|LAMLine -- LAM Action's Email Patient Support Group|
LAMline is an email support group run by LAM Action, a charity registered in England and Wales (no. 1167610). It is an active, friendly and supportive chat-line primarily for those with LAM, which offers discussions and support via email. Some family members and friends of those with LAM also participate on LAMline.
All posts and comments on LAMline reflect the views of the author of that email. LAM Action will not be held responsible for the content of any subscriber messages or information posted. LAM Action is not responsible for any third-party disclosures of personal data, including sensitive personal data, collected through LAMline beyond LAMline subscribers.
|Using LAMLine and User Guidelines|
To use LAMline, you need to be a subscriber. You can subscribe to LAMline, or change your existing subscription, in the sections below.To post a message on LAMline, which will be seen by all subscribers to LAMline, send an email to firstname.lastname@example.org.
Please note that when you send a message, all other subscribers will be able to see your email address.
LAMline’s User Guidelines
Know and follow the rules
Please carefully read these guidelines and ensure your postings are consistent with them. These guidelines will be periodically reviewed and updated. Any changes or amendments will be announced on LAMline.
Always be fair and courteous to people on LAMline and in posting or responding to statements. LAMline is a platform for peer support. Please focus on supportive and sensitive discussions and always be sympathetic and mindful to other members’ feelings. Please also keep in mind that subscribers range in age and experience. In particular, some people on LAMline will be newly diagnosed, whilst others will have lived with LAM for many years. Please be sensitive to this diversity of subscribers, and their feelings and opinions, and to how others might interpret what you say.
As a supportive platform, we suggest posts in which you:
We expect that people will respect the dignity of others and not harass, degrade, bully or embarrass others. Statements and other behaviour that threatens people or has the potential to intimidate, exclude, silence, upset or alarm others is not allowed on LAMline. We ask that you do not swear or use language that others might find offensive.
Be honest and accurate
Make sure you are always honest and accurate when posting information or news, and if you make a mistake, correct it quickly. Similarly, if you see a message from another subscriber that you think is inaccurate, we encourage a respectful exchange of information in an attempt to clarify the mistake or inaccuracy.
Never post anything that is unlawful, misleading, discriminatory or fraudulent.
Sharing links to publications and other websites
Whilst it is helpful to be able to share information from other websites or publications, this can result in inaccurate or irrelevant information being shared. Please be mindful of the information that you share. If you post information from an organisation, news source or other third party, please ensure that it is a reliable source and include in your post the context or reason for which you are providing the information. Sources that we consider to be reliable include LAM Action, the LAM Foundation and the British Lung Foundation.
LAMline is not intended to be a platform for providing medical advice and posts are not monitored by a medical professional. It is inevitable that some messages on LAMline will contain information regarding subscribers’ diagnoses, symptoms, treatment and other medical information. Please ensure that you only share and discuss your own experiences with LAM and make it clear that you are talking from your own experience when providing information or tips to other subscribers.
Please also be mindful that one person’s experience of LAM might differ significantly from someone else’s. Any advice that you receive from an individual through LAMline does not constitute professional medical advice, even if it is posted by someone who claims to have a medical background or extensive experience in this field. You should discuss your treatment of LAM with a trained medical professional. You can find additional information about the management and treatment of LAM on LAM Action’s website and from the National Centre for LAM in Nottingham. In an emergency, you should contact 999 and you should not delay seeking emergency medical treatment if you are concerned about your health.
Posts on LAMline are to be treated as confidential and not shared outside of LAMline. Do not copy third parties on any of your emails, share any LAMline subscriber’s name or email address or post, or forward emails on LAMline to anyone outside LAMline.
We expect subscribers to take personal responsibility for their participation in LAMline, self-moderate their own contributions and, to an extent, moderate LAMline collectively. LAM Action does not actively moderate LAMline.
If you see a message that you believe is inconsistent with our guidelines (for example, it contains factual inaccuracies) we suggest a constructive dialogue on LAMline with the author of that message. For example, you might want to request clarification from the author or describe other ways in which you find their message problematic. However, if you are not comfortable approaching the author or think that someone is consistently violating our guidelines, then we encourage you to let us know by contacting our co-ordinator, Jill Pateman, at email@example.com.
The consequences for violating LAMline’s guidelines vary depending on the severity of the violation and the person's history on LAMline. As described above, we encourage a respectful exchange of ideas and information amongst subscribers if you think someone has posted inaccurate information or otherwise acted in a manner inconsistent with our guidelines. LAM Action also may decide to take action directly, if we think it appropriate to do so. For example, LAM Action may warn someone for a first violation, but if they continue to violate the policy, we may restrict their ability to post on LAMline or remove them from the platform. LAM Action may also notify law enforcement when we believe that there is a genuine risk of physical harm or a direct threat to public safety.
|Subscribing to LAMLine|
By subscribing to LAMline you confirm that you have been diagnosed with, or are concerned that you may have, LAM or you are the family member, partner or friend of someone in that situation.
Subscribe to LAMLine by filling out the following form. You will be sent an email requesting confirmation, to prevent others from gratuitously subscribing you. Once confirmation is received, your request will be held for approval by the list administrator. You will be notified of the administrator's decision by email. This is also a hidden list, which means that the list of members is available only to the list administrator.
For LAMline Administrators