This website is provided and supported by Action for M.E.
To subscribe to e-newsletters or other services or to participate in many of the interactive features on the site, you will be asked to register your name and email address.
This information will be stored according to our data protection policy.
Our website has been designed to be a friendly, helpful and supportive environment for all people affected by M.E.
In order to maintain this environment, we ask all users to abide by the following rules.
Legal
1. You must use this site for lawful purposes only
2. You must not use this site in a manner which infringes the rights, or restricts or inhibits the use of the site by any other user, or by any representative of Action for M.E., or by any third party.
3. Nor should you infringe intellectual property rights, or post anything that risks prejudicing ongoing or forthcoming court proceedings, or breaks any known court injunction (see ‘Contempt of Court’ - definition 1 in Appendix A)
4. You must not engage in copyright theft (see definition 2 in Appendix A).
You should only submit material that is your own. On submitting content or comment, you warrant to Action for M.E. that your submission is your own original work and you acknowledge that any breach of this may cause us damage or loss and you agree to indemnify us in full and permanently against any third party liabilities, claims, costs, loss or damage we incur as a result of including material you submit to us, including consequential losses.
5. You must not post content that is libellous towards any individual or organisation (see definition 3 and related examples in Appendix A)
Safe environment
6. Please remember that people of all ages read and contribute to this website, however, please note that our forums are for those aged 18+ only. We suggest that anyone below this age joins the Association of Young People with M.E. (AYME), which has its own forums - its free.
7. Please avoid posting any personal information. You should avoid publicising your own or anyone else's contact details including address, place of employment, name of school/college/university, landline or mobile number, email address, etc. This is for your own safety and that of everyone who uses our website.
8. Our forums are not moderated by a doctor nor does the moderator have access to medical advice. Every person is different so the medical experiences of one patient may not reflect the needs or circumstances of another. On any issue relating to health or a change in symptoms we would urge users to contact their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 (or Scotland - NHS Inform or 0800 22 44 88, Northern Ireland – NI Direct) or in an emergency call 999.
9. If you are experiencing suicidal feelings do please call the Samaritans on 08457 90 90 90.
Respect for others
10. Please post messages in a way that is respectful of other people. You must not post any material that is defamatory*, obscene, indecent, lewd, pornographic, violent, abusive, insulting, threatening, harassing, harmful, obscene, profane, blasphemous, sexually oriented, racially offensive or discriminatory or which might incite people to commit any crime or is otherwise unlawful or illegal. Any such posting will be removed without warning.
* please see definition 3 in Appendix A and point 5 above under ‘Legal’
11. Personal attacks or bullying* of any kind will not be tolerated, be it directed at other users, or any person with M.E., carer or professional, including any current, former, potential or future Action for M.E. employee, volunteer or trustee. Flaming (hostile and insulting interaction between people), trolling (visiting websites and forums to deliberately instigate arguments) or abusing in any way will not be tolerated. Any such postings will be removed without warning.
* "Cyberbullying involves the use of information and communication technologies such as e-mail, cell phone and pager text messages, instant messaging (IM), defamatory personal websites, and defamatory online personal polling websites, to support deliberate, repeated, and hostile behaviour by an individual or group, that is intended to harm others." Bill Belsey, Cyberbullying Expert – overcomebullying.org
12. The use of swear words is not acceptable. Please note that this also includes the use of @,#,* etc to replace certain letters in words.
Fit for purpose
13. Posts should be made in the relevant forum/topic area. Please read any topic descriptions before posting. We reserve the right to edit out bad language (see 22 below).
14. Please post in a way which is consistent with ‘normal’ writing. That is, people should not post excessive numbers of emoticons (smileys, graphics etc), large, small or coloured text, etc.
Similarly, please do not SHOUT or use excessive punctuation (eg.!!!! and ????), in topic titles or posts.
15. Please use an appropriate, descriptive title when posting a new topic eg. “Benefits advice needed” rather than "Help me!"
16. Please do not advertise or promote products or services.
Letting people know if you have had a good or a bad experience of a product or service is OK but please note: by allowing such a posting, Action for M.E. is not guaranteeing, approving or endorsing the product, treatment or service mentioned.
17. Spam (ie. the abuse of electronic messaging systems to indiscriminately send unsolicited bulk messages) is not tolerated under any circumstances.
18. If you wish to make a complaint or ask a general question about Action for M.E., please use the feedback form at the bottom left of every page, so that we can ensure that it gets to the right person for a response. General questions or complaints which are posted in unrelated forum discussions will be removed by the moderator and redirected to the appropriate member of staff for a response.
19.Multiple identities/registrations are not acceptable on our forums.
Forum moderation process
20. Topics/threads/posts which break these rules will be deleted.
21. We want to keep our various forums on topic and so reserve the right to move threads between forums if they would be more appropriately situated somewhere else, eg. if a peer support thread is started in the policy area. When this happens, we will notify users who have posted on the threads in question.
22. Topics or threads may be removed if they include some inappropriate comments which cannot be deleted individually without affecting the meaning of subsequent posts. If, under these circumstances, you were not one of the people who contravened our terms please do not feel this reflects badly on you.
23. In some cases we may edit users’ posts to remove offensive wording etc. Where this occurs we will comment to say we have done this.
24. In certain cases, eg. where debate becomes heated dispute, moderators may post on a thread to ask that there is no further comment on the topic. Posts which appear in the thread thereafter will be deleted.
25. When considering borderline content, moderators will weigh the value of freedom of expression against the value of providing other users with a safe environment in which to express their views and the need to safeguard the charity’s online space against legal action.
26.Moderators will consult with senior colleagues if they cannot decide if a contribution is acceptable or if a debate has moved beyond heated discussion.
Our rights
Action for M.E. reserves the right to:
27. Edit or remove any post which contravenes our terms, at any time eg. to remove offensive content.
28. Terminate prolonged discussions between a small number of participants if we feel that this is having a detrimental effect on other people’s experience of the site.
29. Bar any individual who breaches our terms and conditions, abuses our web functions or facilities or persistently submits inappropriate material at our sole discretion. Permanent bans are usually a last resort and thought is given before implementing them but we will enforce bans if people continue to break these rules.
30. Change these terms and conditions at any time by posting changes on the website.
31. Please be aware that under certain exceptional circumstances Action for M.E. could be legally obliged to reveal your registration information and/or IP address to the authorities.
32. Sometimes we may wish to publish or forward to third parties something which you submit for publication on our website or send to us electronically or in other formats for different purposes. It is our policy to try, whenever possible, to ask permission before reproducing any material submitted to us. However, unless you explicitly state NOT FOR PUBLICATION OR REPOSTING, by submitting material to Action for M.E. you grant us a non-exclusive, perpetual, royalty-free, worldwide licence to republish any material you submit to us in any format, including without limitation print and electronic format.
Messages posted on our forums express only the views of the author of the message and do not necessarily represent the views of Action for M.E.
Your use of this site constitutes acceptance of these terms and conditions.
Appendix A
1. Contempt of Court
A party will be liable for contempt of Court if they wilfully or deliberately breach a Court order or injunction. For example, if a party has knowledge of an injunction prohibiting the publication of specific material, they will be liable for contempt of Court if they proceed to publish that information on the internet. Contempt of court is "quasi-criminal" in nature, and sanctions for contempt of court include imprisonment and fines.
2. Copyright
The main purpose of copyright law is to reward authors and artists for the creation of works, where that person has expended independent effort to create the copyright work. Broadly speaking, copyright law protects works of the following type: literary (eg. books, newspaper articles, online articles, computer programs), artistic (eg. photographs, paintings, sculptures), dramatic (eg. theatre performances), musical (eg. tunes that have been recorded in some form), sound recordings and films.
Copyright law prevents third persons from copying the copyright work unless they have the permission of the copyright owner. Copyright seeks to protect the form of expression, rather than the ideas conveyed. For example, the offence of copyright infringement can be committed by copying and pasting materials produced by a third part, or by reproducing the words that someone else has used. It is a common misconception that it is permissible to copy a small part of a copyright work (eg. 10%), but this is not necessarily correct and will depend on the facts of the case. Another misconception is that copyright infringement can be avoided by "attributing" the copied part to the original author, but again, only in a limited number of circumstances will this avoid a finding of copyright infringement.
No registration formalities need to be observed in the UK for a work to receive copyright protection. Protection automatically arises when the work is recorded. Copyright protection typically lasts for the life of the author plus 70 years.
Please also see ‘Copyright and disclaimers’
3. Defamation - Libel
Defamation occurs when the defendant publishes a statement which tends to lower the claimant in the estimation of right-thinking members of society. Defamation therefore has three requirements:
1. the statement must be defamatory (ie. the statement must have a negative impact on the claimant's reputation);
2. the statement must identify or refer to the claimant; and
3. the statement must be published by the defendant to a third party.
Defamation is divided into two sub-categories: libel and slander.
Libel is the publication in permanent form of a defamatory statement (eg. a newspaper article). Slander is the publication of a defamatory statement in transitory form (eg. a spoken statement). It is generally accepted that bulletin board exchanges on the internet are technically libel rather than slander.
Ultimately there are shades of grey in this area of the law and so, in order to protect the charity, we will remove any statement that we feel is potentially defamatory. Some examples to illustrate how we’ll recognise this follow…
Examples of potentially libellous statements
1. “[NAME] is personally responsible for physically damaging a large number of M.E. sufferers who have been enticed to pay out [AMOUNT] to do the [PROGRAMME] and who were as a result made much more sick than they were before.“
This is potentially libellous as it identifies an individual and the accusation regarding making people more sick is highly likely to affect the professional reputation of the individual in question.
(Note that the same applies to organisations – and a name doesn’t necessarily have to be given to identify)
2. “Positivity is not keeping us alive or roofs over our heads or food in the cupboard - what a rotten country to allow media stooges to aid and abet conmen/women like [NAME] who damage M.E. sufferers for profit.”
This comment is potentially libelous due to the identification of an individual (as above) and words such as ‘conmen’ and ‘damage M.E. sufferers for profit’ – which have the potential to negatively affect the professional reputation of the individual in question (as above).
3. “When it has come to the crunch, [NAME OF ORGANISATION], for instance, seem to be putting jobs, careers and money before the welfare of their patients. So much for their much vaunted and publicised medical ethics, which are nowhere in sight as hundreds of thousands of sick and disabled are medically abused.”
This comment is potentially libellous due the words 'medically abused.'
Please note that in many cases, it is the particular choice of wording which makes a statement potentially libellous. Please bear this in mind to avoid deletion of your posts.
Examples of acceptable comments
1. “We are justified in complaining to the British Society about [NAME]’s comments about M.E. sufferers on a blog.”
No wording about named individual which could damage reputation.
2. “Yes he certainly wishes to undermine any valid critisism of [PRODUCT/TREATMENT] that's for sure! He’s good at twisting things I’ll give him that. Manipulative words he seems very good at.”
No individual identified. Also - saying someone is good at manipulative wording is not necessarily potentially damaging to their reputation.
3. “[ORGANISATION] professionals ignore what we say and what we write.”
More an expression of opinion than a legally damaging assertion.
Acknowledgements
Action For M.E. would like to thank Allen & Overy LLP for legal advice in relation to these terms.