50 experts and 171 advocates oppose the HHS/IOM Contract to re-define ME/CFS.
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Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
Forum Rules Explained
This post provides further clarification of the forum rules. It explains the reasons why these rules exist, and an explanation of how they are applied. All members are strongly encouraged to read this explanation in order to fully understand the rules of the forum. The rules are stated below in bold text, and the explanations follow each rule in plain text.
By joining the Phoenix Rising forums, you agree to abide by the following rules. These rules apply to forum posts, private messages, blog posts, social groups, chat, and any other types of communication available in the forums.
By agreeing to the forum rules, you warrant that you will not post or link to any content which is defamatory, hateful, threatening, abusive, vulgar, likely to offend, spam or spam-like, contains adult or objectionable content, contains personal information of others, risks copyright infringement, enourages unlawful activity, or otherwise violates any laws.
Rule 1: No rudeness or personal attacks
While we honor passionate and informed discussion we will not tolerate rudeness, insulting posts, personal attacks or purposeless inflammatory posts.
'Rudeness' means deliberately discourteous comments directed at another member. 'Insulting posts' are those that treat another member with deliberate rudeness and contempt. 'Purposeless inflammatory posts' are posts that are designed purely to provoke a reaction and cause an unpleasant argument.
Such behaviour is not tolerated here.
We take a very firm line on these forums regarding personal attacks, so it is important for all members to understand the difference between disagreeing with the content of another member's posts, and making a personal attack on someone.
Our definition of a 'personal attack' includes:
- attacking a member's motivation for a post
- attacking a member's character
- referring to a member in a contemptuous manner
- referring to a treatment that a member finds helpful in a contemptuous manner
- belittling a member using sarcasm
- questioning why somebody is present on the forum (accusing them of being a "mole" or a "troll")
- questioning a member's affiliation with other groups
- mocking a member's username
- making negative or rude statements about administrators or moderators
- attacking people or groups based on race, age, gender, sexual orientation or religious beliefs.
Disagreeing with comments made in another member's post does not constitute a personal attack. Members are allowed to refute the comments of other members and provide reasons why they don't agree. A member may also choose to contradict a comment and provide very little evidence to support their comments, and this does not count as a personal attack either. When a member chooses to attack the author of a post rather than the content of the post, that is a personal attack. Please keep your focus on the facts of the topic under discussion - not on the person with whom you disagree.
The diagram below illustrates the definition of a personal attack. It is obviously best to aspire to arguments at the top of the diagram, but provided you stay within the green area (Contradiction) and above, you are unlikely to trouble the moderators. Posts in the yellow zone (Responding to Tone) are likely to attract the attention of moderators, and may be removed. Anything in the orange zone (Ad Hominem) or below will be removed, and persistent posts of that nature may result in a suspension or ban.
Rule 2: No condoning of physical violence, threats or harassment
It is not permitted to advocate, encourage or condone physical violence, threats of violence, or harassment against anyone, whether members of these forums or not.
This rule should be self-explanatory. Comments advocating or condoning any form of violence, threats or harassment will be removed. Such posts will be removed regardless of whether they were meant as a joke - you should assume that the moderators have no sense of humour in this respect.
'Harassment' can include a wide range of offensive behaviours that are designed to disturb or upset another person. Posting negative replies on every thread that another member posts on can be an unintentional form of harassment. Sometimes, people join a forum with the sole intention of harassing a specific member who they have encountered on other forums, and this harassment may take place either directly on the forum or via private messages. This kind of intentional harassment can be considered trolling in most cases.
Phoenix Rising will use all available means to protect our members from harassment and cyber-bullying, including reporting serious offences to the authorities and taking legal action if necessary. All reports of harassment are considered with care and sensitivity, with reference to posting history, whether the action was intentional or unintentional, length of membership, etc. If you feel you are being harassed, or if you witness the harassment of another member, you should contact a moderator as soon as possible.
Rule 3: No argumentative and divisive behavior
Members who sow discord and persist in argumentative and divisive behavior will be removed from the forums.
This rule applies to members who do not break Forum Rule 1 (they do not post messages that are rude, insulting, or purposefully inflammatory) but who nevertheless manage to sow discord on the forum by constantly arguing with other members and dividing the community. This rule is particularly aimed at trolls, who visit forums with the intention of starting arguments and provoking an angry reaction from the forum members.
Trolling is not merely posting an opinion that may be different from the opinion of the majority of members. Trolling is not simply disagreeing with another member. It is the act of purposefully baiting people, usually in order to sit back and watch members become upset. Trolls can wreak havoc on a forum by stirring up negative emotions, causing members to get involved in angry exchanges, and causing rifts between members.
One of the main goals of the Phoenix Rising forums is to provide a safe and friendly place to discuss ME/CFS matters. Trolls disturb and disrupt the community and they are not welcome, nor should they be tolerated if they are truly a "troll".
When trolls post, well meaning members can create a chaotic environment by responding to the troll. Remember that it is against the rules to publicly accuse any member of being a troll. If you feel a member may be a troll, or has the sole intent of upsetting forum members, please report them to the moderators.
Sometimes, new members post in a way that provokes arguments and discord without intending to cause offence - they may simply enjoy a good argument, and they may be accustomed to more aggressive forum environments. In such cases, the moderators will work with the person to impress on them the need for tact and sensitivity when raising issues that are likely to cause offence to our members. When such members are able to modify their behaviour, they may find they can fit in with the forum community; members who persist in causing trouble will be removed.
Rule 4: Criticize constructively, don't just dump
Critiques of individuals or organizations should be done in the spirit of constructive discourse; simply dumping on a person or organization is not conducive to the kind of conversation we strive for.
"Dumping" on an organization or a person who is not a forum member may upset members who identify with the person or organization, so we do ask members to ensure that their comments remain as constructive and positive as possible.
We do recognise that many of our members feel a great deal of pain and anger about the way they have been treated - and about the treatment of ME/CFS patients in general - and sometimes we all feel the need to 'vent' about that. But relentlessly negative attacks on people and organisations outside the forums achieve nothing and they can be upsetting and depressing for other members to read. As an organisation, Phoenix Rising aims to emphasise what we can positively achieve together. Of course that means sharing our pain, and sometimes our anger too, but we also want to maintain a positive focus on what we can do about our situation, and so we ask our members to engage on the forums in the same constructive and progressive spirit.
In some cases, negative comments about individuals can be construed as libel or defamation. Libel is a false, malicious statement published in mainstream media, and is often used synonymously with the term "defamation". A libellous statement is a statement that identifies a person, is a knowingly false statement about that person, is defamatory, and either causes injury or is likely to cause injury to the person. Legal issues surrounding libel and defamation are very complicated and vary by country. Although the legal issues regarding libel and defamation on the internet are still being defined, there have been successful lawsuits for internet libel.
Libellous and defamatory comments include statements that purposefully injure the reputation of another by exposing them to hatred, contempt, or ridicule. Allegations that a person is a thief, liar, idiot or fool, immoral, carrying a disease, bankrupt, unable to pay debts, or an adulterer, are all libellous or defamatory statements. In short, any statement that has a negative effect on a person's reputation is problematic. Using the words "In my opinion" is not protective. A statement is libellous whether one says "X is a liar" or "In my opinion, X is a liar" - if the statement concerns a matter of fact, it does not matter whether "In my opinion" is used as a qualifier or not. Libel is more likely to be an issue when a "public" figure has been libelled or defamed.
The Forum Rules state that Phoenix Rising is not legally responsible for content, but we are here to help protect individual members who may publish libellous or defamatory statements within their forum or blog posts. Some members may believe they are protected because they are using an anonymous username, but if libel does become a legal issue, an Internet Service Provider can be subpoenaed to release personal details. Any comments that are construed as libellous or defamatory comments will be removed, in order to protect the member who has made such comments.
Rule 5: No medical advice
Members may offer their opinion or make suggestions but they may not tell members what they must or should do.
One of the main purposes of the Phoenix Rising forums is to serve as a place where patients can receive support from other patients who struggle with similar problems and where we can all learn about each others experiences. Many members offer information related to symptoms, medication, supplements and treatments, and such information is warmly welcomed. Members are encouraged to post about their personal experiences, post information regarding their own medical choices, and post opinions about how particular treatments and protocols have worked for them.
However, there is a difference between telling someone that their symptoms may be suggestive of a particular medical condition and suggesting that trying a treatment may be helpful, as opposed to telling somebody that they definitely have a specific health problem and they should take a specific treatment.
We define 'medical advice' as diagnosing and prescribing for another individual member. It is not appropriate, on these forums, to diagnose another member's medical condition or to urge other members into particular actions (or inactions) regarding their medical treatments. Nor is it appropriate to urge members to undertake specific protocols or to take specific amounts of medications or supplements. These are issues that should be discussed with a health care professional.
Using wording like 'in my opinion', 'in my experience', 'this has worked for me' or 'this protocol might be worth trying' is all perfectly acceptable when referring to medical issues. Insisting that a member has a specific diagnosis, must utilize a specific treatment or protocol, or must take a specific amount of a supplement or medication, is all considered to be medical advice and is not permitted on these forums.
Rule 6: Request approval for all advertising
Please obtain moderator permission before posting links to a business you own or work for, or before promoting a business you own or work for, otherwise you will be regarded as a spammer and your account will be banned.
The purpose of joining the forums should not include promoting, advertising, or otherwise calling attention to a product you sell or a website that offers services for financial gain. We attempt to keep the forum free of advertisement and self-promotion that is of direct benefit to a business owner, regardless of whether or not the information may be of benefit to our members. This is a rule that is strictly adhered to and business owners who come to the forum to promote or market a product or service will be banned. This includes any attempts to promote or sell products or services through private Conversations and chat room Conversations with members, and we ask members to report any such activity to us.
We do have plans for the future to provide a managed 'marketplace' area where representatives of businesses with relevant products and services can describe what they are selling in a transparent way, and where they can discuss those products and services with forum members. This will require careful preparation and management, however, and until we have implemented this feature, promotion and advertising is not permitted on the forums.
Rule 7: Please observe copyright law
Posts may be edited in order to conform to copyright law.
If you quote information from another website, please credit the source of the quoted material. Please do not copy and paste entire articles or more than 50 percent of any article. It is good practice, and in accordance with copyright law, to copy a few sentences of an article, provide a link to the original article and provide a brief description of the article in your own words. Posting in this manner keeps the forum safe from any accusations of copyright infringement and potential legal action.
Rule 8: Only one login account per member
Each member is allowed only one login account.
This rule exists mainly to prevent 'Sock Puppet' accounts and to prevent previously banned members from returning. If a member is found to have a duplicate account, they will be contacted and asked why the duplicate account exists and which account they would like to post under. Where there is a good reason for a member to maintain a second account, this can sometimes be permitted, but this needs to be arranged in advance with the Moderation Team.
If you feel your privacy has been threatened or have a good reason why you would like to have a new account created, let the moderators know and they will try to accommodate you. If you decide you would like your username changed, please do not re-register under a new name. You can request a name change by contacting any moderator.
Rule 9: Do not publicly dispute Moderation decisions
Do not post on the forums questioning moderation decisions or the integrity of the moderators. Questions about moderation decisions can be addressed in private conversation with the moderators. Be respectful of the moderators, both in the forums and in any private communications.
If you disagree with a specific decision made by a moderator, please start a 'Conversation' with any one of the moderators to discuss this decision privately. While we can not discuss confidential matters, we can disuss why a decision was made based on the Forum Rules.
Disputing a Moderation decision in the middle of a thread is not permitted because this derails the thread and is not fair to those wanting to discuss the topic at hand. Publicly discussing Moderation decisions is not appropriate because there are almost invariably issues of confidentiality and privileged information which make such discussions impractical. Moderators are almost always in possession of information about Moderation matters, including private Conversations with the members concerned, which they cannot discuss publicly with members. Public disputes regarding Moderation decisions can achieve little more than disharmony, distress to other members, and damage to the image and reputation of the forums.
You may discuss the Forum Rules, and Moderation policy in general, in the Moderation Forum, but discussion of specific decisions is not permitted there either.
Please remember that our moderators are all ME/CFS patients too, and they commit a great deal of their time and energy on a voluntary basis in order to help keep the forums running smoothly and maintain a peaceful and positive environment for all our members. Moderators welcome private Conversations with your suggestions, ideas, questions, comments and even constructive criticism, but disrespectful commentary towards the moderators will not be tolerated and will be treated like any other form of personal attack.
TERMS AND CONDITIONS
Phoenix Rising reserves the right to act to protect the forums
While these rules cover most common situations, they cannot anticipate everything. Consequently we reserve the right to take any actions we deem appropriate to ensure these forums are not disrupted or abused in any way. We reserve the rights to modify or remove any content posted for any reason without explanation. Requests for content to be modified or removed will be undertaken at our discretion. We also reserve the right to remove anyone who willfully violates the forum rules - access to our forums is a privilege and not a right.
This statement is a legal disclaimer, but it is important that members understand that it is meant seriously. The statement covers any gray areas that may not be directly covered by the Forum Rules. A forum member may sow enough discord on the forums to justify suspension or banning, despite not having broken any stated rules. In such circumstances, we reserve the right to act in the best interest of the forums and of our members.
Sometimes, members claim that they should be allowed to post anything they wish, because they have a right to "free speech", and they argue that any resulting Moderation amounts to censorship. This is a fundamental misunderstanding. Members and former members may exercise their rights to free speech elsewhere on the internet, and Phoenix Rising cannot censor them or prevent them from doing so, but it is important to understand that being a member of the Phoenix Rising forums is a privilege granted at the discretion of Phoenix Rising, not a right. A member who does not follow the stated rules of the forums, or who disrupts the forums in other ways not covered by the Forum Rules, may lose the privilege of membership.
All forum posts are property of Phoenix Rising and the poster
We consider all forum posts to be integral to the conversation in the threads in which they are posted, and we therefore don't allow the en masse removal of all your posts. When you post on the forums, you are granting us with a non-exclusive, irrevocable, permanent, unlimited license to use, publish, or re-publish your content in connection with Phoenix Rising. You retain copyright over the content. Posts on the forums cannot be used outside the forums for monetary purposes without the consent of the poster.
It is important that members understand that when they post on these forums, they are granting Phoenix Rising with the unlimited rights, as described above, over the content they post, whilst retaining their own rights of copyright over that content. This means that if you decide to leave the forums, you do not have the right to edit or remove content you have posted here - Phoenix Rising may publish that content in whatever form it wishes, without your permission. This is a standard clause for internet forums, and it is necessary for forums to maintain the integrity of their past discussion threads.
We allow members to edit their own posts for a period of 7 days after they were originally posted. It is regrettable that this time limit is necessary, but in the past there have been occasions where former members have removed or edited large numbers of their posts. This can be very disruptive, ruining the flow of threads and creating a great deal of work for the moderators.
Please remember to review your posts for any errors and edit them within the 7 day time limit. After the 7 days are up, you can contact a moderator and they will make any necessary changes for you - we do realize that links sometimes need to be amended, members wish to remove personal information, and old posts may need to be edited for other reasons. If you feel you would like a longer time limit for post editing, please contact one of the moderators, and this can be arranged on an individual basis.
Phoenix Rising will protect your personal information
All content you submit or upload may be reviewed by staff members. Do not submit any content that you consider to be private or confidential. Phoenix Rising will not gather information other than that needed to run the forums. Phoenix Rising will not rent or sell your personal information, including your email address, to any other entity.
Phoenix Rising has a strict policy of confidentiality covering all personal information that is only known by administrators and moderators.
Phoenix Rising is not legally responsible for content
We are not responsible for, nor do we vouch for, the content, accuracy, completeness, or usefulness of any message posted on the forums. The messages express the views of the authors, not those of Phoenix Rising or the administrators or moderators. The messages on the forums do not constitute medical advice by qualified health professionals. Always consult your physician before trying any treatments recommended by forum members. Neither the Phoenix Rising forums nor Phoenix Rising nor the moderators and administrators associated with it are responsible for any negative outcomes deriving from treatments or other information posted on the forums.
Although the administrators and moderators of the Phoenix Rising forums will attempt to keep all objectionable messages off this site, it is impossible for us to review all messages. All messages express the views of the author, and neither Phoenix Rising nor XenForo Ltd (the developers of the XenForo software) will be held responsible for the content of any message.
These terms may be changed at any time without notice.
If you do not agree with these terms, please do not register with or use Phoenix Rising.
Again this is a standard legal disclaimer, and again it should be taken seriously. Messages posted on the forums do not necessarily express the views of Phoenix Rising, and you should not assume that the organisation supports those views simply because they are posted on our forums. Messages on the forums do not constitute medical advice, and Phoenix Rising really does recommend that you should consult your physician before trying any treatments recommended here. It really is impossible for us to review all messages posted in the forums, blogs and chat-rooms, and it is the reader's responsibility to treat the information posted here appropriately. And we do reserve the right to change the rules, terms and conditions without notice - though we will try to give ample information and explain any changes that may be necessary. Finally, your use of Phoenix Rising constitutes your acceptance of the rules, and if you are unhappy with any of the rules, you may discuss them with the moderators in the Moderation Forum, but if you do not wish to comply with the rules, you should not register with Phoenix Rising.