Material on this site is intended primarily for personal use.
Parliamentary copyright images are reproduced with the permission of Parliament and are subject to Parliament’s terms.
Scottish Parliamentary images are © Scottish Parliamentary Corporate Body 2010 and are subject to their copyright terms.
Professional stock library photographs are used for illustrative purposes only and any person depicted in the content of an istock photograph is a model. Copyright for these photographs is held by the photo library and the relevant artist.
Copyright in all materials and/or works within this website remains with Action for M.E. and/or other copyright owners as specified.
However, unless otherwise stated, permission is granted to copy or quote articles (not images) from this website for non-commercial purposes, provided appropriate credit is given to the author (where mentioned) and to Action for M.E., quoting Action for M.E.’s website address.
Material must not be selectively quoted, or used out of context, in a way which changes its meaning or conveys a meaning or emphasis not intended by the author.
All photographs, illustrations, video and audio recording or other multimedia presentations are subject to copyright, either by individual suppliers, Action for M.E.’s or other third parties. Use of any photograph, illustrations, video or audio recording or other multimedia presentations, by any other organisation or individual, without explicit written permission from Action for M.E., is strictly forbidden.
If you think that any of the information on our website, including photographs or multimedia items, offends the copyright of a person or organisation or you have any other queries, please contact us.
Action for M.E. recognises the importance of accurate information and endeavours to ensure that the information on this website is as accurate, reliable and up to date as possible. However the charity is limited by the resources it has available. As a result, Action for M.E. cannot guarantee that the website is always accurate, complete or up to date and visitors who use this website and rely on any information do so at their own risk.
This content of this site is provided ‘as is’ without any representation or endorsement made and without warranty of any kind, whether express or implied.
In no event will Action for M.E. be liable for any damages including, without limitation, indirect or consequential damages, or any damages whatsoever arising from the use or in connection with the use or loss of use of this website, whether in contract or in negligence.
The charity does not warrant that the functions contained in this site will be uninterrupted or error free, that defects will be corrected, or that this site or the server that makes it available are free of viruses or bugs or represents the full functionality, accuracy and reliability of the materials.
This website at www.actionforme.org.uk contains links to other websites. Action for M.E. is not responsible for the accuracy of material on linked websites, and does not necessarily endorse the views, products, treatments or services within them.
Links are provided for information only, so that visitors to our site can find out more information on a subject or service. We always check that links work before posting them on our website but sites do move, experience technical difficulties or close. We cannot guarantee that links to external websites will work all of the time.
Please do tell us if you find a link does not work.
Entrants must be 18 or over.
Winners may be required to take part in or co-operate with publicity. Winners agree to keep confidential any knowledge about Action for M.E. charity, its organisation and its personnel received by them as a result of the free prize draw.
No cash alternative is available and all prizes are non-transferable and non-refundable. Prizes are not for resale and cannot be used for commercial use or use in further promotions.
The prize winner will be selected at random by Action for M.E. Their decision is final in every situation and no correspondence will be entered into.
Action for M.E. will not pass your personal details to any other organisation without your permission, except for the purpose of awarding your prize if necessary.
Use of false name or address, ie. name, by which the entrant is not usually known, will disqualify them from receiving any prize.
Action for M.E. reserves the right to amend these rules at any time.
Entering implies acceptance of these rules.
Action for M.E. uses social media to interact and engage with the M.E. community as well as raise awareness of M.E. and make news related to the condition more accessible. Our organisation uses a number of platforms to do this, the main ones being Facebook, Twitter, LinkedIn and YouTube.
We want our social media channels to be safe, friendly space for our users, and ask that you keep your comments, posts and responses on-topic and respectful. By using our social media channels you agree to the following guidelines:
1. engage in friendly discussion/debate
2. share your views and respect the views of others
3. keep your language polite and appropriate for everyone to see.
1. post any material that is defamatory (please see definition 3 in Appendix A and point 5 above under ‘Legal’), 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.
2. harass or attack staff, volunteers, professionals or other members of the public
3. impersonate Action for M.E. accounts or any employee of the organisation
4. deliberately provoke others or intentionally disrupt conversation
5. use aggressive, inflammatory, hateful language, racism, bullying, or name calling
6. spam or troll any of our online channels. If we believe you to be doing so we will block your access to our channels
7. turn the illness into a competition. Telling other users they don’t have M.E. because of their symptoms, implying that they are not sick enough, criticising others for recovering, and other such statements will not be tolerated
8. engage in personal attacks or bullying of any kind. This sort of content 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 our channels to deliberately instigate arguments) or abusing in any way will not be tolerated. Any such postings will be removed without warning and you could be banned from accessing our social media channels. Cyberbullying expert Bill Belsey says: “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."
1. remove spam and unauthorised advertisements
2. reply to your comments at our discretion
3. reserve the right to delete posts at our discretion
4. keep our 'Profanity Blocklist' to strong and therefore Facebook will automatically remove any posts/comments that involve any level of profanity.
Please note: the appearance of external links or comments on our pages does not constitute official endorsement on behalf of Action for M.E.
Thank you for helping us keep our social media a safe and friendly environment.
Action for M.E.’s peer-support forums for adults offer the chance to discuss ideas, share knowledge and experiences of M.E., create a sense of community, meet other people affected by the condition and share peer-support. All our forum users forum users are asked to respect each other and their rights.
While we endeavour to ensure that the information contained in our forums for adults is accurate, appropriate and up-to-date, you should note that content is provided by users and not Action for M.E.
We ask that each user registers one account only. An exception to this would be an adult with M.E. (who wants to join M.E. Friends Online) who also has a child with M.E. (and so also wants to join our Parents and Carers Forum).
When you register, you will be asked to provide your full name and email address, and to choose an appropriate, anonymous username (ie. not your real name or email address, and not one that contains swearing or links to other sites/organisations) for use on the forum.
You will be able to use the forum as soon as your account has been approved, which may take up to four working days, and is up to the moderator’s discretion. We are a small team and apologise in advance for any delay; please be assured we will get to it as soon as we can.
If you wish to leave the forum we can delete your account at your request or you can delete your account yourself. Your personal information (eg. username and email address) will be removed from our database. All posts will remain on the forum unless in exceptional circumstances.
Our forums are focused on peer-support, and we appreciate our users’ efforts to keep them welcoming, supportive and caring. To support this, we have put together a list of dos and don’ts for you to bear in mind about when posting.
Only registered users can post. Your username will appear above your message, along with the title of the thread (if you’re starting a new thread; if you are replying to an existing thread, please make sure your message stays on topic).
Protect your personal information. We ask you to be careful not to post information which would allow you or others to be identified, or make sensitive information, eg. about health or personal circumstances, available in a way in which might identify you or someone you are posting about. Please be aware that you do not have to name a person in order to identify them, if sufficient other information is given.
Do you really need to share your contact information? While we absolutely do not advise it, we understand we cannot stop users from sharing their contact information. However, users must note that Action for M.E. is not responsible for any activity that occurs outside of the forum.
Information shared on the forum does not constitute medical advice. Everything on our forums for adults is for information purposes only. It does not constitute medical, legal or professional advice and should not be treated as a substitute for the advice of your own doctor or any other health care professional. You should always consult your healthcare professional if you are in any way concerned about your health.
Please be courteous and respectful. We ask forum users not to post any content that is unlawful, illegal, fraudulent, offensive, threatening, abusive, bullying, harassing, tortuous, indecent, obscene, defamatory, invasive of another's privacy, or discriminatory (racially, ethnically, sexually, religiously or otherwise). An example of such behaviour would be repeated posting of critical or derogatory messages that focus on other forum users, the moderator, or M.E. organisations, including Action for M.E.
Please be mindful of your language and approach. We ask our users to be tactful, respectful and non-judgmental. Remember everyone on the forum is unwell and may be dealing with cognitive difficulties. Forum users may sometimes post something that you do not agree with, or differs from your experience. On rare occasions this can cause disagreements or upsets, even though this was not their intention. While hostile or threatening messages or invasions of another’s privacy will not be tolerated, it is OK to disagree so long as you respect the opinions and experiences of others.
Please post in English. Whilst we welcome people of all nationalities, we are a UK charity and so ask you to please post comments in English. Please also try and limit your use of abbreviations or ‘text speak’ – it can be difficult to read and some users might not understand you.
Help us keep the forums safe and supportive. We want the forum to be a safe place. If you feel you are being threatened or personally targeted in a way that you cannot resolve yourself, or are concerned about inappropriate content, or are receiving unwanted private messages from another forum user, please use the ‘Report this Post’ button (see below) or email email@example.com
Please respect the moderator. Their job is to support users to follow these guidelines so that everybody gets to have their say. Personal attacks or defamatory comments aimed at the moderator will not be tolerated.
users can raise concerns about any post that they think is not in line with
Action for guidelines via the ‘Report this Post’ button.
report will be sent to a moderator who will review the post and decide what
action to take. Options will include: no action necessary, removing the
reported post and, though this happens very rarely, banning the user. Decisions
by Action for M.E.’s moderators are final, and please remember that they are
only available to moderate posts during office hours.
Don’t report every post you disagree with. Please be mindful that the ‘Report this Post’ button is there for you to report inappropriate content – not to report users whose views and experiences differ from your own. Constructive discussion is part of the forum experience!
We rarely delete whole discussion threads. If such a request is made by a user we will only remove a thread in exceptional circumstances. The reason for this is because removing entire threads goes against the spirit of community, which is to provide support and share knowledge, experience and information – it is not the original poster who just benefits, but others who come to the forum seeking advice and information themselves. By deleting a thread, this knowledge and experience cannot be shared or built upon. Users who add posts to threads are sharing their time, energy, effort and knowledge, and it can be frustrating to find their posts have then been deleted.
Post publically, don’t just private message (PM). Our users regular posts are what makes the forums thrive – and it won’t if all messages are conducted in private! For the sake of others, please don’t use PMs to ask for help if your problem is being discussed in a public thread, as this will prevent others from using the knowledge to address similar solutions at a later date.
Don’t PM someone without their permission. It’s always best to ask users first if you’d like to contact them via PM. Some people don’t like getting unsolicited messages out of the blue. If you are getting unwanted PMs from another forum user, please contact the forum moderator by PM (HollyActionForM.E) or email (firstname.lastname@example.org)
Keep PMs private . Don’t publicly post or otherwise share PMs, emails or other correspondence you’ve had with other users unless you have the expressed permission of the sender to do so.
Please make your thread’s title clear and informative. It makes the post easier to find and understand. Try to post a title that makes it clear what your thread is about and don’t post in caps, eg. ‘Looking for support with pacing’ not just ‘PLEASE HELP’.
Respect differences of opinion. We will all see posts that we disagree with from time to time or wording we are not happy with. We do not have a problem with discussions on the forum and we don’t have a problem with differences of opinion. If you see a post that you don’t agree with you are allowed to challenge what the person has said, so long as it is not defamatory or argumentative. Please also remember that what works for one person may not work for another.
Please post in the right place. Both our forums for adults are divided into different areas, dedicated to particular topics of discussion. Please ensure that any discussions you begin are started in the appropriate area so that other people know where to look for them. To stop the forum getting cluttered with threads about research updates and petitions - which can be off-putting to those in distress and/or looking for support – we’ve created a “Research and Petitions Master Thread” for all discussions about relevant research and petitions.
Consider warning others if your post contains distressing content . If what you’re writing is about a subject that could distress others, such as suicide, abuse or trauma, it can help others if you say this in the title or at the start of your post (by using the phrase “Trigger warning”). That way people who may be distressed by what you’re writing can skip over it if they need to.
Don’t post hoaxes or false information. Purposely misleading other users, or giving advice you know to be incorrect or harmful, is absolutely not acceptable.
Don’t feed the trolls! “Trolling” (ie. posting in order to intentionally anger other users or cause negative reactions) is not allowed. If you see it happening, don’t give them a reaction, just bring their post to the moderator’s attention.
links to fundraising/project recruitment pages or ask for money
- we don’t want people feeling pressured to
donate or get involved in other forum users’ projects. It’s fine to mention
that you’re taking fundraising for a cause as part of your conversations on the
forum. If another user wants to donate or get involved they can private message
you and ask how to donate.
Don’t turn the illness into a competition. Telling other users they don’t have M.E. because of their symptoms, implying that they are not sick enough to warrant being on the forum, criticising others for recovering, and other such statements will not be tolerated.
Don’t advertise or promote your own paid products, fundraisers or services. Any commercially driven posts will be removed and your account banned or a warning issued.
While advertising is not permitted, we welcome users sharing their own experience of a symptom-management approach or product (such as a book or a supplement). Please remember that what works for one person may not work for another. In order to post a link you must be an established member (ie. with at least 10 posts). Third party advertisements and links to other websites where goods and services are advertised does not mean that Action for M.E. endorse or recommend the advertiser’s goods or services.
Our moderators are here to support users in keeping our forums for adults safe. Moderators will access the Forums on an ongoing basis between two and five times a week time in ensure users are following our guidelines.
Individual users are responsible
for his or her behaviour in our forums for adults. We will remove any post
which contravenes our guidelines, at
any time, and bar individuals who breaches these terms and conditions, at our
sole discretion. This happens very rarely, and we are grateful to all our users
who post responsibly, and make our forums for adults so welcoming and
Unless you explicitly state NOT FOR PUBLICATION OR REPOSTING, we may use material that you post on our website, social media channels and/or in our published resources, including our membership magazine, InterAction. We will credit this to your username and never share your full name or email.
If you have an issue with or complaint about a moderator’s decision, you can complain:
M.E. Friends Online and our Parents Forum are operated by Action for M.E., 42 Temple Street, Keynsham BS31 1EH. Registered charity in England and Wales no. 1036419. Registered in Scotland no. SC040452. Company limited by guarantee, registered in England no. 2906840.
You can contact us by post at the address above, by email [LINK TO email@example.com] or by phone on 0117 927 9551.
You must use this site for lawful purposes only.
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.
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, see section below)
You must not engage in copyright theft (see definition 2 in Appendix A, see section below).
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.
You must not post content that is libellous towards any individual or organisation (see definition 3 and related examples in Appendix A, see section below).
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.
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.
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:
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…
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.
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.
Action for M.E. would like to thank Allen & Overy LLP for legal advice in relation to these terms.
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