Welcome

[Science For ME]

A warm welcome to the Science for ME forum! We’re glad you found us.

Science for ME is an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us.

ME/CFS is a debilitating disease or group of diseases, often apparently triggered by an infection. A core feature is Post-Exertional Malaise, a reaction to exertion that results in an exacerbation of symptoms that include fatigue, cognitive difficulties, flu-like symptoms, muscle weakness and pain.

Our goal is to provide an international platform to discuss all aspects of ME/CFS, with a special focus on science, support, and advocacy.

ME/CFS has many names including Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS). A number of specific post-infectious syndromes such as post-Covid-19 syndrome (Long Covid), Q fever-fatigue syndrome and post-Lyme disease, as well as Gulf War Illness, have similarities and may overlap with ME/CFS, and are served by the forum. There is also some coverage of other poorly understood and 'invisible' illnesses including fibromyalgia.

We value four things especially:
· high quality scientific research, which will be necessary to produce effective treatments;
· open, critical discussion of claims and ideas;
· mutual support and respect;
· equality.

Forum membership is open to anyone with an interest in ME/CFS, aged 18 or over, and willing to abide by forum rules.

We want the forum to be safe, supportive and productive. You can help: before you post, please read the forum rules and our etiquette guide. Both will help you to make successful posts with the best chance of getting a good response.

Once you are registered, you’re very welcome to start a ‘Hello from [member name]’ thread in the Introduce Yourself subforum and tell us a little bit about yourself, if you wish.

We look forward to seeing you around the forum.

 

[Science For ME]

Forum Rules

Rule 1: Take care with comments to and about other people
While vigorous debate and criticism of arguments is permitted, it should be focused on issues related to the aims of the forum.

a) Interaction between members on the forum
In forum discussions, disagreement should focus upon the arguments made, not upon the members making those arguments, and should avoid personal attacks against other forum members.

b) Commenting about other people
It is not permitted to insult people based on their personal characteristics such as character, appearance or intelligence, whether the person is a member or non-member.

c) Comments are not permitted that could reasonably be regarded as offensive or discriminatory on the basis of gender, sexual orientation, race, nationality, religion, disease or disability.

d) It is not permitted to threaten or support the use of violence or harassment against anyone.

Rule 2: Privacy
a) Careful disclosure and discussion of others' personal information
Personal information of identifiable individuals (including information about contact details, health and family) may only be posted if it is either in the public domain, or the member has permission to share it, and if it is posted with care. Posts from other social media that contain personal information may be linked, but should not be screenshot or copied, so the author retains control of the information. Discussion of such personal information must be justified by wider implications relevant to the forum's purpose and should avoid speculation.

b) Sharing of material from S4ME on other social media:
No material from the members only area of this forum may be copied or discussed on other social media. While the public area of the forum is available to all, and posts may be linked on other social media, posts should not be copied on other social media without the poster's permission.

c) Use of forum posts for research
Permission will not be given to any researcher to use the whole or any part of the forum as source material for research.

Rule 3: No trolling
Trolling and disrupting the forum is not permitted. Trolling is not merely saying something unpopular, but involves making disingenuous statements with the purpose of provoking a reaction rather than engaging in discussion.

Rule 4: Do not take threads off-topic
While any discussion is open for disagreement, it is not appropriate to take threads in a direction which substantially distracts from the original subject of the thread. If it is considered necessary to discuss a peripheral matter in more depth, that should be done separately in a thread devoted to the new topic.

Rule 5: No medical advice
a) Members may offer or request opinions and personal experience regarding seeking a diagnosis and treatment, but they may not diagnose or recommend treatments to each other, nor request such diagnoses or recommendations.

b) Treatment recommendations are also inappropriate if contained in a protocol which purports to be broadly applicable based upon a diagnosis or other characteristic, or includes a process for determining which people should try specific aspects of the protocol.

c) Some treatments may be so potentially harmful that discussion of details of methods, sources of medication or equipment, and personal experimentation of those treatments may not be allowed.

d) Members may not describe or discuss their own or another person’s plans for ending their own life. Members may not describe or discuss methods for ending one's life or link to information about such methods. However, members are free to seek emotional support by sharing their thoughts and feelings about ending their lives, and may discuss the topic in general terms.
Help with dealing with suicidal thoughts here

Guidance Note here

Rule 6: Advertising and fundraising
It is required to obtain moderator permission before explicitly or implicitly promoting a business you are associated with. Fundraising is encouraged, but it is not permitted to use guilt or other coercive methods as a basis for fundraising.

Rule 7: Do not violate copyright law
It is not permitted to post entire copyrighted articles or PDF files, but full abstracts from research papers may be quoted so long as the original source is credited or linked to. Under "fair use" doctrine, it is also permitted to quote sections of copyrighted material, but it should be the minimal amount necessary to support or illustrate your commentary regarding the content. Linking to sci-hub or other third-party sources is also permitted.

Rule 8: One account per forum member
It is not permitted to have multiple accounts, except in certain situations requiring moderator approval. Typically the exception is due to a forum member being a public figure such as a researcher or advocate, but also needing the freedom to post anonymously about sensitive issues. In the event that a new account is created because a forum member has forgotten their previous name or password, a moderator can help resolve the extra account.

Rule 9: Specific moderation decisions should not be discussed publicly
General moderation policy can be discussed in the "Moderation" subforum, but it is not appropriate to discuss specific decisions about rules violations publicly. In the event that an appeal of a moderation decision is requested, the moderation team will review the case and any additional information, and vote to determine the outcome. If there are fewer than three moderators on the moderation team, a body with oversight over the moderation team will review appeals.

Rule 10: Signing up with false information
Forum membership is open to anyone with an interest in ME/CFS, aged 18 or over, and willing to abide by forum rules.

Although anonymity and the private personal data of forum members is carefully protected, it is not permitted to create an account using false or misleading information. Signing up should not be done with a throwaway email address, and may not be done while masking your internet connection, such as via a proxy server, Tor network, or VPN. It is also not appropriate to protect your identity by lying to staff or to other forum members about your personal experiences.

Rule 11: No religion or non-ME politics
Religion and politics are inherently divisive subjects, with limited relevance to ME/CFS. Accordingly it is not permitted to promote or critique any religion, spiritual belief, or the lack thereof. Politics may be discussed strictly in the context of ME, but must still avoid any generalizations about members or supporters of political parties.

Members are reminded that these rules apply to everything you write on S4ME, including thread headings and posts, signatures and private messages. Links to anything off site that breaks our rules are not allowed.

While these rules cover most common situations, they cannot anticipate everything. Consequently, at our discretion we will take any moderation actions we deem appropriate to ensure these forums are not disrupted or abused in any way. We also may remove anyone who we consider to be wilfully violating the forum rules, or intentionally causing disruption.
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