This website is provided and supported by Action for ME. 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 privacy policy. Our website has been designed to be a friendly, helpful and supportive environment for all people affected by ME In order to maintain this environment, we ask all users to abide by the following rules:
Please scroll down to read each section in full.
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 ME 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 ME, quoting Action for ME’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 ME’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 ME, 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 ME 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 ME 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 ME 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 ME 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.
The Promoter is Action for ME, Unit 2.2 Streamline, 436-441 Paintworks, Bristol BS4 3AS.
The sending of the prize will be confirmed by Action for ME.
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 ME 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 ME. Their decision is final in every situation and no correspondence will be entered into.
Action for ME 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 ME reserves the right to amend these rules at any time.
Entering implies acceptance of these rules.
The promoter is Action for ME, Unit 2.2 Streamline, 436-441 Paintworks, Bristol, BS4 3AS.
Entrants must be part of our Young People's Community.
The prize winner will be selected at random by Action for ME.
Their decision is final in every situation and no correspondence will be entered into.
Action for ME 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.
The winner will be notified by email.
Winners agree to keep confidential any knowledge about Action for ME 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 sending of the prize will be confirmed by Action for ME, who reserve the right to substitute prizes of equal or greater value if circumstances beyond our control require doing so.
Action for ME reserves the right to amend these rules at any time.
Entering implies acceptance of these rules.
Action for ME 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, Instagram, LinkedIn, Bluesky, Threads, TikTok, 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.
Thank you for helping us keep our social media a safe and friendly environment.
Action for ME’s ME Friends Online forum is a community offering peer-support and friendly discussion. It is open to adults living with ME/CFS in the UK including carers.
If you are under 18, please join our FREE Young People’s Community instead which offers a young people’s forum, pen pals, monthly e-magazine and more.
We welcome users of any age from 18 years onwards – we have users in their eighties! - with a wide range of topics being discussed, including a section for games. There’s also an area for users who want or need to go at a slower pace. Everyone using ME Friends Online is affected by ME so these Terms of Use have been developed with this in mind.
While we endeavour to ensure that the information contained in our forums is accurate, appropriate and up to date, please note content is provided by users and not Action for ME.
Action for ME reserves the right, at our discretion and without notice, to remove or edit any messages and/or to restrict your access (either temporarily or permanently).
By registering with ME Friends Online you agree to accept and comply with these Terms of Use along with any other legal notices and/or instructions which may appear in the forum (including in any messages or attachments posted). We know this is a lot of information, so please take your time to read them and pace as needed. Each section has a summary at the start giving key points.
We hope you enjoy using the forum and find it helpful.
Scroll down to read each of the following sections:
A. Joining the forum
B. Looking after yourself
C. Using the forum
D. Private messages (PMS)
E. Forum moderation
SUMMARY
IN FULL
We ask that each user registers one account only.
To register and be approved, you need to provide your full name, email address, and username (please don't use your real name or your email address, or any swearwords). Providing your date of birth and first part of your postcode is optional – this information will help us understand more about our users so we can seek funding to ensure the forum meets your needs.
Approval of your account may take up to five working days and is up to the moderator’s discretion. On approval, you will be sent two emails (these may take up to five working days, please check your spam folder):
We may use your email address to contact you about moderation/administrative issues and/or changes to the forum. To learn more about how we collect, process and store your information, please see our privacy policy.
SUMMARY
IN FULL
Everyone on the forum takes personal responsibility for how they use it. You cannot anticipate the needs of everyone, and nor should you. It’s important that no forum member should feel they need to offer more support than they are able, and it’s not on individuals to fix any problems should they arise. If you are worried about another user, or think someone is contravening these terms of use, please let us know using the “Report” button (see section E. Forum moderation below for more on this).
If at any point you feel overwhelmed, please take a step back or simply ignore posts you find difficult/disagree with. The forum can be a busy place and it’s more of a ‘dip in and out’ style than a vast novel where you need to read every plot point. Each user can engage as much or as little as they want with the forum. This includes frequency of posting as well as interactions with other users.
If a post feels triggering or brings up difficult feelings for please take time to reflect on how you can manage your self-care and give yourself permission to do what you need. You can talk through your feelings with a trained and experienced listener by contacting one of the following organisations:
SUMMARY
IN FULL
Be inclusive and respectful. ME Friends Online is a place of support, insight and shared experience enjoyed by many. This is only possible because users do not 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).
Respect and celebrate differences of opinion. Debate will naturally occur and by following these terms of use users can ensure a space for everyone to feel heard and respected. Personal attacks, inflammatory/hostile language and/or invasions of another user’s privacy will not be tolerated.
Use the search facility to see if there’s an existing topic that has the information you're looking for before you start a new one.
Don’t turn the illness into a competition. Telling users they don’t have ME because their symptoms differ from yours, 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 report every post you disagree with. Please be mindful that the "Report" button is there for you to report content that contravenes these terms of use – not to report users whose views and experiences differ from your own.
Do you really need to share your contact details? 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 ME is not responsible for any activity that occurs outside of the forum.
Don’t advertise or promote any paid-for products, fundraisers or services you own/manage. Any commercially driven posts will be removed and your account may be banned.
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). In order to post a link you must be an established member (ie. with at least 10 posts) – this helps deter spammers. Please remember that what works for one person may not work for another. Third party advertisements and links to other websites where goods and services are advertised does not mean that Action for ME endorse or recommend the advertiser’s goods or services.
Information posted on the forum by users does not constitute professional advice and we remind users to always consult professionals when concerned about health, legal or other issues.
Warn others if your post contains distressing content by adding a trigger warning at the beginning of the post, eg. Trigger warning: suicidal thoughts.
Don't feed the trolls. Trolling (ie. posting to intentionally anger other users or cause negative reactions) is not allowed. Please do not reply. Instead, use the “Report” button (see “Moderating the forum” below) to bring it to the moderator’s attention.
Unless you explicitly state NOT FOR PUBLICATION OR REPOSTING we may use material that you post in the forum on our website, social media channels, information and support resources, membership magazine InterAction and/or funding applications. We will only credit posts to your username (ie. not your real name or email).
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, and all your posts will automatically be removed from the forum itself.
SUMMARY
IN FULL
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.
PMs should always be considerate and not be used to criticise other forum members. If you are concerned with another forum member's behaviour, please use the “Report” button to alert the moderator.
Replying to private messages is each user’s individual choice. Please respect this and do not send repeated messages if you do not get an answer. If you are getting unwanted PMs from another forum user, please email the moderator.
Users can request that the private messaging function can be turned off by emailing the moderator. This means that you will not be able to send or receive private messages. It will not affect you being able to post in the main forum.
SUMMARY
IN FULL
The role of the moderator is to check that users are abiding by these Terms of Use. We are not able to check every single post and instead rely on users reporting any concerning posts as needed. Personal attacks or defamatory comments aimed at the moderator will not be tolerated. Moderator’s decisions are final.
If you think a forum user has contravened these Terms of Use please let us know using the “Report” button. A moderator will review the post you have reported and get back to you with a response.
If a user has posted in a way that contravenes the terms of use, the moderator will address this and potentially remove/edit the post or posts concerned. We will only remove an entire discussion thread in exceptional circumstances.
If a user continues to break the rules after receiving a warning, they may face a temporary suspension depending on the circumstances. If a user repeatedly violates the rules despite warnings, the moderator may decide to ban them from the forum, preventing them from accessing or posting content.
If you are worried about the safety or wellbeing of a forum user please let us know using the “Report” button. For confidentiality reasons, we often can’t share how and what we follow up with other users but please assured we act to investigate all concerns.
You can share feedback, suggestions or complaints by post, email or phone. Please write to the ME Friends Online forum moderator, Action for ME, Unit 2.2 Streamline, 436-441 Paintworks, Bristol, BS4 3AS; send us an email or call us on 0117 927 9551. Our How we deal with complaints and feedback guide sets out how we will respond and that the timescales for this.
ME Friends Online is operated by Action for ME, Unit 2.2 Streamline, 436-441 Paintworks, Bristol, BS4 3AS. Registered charity in England and Wales no. 1036419. Registered in Scotland no. SC040452.
Company limited by guarantee, registered in England no. 2906840.
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 ME, 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 ME 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…
Examples of potentially libellous statements
1. “[NAME] is personally responsible for physically damaging a large number of ME 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 ME 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 ME would like to thank Allen & Overy LLP for legal advice in relation to these terms.
