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Living with Lyme Disease UK

Living with Lyme Disease UK Community Guidelines


Hello LWLD members,

As we wish to encourage this community to have a friendly, non judgemental & respectful atmosphere we hope all members will read & abide by these guidelines.

We have a growing community and ask that to help maintain an atmosphere as described, if you can help by reporting posts/comments that are not considered appropriate for the community according to our guidelines & HealthUnlocked Terms of Use.

LWLD Guidelines

1. Medical Discussion

1.1 If you have seen a research article online you would like to share the link that relates to your post this would be the best way to show that you have read recent evidence to support your discussion. If not, please can you explain whether the points you have raised are from experience or personal opinion

1.2 Please do not post links containing medical information that may not be from reputable sources and be aware of sites who use information to sell their product. Advertising that is presented in a way it is trying to make false claims will be deleted and any links as per 2.1 Any doubts, please speak to an Admin via Private Message with details of the link.

1.3 It is requested that you do not post the details of doctors, specialists or other health professionals on the community (with the exception of names of Specialist Consultants in the area and Authors of books or research articles).

Please use the Private Message facility for any conversation about recognisable Healthcare Professionals. Under no circumstances should the names of Health Professionals be posted on the open board as per AFMCG & Health Unlocked guidelines. Under no circumstances should you name a health professional in order to post defamatory comments as per AFMCG & HealthUnlocked guidelines.

1.4.If you post a paragraph from an article or research please give the link as a reference. Please be mindful to acknowledge the author’s work as per copyright laws.

1.5 Please note members claiming to be Health Care Professionals may not necessarily have any professional qualifications and therefore any advice given should not be relied upon as accurate information.

1.6 We are highly aware of the controversy surrounding Lyme Disease & ongoing symptoms and the debate surrounding UK testing. We are happy for you to mention that you feel your negative test is possibly a false negative but we are sorry we cannot allow any defamatory comments against NHS but you can mention the flaws in testing in general.

1.7 Morgellons Discussion - This has now had some research that this awful skin condition may be associated to Lyme Disease or it's co-infections. Therefore we will allow this to be mentioned however any other theory, conspiratory or otherwise will be deleted at this time due to lack of research in this area.

1.8 Petitions regarding any subject surrounding Lyme disease are allowed with a small excerpt and link for people to sign. Please add to Petition Topic so they re easily found.

2. Posts

2.1 Promotion of products & services is not allowed as there are plenty other ways to advertise on the internet.

2.2 Please do not post Internet sites selling medications without prescription. Members trying to sell unwanted medication is also not allowed on this community.

2.3 Please do not ever verbalise any complaint you may have openly on any of Living with Lyme Disease UK sites, ie HealthUnlocked, Website (TBC), Twitter or Facebook.

2.4 LLWD members please treat all information as private & confidential. Please be aware about your own privacy here on this open community & lock posts to the community where necessary. Here's is a link to a post containing all the information you need;

2.5 Please remember it is advisable not to give out any personal information & LWLD are not responsible for this sharing of this information whatsoever. Please use private messages to relay this information, however it is done so at your own risk.

2.6 Please be polite, respectful & participate in the community by sharing experiences that may help others.

LWLD will edit and/or delete any posts or comments as per 2.10 & HU Terms of Use

2.7 No spam allowed across the whole site including the private message facility. Any reports of any unwanted messages by a member may lead to a temporary or permanent restriction. HealthUnlocked will also be notified and this could jeopardise your HU account across all communities.

2.8 Do not solicit members to your Blog or Vlog for your own purposes. If wish to add a link to a website, Blog or Vlog of your own please private message Admin first to discuss whether it is appropriate & within the rules/guidelines.

2.9 Posts must not contain defamatory comments about any member or LWLD Admin /Volunteers.

2.10 Any post containing offensive, sexist, racist and/or abusive content will be edited or deleted. No foul language please and if you wish to express yourself using it, then it should be disguised politely as possible using *Asterisks ie Bl**dy . The use of acronyms is allowed.

2.11 Please be mindful of using Capitals as it is considered to represent shouting.

2.12 No criticism of any spelling & grammar is accepted as members should be tolerant of others

2.13 Please stay on topic. Please make sure your posts are relevant to the LWLD HealthUnlocked Forum. Admin can reserve the right to delete posts that they feel are not within the remit or remove sections of text that can be alternatively sent via the private message facility.

2.14 LWLD welcomes Guest Post/s by Admin from other HealthUnlocked Communities and other sources that can keep our members informed. LWLD have guidelines relating to the content that can be shared within Guest Post/s. So, if you'd like to share comprehensive information about another health condition, please contact an Admin before adding a Guest Post to the LWLD HU Community.

2.15 LWLD does not take responsibility for any third party websites OR links found from visiting our HealthUnlocked site

3. Posts must not include the following as per HU Terms of Use

3.1 contain obscene, offensive or defamatory content of any person

3.2 promote any discrimination based on race, sex, religion, nationality, disability, sexual orientation or age

3.3 Abusive content, anything considered as harassment or any Cyberbullying will not be tolerated.

3.4 Any pictures considered offensive or inappropriate, please see section 4.

3.5 NO foul & obscene language of any type. This is not welcome - even in jest, swear words may be edited to contain *Asterisks ie Bl**dy . The use of acronyms is allowed.

3.6 Have any religious, racial or political (with the exception of Disability related issues and information about Lyme Disease please see 1.6). There are other forums on the Internet suited for exactly this type of discussion, and ask that you please conduct such discussions on those forums.

3.7 Underage users meaning under 16's are not permitted to join, post or comment within the community and will be restricted & have their HU account removed as per HU Terms of Use.

4. Posting Pictures

4.1 Photographs/Images should not contain any of the following as per section 2

4.2 Images must not be subject to copyright

4.3 LWLD will not permit images of minors (under the age of 16) to be posted unless they are stock images from sites offering free usage with no copyright.

4.4 Images are not to include any advertising, logos or website links

4.5 LWLD ask that members only post one picture within a 24hr period due to the amount of followers too many picture posts can sometimes flood the community.

4.6 Images of yourself or family member are posted at your own risk (no minors allowed as per 4.3), as LWLD takes no responsibility to the content you contribute to the community. Please refer to the following post about security, safety and information about how to lock posts;

5. Cyberbullying & Trolling

5. We have a ZERO Tolerance on Cyberbullying and Admin reserve the right to send a warning message, temporarily or permanently ban any member who has been found to be involved in this in any way shape or form. HealthUnlocked will also be notified and this could jeopardise your access to your HU account across all the communities.

HU 'Help' Link provides the following information about Cyberbullying & Trolling, please see link;

Please Note:

When joining LWLDUK HealthUnlocked you are entering into an agreement with the administrators to abide by the above Rules & Guidelines.

We reserve the right to restrict any member from the group if we feel a major breach of any of these rules has occurred. Please abide by these rules to protect all members & to ensure the success of our group.

What happens if I breach any of the LWLD and/or HU guidelines?

Working together as a Community

If a post needs a editing to maintain the guidelines, LWLD Admin will send a Private Message explaining the reasons for the edit. It is assumed that members will co-operate with the Admin & Volunteers within the community to resolve these issues for the benefit of all.

Any member breaking the rules on a regular basis or posting threads/comments that appear to be purposely breaking the guidelines will be deleted & this could lead to a permanent restriction of your account and subsequent ban of ALL HealthUnlocked sites

Any defamatory comments towards LWLD Admin /Volunteers will be deleted immediately. We ask that any issue you have with LWLD be discussed via email or the Private Message facility on HealthUnlocked in a calm & adult manner.

Please remember to content on this site does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. Views expressed are those of individuals and not of Living with Lyme Disease UK

Many Thanks for your co-operation :)

Please see these links for HealthUnlocked Terms of Use & Guidelines;


HU Terms of Use:


Any information, statements or opinions contained in documents, any of Living with Lyme Disease UK sites or online communities are not intended to be an alternative to seeking professional help and advice.

Living with Lyme Disease Group UK aims to provide support and information for interest only. Members should note that the responsibility for their health lies solely with themselves and we would always recommend you seek medical /professional advice at all times.

Important: Living with Lyme Disease is NOT associated with any UK charities for Lyme disease and are an independent group providing support for those with Lyme or suffering ongoing symptoms of Lyme.

Lasted updated: Sept 2018

Due for review: Sept 2019

NB These guidelines can be updated at any time with or without notice to moderate & maintain a helpful community. This is an information post, therefore replies are switched off

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