User:Medicaljournalist
Professional qualifications: Master's degree: Journalism, University of Missouri, Columbia http://journalism.missouri.edu/graduate/masters/
Professional affiliations: Medical Writer's Association of America The American Medical Writers Association (AMWA), founded in 1940, is the leading professional organization for biomedical communicators. http://www.amwa.org/default.asp?ID=1 Investigative Reporters and Editors http://www.ire.org/
As a medical editor I follow Wikipedia's stated SVOP guidelines. I have been doing deep background research, in a professional capacity, on this organic brain disease and others for three years. As a professional journalist specializing in the field of medicine, all changes I make are fully and factually documented for verification as per the Society of Professional Journalists(SPJ) Code of Ethics, as well as Wikipedia policy.
For whatever technical reason I have been unable to open a connection to the discussion page despite assiduously studying and following the directions. Like many others I'm sure, between my professional obligations and my family obligations there isn't much time to squeeze this in. If someone in this "welcoming" community would like to cheerfully help out, I cheerfully accept.
Until that happens or the summary section is expanded beyond 200 words, I will join those parts of the discussion that are civil via this page.
For the record: The repeated deletion of my good faith, factual, legitimately and specifically sourced edits specifically violates stated Wikipedia policy. Should this violation continue, Wikipedia has a policy for contacting them in such an event and I will follow that policy also. The same goes for the libel. This part is not up for discussion.
My (repeated) edits followed both SVOP as well as, NVOP policies as they apply to the SVOP category, to the letter. If you disagree with SVOP policy I don't know as I'm the one to complain to as edits to policy do not appear to be possible.
From what I gather, there appears to be some confusion regarding the difference between factual accuracy, theory, POV and opinion.
(If the information in new to you personally that is why verifiable sources are required. According to stated Wikipedia protocol, edits can only be held until the source is verified. Was anyone unable to verify the extremely specific sources I cited? The discussion area doesn't mention any.
If you need further clarification beyond the physical citations, I can provided contact information for Mr. Andre l'Hours at WHO headquarters in Geneva who oversees the ICD system or Dr.D.B. Sareno who oversees the F48 classification of mental disorders. However, you will have to make the contact. I don't mean to be rude, but professional journalists do not make the contents of their interviews available prior to publication or broadcast. Sorry. After publication it requires a court order.
Fact: Legal classifications issued by legitimate regulatory bodies are not "opinions" any more than the legal speed limit is an "opinion or theory." Nor does stating the law make in a personal opinion or point of view.
While it may be "popular" to disagree with posted speed limits, that in and of it's self does not change the law no matter who is doing the disagreeing nor does it make it a theory. It is also popular among some groups when pulled over to argue about whether the legal limit is justified, why they personally are exceptions yada yada. Nor does ignorance of the law change the law.
I assume the following comment is some sort of wikipedia inside joke so I'll pass although I appreciated the laugh. Thank you. "Using definitions from medical dictionaries is suspect, and so is the bombardment with "the WHO says, the CDC says" etc."
Quotations from testimony given before the United States Senate are also a matter of public record. Quotations from published news articles can be found at the link provided. I have made every effort to use articles available at no charge, however I have no control over business decisions as to how long articles are available or whether or not there is a fee. Those are the pervue of the publisher. These quotes do not meet any definition of anecdotal I could find. Every single quote, per Wikipedia, contained the name of the specific person who made the statement, what their qualifications are relevant to the subject as well as the usual source information. I'm afraid I don't see the relevance of speculative personal opinions as to why the quotes were made although such remarks can be legally construed as libel. Particularly when they are repeated.
Other interesting remarks: Doctor bashing, what on earth is being referred to? Which doctors? Red-haired doctors? Doctors who don't brush their teeth? Doctors who cheat on their income taxes? Doctors who testify before the Senate? Doctors at Harvard University? Podiatrists? Pediatricians? Given that all quotes or paraphrases I made refer to specific doctors and are only quoting those doctors or their publically stated positions, I'm even less sure as to how the conclusion that doctors are bashing themselves or anyone else were reached? Can anyone help me out with specifics? Since a rant is lengthy and repetitive among other things I would be grateful if those lengthy, repetitive passages were specifically quoted so everyone knows what is being referred to.
According to Wikipedia NVOP protocol the more specific the better. I know some people edit more than one area, perhaps that is the source of this confusion? Oh well.
The National Health Institute (NIH) has a publically accessible index of all published research studies through Pubmed.If you are not familiar with how to use Pubmed and the directions are confusing I would be glad to assist. Just ask. :D Once again, the availability of full studies is a decision made by the publisher of the study. Some are available at no charge and others may require payment.
As a general rule of thumb - abstracts are supposed to factually summarize the research however, it is very common for scientists of all stripes to use it as a form of advertising known as bait and switch. In other words, they leave out the negative findings. Ethics regarding this and other forms of scientific misconduct are beyond the scope of these comments.
Key points: Abstracts rarely note who funded the study, however, studies funded by large pharmaceutical companies (4 out of 5 dentists agree types) are being investigated both by the NIH and other regulatory agencies. The same would be true of chemical companies and in health research disability insurance companies also fund research. All the national papers and general news magazines have numerous articles available.
Some examples: drug companys who fund psychiatric studies may do so in order to increase sales of antidepressants. Chemical companies often face major legitimate lawsuits so it is to their advantage to publish favorable studies in an effort to hide studies that can be used as evidence in lawsuits. Sometimes it works, sometimes it doesn't. Disability insurance companies are prone to funding only studies that allow them to limit or cancel policies and claims.
The largest private disability insurance company in the United States UnumProvident has been indicted and is currently being sued by some six or more states for refusing to pay legitimate claims related to just that sort of illegal activity. I've heard people joke that the only time insurance is your friend is when you pay them and they don't pay you. Maybe they were talking about these guys. I know Blue Shield/Blue Cross which is a health insurerer lists CFS specifically under Neurological disorders along with other diseases that have a 12 month waiting period such as fibromyalgia listed under rheumatism.
Reading the entire study also allows journalists and other readers to note badly done studies, studies that make claims that the research doesn't support, studies that are based on a false or unsupported claims or dated research. As an exaggeration studies that claim their research are based on "evil spirits" cause organic disease theories from the middle ages would be suspect. Wikipedia refers to this in their SVOP section under fringe claims. NVOP requires that such theories or studies be mentioned but not given equal billing.
Okay real quickly:
Just so everyone is on the same page: To save time you may wish to peruse http://en.wikipedia.org/wiki/Science http://en.wikipedia.org/wiki/Scientific_method http://en.wikipedia.org/wiki/Wikipedia:Disambiguation
1. Wikipedia: See the "edit this page" tab at the top of each article? On Wikipedia, you can edit pages whenever you want, logged in or not.You're welcome to edit anonymously
2.Make the context clear in the first few words.
* In quantum physics, the Heisenberg uncertainty principle...
In quantum physics, the Heisenberg uncertainty principle
Avoid links in the title (sorry fixed that) and circular definitions.
I believe the overview edit I contributed meets this requirement. It is strictly factual using both legal sources and established credible sources. It does not refer to controversy as requested by Wikipedia in I think the scientific and SPOV sections, it gives a quick overview for any reader unfamiliar with this brain disease and its overall impact, yet leaving detail for appropriate inclusion under subheadings.
(Wikipedia also says that if an editor has trouble with the formatting the important thing is that the edit be well sourced and helpful and kindly folks would take care of the formatting for the editor. Thanks for all your help in this regard.)
"Are all the references that were recently added actually sources from which information in this article was derived? If not, I propose they be deleted. They may be good sources of information (I don't know either way, as I haven't read them), but I'm under the impression that the "References" section of any article is for the specific purpose of corroborating claims made in the article itself. Icarus 06:04, 12 July 2005 (UTC)"
Icarus - just following Wikipedia protocol in the NPOV section which said that if an edit might be considered controversial multiple citations were required. As for the studies, I've read all of them and have not included any irrelevant studies. Some of them actually address more than one area which should shorten up the reference section in other areas. (My profession was stated purely as a courtesy since my edits are simply based on my factual familiarity with the subject-but in my field anything else would result in dismissal and I like my house. :D )
Sandy - Glad to hear you are better. If you were properly diagnosed (unfortunately many CFS patients aren't) you won the lottery as the latest medical research shows only four percent of patients experience 100 percent remission. Lucky you. The most recent epidemiological studies I cite in the overview (Jason et al, Annals of Medicine) also showed the average length of this brain disease was seven years followed varying degrees of partial remission. Unfortunatly, the study also showed that as many as 50 percent of patients never go into remission.
I'm unaware of a valid scientific connection between hormones and virally induced brain diseases, but you never know.
Gulf War Neurological Disease is triggered by exposure to the chemical toxin sarin in genetically suseptible patients. Dr. Haley's research was published world wide in November 2004 (The Scientist ran an excellent article about the discovery on the 8th I think.)
If you are interested I might still have the article, otherwise the Scientist is online. It's a high quality general interest science weekly magazine read by both scientists and the public alike. Anyway, long story short the United States government now officially classifies Gulf War Disease as an organic neurological disorder.
And yes, there is strong evidence that the trigger in CFS G93.3 is viral instead of a toxic chemical, but the results are the same. Excellent connection. Post polio also has those connections that you picked up on, but a different viral suspect than CFS. Science is amazing. twenty years ago only four types of viruses were known in the world and now it's up to seven. HHV-4 (EBV) wasn't discovered until 1959.
The vast majority of the expanding evidence on CFS G93.3 over the past two decades has a big old flashing red arrow over active and cyclically reactivated HHV-6 and its kissing cousin HHV-4 also known as Epstein-Barr disease. Most everyone has them in their blood but in healthy people they remain inactive (dormant).
If you want to read up on them I posted some of them in the reference section. There are relatively small number of studies that were not able to duplicate the original scientific research, but scientists have narrowed the problem down to not using the exact procedures or researching people who had something else. Not all viruses have reliable, inexpensive tests and none of them start out with one. :D Unfortunately, a valid test developed for other viruses known as the PRC doesn't work for the more newly discovered HHV-6 viruses. It gives too many false negatives. You think false positives are bad in pregnancy tests, imagine how bad they are in neurotropic viruses such as HHV-6 and that little sneak EBV that attack the brain and the heart with permanent damage if they aren't caught early enough, say in the first month or so. (The test for EBV is reliable for reactivation.)
The other scientific problem is when researchers check only once. If the virus is inactive at the time, that also produces inaccurate information. What twenty years of biomedical research shows is that in CFS G93.3 patients, only 50 percent of patients show active viral infection on the first test, but the rate goes up to 85 percent upon repeated testing. That's considered statistically significant in science not to mention highly abnormal.
But then the difference between people with organic diseases and healthy people isn't what they have in common, but abnormal differences.
The link biomedical researchers are exploring in many neurological and immune disease as well as cancer and other biggies. Other causes being explored are bacteria and toxic chemicals (like in Gulf War Disease) such as mercury and organophosphates etc.
The coxsackie virus that is suspected in Post-Polio Syndrome, a similar but different disease just like Gulf War Neurological Disease, is the one that is related to chicken pox. Most people who get chicken pox have it once and it's done, but when the virus stays active it causes severe neuropathic pain known as shingles. Nobody wants that one either for some strange reason. :D
What EBV, HHV-6 and Coxsackie B do have in common besides being viruses is that they are nearly always a mild childhood disease that remains dormant. What they also have in common along with mumps among other things, is that adults who are infected for the first time with any of these are far more seriously ill and severe organic damage has been documented. At least I assume men consider becoming sterile severe can't say what their wives think. Probably depends on how many children they already have. :D
Only comment on guiafsen (found in cough syrup) is that is a somewhat experimental protocol developed for a rhuematological disorder (ICD-10 M79.0) known as fibromyalgia (in which viral infection is also being found.) I've heard it helps some people. Since it was designed to rid the body of toxic chemicals and metals (mercury is one) and as discussed above more and more studies are connecting viruses, chemical exposure, as well as bacteria there may be a connection there. A friend of mine who is a neurologist always tells me doctors know a great deal more than they did 100 years ago (partly due to technology), but like knowledge about technolgy (can you believe how small cell phones have gotten) medical knowledge is still limited but increasing.
Sorry if I forgot anyone.