could we have a subforum devoted to our experiences with doctors?

[progranulindefect]

I am coming from another website focused on frontotemporal lobe dementia. over there a member gave her experience with various doctors and how she had finally found an excellent one. she advocated starting a rating system for doctors. a moderator shut that down. could we have a subforum devoted to our experience with doctors, actually naming names so people would know who they might want to avoid? The doctors could be those that deal with any type of dementia, not just ftd or alz.

[Julie G]

Good morning, Pro. You are welcome to share your experiences with physicians in the Our Stories subforum.

[progranulindefect]

at least you have a dedicated area where people could search for others' experiences with doctors. the other forum i mentioned is afraid of lawsuits. they said that giving one's opinion of a doctor might leave the whole website open to a lawsuit because the website (i guess that means moderators) could be seen as tacitly promoting that opinion of a doctor. and if the opinion were negative, a doctor might want to sue. of if the story were positive, and another member had a very bad experience with the doctor having the positive review, that might open up a lawsuit as well. why isn't apoe4.info afraid of lawsuits? were lawyers consulted about allowing members to publicly name names of doctors they had either good or bad experiences with?

[Julie G]

The only time we push back on content is when our Community Guidelines are violated. The voices of our members remain otherwise uncensored. Individual members represent themselves only and not our board of directors or the community as a whole.

[KDDD]

at least you have a dedicated area where people could search for others' experiences with doctors. the other forum i mentioned is afraid of lawsuits. they said that giving one's opinion of a doctor might leave the whole website open to a lawsuit because the website (i guess that means moderators) could be seen as tacitly promoting that opinion of a doctor. and if the opinion were negative, a doctor might want to sue. of if the story were positive, and another member had a very bad experience with the doctor having the positive review, that might open up a lawsuit as well. why isn't apoe4.info afraid of lawsuits? were lawyers consulted about allowing members to publicly name names of doctors they had either good or bad experiences with?

Progranulindefect, thank you and the moderator here for interest in a special page dedicated to named doctor/clinic accounts. For the sake of caregivers and patients, I strongly hope this will happen. Far too many people are placed in grave risk by the medical system of trial and error of doctors/clinics. Many if not most medicos are not really dementia & caregiver sensitive, even some claiming to be but do not even follow standard operating procedures for diagnosis and treatment. The result? Medical mistreatment, serious stuff.

An experience is just that - one personal honest account that helps others make an informed choice in a democratic system. Dialogue can then be established if more info is desired.

I've spent five years in No-Mans' Land hell because I could not find this type of information about dementia sensitive doctors and clinics. When the first failed us, I was had nowhere to turn. Resulting stress contributed to my nearly losing my life with a condition that can be terminal for people my age -- and, of course, unable to look after my H with dementia. I've watched other caregivers suffer in similar ways because their specialist teams are not providing needed support. Thus, I feel strongly about prevention in this case: preventing others from this critically important info. Yes, forums that provide warm fuzzy sympathy are great and have their place. Trial and error might be part of the system. It is immoral in my opinion, however, to be subjected to trial and error because named medicos are banned, so information is lacking for informed choices. Thank you once again.

[Stavia]

KDDD, thank you for your honesty. These are our community guidelines

The science and understanding behind the APOE-ε4 allele is evolving. ALL theories and relevant discussion are welcome. Feel free to present information. Be prepared to back-up your viewpoint with personal or clinical experience, your physician’s perspective, or published medical research. Kindly provide the URL when applicable. Back up unequivocal assertions with research. If your assertions are not proven, acknowledge that they are your opinion. Refrain from offering direct medical advice to our members. You are welcome to share any strategies you practice or that you recommend for your patients with accompanying evidence. We welcome members of our community to correct factual inaccuracies. Be aware that much of what we discuss is equivocal. Simply acknowledging that often goes a long way towards balancing a very biased perspective. Disagree with ideas, NOT people. This applies not only to members of our community, but also to the various expert opinions shared. A polite and respectful tone is a MUST. Some here are suffering. Our primary purpose is to support one another and learn from one another.

This is a moderated forum for anyone seeking or sharing information about the APOE-ε4 allele and its associated conditions. Scientists and laypeople alike are welcome. Refrain from posturing as an expert. Simply identify yourself by name/pseudonym, position, and education if applicable. Please remain respectful of other users at all times. All posts and private messages should be professional and courteous. You are not free to attack, degrade, insult, or otherwise belittle members or the quality of this community ever. It does not matter what title or power you hold. Do not self-promote or attempt to sell any goods to our members. Unsolicited advertisements for goods, services will not be permitted.

Respect the privacy of our members. While the Creative Commons License that we use allows non-commercial use of the material we create together here, be sensitive to the personal nature of some of what we share. When in doubt as to the wishes of an author whose words you would like to use in another context, ask, and respect the response.

Effective date: November 1, 2013.
Last update: October 22, 2016.

You are welcome to post in the "our stories" section of your experiences as Julie already said. We do not censor any member's views unless they breach our guidelines. However it is not one of our core purposes to be a repository for a list of acceptable and not-acceptable doctors.

Here is our mission statement

ApoE4.info, Inc. is dedicated to understanding the APOE-ε4 gene and how it impacts health. We do this by:
•providing basic information about the APOE-ε4 gene
•running an active forum and Facebook page
•acting as a contact point for anyone interested in the APOE-ε4 gene
•pursuing research about the APOE-ε4 allele to mitigate related negative health effects including but not limited to Alzheimer’s disease and cardiovascular disease
•connecting researchers and carriers of the gene
•organizing regular APOE-ε4 Conferences
•working with the media to inform and educate health professionals and the public about the APOE-ε4 gene

[Gilgamesh]

This is something that could be tied in to our wiki page on APOE-aware healthcare practitioners:

https://wiki.apoe4.info/wiki/APOE-aware ... ctitioners

Maybe share experiences on the forum, and then put up contact info and a quick description of the practitioner in question at the wiki?