Real People Real ME

Community Guideline and Standards

The ME Association (‘we’ or ‘the charity’) moderate the website and all social media platforms based on 5 principles

  1. We respect and appreciate everyone who visits the website and the social media platforms and who interact with the charity, its representatives, and with other visitors, and expect you to afford the same respect. 
  1. Please ensure your comments are legal, non-judgemental, and polite. We have a zero-tolerance policy and do not accept any personal attacks, harassment, discrimination or inappropriate behaviour directed at the charity’s representatives or other visitors. Where comments are removed or visitors blocked or banned, the charity’s decision is final. 
  1. When posting comments in the community or sending private messages to the charity, please choose your words carefully and do not use language that is threatening or offensive. Sometimes words that you deem acceptable or are written with passion may be taken as offensive. 
  1. Maintain a respectful tone, especially when discussing passionate or controversial issues. We realise this can be difficult for people with cognitive problems, but we recommend you read your comments carefully before posting them.  
  1. If you notice an inflammatory or disrespectful comment from someone else – do not engage with them as this may inflame the issue and cause greater distress to others – please email or send a private message to the charity and we will determine the action to be taken. 

Email: meconnect@meassociation.org.uk 

For online safety:

Please know that the ME Association will never ask for any personal details via social media messages, text messages or WhatsApp (we do not have WhatsApp) with the exception of an email address – should we need to email you. We would also not share the ME Association bank details via social media messages and would always ask you to contact us via the official emails/telephone numbers or use the donate buttons or official fundraising sites to make donations. This is part of the ME Association's commitment to fraud awareness.

Guidelines 

  1. Do not post links containing medical information, advice, or product promotions. If in doubt, then please contact the charity by email or private message on social media. 
  1. Promotion of products and services from other organisations are not permitted unless we have granted permission. 
  1. Please do not give out personal information when leaving comments on the website or social media. We cannot be held responsible for the sharing of any such information and if you choose to do so then it is at your own risk.  
  • There is a useful guide from Change and the Care Management Group about keeping safe online that you might like to read. It is aimed at people with learning disabilities but is also very good for people who have cognitive difficulties. 
  1. Private messages or emails can be used when seeking help and support from the charity. It is the charity’s policy to keep any such interactions confidential and we will not retain personal information once the help and support has been provided. 
  1. No spam is permitted on either the website, social media, or in email communications. Such attempts will be hidden, deleted, or reported as inappropriate and the person posting them will be banned. 
  1. Any website or social media comment or email to the charity that contains offensive, defamatory, discriminatory, sexist, racist, trolling, cyberbullying, or abusive content will be deleted and result in the individual being banned.  
  1. When making a comment on the website or social media, be mindful of using CAPITAL LETTERS as this is interpreted as shouting and can cause offense. 
  1. When the charity shares links or ‘likes’ content from other organisations, it should not necessarily be taken as a recommendation or endorsement of the other organisation. 
  1. Any medical information published by the charity on its website or social media platforms should not be regarded as medical advice. We recommend that visitors seek medical advice from a qualified healthcare professional who knows them well. 
  1. The sharing of personal images on the website or social media is done at your own risk. The charity takes no responsibility for the content you choose to publicly display.  
  1. The charity has permission to use images provided by people with ME (The Real ME Photo Campaign) to raise awareness. However, if the images are selected for use in wider media promotions (e.g., newspapers), the charity will seek additional permission from the person who provided them. 
  1. The charity reserves the right to permanently ban any visitor who is deemed not to be adhering to the guidelines above. 

Chairman's comment

We want to give everyone affected by ME/CFS and Long Covid the opportunity to learn from the information we provide, benefit from the support we can offer, exchange views, make friends, and share experiences with people in similar situations.  

We know that many people have heartfelt views which is not surprising given the uncertainty surrounding these medical conditions. Yet there are some who seem to have immense certainty in their opinions and, when that belief is challenged, respond vehemently, and criticise people unfairly. 

We must remember that different people make different judgements on the same facts. This may be because they have different objectives, but often it is because they see different options, select other information and interpret that information differently. 

So can I please ask everyone who uses the website and social media to respect the views of others. You may not accept them. They may be the opposite of what you believe. But personal attacks on others will not be tolerated. They add nothing to a reasoned argument, indeed they portray the writer in a poor light. 

The website and social media are for those of us at home, too ill to meet and make friends in the outside world. They give us an opportunity that our illness denies us. We can swap stories, tell how we have been treated, pass on practical tips. We can debate the science while remembering that the science behind ME/CFS and Long Covid is still unfolding. We can listen and sympathise, support and encourage. 

This is what the ME Association online community is for. The future for all of us with these devastating illnesses does not lie with personal criticism. It lies in good research, mutual aid, information and support. 

Neil Riley, Chairman, The ME Association. 

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