doi=10.1016/j.anaerobe.2013.06.002|quote=|via=}}</ref>
*2016, Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders<ref>{{Cite journal|last=Evrensel|first=Alper|last2=Ceylan|first2=Mehmet Emin|date=2016-08-31|title=Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders|url=http://www.cpn.or.kr/journal/view.html?doi=10.9758/cpn.2016.14.3.231|journal=Clinical Psychopharmacology and Neuroscience|language=en|volume=14|issue=3|pages=231–237|doi=10.9758/cpn.2016.14.3.231|issn=1738-1088}}</ref>

==See also==
*[[Microbiome]]
==Learn more==
*[https://designershitdocumentary.com/ Designer Shit] – a documentary about FMT scheduled for release sometime in 2019
*[http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf Home Infusion Protocol] published by [[Sarah Myhill]]
*[https://www.idsociety.org/FMT/ Infectious Diseases Society of America Information about FDA regulations re: FMT]
*[http://thefecaltransplantfoundation.org/what-is-fecal-transplant/ The Fecal Transplant Foundation]

==References==
<references />

[[Category:Potential treatments]]
[[Category:Probiotics]]

Fecal matter transplant

2019-06-15T15:34:47Z

EscapeTheFog:Add Risk section with summary of case reports of serious and deadly infections with MDROs, which were recently announced by the FDA.

A '''fecal matter transplant''' or fecal microbiota transplant (FMT) is a therapy that involves the transfer of fecal waste from a healthy donor to the colon of a patient. It's most common use is in the treatment of ''[[clostridium difficile]]'' (''c.diff'') infections. Interest in fecal matter transplants has grown in those experiencing chronic gastric intestinal problems, including [[chronic fatigue syndrome]].

==Methods==
Fecal matter from a person with healthy [[Microbiome|gut flora]] is mixed with saline, strained, inserted into the recipient patient with via a colonoscopy, endoscopy, sigmoidoscopy, or enema in order to recolonize the ill person's bowels.<ref>{{Cite journal|last=Bakken|first=Johan S.|last2=Borody|first2=Thomas|last3=Brandt|first3=Lawrence J.|last4=Brill|first4=Joel V.|last5=Demarco|first5=Daniel C.|last6=Franzos|first6=Marc Alaric|last7=Kelly|first7=Colleen|last8=Khoruts|first8=Alexander|last9=Louie|first9=Thomas|date=2011-12-01|title=Treating Clostridium difficile Infection With Fecal Microbiota Transplantation|url=http://www.sciencedirect.com/science/article/pii/S1542356511008913|journal=Clinical Gastroenterology and Hepatology|volume=9|issue=12|pages=1044–1049|doi=10.1016/j.cgh.2011.08.014|issn=1542-3565}}</ref><ref>{{Cite web|url=http://thefecaltransplantfoundation.org/what-is-fecal-transplant/|title=What is FMT? – The Fecal Transplant Foundation|language=en-US|access-date=2019-06-11}}</ref> It is recommended that the donor be someone close to the patient, with the first choice being a spouse or significant other, but other close friends, relatives, or a “universal donor” source may be warranted. The physician should ensure that the “universal donor” source employs rigorous screening and testing standards.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref> Testing includes screening the donors’ blood for diseases such as [[HIV/AIDS|HIV]] and [[hepatitis]] and testing their stool for bacterial pathogens, ''[[Giardia lamblia|giardia]]'' and ''cryptosporidium'', parasites, and ''C. difficile''.<ref>{{Cite web|url=https://scienceline.org/2011/11/fecal-transplants-the-scoop-on-therapeutic-poop/|title=Fecal transplants: the scoop on therapeutic poop|date=2011-11-15|website=Scienceline|language=en-US|access-date=2019-06-11}}</ref>

== Risk ==
According to the [[U.S. Food and Drug Administration]] (FDA), FMT may cause serious or life threatening infections.<ref name=":2">{{Cite web|url=https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/important-safety-alert-regarding-use-fecal-microbiota-transplantation-and-risk-serious-adverse|title=Important Safety Alert Regarding Use of Fecal Microbiota for Transplantation and Risk of Serious Adverse Reactions Due to Transmission of Multi-Drug Resistant Organisms|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=U.S. Food & Drug Administration|archive-url=|archive-date=|dead-url=|access-date=June 15, 2019}}</ref>

=== Case Reports ===
The FDA reported two cases of bacterial infections with multi-drug resistant organisms (MDROs) that occurred due to use of investigational FMT.<ref name=":2" /> In both cases, the FMT was prepared from stool obtained from the same donor, and the recipients became infected with extended-spectrum beta-lactamase (ESBL)-producing Escherichia coli (E.coli), which was later found to be present in donor stool.<ref name=":2" /> One of the recipients died.<ref name=":2" /> As a result of these cases, the FDA has determined that donor screening must include questions that address risk factors for MDROs and donor stools must be tested for MDROs.<ref name=":2" />

== Availability ==

===United States===
At present, in the [[United States|US]], fecal matter transplant is regulated by the [[U.S. Food and Drug Administration]] (FDA) and is only approved for use in severe or reoccurring ''[[clostridium difficile]]'' (''c.diff'') infections. The [[FDA]] has classified human stool as a biological agent and determined that its use in fecal matter transplantation (FMT) therapy and other research should be regulated to ensure patient safety. In order for a physician or researcher to use FMT in a clinical trial or to treat any condition other than reoccurring, antibiotic-resistant ''clostridium difficile'' infections, an investigational new drug (IND) permit is required.<ref>{{Cite web|url=https://www.idsociety.org/public-health/emerging-clinical-issues/emerging-clinical-issues/fecal-microbiota-transplantation/|title=Fecal Microbiota Transplantation|website=www.idsociety.org|language=en|access-date=2019-06-11}}</ref>

===United Kingdom===
In the [[United Kingdom|UK]], some clinics, such as the [http://taymount.com/ Taymount Clinic] offer FMT for a wide range of GI and chronic illnesses.<ref>{{Cite web|url=https://taymount.com/|title=Gut Flora Transplants|website=Taymount Clinic|language=en-GB|access-date=2019-06-11}}</ref>

===Australia===
[[Australia]] has some of the most active FMT clinics, such as the Centre for Digestive Diseases in Sydney, under the direction of Thomas J. Borody, MD, PhD.<ref>{{Cite web|url=https://centrefordigestivediseases.com/|title=The Centre for Digestive Diseases – The centre of excellence for gastroenerology|language=en-US|access-date=2019-06-11}}</ref> Dr Borody has conducted many FMT studies over the past 30 years on FMT, including studies assessing efficacy for chronic fatigue syndrome, although criticism regarding patient selection and follow-up have caused doubt on the study results. (Critique can be found in a section [[Fecal matter transplant#Study using FMT for chronic fatigue syndrome|below]].) Additionally Dr Paul Froomes, Melbourne, performs FMT.<ref>{{Cite web|url=http://www.drpaulfroomes.com.au/|title=Home|website=Dr Paul Froomes - Consultant Gastroenterologist {{!}} Melbourne|language=en-US|access-date=2019-06-11}}</ref>

===Norway===
In 2017, the Research Council of [[Norway]] (Norges forskningsråd) announced undertaking a randomized controlled trial for use of fecal microbiota transplant in [[chronic fatigue syndrome]].<ref name=":0">{{Cite web|url=https://clinicaltrials.gov/ct2/show/NCT03691987|title=The Comeback Study - Full Text View - ClinicalTrials.gov|website=clinicaltrials.gov|language=en|access-date=2019-06-11}}</ref>

A randomized, placebo-controlled trial called "The Comeback" study is currently underway at the University Hospital of North Norway. Eighty ME/CFS patients will be followed up for 12 months after receiving either fecal microbiota transplantation (FMT) or a placebo. The trial will take many years to complete. Final results are expected in 2023.<ref name=":0" />

==Home experimentation==
The medical cautions and strict FDA regulation hasn't stopped people, especially those with GI illnesses, such as [[ulcerative colitis]] or [[irritable bowel syndrome]], from experimenting on their own with FMT. Recipes for do-it-yourself FMT are abundant online, including Dr. [[Sarah Myhill]]'s protocol, Probiotic Therapy Home Infusion Protocol.<ref>{{Cite web|url=http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf|title=Probiotic Therapy Home Infusion Protocol|last=|first=|authorlink=|last2=|first2=|authorlink2=|date=|website=|archive-url=|archive-date=|dead-url=|access-date=2019-06-11}}</ref>

==Critique of study using FMT for chronic fatigue syndrome==
A 2012 study by Borody, at el, using a variety of antibiotics followed by one to three fecal matter transplants (and in six patients an oral course of cultured bacteria), reported a 70% rate of improvement of sleep and "lethargy/fatigue" symptoms in [[Fukuda criteria|Fukuda]] CFS patients recruited from a clinic for digestive disorders.<ref name=":1">{{Cite journal|last=Borody|first=Thomas J|author-link=|last2=Nowak|first2=Anna|author-link2=|last3=Finlayson|first3=Sarah|author-link3=|author-link4=|author-link5=|date=Dec 2012|title=The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy|url=https://search.informit.com.au/documentSummary;dn=119626231492520;res=IELHEA|journal=Journal of the Australasian College of Nutritional and Environmental Medicine|volume=31|issue=3|pages=3-8|quote=|via=}}</ref> The authors reported a 58% success rate at long term followup 15-20 years post-treatment, but only 12 patients (out of the original 60) were contacted at that point. Accordingly, the long-term followup results would not have been statistically significant.

That study also neglected to use any objective outcome measurements, a control group was not included, and the symptoms used to determine a successful outcome regarding "CFS symptoms" did not account for physical limitations or many other fundamental ME/CFS symptoms. It is not clear how many symptoms were measured before and after treatment, hence it cannot be determined if any results were statistically significant. Furthermore, all patients were recruited from a clinic for digestive disorders, which would suggest that they were not typical ME/CFS patients. The recruitment criteria did not require that patients have the symptom of [[post-exertional malaise]], hence the results may not be applicable to ME/CFS patients meeting more stringent criteria.

There was no study protocol published, and there is no explanation provided for the results first being published as a full paper fifteen years after the initial treatments took place. A conference poster abstract from 1995 indicates that other symptoms were tested at an earlier followup,<ref>{{Cite journal|last=Borody|first=TJ|author-link=|author-link2=|author-link3=|author-link4=|author-link5=|date=1995|title=Bacteriotherapy for Chronic Fatigue Syndrome – A long-term follow-up study|url=|journal=Proceedings of ACMA Complementary Medicine Sydney 1995|volume=|issue=|pages=|quote=|via=}}</ref> but those symptoms are not reported or discussed in the 2012 long-term followup, which may indicate that the treatment was less successful than reported. The poster abstract does not appear to have been published, and the full long-term followup was published in an obscure online journal with no apparent peer review process.

This study has not been replicated, and no other studies for FMT and ME/CFS have been conducted. Accordingly, the existing evidence base in favor of this therapy is very weak.

==Research studies==
*2012, The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy<ref name=":1" />
*2013, High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients<ref>{{Cite journal|last=Frémont|first=Marc|author-link=|last2=Coomans|first2=Danny|author-link2=|last3=Massart|first3=Sebastien|author-link3=|last4=De Meirleir|first4=Kenny|author-link4=Kenny De Meirleir|author-link5=|date=Aug 2013|title=High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients|url=https://linkinghub.elsevier.com/retrieve/pii/S1075996413000929|journal=Anaerobe|language=en|volume=22|issue=|pages=50–56|doi=10.1016/j.anaerobe.2013.06.002|quote=|via=}}</ref>
*2016, Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders<ref>{{Cite journal|last=Evrensel|first=Alper|last2=Ceylan|first2=Mehmet Emin|date=2016-08-31|title=Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders|url=http://www.cpn.or.kr/journal/view.html?doi=10.9758/cpn.2016.14.3.231|journal=Clinical Psychopharmacology and Neuroscience|language=en|volume=14|issue=3|pages=231–237|doi=10.9758/cpn.2016.14.3.231|issn=1738-1088}}</ref>

==See also==
*[[Microbiome]]
==Learn more==
*[https://designershitdocumentary.com/ Designer Shit] – a documentary about FMT scheduled for release sometime in 2019
*[http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf Home Infusion Protocol] published by [[Sarah Myhill]]
*[https://www.idsociety.org/FMT/ Infectious Diseases Society of America Information about FDA regulations re: FMT]
*[http://thefecaltransplantfoundation.org/what-is-fecal-transplant/ The Fecal Transplant Foundation]

==References==
<references />

[[Category:Potential treatments]]
[[Category:Probiotics]]

Two-day cardiopulmonary exercise test

2019-06-14T13:29:51Z

EscapeTheFog:/* Cost and availability */ Link to internal Open Medicine Institute page

[[File:CPET.jpg|alt=Photo of a woman walking on a treadmill while wearing a clear mask over her nose and mouth, and attached to a cart holding medical equipment.|thumb|350x350px|Cardiopulmonary Exercise Test]]
'''Two-day cardiopulmonary exercise test''' or '''2-day CPET''' is an accepted, reliable test for [[post-exertional malaise]] (PEM), one of the cardinal symptoms that distinguishes individuals with and without [[ME/CFS]].<ref name="Davenport, 2011" /> The hypothesis is that ME/CFS patients are almost unique in having a severe deterioration in the second of the two cardiopulmonary exercise tests performed on consecutive days.<ref>Logan, Russell. 2-Day CPET: A gold standard test for ME fatigue. (24 Sept 2014). ''Shoutout About ME'' blog. Retrieved from http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/</ref>

The cardiopulmonary exercise test (CPET) is the same non-invasive test given to measure the fitness levels of athletes, as well as people with cardiopulmonary illness.<ref>{{Cite journal|last=Albouaini|first=Khaled|last2=Egred|first2=Mohaned|last3=Alahmar|first3=Albert|last4=Wright|first4=David Justin|date=1 Nov 2007|title=Cardiopulmonary exercise testing and its application|url=https://pmj.bmj.com/content/83/985/675|journal=Postgraduate Medical Journal|language=en|volume=83|issue=985|pages=675–682|doi=10.1136/hrt.2007.121558|issn=0032-5473|pmc=|pmid=17890705|via=}}</ref> However, if the test is repeated 24 hours later, ME/CFS patients will fare significantly worst than they did on the first day. The [[Institute of Medicine report]] states that: "ME/CFS patients have significantly lower results on CPET [day] 2 than on CPET [day] 1 on one or more of the following parameters: VO2max (Keller et al., 2014; VanNess et al., 2007; Vermeulen et al., 2010),<ref>{{Cite journal|last=Vermeulen|first=Ruud CW|last2=Kurk|first2=Ruud M|last3=Visser|first3=Frans C|last4=Sluiter|first4=Wim|last5=Scholte|first5=Hans R|date=2010|title=Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity|url=http://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-8-93|journal=Journal of Translational Medicine|language=En|volume=8|issue=1|pages=93|doi=10.1186/1479-5876-8-93|issn=1479-5876|pmc=|pmid=20937116|via=}}</ref> VO2 at ventilatory threshold (Keller et al., 2014), and maximal workload or workload at ventilatory threshold (Keller et al., 2014; Snell et al., 2013)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

Although the Institute of Medicine report states that 2-day CPET is very reliable to objectively measure [[PEM]], the [[IOM]] committee emphasized "that the CPET is not required to diagnose patients with ME/CFS. Further, this test carries substantial risk for these patients as it may worsen their condition ([[Jo Nijs|Nijs]] et al., 2010; [[Mark VanNess|VanNess]] et al., 2010)."<ref>Chapter 4, Review of the Evidence on Major ME/CFS Symptoms and Manifestations." Institute of Medicine. ''Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.'' Washington, DC: The National Academies Press, 2015. doi:10.17226/19012. Retrieved from http://www.nap.edu/read/19012/chapter/6?term=CPET#83</ref>

==Evidence==
[[Mark VanNess]], [[Christopher Snell]] and [[Staci Stevens]] of the University of the Pacific, were the first to study the two-day CPET procedure in patients with ME/CFS. In a 2007 study published in the [[Journal of Chronic Fatigue Syndrome]], they compared six ME/CFS patients with six controls. At the first CPET there were no major differences between the two groups. At the second CPET however, ME/CFS patients reached significantly lower peak [[oxygen]] consumption and oxygen consumption at aerobic threshold.<ref>{{Cite journal|last=Vanness|first=J. Mark|last2=Snell|first2=Christopher R.|last3=Stevens|first3=Staci R.|date=Jan 2007|title=Diminished Cardiopulmonary Capacity During Post-Exertional Malaise|url=https://www.tandfonline.com/doi/abs/10.1300/J092v14n02_07|journal=Journal of Chronic Fatigue Syndrome|language=en|volume=14|issue=2|pages=77–85|doi=10.1300/j092v14n02_07|issn=1057-3321}}</ref>

In 2010 a Dutch research group including Ruud Vermeulen and [[Frans Visser]] used the 2-day CPET in a study with 15 female ME/CFS and 15 healthy controls. Patients reached the aerobic threshold and the maximal exercise at much lower oxygen consumption than controls, an effect that was magnified during the second-day exercise test. Since levels of creatinine kinase in the blood and oxidative phosphorylation in mononuclear cells were normal in patients before and after exercise, Vermeulen et al. speculated that the lowered anaerobic threshold was not so much a result of [[Mitochondria|mitochondrial]] insufficiency, but of impaired oxygen transport to the [[Muscle|muscles]].<ref>{{Cite journal|last=Vermeulen|first=Ruud C. W.|last2=Kurk|first2=Ruud M.|last3=Visser|first3=Frans C.|last4=Sluiter|first4=Wim|last5=Scholte|first5=Hans R.|date=2010-10-11|title=Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity|url=https://www.ncbi.nlm.nih.gov/pubmed/20937116|journal=Journal of Translational Medicine|volume=8|pages=93|doi=10.1186/1479-5876-8-93|issn=1479-5876|pmc=2964609|pmid=20937116}}</ref>

In 2013 [[Christopher Snell|Snell]], [[Staci Stevens|Stevens]] and [[Mark VanNess|VanNess]] tested the 2-day CPET procedure in a larger sample of 51 ME/CFS patients and 10 heathy controls. Once again, there were no sufficient differences between the groups at the first CPET. During the exercise test on the second day however, ME/CFS patients showed much lower oxygen consumption and workload at peak exercise and at aerobic threshold. Group differences were not due to lack of effort since most participants attained the ventilatory threshold and achieved a respiratory exchange ratio of greater than or equal to 1.1.<ref name=":0">{{Cite journal|last=Snell|first=C. R.|last2=Stevens|first2=S. R.|last3=Davenport|first3=T. E.|last4=Van Ness|first4=J. M.|date=2013-06-27|title=Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome|url=https://academic.oup.com/ptj/article/93/11/1484/2735315|journal=Physical Therapy|language=en|volume=93|issue=11|pages=1484–1492|doi=10.2522/ptj.20110368|issn=0031-9023}}</ref>

In 2014 the research group of Betsy Keller used the 2-day CPET protocol in a study involving 22 ME/CVS patient. A decline on several physiological measures was found (see table), while the respiratory exchange ratio indicated maximum efforts by participants during both exercise tests.<ref name=":1">{{Cite journal|last=Keller|first=Betsy A.|last2=Pryor|first2=John Luke|last3=Giloteaux|first3=Ludovic|date=2014-04-23|title=Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment|url=https://www.ncbi.nlm.nih.gov/pubmed/24755065|journal=Journal of Translational Medicine|volume=12|pages=104|doi=10.1186/1479-5876-12-104|issn=1479-5876|pmc=4004422|pmid=24755065}}</ref>

This group followed this research up with a study of a single pair of monozygotic twins in 2016.<ref>{{Cite journal|title=A Pair of Identical Twins Discordant for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Differ in Physiological Parameters and Gut Microbiome Composition|url=http://www.amjcaserep.com/abstract/index/idArt/900314|journal=American Journal of Case Reports|date=2016-10-10|issn=1941-5923|pmc=PMC5058431|pmid=27721367|pages=720–729|volume=17|doi=10.12659/AJCR.900314|language=en|first=Ludovic|last=Giloteaux|first2=Maureen R.|last2=Hanson|first3=Betsy A.|last3=Keller}}</ref>
{| class="wikitable"
! colspan="8" |Physiological changes between first and second exercise test during 2-day CPET procedure in patients with ME/CFS
|-
|
|Number of ME/CFS patients
|VO2 peak
|VO2 at VT
|Workload peak
|Workload at VT
|HR peak
|O2pulse at VT
|-
|VanNess et al. 2007.
|6
|'''-22%'''
|'''-26%'''
|?
|?
|?
|?
|-
|Vemeulen et al. 2010.
|15
|'''-6.3%'''
|'''-7.0%'''
|'''-5.3%'''
|'''-7.0%'''
|<nowiki>-1.9%</nowiki>
|'''-8.8%'''
|-
|Snell et al. 2013.
|51
| -5%
|'''-10.8%'''
|'''-7.2%'''
|'''-55.2%'''
|?
|?
|-
|Keller et al. 2014.
|22
|'''-13.8%'''
|'''-15.8%'''
|'''-12.5%'''
|'''-21.3%'''
|'''-5.9%'''
|'''-12.6%'''
|-
|Giloteaux et al. 2016.
|1 (monozygotic twin)
|0%
| -13.4%
|0%
| -25%
| +7.4%
|?
|-
|Hodges et al. 2017.
|10
|<nowiki>+5.3%</nowiki>
|<nowiki>+6.1%</nowiki>
|<nowiki>-6.7%</nowiki>
|'''-11.4%'''
|<nowiki>-0.6%</nowiki>
|?
|-
|Nelson et al. 2019.
|16
| +0.4%
| -3.1%
| -1.2%
|'''-17.4%'''
| -0.5%
|?
|-
|Lien et al. 2019.
|18
|?
|?
|?
|'''?'''
|?
|?
|}
In 2017, a research team form [[New Zealand]] compared the physiological responses during a 2-day CPET, in ten patients with ME/CFS, seven patients with [[Multiple sclerosis|MS]] and seventeen healthy controls. Curiously peak oxygen increased at the second exercise test in ME/CFS patients, but there was a significant reduction noticeable in workload at aerobic threshold, a decline that was not seen in MS-patients or healthy controls. According to the authors: <blockquote>“differences between MS and CFS/ME responses only became evident after a second maximal exercise test, thus suggesting that a repeated protocol is required to not only distinguish CFS/ME from HC, but also from other fatigue-related conditions, who may not suffer from postexertional malaise and have a differing delayed fatigue profile.”<ref>{{Cite journal|last=Hodges|first=L. D.|last2=Nielsen|first2=T.|last3=Baken|first3=D.|date=Jul 2018|title=Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study|url=https://www.ncbi.nlm.nih.gov/pubmed/28782878|journal=Clinical Physiology and Functional Imaging|volume=38|issue=4|pages=639–644|doi=10.1111/cpf.12460|issn=1475-097X|pmid=28782878}}</ref></blockquote>In a 2019 the 2-day CPET procedure was tested by an Australian research team of Nelson and colleagues. They found a significant larger reduction in workload at the ventilatory treshold in patients with ME/CFS compared to healthy controls. A percentage change of −6.3% to −9.8% provided good sensitivity and specificity, indicating this test has the potential to become a biomarker for ME/CFS. However, the sample size of this study was small (16 ME/CFS paitients), the control group consisted only of healthy persons (instead of patients with other chronic illnesses) and no significant difference was found in VO2 at the ventilatory threshold.<ref>{{Cite journal|last=Nelson|first=Maximillian J.|last2=Buckley|first2=Jonathan D.|last3=Thomson|first3=Rebecca L.|last4=Clark|first4=Daniel|last5=Kwiatek|first5=Richard|last6=Davison|first6=Kade|date=2019-03-14|title=Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=https://doi.org/10.1186/s12967-019-1836-0|journal=Journal of Translational Medicine|volume=17|issue=1|pages=80|doi=10.1186/s12967-019-1836-0|issn=1479-5876|pmc=PMC6417168|pmid=30871578}}</ref>

A small Norwegian study also reported a significant larger reduction in workload at the ventilatory treshold in 18 patients with ME/CFS compared to healthy controls, although this was not the case for peak values or VO2 measurement at the ventilatory threshold. The authors also measured arterial lactate concentrations, every 30 seconds during the exercise tests. Lactate was higher per power output per kg in patients than controls and the differences increased significantly at the second exercise test. In the healthy controls lactate concentration at the ventilatory threshold decreased while this was not the case in ME/CFS patients,suggesting a problem in lactate clearance ability.<ref>{{Cite journal|last=Lien|first=Katarina|last2=Johansen|first2=Bjørn|last3=Veierød|first3=Marit B.|last4=Haslestad|first4=Annicke S.|last5=Bøhn|first5=Siv K.|last6=Melsom|first6=Morten N.|last7=Kardel|first7=Kristin R.|last8=Iversen|first8=Per O.|date=2019|title=Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome|url=https://physoc.onlinelibrary.wiley.com/doi/abs/10.14814/phy2.14138|journal=Physiological Reports|language=en|volume=7|issue=11|pages=e14138|doi=10.14814/phy2.14138|issn=2051-817X}}</ref>

Unpublished studies have reported negative results for the repeated CPET procedure. A thesis<ref>Nielsen TM. [https://mro.massey.ac.nz/bitstream/handle/10179/14653/02_whole.pdf?sequence=2&isAllowed=y The Timeline of Post Exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2018.]</ref> by Nielsen TM at the Massey University, New-Zealand, performed the second exercise test 48 hours and 72 hours later, instead of the usual 24 hours. The study did not find significant reductions of workload at the ventilatory threshold in ME/CFS patients compared to controls. The 8 ME/CFS patients in the 72 hours group had a workload at ventilatory threshold that was slightly higher instead of lower than during the first test. In a 2018 presentation<ref>[https://www.youtube.com/watch?v=xpyz9K62Izg Presentation Ruud Vermeulen (03-06-2018). Minute 34.00.]</ref> Ruud Vermeulen reported to have data on approximately 500 ME/CFS patients who performed the repeated CPET procedure and that the second test did not show any significant difference compared to the first. It is unclear which outcome measures Vermeulen was referring to.

== Use as a Biomarker ==
[[Christopher Snell|Snell]] et al. suggested 2-day CPET could be used "diagnostically as an objective indicator of an abnormal postexertion response and possibly even a [[Diagnostic biomarker|biomarker]] for the condition"<ref name=":0" />. Using the data from the two exercise tests, their research team was able to correctly classify 95% of the total sample, as a patient or healthy control.

While a unique reduction in physiological capacity was observed in ME/CFS by several studies and different research groups, sample sizes were rather small and disagreement exists on which physiological measure accurately displayed ME/CFS patients’ [[Post-exertional malaise|abnormal exertional response]].<ref name=":1" />

Another objection to the 2-day CPET as a biomarker for ME/CFS was raised by Snell et al themselves. They suggested it might be unethical<ref name=":0" /> to use this method to detect ME/CFS patients since many of these patients might suffer relapse as a result of exercise testing. In their 2010 study, 60% of ME/CFS patients reported that it took them more than 5 days to recover from a single (maximal) CPET. It is therefore possible that in some ME/CFS patients a 2-day CPET might cause a long-lasting relapse. Science-reporter and ME/CFS patient [[Simon McGrath]] for example wrote: “You couldn’t pay me enough money to take even one max test. My last relapse, which took me nearly 2 years to get over, happened after way less than maximal [[exertion]] – a 2-day test is not for everyone."<ref>{{Cite news|url=https://www.healthrising.org/blog/2014/05/20/declining-production-exercise-study-reveal-broad-decline-energy-output-chronic-fatigue-syndrome/|title=Declining Production: Exercise Study Reveals Broad Declines in Energy Output in Chronic Fatigue Syndrome - Health Rising|date=2014-05-20|work=Health Rising|access-date=2018-08-17|language=en-US}}</ref>

Others have noted that the CPET-procedure is not very practical. It cannot be used in patients with severe ME/CFS (thus excluding these patients from study) and because of cost and expertise, it may not be available to most clinicians.<ref>https://www.commondataelements.ninds.nih.gov/Doc/MECFS/03_Fatigue_Subgroup_CDE_Draft_Recommendations.pdf</ref> CPET for ME/CFS is usually not covered by insurance and can cost hundreds of dollars.<ref>{{Cite journal|last=Cotler|first=Joseph|last2=Holtzman|first2=Carly|last3=Dudun|first3=Catherine|last4=Jason|first4=Leonard A.|date=2018-09-11|title=A Brief Questionnaire to Assess Post-Exertional Malaise|url=https://www.ncbi.nlm.nih.gov/pubmed/30208578|journal=Diagnostics (Basel, Switzerland)|volume=8|issue=3|doi=10.3390/diagnostics8030066|issn=2075-4418|pmid=30208578}}</ref> For these reasons PEM is commmonly assessed using self-reporting questionnaires.

[[Brian Vastag]] was able to prove his PEM was a severe symptom causing disability with CPET winning his long term disability (LTD) claim.<ref name=":02">{{Cite web|url=https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/|title=Victory for ME Disability Claim - U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability|last=Tillman|first=Adriane|authorlink=|last2=|first2=|authorlink2=|date=2018-06-04|website=#MEAction|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2019-02-02}}</ref>

==Cost and availability==
*[[Workwell Foundation]] (United States, CA)
*[[Betsy Keller]] at Ithaca College (United States, NY) Cost is $2200. Because they are based in a college setting (not healthcare setting), they cannot process insurance (including Medicare or Medicaid), so the patient would need to work directly with their insurer about reimbursement. (private email)
*[[Laura Black]] at Hunter-Hopkins Center, Charlotte, NC
*[[Open Medicine Institute]] Clinic
*[http://physiologic.com.au/ Physiologic 334 Scottsdale Drive, Robina, Gold Coast, Australia]
*[https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/ Many UK universities] offer standard CPETs which can be adapted for patients with ME.

==Talks and interviews==
*2013, [https://www.youtube.com/watch?v=fHulHdMPAd4 CPET Presentation by Dr. Christopher Snell, Part I][https://www.youtube.com/watch?v=piUDax7I-Ek CPET Presentation by Dr. Christopher Snell, Part II]
*2014, [https://www.youtube.com/watch?v=q_cnva7zyKM&feature=youtu.be Mark VanNess 'Exercise and ME/CFS' at Bristol Watershed. Part One]

==See also==

*[[Betsy Keller]]
*[[Christopher Snell]]
*[[Staci Stevens]]
*[[Mark VanNess]]
*[[Brian Vastag]]
*[[Exercise]]
*[[Post-exertional malaise]]
==Learn more==

*[http://www.workwellfoundation.org/testing-for-disability/ The Workwell Foundation: Testing for Disability]
*2007, [http://www.name-us.org/MECFSExplainPages/2007CiccolellaLegalStressTest.pdf Legal and Scientific Considerations of the Exercise Stress Test]
*2013, [http://www.cortjohnson.org/blog/2013/07/30/busted-exercise-study-finds-energy-production-system-is-broken-in-chronic-fatigue-syndrome/ Busted! Exercise Study Finds Energy Production System is Broken in Chronic Fatigue Syndrome]
*2013, [http://phoenixrising.me/archives/17902/ Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity]
*2018, [https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/ Victory For ME Disability Claim – U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability]<ref>{{Cite web|url=https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/|title=Victory for ME Disability Claim - U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability|last=Tillman|first=Adrienne|authorlink=|last2=|first2=|authorlink2=|date=2018-06-04|website=#MEAction|language=en-US|archive-url=|archive-date=|dead-url=|access-date=2019-02-02}}</ref>
*2019, [https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/ Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS)] by C. Christian

==References==
<references>
<ref name="Davenport, 2011">{{Citation
| last1 = Davenport | first1 = Todd E. | authorlink1 = Todd Davenport
| last2 = Stevens | first2 = Staci R. | authorlink2 = Staci Stevens
| last3 = Baroni | first3 = K | authorlink3 =
| last4 = Vanness | first4 = J. Mark | authorlink4 = Mark VanNess
| last5 = Snell | first5 = Christopher R. | authorlink5 = Christopher Snell
| title = Diagnostic accuracy of symptoms characterizing chronic fatigue syndrome
| journal = Disabil Rehabil | volume = 33 | issue = 19-20 | page = 1768-75
| date = 2011
| pmid = 21208154
| doi = 10.3109/09638288.2010.546936
}}
</ref>
</references>
[[Category:Medical tests]]
[[Category:Cardiology]]

User talk:Virgo91367

2019-06-13T23:41:16Z

EscapeTheFog:Welcome

{{Template:Welcome|realName=Giselle Perdomo|name=Virgo91367}}

-- [[User:New user message|New user message]] ([[User talk:New user message|talk]]) 17:02, June 13, 2019 (EDT)

== Welcome ==
Glad you joined us! -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 19:41, June 13, 2019 (EDT)

User:EscapeTheFog

2019-06-13T06:06:41Z

EscapeTheFog:/* Meta Topics on me-pedia */

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]
* [[Photophobia]]
* [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome]], and [[ME/CFS]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* [[Brain fog|Brain Fog]]
* [[Azithromycin]]
* [[Clarithromycin]]
* [[Rifampicin]]
* [[Metronidazole]]
* [[Neomycin]]

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020

MEpedia talk:Manual of style

2019-06-13T06:06:12Z

EscapeTheFog:Fix heading

Questions about the Manual of Style? Add them here!

== Citations Guideline? ==
I notice that under "Learn more" there is "Citations Guideline to come".
 Is someone still planning on writing a Citations Guideline or is this something that can be removed?
 Thanks.
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:21, 14 March 2019 (EDT)
: I have removed that line. If anyone writes a “Citations guideline”, please put it back. Thanks.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)

== Dates ==
I am a bit confused about the “Dates” section. Are we supposed to use the three-letter abbreviation for months, or can we spell out the full month?
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)
:One consideration is refs: I think some templates will spit out an error message if you only use the first three leters? So that might be a reason to go with the full name, if we'd like to standardize this. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:13, 15 April 2019 (EDT)
::Three letter months eg Jun is what I've been doing, I think that may already be the standard. Templates give errors for DD MMM YYY and YYYY-MM but not MMM DD, YYYY - or MMM YYYY - which is our standard. I tried to improve the help information that comes up with date errors a while ago. I don't know why but the citation generator comes up with the wrong date styles. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:34, 15 April 2019 (EDT)
:::This is all new to me. I’ve seen [[User:Kmdenmark]] fixing “CS1” errors but I don’t know exactly what these errors are. Do we know which templates tend to spit out errors? Thanks.
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:16, 15 April 2019 (EDT)

:::: Here is a helpful Wikipedia link to CS1 errors for dates: https://en.wikipedia.org/wiki/Help:CS1_errors#ExamplesOfUnacceptableDates
:::: The most frequent error that our citation generator makes is "Ambiguous date range or year and month." E.g., it will generate a date as such: |date=2002-03. The computer doesn't know if you mean Mar 2002 or the years 2002-2003. The easiest correction is to change it to Mar 2002 or March 2002. You don't need to abbreviate the month, but if you do, the program wants a 3-letter abbreviation.
:::: The second most common date error is when the contributor uses the wrong punctuation. E.g., February 28 1900 will read as an error bec it has no comma; it must be changed to February 28, 1900 or 28 February 1900 or Feb 28, 1900 or 1900-02-28. Use of slashes also elicits an error message. E.g., 12/6/87 must be changed to December 6, 1987 or Dec 6, 1987 or 1987-12-06.
:::: I hope that helps. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 12:03, 16 April 2019 (EDT)
:::That’s very helpful, Karen! Thanks! Now we need to incorporate this into the documentation somewhere. (And clarify how dates are to be formatted in the body of the text, too.)
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:58, 16 April 2019 (EDT)
:::::Existing help info on dates when you click the ? icon brings up [[Help:CS1_errors]], see [[Help:CS1_errors#Check_date_values_in:_.7C.3Cparam1.3E.3D.2C_.7C.3Cparam2.3E.3D.2C_... here]] and [[MEpedia:Manual_of_style#Dates]] for some documentation. I've requested that developers look into if the American date setting is on, I am not sure but it's possible that this might fix the date generation formatting issues. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:26, 16 April 2019 (EDT)
::::::That’s very helpful too, Njt! Thanks! It would certainly be nice if we could solve some of the problems just by fixing a date setting!
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:49, 16 April 2019 (EDT)
:::::::I don't know if that date setting will help - it seems odd that there aren't any mentions of this problem for others. Something else I would like to sort is the automatic PMCc references that sometimes put "PMCPMC" or just "PMC" before the number, which breaks the links. It may need Lua changes to the Module though. Do you know about Lua? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:25, 26 April 2019 (EDT)
==Referencing chapters and referencing different pages ==
''Discussion moved from Canadian Consensus Criteria talk page '' by [[User:Notjusttired]]
Is an alternative way of referencing many chapters or may pages from the same source needed, maybe a new template?
Options seem to be using [[Template:Sfn]] or [https://en.wikipedia.org/wiki/Template:Rp Template:Rp] (not installed yet). I don't see anything in the [[Manual of style]] to say if we have a standard for this at the moment. I prefer using <nowiki ><ref name="ICC" />'''{{Rp|pages=13-19}}'''</nowiki > or <nowiki >{{Rp|at=Ch6}}</nowiki > since it displays in the article as [2]''':13-19''' for pages, or [2]:'''Ch6''' (or whatever you choose for chapters).
Thoughts? Tagging others to ask. [[User:JaimeS]] [[User:MEandCFS]] [[User:Canele]] [[User:Pyrrhus]] [[User:DxCFS]] [[User:Hip]] [[User:Brettz9]] [[User:Kmdenmark]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:11, 19 April 2019 (EDT)
:This solution seems perfect and actually is something I had looked for and failed to find on WP! So thank you! It's much cleaner and more amenable to editor re-use than other options I'm aware of. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:09, 19 April 2019 (EDT)
::Which solution? The Rp template? If so, this needs adding to the Manual of style and MEpedia or Help documentation. I have been going through the Wanted Pages - many of which come from links in the Citation templates - to work out which are worth covering here, and which can just straight links to Wikipedia explanations. Going to move this discussion to [[MEpedia_talk:Manual_of_style MOS talk page]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:02, 26 April 2019 (EDT)

== Where to attach citations? ==

Suppose several consecutive sentences have facts pulled from a single source. Should each sentence have the citation/footnote attached at the end, just the first, or just the last? I assume we're using a citation style that's consistent with wikipedia, or some other external resource. Maybe we should link to that for the details? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT)

MEpedia talk:Manual of style

2019-06-13T06:05:47Z

EscapeTheFog:remove extraneous signature

Questions about the Manual of Style? Add them here!

== Citations Guideline? ==
I notice that under "Learn more" there is "Citations Guideline to come".
 Is someone still planning on writing a Citations Guideline or is this something that can be removed?
 Thanks.
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:21, 14 March 2019 (EDT)
: I have removed that line. If anyone writes a “Citations guideline”, please put it back. Thanks.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)

== Dates ==
I am a bit confused about the “Dates” section. Are we supposed to use the three-letter abbreviation for months, or can we spell out the full month?
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)
:One consideration is refs: I think some templates will spit out an error message if you only use the first three leters? So that might be a reason to go with the full name, if we'd like to standardize this. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:13, 15 April 2019 (EDT)
::Three letter months eg Jun is what I've been doing, I think that may already be the standard. Templates give errors for DD MMM YYY and YYYY-MM but not MMM DD, YYYY - or MMM YYYY - which is our standard. I tried to improve the help information that comes up with date errors a while ago. I don't know why but the citation generator comes up with the wrong date styles. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:34, 15 April 2019 (EDT)
:::This is all new to me. I’ve seen [[User:Kmdenmark]] fixing “CS1” errors but I don’t know exactly what these errors are. Do we know which templates tend to spit out errors? Thanks.
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:16, 15 April 2019 (EDT)

:::: Here is a helpful Wikipedia link to CS1 errors for dates: https://en.wikipedia.org/wiki/Help:CS1_errors#ExamplesOfUnacceptableDates
:::: The most frequent error that our citation generator makes is "Ambiguous date range or year and month." E.g., it will generate a date as such: |date=2002-03. The computer doesn't know if you mean Mar 2002 or the years 2002-2003. The easiest correction is to change it to Mar 2002 or March 2002. You don't need to abbreviate the month, but if you do, the program wants a 3-letter abbreviation.
:::: The second most common date error is when the contributor uses the wrong punctuation. E.g., February 28 1900 will read as an error bec it has no comma; it must be changed to February 28, 1900 or 28 February 1900 or Feb 28, 1900 or 1900-02-28. Use of slashes also elicits an error message. E.g., 12/6/87 must be changed to December 6, 1987 or Dec 6, 1987 or 1987-12-06.
:::: I hope that helps. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 12:03, 16 April 2019 (EDT)
:::That’s very helpful, Karen! Thanks! Now we need to incorporate this into the documentation somewhere. (And clarify how dates are to be formatted in the body of the text, too.)
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:58, 16 April 2019 (EDT)
:::::Existing help info on dates when you click the ? icon brings up [[Help:CS1_errors]], see [[Help:CS1_errors#Check_date_values_in:_.7C.3Cparam1.3E.3D.2C_.7C.3Cparam2.3E.3D.2C_... here]] and [[MEpedia:Manual_of_style#Dates]] for some documentation. I've requested that developers look into if the American date setting is on, I am not sure but it's possible that this might fix the date generation formatting issues. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:26, 16 April 2019 (EDT)
::::::That’s very helpful too, Njt! Thanks! It would certainly be nice if we could solve some of the problems just by fixing a date setting!
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:49, 16 April 2019 (EDT)
:::::::I don't know if that date setting will help - it seems odd that there aren't any mentions of this problem for others. Something else I would like to sort is the automatic PMCc references that sometimes put "PMCPMC" or just "PMC" before the number, which breaks the links. It may need Lua changes to the Module though. Do you know about Lua? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:25, 26 April 2019 (EDT)
==Referencing chapters and referencing different pages ==
''Discussion moved from Canadian Consensus Criteria talk page '' by [[User:Notjusttired]]
Is an alternative way of referencing many chapters or may pages from the same source needed, maybe a new template?
Options seem to be using [[Template:Sfn]] or [https://en.wikipedia.org/wiki/Template:Rp Template:Rp] (not installed yet). I don't see anything in the [[Manual of style]] to say if we have a standard for this at the moment. I prefer using <nowiki ><ref name="ICC" />'''{{Rp|pages=13-19}}'''</nowiki > or <nowiki >{{Rp|at=Ch6}}</nowiki > since it displays in the article as [2]''':13-19''' for pages, or [2]:'''Ch6''' (or whatever you choose for chapters).
Thoughts? Tagging others to ask. [[User:JaimeS]] [[User:MEandCFS]] [[User:Canele]] [[User:Pyrrhus]] [[User:DxCFS]] [[User:Hip]] [[User:Brettz9]] [[User:Kmdenmark]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:11, 19 April 2019 (EDT)
:This solution seems perfect and actually is something I had looked for and failed to find on WP! So thank you! It's much cleaner and more amenable to editor re-use than other options I'm aware of. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:09, 19 April 2019 (EDT)
::Which solution? The Rp template? If so, this needs adding to the Manual of style and MEpedia or Help documentation. I have been going through the Wanted Pages - many of which come from links in the Citation templates - to work out which are worth covering here, and which can just straight links to Wikipedia explanations. Going to move this discussion to [[MEpedia_talk:Manual_of_style MOS talk page]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:02, 26 April 2019 (EDT)

== Where to attach citations?

Suppose several consecutive sentences have facts pulled from a single source. Should each sentence have the citation/footnote attached at the end, just the first, or just the last? I assume we're using a citation style that's consistent with wikipedia, or some other external resource. Maybe we should link to that for the details? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT)

MEpedia talk:Manual of style

2019-06-13T06:05:07Z

EscapeTheFog:/* Where to attach citations? -- ~~~~ */ new section

Questions about the Manual of Style? Add them here!

== Citations Guideline? ==
I notice that under "Learn more" there is "Citations Guideline to come".
 Is someone still planning on writing a Citations Guideline or is this something that can be removed?
 Thanks.
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:21, 14 March 2019 (EDT)
: I have removed that line. If anyone writes a “Citations guideline”, please put it back. Thanks.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)

== Dates ==
I am a bit confused about the “Dates” section. Are we supposed to use the three-letter abbreviation for months, or can we spell out the full month?
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 18:03, 15 April 2019 (EDT)
:One consideration is refs: I think some templates will spit out an error message if you only use the first three leters? So that might be a reason to go with the full name, if we'd like to standardize this. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:13, 15 April 2019 (EDT)
::Three letter months eg Jun is what I've been doing, I think that may already be the standard. Templates give errors for DD MMM YYY and YYYY-MM but not MMM DD, YYYY - or MMM YYYY - which is our standard. I tried to improve the help information that comes up with date errors a while ago. I don't know why but the citation generator comes up with the wrong date styles. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:34, 15 April 2019 (EDT)
:::This is all new to me. I’ve seen [[User:Kmdenmark]] fixing “CS1” errors but I don’t know exactly what these errors are. Do we know which templates tend to spit out errors? Thanks.
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:16, 15 April 2019 (EDT)

:::: Here is a helpful Wikipedia link to CS1 errors for dates: https://en.wikipedia.org/wiki/Help:CS1_errors#ExamplesOfUnacceptableDates
:::: The most frequent error that our citation generator makes is "Ambiguous date range or year and month." E.g., it will generate a date as such: |date=2002-03. The computer doesn't know if you mean Mar 2002 or the years 2002-2003. The easiest correction is to change it to Mar 2002 or March 2002. You don't need to abbreviate the month, but if you do, the program wants a 3-letter abbreviation.
:::: The second most common date error is when the contributor uses the wrong punctuation. E.g., February 28 1900 will read as an error bec it has no comma; it must be changed to February 28, 1900 or 28 February 1900 or Feb 28, 1900 or 1900-02-28. Use of slashes also elicits an error message. E.g., 12/6/87 must be changed to December 6, 1987 or Dec 6, 1987 or 1987-12-06.
:::: I hope that helps. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 12:03, 16 April 2019 (EDT)
:::That’s very helpful, Karen! Thanks! Now we need to incorporate this into the documentation somewhere. (And clarify how dates are to be formatted in the body of the text, too.)
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:58, 16 April 2019 (EDT)
:::::Existing help info on dates when you click the ? icon brings up [[Help:CS1_errors]], see [[Help:CS1_errors#Check_date_values_in:_.7C.3Cparam1.3E.3D.2C_.7C.3Cparam2.3E.3D.2C_... here]] and [[MEpedia:Manual_of_style#Dates]] for some documentation. I've requested that developers look into if the American date setting is on, I am not sure but it's possible that this might fix the date generation formatting issues. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:26, 16 April 2019 (EDT)
::::::That’s very helpful too, Njt! Thanks! It would certainly be nice if we could solve some of the problems just by fixing a date setting!
::::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 13:49, 16 April 2019 (EDT)
:::::::I don't know if that date setting will help - it seems odd that there aren't any mentions of this problem for others. Something else I would like to sort is the automatic PMCc references that sometimes put "PMCPMC" or just "PMC" before the number, which breaks the links. It may need Lua changes to the Module though. Do you know about Lua? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:25, 26 April 2019 (EDT)
==Referencing chapters and referencing different pages ==
''Discussion moved from Canadian Consensus Criteria talk page '' by [[User:Notjusttired]]
Is an alternative way of referencing many chapters or may pages from the same source needed, maybe a new template?
Options seem to be using [[Template:Sfn]] or [https://en.wikipedia.org/wiki/Template:Rp Template:Rp] (not installed yet). I don't see anything in the [[Manual of style]] to say if we have a standard for this at the moment. I prefer using <nowiki ><ref name="ICC" />'''{{Rp|pages=13-19}}'''</nowiki > or <nowiki >{{Rp|at=Ch6}}</nowiki > since it displays in the article as [2]''':13-19''' for pages, or [2]:'''Ch6''' (or whatever you choose for chapters).
Thoughts? Tagging others to ask. [[User:JaimeS]] [[User:MEandCFS]] [[User:Canele]] [[User:Pyrrhus]] [[User:DxCFS]] [[User:Hip]] [[User:Brettz9]] [[User:Kmdenmark]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:11, 19 April 2019 (EDT)
:This solution seems perfect and actually is something I had looked for and failed to find on WP! So thank you! It's much cleaner and more amenable to editor re-use than other options I'm aware of. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:09, 19 April 2019 (EDT)
::Which solution? The Rp template? If so, this needs adding to the Manual of style and MEpedia or Help documentation. I have been going through the Wanted Pages - many of which come from links in the Citation templates - to work out which are worth covering here, and which can just straight links to Wikipedia explanations. Going to move this discussion to [[MEpedia_talk:Manual_of_style MOS talk page]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:02, 26 April 2019 (EDT)

== Where to attach citations? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT) ==

Suppose several consecutive sentences have facts pulled from a single source. Should each sentence have the citation/footnote attached at the end, just the first, or just the last? I assume we're using a citation style that's consistent with wikipedia, or some other external resource. Maybe we should link to that for the details? -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 02:05, June 13, 2019 (EDT)

MEpedia talk:Editorial guidelines

2019-06-13T05:57:13Z

EscapeTheFog:/* External links embedded in text */

==Redirects==
Do folks find it more helpful to keep misspelled entries as redirects to the correct name (e.g. pointing [[Zach Shan]] to [[Zack Shan]]), or delete the misspelled version? Some trade-offs:
* Deleting them means the dropdown results in the search bar will be less cluttered.
* Keeping them means if anyone makes the same misspelling in the future, they will still be guided to the correct entry. For instance, if someone created a link to [[Zach Shan]] in another entry, it would still take the reader to the correct researcher.
Here's is [https://en.wikipedia.org/wiki/Wikipedia:Redirect#Reasons_for_not_deleting Wikipedia's guidance] on this issue, but MEpedia may have different needs so I thought I'd ask for opinions. Thanks! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:11, 17 January 2019 (EST)

________________________
::I feel strongly that misspelled names are to be corrected and the misspellings deleted. Using a misspelling of a person's name is disrespectful to that person. If someone goes by more than one variation of his/her name, all of those variations should be noted with redirects to his or her main bio, e.g., Geraldine Cambridge and Jo Cambridge, or Roberto Patarca and Roberto Patarca-Montero. I can think of no needs that MEpedia could have that precludes the use of this common standard. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 21:19, 18 January 2019 (EST)
:::Misspelled names only appear when you start typing a page name - which is confusing since you don't know which to pick - or doing a full content search eg when the name you were looking for didn't come up. I tend to favor keeping redirects ''if'' searching by the mispelled name doesn't find the correct spelling. With adding links to authors by the visual editor redirects help because they connect the 2 spellings so both appear - and the icon shows which is correct. I am OK either way but would strongly suggest keeping redirects like ''Z Shan'' in order to help the visual editor find the correct author. When it comes to certain topics that are often spelled wrong redirects are a great help. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:29, 7 May 2019 (EDT)

== Rename to MEpedia:Editorial guidelines ==

Any objection if this page "Editorial Guidelines" is renamed to "MEpedia:Editorial guidelines"?
 Since this page is about the MEpedia project itself, it really should belong in the MEpedia namespace. ("MEpedia:")
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:41, 18 March 2019 (EDT)
:Let's do it. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:09, 19 March 2019 (EDT)

==Do not give advice ==

I have added this to clarify. It is especially relevant when describing treatment protocols or dose suggestions for medications. I added similar to the scientific guidelines. [[User:JaimeS]] [[User:JenB]] [[User:Kmdenmark]] [[User:Pyrrhus]] [[User:Hip]] [[User:DxCFS]] [[User:MEandCFS]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 09:56, 3 May 2019 (EDT)
:This would belong in the science guidelines, not the editorial guidelines. I'll copy this discussion over there.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 14:23, 3 May 2019 (EDT)
:: I agree wholeheartedly not to give medical advice. I feel uncomfortable with the pages that do. It can inadvertently cause harm. [[User:Kmdenmark|Kmdenmark]] ([[User talk:Kmdenmark|talk]]) 16:01, 11 May 2019 (EDT)

==Image sources ==
We have some under different licenses, which we have been able to set for some time with the upload tool. I suggest changing the wording to add ''unless otherwise stated'' since we have some fair use images, and some scientific images licensed as reuse without modified or Non-commercial reuse / No derivatives. This content wouldn't be practicable to recreate. Plus of course, so many millions missing photos. I think the editorial guidelines have been out of step with [[MEpedia copyrights]] and [[Help:Image]] for a while. [[User:JaimeS]] [[User:JenB]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:29, 7 May 2019 (EDT)

==External links embedded in text ==
I think all external links belong in references or learn more. Some articles rely heavily on many external links - including some of the most popular articles that may have been created when there was far less content to link to on here. I think the editorial policy should say internal links only in the content. Also I suggest removing Wikipedia from the article outlines given it is not acceptable in the Science guidelines. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:29, 7 May 2019 (EDT)

: I'm in favor of keeping Wikipedia links in the "Learn More" sections, in cases where the Wikipedia page is substantial. Linking to wikipedia as a companion source of information is qualitatively different from using it as a citation, in my opinion. An official ruling on this would be helpful. -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:57, June 13, 2019 (EDT)

MEpedia talk:Science guidelines

2019-06-13T05:48:44Z

EscapeTheFog:/* "if you can't cite it, you can't say it" -- EscapeTheFog (talk) 01:45, June 13, 2019 (EDT) */

== Old ideas ==

Some possible ideas to consider:

1) Quality of references: should be peer-reviewed journal articles or reputable textbooks

2) In the absence of good research, anecdotes can be cited under certain conditions (what conditions?) so long as in the text of the article, the information is not passed off as an established fact and the source of the information is clear. For example, "some clinicians have observed...." or "many patients have reported...." There still needs to be an external citation.

3) Avoid where possible citing health blogs or other third party sources for information that is considered to be scientific fact, especially where a first party source (i.e., a journal article) is available. Blogs, forums, etc. *can* on a case by case basis be reasonable sources for anecdotal or observational information.

4) Where available, always report both negative and positive results. If you do a search for, say, muscle biopses in ME patients, report both the studies that found evidence of abnormalities and studies that did not.

5) Where possible, report information about the design of a specific study or series of studies if they help the reader to grasp the quality and reliability of the findings. For example you might point out features of the design that decrease our confidence in the outcome: small sample sizes, lack of controls, open label. You might also point out information about the design that increase our confidence: randomized, double blind, large N, proper controls, finding replicated. This does not need to be done in great detail but you might say, "Several small n studies have found...." Or "A large, randomized trial found......"

--[[User:Meaction|Meaction]] ([[User talk:Meaction|talk]]) 13:41, 21 November 2015 (PST)

{{collapse top}}
== Volunteer Slack? ==

Under the "Less is more" subsection, it says "go to the Volunteer Slack".
 What is a "Volunteer Slack"???
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:31, 14 March 2019 (EDT)
:[[User:Pyrrhus|Pyrrhus]], Slack is a technology that's basically a very fancy chatroom service; you can make a Slack for a specific group and then it offers the possibility of having different, easily searchable threads for different topics. I take it there is an MEpedia Slack, although I'm not part of it and don't know the Slack's name or who to ask for an invite, so eventually we should probably try to find out how users who wish to can join (personally I don't love using it; I find it overstimulating and would rather discuss with editors here, but it's good to offer different options as different people will undoubtedly have a variety of different preferences and accessibility requirements.) Meanwhile if you want, you can check out the tech at Slack.com though; the basic service is free, you only pay for upgrades (like storage if your group has more than 10,000 messages, etc.) Poking around, I do see an MEAction Volunteers Slack (meaction.slack.com) and you can sign into it if you have an meaction.net email address. But I don't know if MEpedia has a separate one or if MEpedia is a "channel" in that one; also don't know if you have to get an meaction.net email or if possibly existing members (or especially, moderators) can add send invites to others to join the Slack, if that is the right one. So many questions! Sorry I'm probably giving more questions than answers here! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:29, 19 March 2019 (EDT)
::Thank you so much [[User:Canele|Canele]]! That is very very informative. I prefer discussing things here on MEpedia too, but we desperately need to enable communication between contributors any way we can. I'll ask around to see how I could join. Now, whom do I ask? ''That'' would be a good question for the Slack group! ;)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:12, 19 March 2019 (EDT)
:::The best bet as far as I know would be [[User:JenB]], or maybe she can suggest who best to go to with MEpedia questions if it's someone else? (I'd also love to ask about either adding to the [[MediaWiki_talk:Captcha-addurl-whitelist|CAPTCHA whitelist]] or getting set up to take of that myself, which I'd be happy to do, just don't know who best to ask for the necessary permissions.) Thanks for any guidance! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:13, 19 March 2019 (EDT)
::::I’m now in the Slack group, so if there’s anything you want me to bring up, let me know. The CAPTCHA whitelist has already been brought up. Is the only thing needed there is admin privs to edit the file? Or is the CAPTCHA whitelist more complicated than that?
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:02, 29 March 2019 (EDT)
::::::Oh, thanks so much [[User:Pyrrhus|Pyrrhus]]. Yeah as best I can tell, it's just admin permissions that's required to edit that page and then appropriate URLs only need be pasted in. As Njt has pointed out, the best would be if we could set up a user right group that automatically turned off the CAPTCHA for trusted users (discussed further here: [[MediaWiki_talk:Captcha-addurl-whitelist#Regex_for_Whitelist]]), but setting that up is beyond my personal technological capacities, so until someone who is capable has the time to take up that project, I think granting someone who is around more (you, me, whomever) permission to add to the white list would go a long way to improving accessibility. (My personal opinion would be that whomever is delegated that authority should only whitelist the most rock-solid science and reference sites. Other kinds of sites are important to include on MEpedia but I've seen a fair number of places where they're not used in accordance with [[MEpedia:Science guidelines]] and I think it maybe wise to leave the speed bump up at least for now.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::[[User:Canele]] If you wanted to join Slack's MEpedia group you can email the info meaction.net email address, on contact [[User:JaimeS]]. Some discussion goes on in the Facebook group (linked to from the MEAction website) but not much. I have recently discovered that auto confirm by email address may remove the Captcha, fixing the email feature has been flagged up since there's a new issue with it. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 18:42, 29 March 2019 (EDT)
::::::Thanks [[User:Notjusttired|Njt]] for the head's up about how to join the Slack. I may do so later; I find the tech a little overstimulating so I like discussing here where things don't move quite as rapidly. Meanwhile though, that sure would be great if eventually there were an automatic user right to disable the CAPTCHA. I suppose one thing I would say is, my ideal world would disable the CAPTCHA after a user has made a certain number of manual edits (500?) rather than just after confirming their email address, because it's so easy for spammers to dummy up an email address, confirm it, and then go to town. On a site about science, I do worry about manipulation by folks with a financial interest. But, we'll wait to see what's possible, I suppose? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::::That's a good suggestion on number of edits - could be put in the Dev queue. I would set it much lower - say 50 edits - the Captcha is easy to lookup for people so I presume it's mostly there to stop robots / automated edits. With automated edits I'm not sure how easy it is for robots to do the email confirm or if any have tried. Njt [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:14, 30 March 2019 (EDT)
::::::::Good idea, I'll add it to the dev queue! You're probably right that 50 would do the job for now. I know Wikipedia deals with folks that for-profit, not-necessarily-reliable sites are paying to go in and manually add many links to that site; I was thinking the CAPTCHA would be at least a speed bump for that. But no real reason to have it be so high until/unless that becomes an issue here. I assume once that feature is in place, it wouldn't be so hard to adjust the specific number. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:21, 30 March 2019 (EDT)

== Rename to MEpedia:Science guidelines ==

Any objection if this page "Science Guidelines" is renamed to "MEpedia:Science guidelines"?
 Since this page is about the MEpedia project itself, it really should belong in the MEpedia namespace. ("MEpedia:")
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:43, 18 March 2019 (EDT)
:I'm for it! (Again!) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 19 March 2019 (EDT)
::Done!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:04, 29 March 2019 (EDT)
{{collapse bottom}}

== Deleting "When should I cite?" ==

Any objections to deleting the "When should I cite?" instruction? I feel like it's already (and more accurately) covered in the preceding "If you can't cite it, you can't say it" instruction. Using ''Citing References in Scientific Research Papers'' makes sense for those doing primary research since original arguments/findings don't need to be cited--but here (I think) we want everything added to be referenced so that readers should be able to go check to see what verifies a given claim, rather than having to trust whichever random editor who made the change was actually correct. Right? Thoughts? (Sorry, tired, this might not be clear.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 00:38, 11 April 2019 (EDT)
:I’m not sure I understand, but I’ll tag [[User:JaimeS]] because she’s the Science Editor and she can give a definitive yes or no. As a general rule, I think we want to drill into people that everything needs to cited, even if we repeat our selves. Hope this helps.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:02, 11 April 2019 (EDT)
::Let me take another, more caffeinated crack at explaining (grin)! I'm worried that by specifying we must cite everything we get from other sources, ''Citing References...'' inadvertently implies some things don't need to be cited. Which is true for people publishing research or review studies--you don't need to cite ideas original to you--but MEpedia isn't (as I understand it) the place for folks to publish their own novel hypotheses: only things they can cite to another source.
::The other thing is that as UI/UX matter, the longer instructions get, the less likely folks are to read any of them. So repeating may have the opposite of the desired effect, unfortunately. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 13:31, 11 April 2019 (EDT)
:::Generally speaking, the rule of thumb is not to cite things that are considered common knowledge. Therefore, we would not have to cite every sentence of an article, or even every complete thought. I'll check the original article, though, with an eye towards this kind of misinterpretation... ok, I read through. I think that section contains important information regarding that you must cite not just direct quotes, but anyplace where you get an idea, even if you've paraphrased it. You'd be surprised how many people think you don't have to cite unless you've directly quoted someone's work! I'm ok with folding that in to another section if you think it's confusing.[[User:JaimeS|JaimeS]]
::::Ahh ok, thanks [[User:JaimeS|JaimeS]], now I understand what it's intended to convey and def agree makes sense to hit the "cite whether it's paraphrased or quoted" point. I'll see if I can make it sit with the "cite everything [unless common knowledge]"--maybe we can use the quote from that article in a footnote, for sake of concision/hitting the high notes as clearly as possible. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 11 April 2019 (EDT)
:::::Great, [[User:Canele|Canele]]! Thanks for that disambiguation, good looking out. [[User:JaimeS|JaimeS]]
::::::RE: "Common knowledge" - I think this should be made clear that it's general knowledge or common knowledge but not what an editor might consider common knowledge about ME/CFS. Many consider "always caused by a virus" as common knowledge for instance, or consider ME or ME/CFS as a "fatigue" condition. I may consider starting a page on Facts vs Myths to cover some of these. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:17, 15 April 2019 (EDT)
:::::::I did also think it might be good to give an example of common knowledge that it's acceptable not to cite, to help people gauge, but I had a hard time coming up with a good one. "Humans generally have two kidneys"? Better suggestions welcome! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:43, 15 April 2019 (EDT)
::::::::I actually really like the following quotation for citations: "Common knowledge... is widely known, undisputed and easily verified, and it generally cannot be attributed to a specific person or paper". It's a really accurate definition that would stop someone from saying "ME is caused by a virus" because they know it is, in fact, disputed, not easily verified, and is not widely known. Here is where that quote came from, and it may be a good source in general, because it also has examples of common knowledge and questions to ask oneself before we can tell whether something is considered common knowledge: https://www.scribbr.com/plagiarism/common-knowledge/. I think we should define common knowledge as per above, and then make the explicit comment that you can find examples of common knowledge and guidance as to what constitutes common knowledge by clicking here (with link to above).[[User:JaimeS|JaimeS]]
:::::::::: +1 to adding a definition of Common Knowledge to the text. The definition quoted by [[User:JamieS|JamieS]] on this talk thread was helpful in clarifying. [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:37, June 13, 2019 (EDT)

== Honorifics ==

I'm wondering about establishing a policy to standardize use--or not--of titles and honorifics (Dr., Professor, etc.) across MEpedia. I realize this is a challenge given the diversity of usage in different languages, fields, etc. Wikipedia deals with that by never using honorifics and only naming specific degrees and positions held (and only doing so the first time the degree or job is mentioned), and otherwise last name only (after the first use). But, I do see that for most readers of MEpedia, there's likely often value in having someone's title included each time that person is mentioned ("In 2018, Dr. So-and-so wrote a second editorial criticizing...") At the same time, I worry it can be confusing rather than clarifying when people who are MDs, PhDs, and DCs all have the same "Dr" in front of their names--it goes without saying that these are really different qualifications and I'm concerned about misleading readers about what a given person's qualifications are. That's compounded right now by variation within the project: some editors write "Dr. Klimas" every time, others "Dr. Nancy Klimas" once and then "Klimas" subsequently (or some other variation). [[User:JaimeS]], do you or others have thoughts on a rule for handling this to best communicate/contextualize scientific information for a broad audience? (In giving the Klimas example, I'm also realizing setting a consistent standard could also help us reduce unconscious bias.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:32, 13 April 2019 (EDT)
:I'm okay with having this be part of our general formatting. MEpedia 'really' has about 10 regular editors with a few people sweeping in once in awhile, so this will go a long way. However, it may be too much to ask or expect first-time users or someone going into one article to keep this in mind. We will either have lots of corrections to make or we'll have to let it slide sometimes. That said, if we choose a format, then the person's title or degree should be described in detail the first time in any given article (Dr Jane Doe, a professor of Immunology at the University of Y", and not again thereafter -- just using Doe or Jane Doe from then on. [[User:Jaime|Jaime]]
::Full title and specified credentials the first time, then only last name thereafter seems like a good rule to me. And yes agreed: for so many of these things, I don't expect new users to know them off the bat and it's really not a big deal if they mess them up. If anything honestly tidying that sort of thing (what WP calls "wikignoming") makes for a good task on foggy days. Just wanted to decide first what we'd like it to be. But that sounds great, I'll add it (as succinctly as possible). [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:04, 16 April 2019 (EDT)
::: I like that phrase: “wikignoming”. That’s my word of the day!
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:16, 16 April 2019 (EDT)
::::Ah, so glad I could share! The wikignome is a venerated figure on WP. We could incorporate the term more here--really helps emphasize how much value many different types of edits add to the project. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 01:26, 17 April 2019 (EDT)
:::::It's just occurred to me that using titles regularly can be problematic because they are changeable. Eg Dr Simon Wessely became Prof, then Sir. When referring to past work or doesn't seem quite right to consistently refer to someone's early work using their current title somehow. I generally use full name in the first instance on a page, and either last name or both names after - except with bio pages where title is relevant. Several pages will refer to several authors with the same surname too. This isn't a big deal to me. I see this as more a Manual of style or editorial thing since it's not about scientific understanding.[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:44, 22 April 2019 (EDT)

==Types of studies ==

This on ''in vivo'' etc is very long and not important. Hardly any research on ME/CFS uses these terms, and if they do they don't make them prominent.

I would prefer to remove this information, or to replace it with Clinical trials information - eg A case study is not a clinical trial, clinical trials will have a trial registration number, difference between Review articles, Editorials or Theories, and Research (eg research involves specific methods and results). [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:01, 14 April 2019 (EDT)
:Good idea! We could also make [[MEpedia:In vivo studies]] and [[MEpedia:In vitro studies]]--or just mainspace entries with those topics (honestly we should def do at least the latter, I will see about starting that today)--to offer here as "See also" but yes, I agree it's not among the main issues of science literacy for editing MEpedia well, and we could trim either to make the whole more concise/readable or to make space for other subjects. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:19, 14 April 2019 (EDT)
::I started the mainspace pages ([[In vivo studies]] and [[In vitro studies]]) but def, I can see the usefulness of also having project space pages in case anyone goes seeking more specific guidance on how MEpedia wants these distinctions described. So we could move the info over there rather than delete it. [[User:Notjusttired|Njt]], I'm sure if you have ideas about what should be included instead, they'd be welcome--you could post a mock-up here for discussion? (If you are up for it, no worries if not.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:43, 14 April 2019 (EDT)

:::That sounds good, although the way it's written suggests more suitably for studies involving tissue samples and animal testing - there's no animal model and I am unsure if there's is much that can be tested with tissue samples given the multi-systematic nature and the risk of trying to get samples from the key areas (brain and spinal column, just a little dangerous!).
:::What would be useful would be some of this [https://clinicaltrials.gov/ct2/about-studies/glossary glossary] - I was looking earlier at Phase 1 to Phase 3 descriptions.
:::Also to keep in mind is not to explain very short / simple things - I've requested debtors add the '''Lingo extension''' - it creates a glossary page and links it to anywhere the term is found on any page - so much could be added there rather than separately in Science Guidelines.
:::My 2 big issues with science guidelines are to get editors not to cite Wikipedia or use ME-pedia pages as citations (they should be links), and to get across that science writers publishing only online are often poor sources for science (fine for personal experiences or Articles to link to) - some terrible "science" out there written by a single professional and either not peer reviewed or almost no improvements made. '''Journals''' should be the main source in my view given the lack of textbooks on ME/CFS. Science Direct is also excellent to search for book chapters or topics not specific to ME/CFS. Some clinics have good articles but others are just terrible. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, 14 April 2019 (EDT)
::::To your first point, I actually think for instance the [[Bhupesh Prusty]] talk at NIH last week specifically discussed ME/CFS research that does isolate certain kinds of material, and the difference that can make in the findings (see [https://twitter.com/MEActNet/status/1114219970660052992 this Twitter thread]), but I totally agree with you that that is '''far''' more advanced science than the main issues the Science guidelines need to convey to improve the scientific value of MEpedia. Coming over from Wikipedia, I am accustomed to much, much higher standards for what can be included, but I understand where the [[MEpedia:About|mission statement]] is coming from about wanting to gather more than what's verified by review articles. To me the big challenge is getting people specify the quality of the source they're using. Like you say: is it one doctor's opinion? Is it some patients on a forum? Is it a peer-reviewed study? If it is, did have three patients or 300? Etc. That glossary is a really good idea. I don't know how the extension you mention works but I'm also happy to start mainspace entries for some of the most common concepts. For all of this, I'm not remotely qualified to write a textbook-level explanation, but I hope if I can get things started, it's easier for folks who do have the scientific expertise to add on, amend, specify. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:31, 14 April 2019 (EDT)
::::::Everything in that page would be cited anyway - e.g. from a medical dictionary, or a book chapter - science direct's website is excellent for finding book chapters. The page name defaults to [[Terminology]] and it needs particular syntax. 
::::::The huge issue with sources is that there aren't any textbooks on ME/CFS. Not one. All books are based on author's own views or research. Although editors really should be stating in the text where info comes from for single sources, e.g. Jason and Sunquist (2009) stated that... I also disagree with you on Wikipedia standards: the editorial / scientific standards mean anything even remotely controversial can be (intentionally) skewed by editors using extremely poor quality sources which count as tiertary sources because opinions and reviews are given greater weight than objective science - some tierary sources barely have any references. Skeptics (actually disbelievers) rule on Wikipedia and there is a bullying culture in evidence on some pages - all editors do not have equal rights or equal influence. Scientists get marginalized since qualifications don't count. The demographics of Wikipedia editors are not representative of society in general to say the least. Talk pages on controversial topics consist of unfounded accusations of using sock puppets (happened to Angela Kennedy), and I've seen editors regularly move content they don't like to talk pages to tie up other editor's time so it won't be included. We don't have edit wars here. We go for facts, not opinions. If a popular opinion has very weak evidence then repeating it often gives it more weight on Wikipedia. Craziness! Also some editors mis-cite sources - what looks like a good reference turns out not to say that at all. Wessely and Sharpe do the same in their own articles. 
::::::At the moment I think many editors just aren't seeing crucial pages like the Science guidelines or manual of style. I read all the welcome message and How to contribute when I first signed up, but only when an editor pointed out the Manual of style did I find it. 
::::::Editing massage: I'd like to change the message editors see before submitting to include links to Editorial guidelines, Science guidelines, Manual of style, and remind them that Wikipedia and blogs are not science sources, and that "if you can't cite it you can't say it". [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:13, 15 April 2019 (EDT)

== Equivocal versus neutral language ==

Wanted to seek more input about section on equivocal language. It seems to me that it's worth keeping "equivocal" in the title rather than [https://www.me-pedia.org/index.php?title=MEpedia:Science_guidelines&diff=next&oldid=55514 revising to "neutral"] because while editors should definitely describe findings neutrally, that's covered in the [[MEpedia:Editorial_guidelines|editorial guidelines]] whereas this is--it seems to me--making a different point about not overstating how definitive a finding might be. My concern for using "neutral" is that to non-scientists, saying something has been proven can seem entirely neutral ("neutral" to me mostly indicates you shouldn't say "shockingly, it was proven that...") On the other hand, is there a risk that telling people always to equivocate could result in people mischaracterizing results? It's obviously not appropriate to say a finding is equivocal if it's just not. Would welcome input on both best practices in science writing as well as how we can be best convey them to folks not yet familiar with those conventions! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:26, 20 April 2019 (EDT)
:Good point. I changed the wording only to try to simplify the language (improving readability). I'm open to other suggestions - or possibly examples? I feel the language used should be closer to "plain English" - short, simple, clear. I admit I had to lookup unequivocal and didn't make a great choice for an alternative word [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:38, 22 April 2019 (EDT)
::I put it in as equivocal very deliberately. Let's keep that word. [[User:Jaime|Jaime]]

==Important studies and works of age ==
What about listing these in a bullet points? Can we shorten the explanation to maybe 2 sentences. Also [[Holmes criteria]] introduced the term CFS - although somehow [[Fukuda criteria]] took over so this example needs changing. Key works in my view are:
* [[Fukuda criteria]]
* [[Canadian Consensus Criteria]] which are for [[ME/CFS]]
* [[International Consensus Criteria]] for ME
* [[PACE trial]]
* Wilshire et al analysis of PACE
* [[Ramsay definition]]
* McEvedy and Beard (1970) - mass hysteria
* Not sure what's best for biomedical studies? 2 Day exercise one?
* [[York Review]] or [[Cochrane]] unretracted exercise review - that brought in CBT & GET evidence or Original BPS trials eg Fulcher & White 1997

==Do not give advice ==
I have added this to clarify. It is especially relevant when describing treatment protocols or dose suggestions for medications. I added similar to the scientific guidelines. [[User:JaimeS]] [[User:JenB]] [[User:Kmdenmark]] [[User:Pyrrhus]] [[User:Hip]] [[User:DxCFS]] [[User:MEandCFS]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 09:56, 3 May 2019 (EDT)
:This would belong in the science guidelines, not the editorial guidelines. I'll copy this discussion over there.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 14:28, 3 May 2019 (EDT)

== "blocks of information" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:27, June 13, 2019 (EDT) ==

I'm confused by the following "Do your best to avoid ... paraphrasing blocks of information". Would the correct interpretation of this be "it's okay to paraphrase a few sentences, but avoid paraphrasing large blocks of text. Instead, prefer to summarize the key points, and link to the source for readers who want details."?

== "if you can't cite it, you can't say it" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:45, June 13, 2019 (EDT) ==

I'd like clarification on the spirit of this rule. Should it be interpreted as

* "Do not add text, unless it is either common knowledge or *immediately* supported with a citation." OR
* "Do not add text, unless it is either common knowledge or *possible* to cite it."

FWIW, I would hope it's the latter. While it may not be optimal, I feel like there is value in adding information that the author is certain is in the literature, but does not yet have the citation handy. Often getting an article started is the hardest part, and we facilitate that if we allow some flexibility on citations. Authors can return to add citations later, and other people can help to add missing citations once there is a skeleton of text in place. To support this, I would love if we also had a "citation needed" template like wikipedia.

-- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:45, June 13, 2019 (EDT)

===Re: "if you can't cite it, you can't say it" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:48, June 13, 2019 (EDT)===

: The second definition also supports the spirit of having various [[MEpedia:How_to_contribute#Roles|Roles]]. Some people are good at distilling down a pile of information to a summary, some people are good at the precision work of citing all key information, and some are good at both. Some people may be good at both, but requiring both at the same time increases friction and may reduce contributions. -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:48, June 13, 2019 (EDT)

MEpedia talk:Science guidelines

2019-06-13T05:45:43Z

EscapeTheFog:/* "if you can't cite it, you can't say it" -- ~~~~ */ new section

MEpedia talk:Science guidelines

2019-06-13T05:37:39Z

EscapeTheFog:/* Deleting "When should I cite?" */ +1 to defining "Common Knowledge"

MEpedia talk:Science guidelines

2019-06-13T05:27:30Z

EscapeTheFog:/* "blocks of information" -- ~~~~ */ new section

== Old ideas ==

Some possible ideas to consider:

1) Quality of references: should be peer-reviewed journal articles or reputable textbooks

2) In the absence of good research, anecdotes can be cited under certain conditions (what conditions?) so long as in the text of the article, the information is not passed off as an established fact and the source of the information is clear. For example, "some clinicians have observed...." or "many patients have reported...." There still needs to be an external citation.

3) Avoid where possible citing health blogs or other third party sources for information that is considered to be scientific fact, especially where a first party source (i.e., a journal article) is available. Blogs, forums, etc. *can* on a case by case basis be reasonable sources for anecdotal or observational information.

4) Where available, always report both negative and positive results. If you do a search for, say, muscle biopses in ME patients, report both the studies that found evidence of abnormalities and studies that did not.

5) Where possible, report information about the design of a specific study or series of studies if they help the reader to grasp the quality and reliability of the findings. For example you might point out features of the design that decrease our confidence in the outcome: small sample sizes, lack of controls, open label. You might also point out information about the design that increase our confidence: randomized, double blind, large N, proper controls, finding replicated. This does not need to be done in great detail but you might say, "Several small n studies have found...." Or "A large, randomized trial found......"

--[[User:Meaction|Meaction]] ([[User talk:Meaction|talk]]) 13:41, 21 November 2015 (PST)

{{collapse top}}
== Volunteer Slack? ==

Under the "Less is more" subsection, it says "go to the Volunteer Slack".
 What is a "Volunteer Slack"???
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:31, 14 March 2019 (EDT)
:[[User:Pyrrhus|Pyrrhus]], Slack is a technology that's basically a very fancy chatroom service; you can make a Slack for a specific group and then it offers the possibility of having different, easily searchable threads for different topics. I take it there is an MEpedia Slack, although I'm not part of it and don't know the Slack's name or who to ask for an invite, so eventually we should probably try to find out how users who wish to can join (personally I don't love using it; I find it overstimulating and would rather discuss with editors here, but it's good to offer different options as different people will undoubtedly have a variety of different preferences and accessibility requirements.) Meanwhile if you want, you can check out the tech at Slack.com though; the basic service is free, you only pay for upgrades (like storage if your group has more than 10,000 messages, etc.) Poking around, I do see an MEAction Volunteers Slack (meaction.slack.com) and you can sign into it if you have an meaction.net email address. But I don't know if MEpedia has a separate one or if MEpedia is a "channel" in that one; also don't know if you have to get an meaction.net email or if possibly existing members (or especially, moderators) can add send invites to others to join the Slack, if that is the right one. So many questions! Sorry I'm probably giving more questions than answers here! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:29, 19 March 2019 (EDT)
::Thank you so much [[User:Canele|Canele]]! That is very very informative. I prefer discussing things here on MEpedia too, but we desperately need to enable communication between contributors any way we can. I'll ask around to see how I could join. Now, whom do I ask? ''That'' would be a good question for the Slack group! ;)
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 21:12, 19 March 2019 (EDT)
:::The best bet as far as I know would be [[User:JenB]], or maybe she can suggest who best to go to with MEpedia questions if it's someone else? (I'd also love to ask about either adding to the [[MediaWiki_talk:Captcha-addurl-whitelist|CAPTCHA whitelist]] or getting set up to take of that myself, which I'd be happy to do, just don't know who best to ask for the necessary permissions.) Thanks for any guidance! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 22:13, 19 March 2019 (EDT)
::::I’m now in the Slack group, so if there’s anything you want me to bring up, let me know. The CAPTCHA whitelist has already been brought up. Is the only thing needed there is admin privs to edit the file? Or is the CAPTCHA whitelist more complicated than that?
::::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:02, 29 March 2019 (EDT)
::::::Oh, thanks so much [[User:Pyrrhus|Pyrrhus]]. Yeah as best I can tell, it's just admin permissions that's required to edit that page and then appropriate URLs only need be pasted in. As Njt has pointed out, the best would be if we could set up a user right group that automatically turned off the CAPTCHA for trusted users (discussed further here: [[MediaWiki_talk:Captcha-addurl-whitelist#Regex_for_Whitelist]]), but setting that up is beyond my personal technological capacities, so until someone who is capable has the time to take up that project, I think granting someone who is around more (you, me, whomever) permission to add to the white list would go a long way to improving accessibility. (My personal opinion would be that whomever is delegated that authority should only whitelist the most rock-solid science and reference sites. Other kinds of sites are important to include on MEpedia but I've seen a fair number of places where they're not used in accordance with [[MEpedia:Science guidelines]] and I think it maybe wise to leave the speed bump up at least for now.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::[[User:Canele]] If you wanted to join Slack's MEpedia group you can email the info meaction.net email address, on contact [[User:JaimeS]]. Some discussion goes on in the Facebook group (linked to from the MEAction website) but not much. I have recently discovered that auto confirm by email address may remove the Captcha, fixing the email feature has been flagged up since there's a new issue with it. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 18:42, 29 March 2019 (EDT)
::::::Thanks [[User:Notjusttired|Njt]] for the head's up about how to join the Slack. I may do so later; I find the tech a little overstimulating so I like discussing here where things don't move quite as rapidly. Meanwhile though, that sure would be great if eventually there were an automatic user right to disable the CAPTCHA. I suppose one thing I would say is, my ideal world would disable the CAPTCHA after a user has made a certain number of manual edits (500?) rather than just after confirming their email address, because it's so easy for spammers to dummy up an email address, confirm it, and then go to town. On a site about science, I do worry about manipulation by folks with a financial interest. But, we'll wait to see what's possible, I suppose? [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:01, 29 March 2019 (EDT)
:::::::That's a good suggestion on number of edits - could be put in the Dev queue. I would set it much lower - say 50 edits - the Captcha is easy to lookup for people so I presume it's mostly there to stop robots / automated edits. With automated edits I'm not sure how easy it is for robots to do the email confirm or if any have tried. Njt [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:14, 30 March 2019 (EDT)
::::::::Good idea, I'll add it to the dev queue! You're probably right that 50 would do the job for now. I know Wikipedia deals with folks that for-profit, not-necessarily-reliable sites are paying to go in and manually add many links to that site; I was thinking the CAPTCHA would be at least a speed bump for that. But no real reason to have it be so high until/unless that becomes an issue here. I assume once that feature is in place, it wouldn't be so hard to adjust the specific number. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 18:21, 30 March 2019 (EDT)

== Rename to MEpedia:Science guidelines ==

Any objection if this page "Science Guidelines" is renamed to "MEpedia:Science guidelines"?
 Since this page is about the MEpedia project itself, it really should belong in the MEpedia namespace. ("MEpedia:")
 [[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 20:43, 18 March 2019 (EDT)
:I'm for it! (Again!) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 19 March 2019 (EDT)
::Done!
::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 16:04, 29 March 2019 (EDT)
{{collapse bottom}}

== Deleting "When should I cite?" ==

Any objections to deleting the "When should I cite?" instruction? I feel like it's already (and more accurately) covered in the preceding "If you can't cite it, you can't say it" instruction. Using ''Citing References in Scientific Research Papers'' makes sense for those doing primary research since original arguments/findings don't need to be cited--but here (I think) we want everything added to be referenced so that readers should be able to go check to see what verifies a given claim, rather than having to trust whichever random editor who made the change was actually correct. Right? Thoughts? (Sorry, tired, this might not be clear.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 00:38, 11 April 2019 (EDT)
:I’m not sure I understand, but I’ll tag [[User:JaimeS]] because she’s the Science Editor and she can give a definitive yes or no. As a general rule, I think we want to drill into people that everything needs to cited, even if we repeat our selves. Hope this helps.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 12:02, 11 April 2019 (EDT)
::Let me take another, more caffeinated crack at explaining (grin)! I'm worried that by specifying we must cite everything we get from other sources, ''Citing References...'' inadvertently implies some things don't need to be cited. Which is true for people publishing research or review studies--you don't need to cite ideas original to you--but MEpedia isn't (as I understand it) the place for folks to publish their own novel hypotheses: only things they can cite to another source.
::The other thing is that as UI/UX matter, the longer instructions get, the less likely folks are to read any of them. So repeating may have the opposite of the desired effect, unfortunately. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 13:31, 11 April 2019 (EDT)
:::Generally speaking, the rule of thumb is not to cite things that are considered common knowledge. Therefore, we would not have to cite every sentence of an article, or even every complete thought. I'll check the original article, though, with an eye towards this kind of misinterpretation... ok, I read through. I think that section contains important information regarding that you must cite not just direct quotes, but anyplace where you get an idea, even if you've paraphrased it. You'd be surprised how many people think you don't have to cite unless you've directly quoted someone's work! I'm ok with folding that in to another section if you think it's confusing.[[User:JaimeS|JaimeS]]
::::Ahh ok, thanks [[User:JaimeS|JaimeS]], now I understand what it's intended to convey and def agree makes sense to hit the "cite whether it's paraphrased or quoted" point. I'll see if I can make it sit with the "cite everything [unless common knowledge]"--maybe we can use the quote from that article in a footnote, for sake of concision/hitting the high notes as clearly as possible. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:30, 11 April 2019 (EDT)
:::::Great, [[User:Canele|Canele]]! Thanks for that disambiguation, good looking out. [[User:JaimeS|JaimeS]]
::::::RE: "Common knowledge" - I think this should be made clear that it's general knowledge or common knowledge but not what an editor might consider common knowledge about ME/CFS. Many consider "always caused by a virus" as common knowledge for instance, or consider ME or ME/CFS as a "fatigue" condition. I may consider starting a page on Facts vs Myths to cover some of these. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:17, 15 April 2019 (EDT)
:::::::I did also think it might be good to give an example of common knowledge that it's acceptable not to cite, to help people gauge, but I had a hard time coming up with a good one. "Humans generally have two kidneys"? Better suggestions welcome! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:43, 15 April 2019 (EDT)
::::::::I actually really like the following quotation for citations: "Common knowledge... is widely known, undisputed and easily verified, and it generally cannot be attributed to a specific person or paper". It's a really accurate definition that would stop someone from saying "ME is caused by a virus" because they know it is, in fact, disputed, not easily verified, and is not widely known. Here is where that quote came from, and it may be a good source in general, because it also has examples of common knowledge and questions to ask oneself before we can tell whether something is considered common knowledge: https://www.scribbr.com/plagiarism/common-knowledge/. I think we should define common knowledge as per above, and then make the explicit comment that you can find examples of common knowledge and guidance as to what constitutes common knowledge by clicking here (with link to above).[[User:JaimeS|JaimeS]]

== Honorifics ==

I'm wondering about establishing a policy to standardize use--or not--of titles and honorifics (Dr., Professor, etc.) across MEpedia. I realize this is a challenge given the diversity of usage in different languages, fields, etc. Wikipedia deals with that by never using honorifics and only naming specific degrees and positions held (and only doing so the first time the degree or job is mentioned), and otherwise last name only (after the first use). But, I do see that for most readers of MEpedia, there's likely often value in having someone's title included each time that person is mentioned ("In 2018, Dr. So-and-so wrote a second editorial criticizing...") At the same time, I worry it can be confusing rather than clarifying when people who are MDs, PhDs, and DCs all have the same "Dr" in front of their names--it goes without saying that these are really different qualifications and I'm concerned about misleading readers about what a given person's qualifications are. That's compounded right now by variation within the project: some editors write "Dr. Klimas" every time, others "Dr. Nancy Klimas" once and then "Klimas" subsequently (or some other variation). [[User:JaimeS]], do you or others have thoughts on a rule for handling this to best communicate/contextualize scientific information for a broad audience? (In giving the Klimas example, I'm also realizing setting a consistent standard could also help us reduce unconscious bias.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 19:32, 13 April 2019 (EDT)
:I'm okay with having this be part of our general formatting. MEpedia 'really' has about 10 regular editors with a few people sweeping in once in awhile, so this will go a long way. However, it may be too much to ask or expect first-time users or someone going into one article to keep this in mind. We will either have lots of corrections to make or we'll have to let it slide sometimes. That said, if we choose a format, then the person's title or degree should be described in detail the first time in any given article (Dr Jane Doe, a professor of Immunology at the University of Y", and not again thereafter -- just using Doe or Jane Doe from then on. [[User:Jaime|Jaime]]
::Full title and specified credentials the first time, then only last name thereafter seems like a good rule to me. And yes agreed: for so many of these things, I don't expect new users to know them off the bat and it's really not a big deal if they mess them up. If anything honestly tidying that sort of thing (what WP calls "wikignoming") makes for a good task on foggy days. Just wanted to decide first what we'd like it to be. But that sounds great, I'll add it (as succinctly as possible). [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:04, 16 April 2019 (EDT)
::: I like that phrase: “wikignoming”. That’s my word of the day!
:::[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 19:16, 16 April 2019 (EDT)
::::Ah, so glad I could share! The wikignome is a venerated figure on WP. We could incorporate the term more here--really helps emphasize how much value many different types of edits add to the project. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 01:26, 17 April 2019 (EDT)
:::::It's just occurred to me that using titles regularly can be problematic because they are changeable. Eg Dr Simon Wessely became Prof, then Sir. When referring to past work or doesn't seem quite right to consistently refer to someone's early work using their current title somehow. I generally use full name in the first instance on a page, and either last name or both names after - except with bio pages where title is relevant. Several pages will refer to several authors with the same surname too. This isn't a big deal to me. I see this as more a Manual of style or editorial thing since it's not about scientific understanding.[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:44, 22 April 2019 (EDT)

==Types of studies ==

This on ''in vivo'' etc is very long and not important. Hardly any research on ME/CFS uses these terms, and if they do they don't make them prominent.

I would prefer to remove this information, or to replace it with Clinical trials information - eg A case study is not a clinical trial, clinical trials will have a trial registration number, difference between Review articles, Editorials or Theories, and Research (eg research involves specific methods and results). [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:01, 14 April 2019 (EDT)
:Good idea! We could also make [[MEpedia:In vivo studies]] and [[MEpedia:In vitro studies]]--or just mainspace entries with those topics (honestly we should def do at least the latter, I will see about starting that today)--to offer here as "See also" but yes, I agree it's not among the main issues of science literacy for editing MEpedia well, and we could trim either to make the whole more concise/readable or to make space for other subjects. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 14:19, 14 April 2019 (EDT)
::I started the mainspace pages ([[In vivo studies]] and [[In vitro studies]]) but def, I can see the usefulness of also having project space pages in case anyone goes seeking more specific guidance on how MEpedia wants these distinctions described. So we could move the info over there rather than delete it. [[User:Notjusttired|Njt]], I'm sure if you have ideas about what should be included instead, they'd be welcome--you could post a mock-up here for discussion? (If you are up for it, no worries if not.) [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:43, 14 April 2019 (EDT)

:::That sounds good, although the way it's written suggests more suitably for studies involving tissue samples and animal testing - there's no animal model and I am unsure if there's is much that can be tested with tissue samples given the multi-systematic nature and the risk of trying to get samples from the key areas (brain and spinal column, just a little dangerous!).
:::What would be useful would be some of this [https://clinicaltrials.gov/ct2/about-studies/glossary glossary] - I was looking earlier at Phase 1 to Phase 3 descriptions.
:::Also to keep in mind is not to explain very short / simple things - I've requested debtors add the '''Lingo extension''' - it creates a glossary page and links it to anywhere the term is found on any page - so much could be added there rather than separately in Science Guidelines.
:::My 2 big issues with science guidelines are to get editors not to cite Wikipedia or use ME-pedia pages as citations (they should be links), and to get across that science writers publishing only online are often poor sources for science (fine for personal experiences or Articles to link to) - some terrible "science" out there written by a single professional and either not peer reviewed or almost no improvements made. '''Journals''' should be the main source in my view given the lack of textbooks on ME/CFS. Science Direct is also excellent to search for book chapters or topics not specific to ME/CFS. Some clinics have good articles but others are just terrible. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 17:17, 14 April 2019 (EDT)
::::To your first point, I actually think for instance the [[Bhupesh Prusty]] talk at NIH last week specifically discussed ME/CFS research that does isolate certain kinds of material, and the difference that can make in the findings (see [https://twitter.com/MEActNet/status/1114219970660052992 this Twitter thread]), but I totally agree with you that that is '''far''' more advanced science than the main issues the Science guidelines need to convey to improve the scientific value of MEpedia. Coming over from Wikipedia, I am accustomed to much, much higher standards for what can be included, but I understand where the [[MEpedia:About|mission statement]] is coming from about wanting to gather more than what's verified by review articles. To me the big challenge is getting people specify the quality of the source they're using. Like you say: is it one doctor's opinion? Is it some patients on a forum? Is it a peer-reviewed study? If it is, did have three patients or 300? Etc. That glossary is a really good idea. I don't know how the extension you mention works but I'm also happy to start mainspace entries for some of the most common concepts. For all of this, I'm not remotely qualified to write a textbook-level explanation, but I hope if I can get things started, it's easier for folks who do have the scientific expertise to add on, amend, specify. [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 20:31, 14 April 2019 (EDT)
::::::Everything in that page would be cited anyway - e.g. from a medical dictionary, or a book chapter - science direct's website is excellent for finding book chapters. The page name defaults to [[Terminology]] and it needs particular syntax. 
::::::The huge issue with sources is that there aren't any textbooks on ME/CFS. Not one. All books are based on author's own views or research. Although editors really should be stating in the text where info comes from for single sources, e.g. Jason and Sunquist (2009) stated that... I also disagree with you on Wikipedia standards: the editorial / scientific standards mean anything even remotely controversial can be (intentionally) skewed by editors using extremely poor quality sources which count as tiertary sources because opinions and reviews are given greater weight than objective science - some tierary sources barely have any references. Skeptics (actually disbelievers) rule on Wikipedia and there is a bullying culture in evidence on some pages - all editors do not have equal rights or equal influence. Scientists get marginalized since qualifications don't count. The demographics of Wikipedia editors are not representative of society in general to say the least. Talk pages on controversial topics consist of unfounded accusations of using sock puppets (happened to Angela Kennedy), and I've seen editors regularly move content they don't like to talk pages to tie up other editor's time so it won't be included. We don't have edit wars here. We go for facts, not opinions. If a popular opinion has very weak evidence then repeating it often gives it more weight on Wikipedia. Craziness! Also some editors mis-cite sources - what looks like a good reference turns out not to say that at all. Wessely and Sharpe do the same in their own articles. 
::::::At the moment I think many editors just aren't seeing crucial pages like the Science guidelines or manual of style. I read all the welcome message and How to contribute when I first signed up, but only when an editor pointed out the Manual of style did I find it. 
::::::Editing massage: I'd like to change the message editors see before submitting to include links to Editorial guidelines, Science guidelines, Manual of style, and remind them that Wikipedia and blogs are not science sources, and that "if you can't cite it you can't say it". [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 07:13, 15 April 2019 (EDT)

== Equivocal versus neutral language ==

Wanted to seek more input about section on equivocal language. It seems to me that it's worth keeping "equivocal" in the title rather than [https://www.me-pedia.org/index.php?title=MEpedia:Science_guidelines&diff=next&oldid=55514 revising to "neutral"] because while editors should definitely describe findings neutrally, that's covered in the [[MEpedia:Editorial_guidelines|editorial guidelines]] whereas this is--it seems to me--making a different point about not overstating how definitive a finding might be. My concern for using "neutral" is that to non-scientists, saying something has been proven can seem entirely neutral ("neutral" to me mostly indicates you shouldn't say "shockingly, it was proven that...") On the other hand, is there a risk that telling people always to equivocate could result in people mischaracterizing results? It's obviously not appropriate to say a finding is equivocal if it's just not. Would welcome input on both best practices in science writing as well as how we can be best convey them to folks not yet familiar with those conventions! [[User:Canele|Canele]] ([[User talk:Canele|talk]]) 16:26, 20 April 2019 (EDT)
:Good point. I changed the wording only to try to simplify the language (improving readability). I'm open to other suggestions - or possibly examples? I feel the language used should be closer to "plain English" - short, simple, clear. I admit I had to lookup unequivocal and didn't make a great choice for an alternative word [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 16:38, 22 April 2019 (EDT)
::I put it in as equivocal very deliberately. Let's keep that word. [[User:Jaime|Jaime]]

==Important studies and works of age ==
What about listing these in a bullet points? Can we shorten the explanation to maybe 2 sentences. Also [[Holmes criteria]] introduced the term CFS - although somehow [[Fukuda criteria]] took over so this example needs changing. Key works in my view are:
* [[Fukuda criteria]]
* [[Canadian Consensus Criteria]] which are for [[ME/CFS]]
* [[International Consensus Criteria]] for ME
* [[PACE trial]]
* Wilshire et al analysis of PACE
* [[Ramsay definition]]
* McEvedy and Beard (1970) - mass hysteria
* Not sure what's best for biomedical studies? 2 Day exercise one?
* [[York Review]] or [[Cochrane]] unretracted exercise review - that brought in CBT & GET evidence or Original BPS trials eg Fulcher & White 1997

==Do not give advice ==
I have added this to clarify. It is especially relevant when describing treatment protocols or dose suggestions for medications. I added similar to the scientific guidelines. [[User:JaimeS]] [[User:JenB]] [[User:Kmdenmark]] [[User:Pyrrhus]] [[User:Hip]] [[User:DxCFS]] [[User:MEandCFS]] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 09:56, 3 May 2019 (EDT)
:This would belong in the science guidelines, not the editorial guidelines. I'll copy this discussion over there.
:[[User:Pyrrhus|Pyrrhus]] ([[User talk:Pyrrhus|talk]]) 14:28, 3 May 2019 (EDT)

== "blocks of information" -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 01:27, June 13, 2019 (EDT) ==

I'm confused by the following "Do your best to avoid ... paraphrasing blocks of information". Would the correct interpretation of this be "it's okay to paraphrase a few sentences, but avoid paraphrasing large blocks of text. Instead, prefer to summarize the key points, and link to the source for readers who want details."?

User:EscapeTheFog

2019-06-13T05:15:12Z

EscapeTheFog:/* Contribute To */

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Manual of style]]
* [[MEpedia:Science guidelines]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]
* [[Photophobia]]
* [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome]], and [[ME/CFS]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* [[Brain fog|Brain Fog]]
* [[Azithromycin]]
* [[Clarithromycin]]
* [[Rifampicin]]
* [[Metronidazole]]
* [[Neomycin]]

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020

User:EscapeTheFog

2019-06-13T05:05:09Z

EscapeTheFog:/* ME/CFS Topics on me-pedia */

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Manual of style]]
* [[MEpedia:Science guidelines]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]
* [[Photophobia]]
* [[Definitions of myalgic encephalomyelitis and chronic fatigue syndrome]], and [[ME/CFS]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* [[Brain fog|Brain Fog]]

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020

Talk:List of symptoms in ME CFS/Canadian/Sensory

2019-06-13T05:00:16Z

EscapeTheFog:fix link

== Confused by the word "Canadian" in the title -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 00:59, June 13, 2019 (EDT) ==

Not sure how to parse the "ME CFS/Canadian/Sensory" portion of the page title. Is it referring to the [[Canadian Concensus Criteria]] or something else? I think we should have a descriptive intro paragraph to clarify this.

Talk:List of symptoms in ME CFS/Canadian/Sensory

2019-06-13T04:59:24Z

EscapeTheFog:/* Confused by the word "Canadian" in the title -- ~~~~ */ new section

== Confused by the word "Canadian" in the title -- [[User:EscapeTheFog|EscapeTheFog]] ([[User talk:EscapeTheFog|talk]]) 00:59, June 13, 2019 (EDT) ==

Not sure how to parse the "ME CFS/Canadian/Sensory" portion of the page title. Is it referring to the [[Canadian concensus criteria]] or something else? I think we should have a descriptive intro paragraph to clarify this.

User:EscapeTheFog

2019-06-13T04:54:22Z

EscapeTheFog:/* Contribute To */

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Manual of style]]
* [[MEpedia:Science guidelines]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* [[Brain fog|Brain Fog]]

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020

User:EscapeTheFog

2019-06-13T04:54:00Z

EscapeTheFog:/* Contribute To */ Brain Fog

Long time reader, first time contributor :-). I have had ME/CFS for about 15 years, though I was misdiagnosed with depression for the majority of that time. I spend a lot of time learning about the disease, and I hope to begin helping others by expanding and improving the knowledge here in ME-pedia. I have some other interesting ideas for the community -- particularly around how to increase participation -- which I hope to share over time.

Employed as a Software Engineer in Silicon Valley, California, USA.

== Interests / Focus Areas ==
I plan to focus on topics where I have some personal experience and/or have spent considerable time learning about. I'm most interested in the following conditions (and treatments and testing related to them):
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO) - and related pages on treatments including synthetic antibiotics, herbal antibiotics, and diets.
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS) - its relevance to ME/CFS, treatments, and testing
* [[Bartonella]]
* [[Babesia]]

== Contributions ==

=== Medium ===
* [[Elemental diet]]
* [[Lactulose breath test|Lactulose Breath Test]]
* [[Small intestinal bacterial overgrowth|Small Intestine Bacterial Overgrowth]] (SIBO)

=== Small ===
* [[Center for Complex Diseases]]
* [[Metabolic trap]]
* [[Open Medicine Institute]]
* [[Oregano]]
* [[Rifaximin]]

=== Tiny ===
* [[Adderall]]

== TODO Lists ==

=== Read ===

==== Meta Topics on me-pedia ====
* [[MEpedia]]
* [[MEpedia:Manual of style]]
* [[MEpedia:Science guidelines]]
* [[MEpedia:Suggested tasks]]

==== ME/CFS Topics on me-pedia ====
* [[Resveratrol]]
* [[Ketosis]]
* [[Fasting]]
* [[Intermittent fasting]]
* [[Curcumin]]
* [[Fecal matter transplant]]
* [[Cell danger response hypothesis]]

==== External Papers ====
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964729/ Gut inflammation in chronic fatigue syndrome]
* [https://www.gastrojournal.org/article/S0016-5085(00)83765-8/abstract Eradication of small intestinal bacterial overgrowth decreases symptoms in chronic fatigue syndrome: A double blind, randomized study]
* [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ Herbal Therapy Is Equivalent to Rifaximin for the Treatment of Small Intestinal Bacterial Overgrowth]

=== Contribute To ===
* [[Olive Leaf Extract]]
* [[Intestinal permeability]]
* [[Leaky gut]]
* [[Low FODMAP diet|Low FODMAP Diet]]
* [[Garlic]] / [[Allicin]]
* [[Neem]]
* [[Berberine]]
* [[Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus]] (PANDAS)
* [[Cunningham Panel]]
* [[GAPS diet|GAPS Diet]]
* [[Specific carbohydrate diet|Specific Carbohydrate Diet]]
* [[Galaxy Diagnostics]]
* [[Babesia]]
* [[IGeneX]]
* [[Modafinil]]
* [[Armodafnil]]
* [[Clonazepam]]
* [[Melatonin]]
* [[Cromolyn sodium]]
* [[Ketotifen]]
* [[RAPH Elimination Diet]]
* [[Hyperacusis]]
* Brain Fog

=== Watch ===
* [[I Remember Me]]
* [[Forgotten Plague]]
* [[Sick and Tired]]

=== Miscellaneous ===
* Buy a red [https://millionsmissing-official.myshopify.com/collections/meaction-usa-holiday-collection/products/millionsmissing-short-sleeve-t-shirt-red?variant=8095419400220 Millions Missing t-shirt] before they sell out for Millions Missing 2020