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Our General FACEBOOK GROUP – SOCIAL MEDIA Rules
These general rules apply to those requesting to be added as a new member. As well as Posts and Comments Members add on our Facebook Group.
Be aware that membership in our social media group is limited. We do not approve all. We do not retain all that end up initially approved.
We base this on criteria that we have found causes problems and conflicts for members as well as admins.
Most importantly, personal security issues that external links pose for the unsuspecting.
Please review the rules from time to time since they are adjusted as problems arise. We attempt to keep this an open forum free of conflicts. We want to satisfy members request to prevent spam, abusive interactions, conflicting information, and so on.
First and foremost, we are attempting to help those new to Cold Agglutinin Disease. Providing info to help them navigate to the appropriate doctors, testing, possible treatment options, and perhaps beneficial lifestyle changes.
We frown on members that join our social media group and go off on tangents of other diseases and conditions. Or those that simply post idle chatter. Worse, those that post conflicting information that causes someone seeking information, to go away with more questions, rather than helpful information.
If you want to ask, or provide your knowledge, on non-Cold Agglutinin Disease conditions and subjects. We welcome you.
If you want to post opposing information that differs from our admins and volunteers that have tens of thousands of hours invested. Or you are the type that splits hairs on subjects. You will most likely be removed.
To be blunt and upfront. Please establish your own group for that purpose, your point of view or knowledge, or seek out another group, other than this one. As this group grows, we do not have time for that. We wish you the best in your own group/website endeavors, because it involves massive amounts of time and money. We know we may not always get it right for everyone.
1. No Recommending/Posting/Commenting/Sharing with Medical Research Entities (those not listed on our site as vetted) See expanded explanation.
2. No Posting of Links or Asking Members via posts/comments to IM/DM you for information. We look at such a member as a security threat. Links are always a hazard/source of nefarious opportunities by hackers to auto install “Trojan horse” type of software, phish your information, etc. If you feel compelled, or accidentally post a link directly in a post or a comment, you may be blocked and banned without notice. Asking members to IM/DM you directly via a comment, will result in removal without warning.
ALL Links need submitted through an Admin for review and subsequent review, then posted with our website image. This is for the security and protection of all members. There are no exceptions. You agreed to abide by our group rules to be approved to be a member.
Requests to IM/DM you directly via our social media group fall into this same personal security issue and will result in your account being blocked and banned without notice. Your related correspondence must be kept public to all members. Such comments need reported to an admin.
Members clicking on random links that can appear before they are reported and deleted. Or IM/DM’img directly with other members you don’t know. Are taking a huge risk concerning your personal security, your computer/smart phone, security, etc. We highly recommend you do not get lulled into such risks while “on-line”.
3. No Non-Subject related posts, comments, photos, links, or referrals.
4. Must be in English. All posts, comments, replies, text, and image text must be in the English language.
5. Must be Family appropriate. All posts, comments, replies, text, and images must be Family Friendly at all age levels.
6. Your Personal Profile/Account/Post history, must meet acceptable criteria
7. No Referring. Appearing to be here for the sole purpose of Referring people to other sites or social media. This means Text as well as links.
8. Do not attempt to give specific medical advice on this site/social media, post prescription drug names or supplements with dosages you take on your own or have been prescribed.
9. No posting of info conflicting with those of our admins. Not that we think we get it all correct. We welcome new information. See full explanation to avoid being blocked.
DETAILED EXPLANATION OF RULES
1. Medical Research Individuals, Groups or Organizations
Members or Medical Entities may not post, recommend, comment, etc on threads that pertain to such a Research Group(s), that have not submitted their credentials, and have been listed on our Medical Researcher List.
Members are also encouraged to notify admins of any Research entity you have encountered on our list that appears to not be who they seem, do not follow-thru and what they promise, etc. Especially if you suspect any type of scam or phishing attempt.
Members and Medical Research entities are prohibited from sharing, selling, etc., any form of our members information such as, email addresses, contact information, social media names, etc. Doing so, or suspected of doing so, will get you removed, banned and blocked without notice or explanation.
If you are representing a Medical Research Groups, Individuals, or Organizations associated with Medical Research. You need to fill out and submit our questionnaire that asks for your personal, business, and contact information. Also make sure your Contact info is listed on our Medical Researcher List before posting, commenting, or attempting to contact members.
If not listed, and someone flags you to a Group ADMIN, you will be deleted and blocked without notification.
Our form is found in the FILES section of our FACEBOOK Group. Or use this link. It is always best to also contact an ADMIN directly to insure you are listed and approved to be interacting as a researcher before you Post or Comment.
2. No posting of Links that are not from our associated website.
ColdAgglutininDisease-cad-cagd.com Though we do occasionally allow some we deem appropriate, you run the risk of being blocked/banned.
This group is not a platform for members to add links, referrals to your IM/DM, or to generate traffic to other websites, Social Media, ads, YouTube video’s, items for sale, photos with embedded links.
Those responding to Links or IM/DM’s may find out they are being scammed or hacked in the process. It is a huge personal security risk for you.
Offers of IM/DM help may be based on one’s personal experience, that may be a very narrow in scope. Not pertinent to your particular medical issues. Perhaps even detrimental to another’s case should they take such advice. We have some Drs in the group that don’t even offer this. Such information needs to come from your own attending physician/hematologist.
Leave that kind of advice to the patients attending Hematologists involved. Doctors, that should have all of the patient’s medical information. CAD is often only secondary to something else. Just because you feel you understand your personal case or the case of a loved one. Even talking with doctors. That does not give you qualifications to specifically advise another even if the case may sound familiar.
We work hard at our own expense to provide free content. If there is something lacking on our Website or Social media. Something that would motivate you to link some legitimate information found on another site. Please submit appropriate material that can be added to our source. Otherwise, if you hijack enough people elsewhere. You will make our time and personal expense no longer worth our effort. We would cease to exist.
In other words, please become a contributor, rather than a hijacker.
Do not submit copied/copyright material to us. Information needs to be your own original work/words/text.
Any Linked material must be sent through our Admins or Email. If approved it will be built onto one of our web pages, then we will add the link on Facebook.
Violations will most likely get the member comment Deleted/Blocked without warning or explanation. Multiple violations may lead to the member being blocked and banned from the Group entirely. Multiple complaints to Admins by other members are grounds for removal too. You may get no warning. We do not respond to requests for explanations. We do not reinstate blocked former members.
If you see your posts or comments disappearing or being deleted. Or you start being confrontational, or contradictory. You need to take that as a warning. That is if you want to remain in our associated Social Media Group.
Sometimes a post/thread deletion may be because of you directly. Or you may not have been the target at all. Sometimes when we delete an offending post or thread, all the add-on comments associated with that thread, will automatically delete with it.
Posts that generate arguments, or contradicts information we deem to be factual, your attempts to split hairs, or your attempts to derail a line of thought accidentally or purposely, are the easiest way to get into conflict. This type of info is better sent through our email with your supporting documentation and reference sources.
3. No Non-Subject related posts or replies. All material must be subject related. Don’t create tangent subjects when commenting on someone else’s thread. Do remember our material is strictly about Cold Agglutinin Disease. Not the endless other possibilities out there.
Avoid adding more comments to a “Question” type thread that has already been answered. Don’t repeat what another member already commented. In doing so, people adding on after the fact, often bury the answer. In the process they generate numerous additional notifications to all members.
No Political, Religious, Weapons, or other obvious inappropriate off subject material.
4. All posts, comments, replies, text, Personal Facebook Profiles, or images with text, must be in the English language. We do not have the time, money, or resources to monitor using translators, etc.
5. All posts, comments, replies, text, and images must be Family Friendly. Info any underage person or our grandmothers better be able to view, without getting offended or exposed to something they should not be seeing. This includes images, texts, links, and gestures that may appear on your own personal Profile.
6. Your Personal Facebook Profile/Account must meet acceptable criteria.
This includes everything in #4. If your profile setting “Blocks Admins”, either on purpose or accidentally, initially or even after you are an accepted member, when discovered or reported you will be removed and blocked.
If your viewable profile is vague, generic, no history or track record. You will not be an approved member.
7. No Referring to other websites, groups, etc. (Similar to posting links) If you appear to us as being in the group only for the purpose of Referring people to other sites or social media, or to benefit those other website destinations. Please note. We as well as a few other contributors, go to great lengths to provide this free information for members, at our own personal expense. Donating money, time, and labor. We request nothing in return. Other than your support and donation of information our website may be lacking.
Some members seem to join the group with the sole intention of diverting members to other social media, or website sources. Members that contribute little or nothing to our collective information or group members.
We are not backed by any Pharmaceutical’s or the like, that may be contributing any source of funding or revenue in attempts to source contact information.
While we encourage everyone to seek out better or more up to date information, and we provide referrals to other sources ourselves. We ask you that are here to possibly benefit another source, by diverting members, to please remove yourselves. Or start providing documentation we may be lacking, to better our information. We always need more authors or fact-based contributors.
Otherwise, the effort that was, and is put into this Website. Or it’s associated Social Media. Will cease to be worth our effort.
8. Unless you are a medical professional and provide your credentials, do not attempt to give specific medical advice on this site. You are welcome to tell your personal story. Or your personal experiences. Or your personal thoughts. Do not indicate dosages of medications or supplements.
Do not attempt to sway people’s decisions by downplaying potential medical risks just because something may have worked for you. Or recommending alternate treatments without consulting their own medical professional.
We all know that currently there is no “silver bullet” treatment or cure that can be applied successfully to all CADs.
Additionally, all CADs differ.
Please stick to your story when attempting to help other members. Feel free to talk about your symptoms, treatments, or thoughts.
Refrain from crossing the line and making comments that might sway someone to think any type of treatment comes with little to no risk. Or that some type of supplement/pharmaceutical at a certain dosage, will fix their issue.
We see such comments from time to time and they are really out of line. To the point they are really irresponsible. None of us can know all the medical idiosyncrasies of another person. That is their doctor’s responsibility. Your recommendation, not knowing some other medical conditions, may put someone in serious jeopardy.
Recommending someone discount a pharmaceutical “black box” warning, or the like, because in your own personal experience everything went fine…..well that is downright irresponsible. These types of members will be removed.
This also includes saying a person has to take a particular med or supplement. Or posting, that taking a med or supplement that the patients doctor prescribed, should not be done. Statements that might cause a CAD to either self-medicate or stop medications without consulting with their doctor.
Such information is irresponsible and could be dangerous to another person. Many CADs have serious secondary issues that doctors may be “troubleshooting” unbeknownst to the patient. Many CADs differ. Likewise, their needs for supplements, medications, and treatments, often differ.
Diet/Nutrition can go a long way in improve anyone’s health. People dealing with diseases often times become impacted by low levels of blood test markers. i.e. various Iron markers, Vit B, Vit D, etc. Many can’t compensate by diet alone. All need to follow their doctor’s advice.
All such posts/comments will be removed as found. Repeat offenders that post such info may be blocked/banned without notice.
You are welcome to tell your story, share your experiences, or provide “food for thought” to people that need to run something by their medical professional. But things like dosages may get you banned.
Likewise, members reading Posts and Comments must always take things as information only. Do your own research on any supplement, pharmaceutical, or treatment. Even those recommended to you by medical people. Including “black box” warnings, drug interactions, and side effects. Then with your doctor, discuss and make your own individual decision.
Many decisions you might make, may be based on how anything impacts your quality of life. Do you want to take an aggressive approach or not? Do you want to postpone something hoping a better, more definite treatment, less risky, or new cure, might be found? You personally, with advice from your medical professional, will ultimately need to weigh any risk verses probable benefit. Then come to your own conclusion. Then accept the responsibility for your own decision.
9. No posting of info conflicting with those of our admins.
Such posts often generate questions to the admins, from the person asking the original question. Admins often get flagged/reported about that person from multiple members. The original posting person, even long-term members, are now more confused than when the question was asked. It totally defeats their question in the first place. Undermines all the work, research, effort, and money that goes into our website and social media group.
If you feel our info, responses, are incorrect. Incorrect enough you constantly post opposing information. Please IM us your opposing information rather than tagging a post/reply with contradictory information.
Include your Dr/Specialist source, with your information. Their Name, credentials, contact info, etc. We will evaluate and investigate the information you provide. We may then publish the information on our website, or within our social media, referencing your sources info/credentials/name, as the source.
Members that repeatedly get flagged/reported to admins for this violation eventually get removed/blocked without warning, explanation, or reinstatement.
We get posts flagged/reported to admins by members, on a daily basis. We let many people slide, until we don’t.
From time to time, we will let some members go. We feel, if you have information that is more valid and accurate. Information that you don’t take the time to share with us beforehand. We have freed you up to pursue your own endeavor to develop a website and social media group for your own information and points of view.
It is thousands of hours of work, and thousands of dollars. We wish you the best pursuing your own venture into that.
Ironically, members that seem to gravitate towards this type of conflicting posting, have all contributed zero in both time and money to develop our information.
Note: As previously stated, we normally do not send out a warning on violations. If you are Blocked we do not respond to requests for an explanation, or requests for reinstatement.
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