M.E. at every level Online Group

Ethos and House Rules

M.E. at every level offers the opportunity for people affected by M.E. (Myalgic Encephalomyelitis), from all over the world, to read and post messages, arranged by a range of different levels of geographical remoteness from their homes, to very close proximity to their own doorstep and ordered by categories to make reading as economic and the least possible drain on precious energy.

Levels

The levels are:

International (affecting people with M.E., worldwide, in all countries)

National (emanating from one country in particular)

Regional (divisions of countries, such as states or counties)

Constituency (areas represented by an elected parliamentary member)

Zip or Postcode (reaching neighbourhood and even street level)

Categories

The categories include:

News (News items about M.E. from all media – newspapers, magazines, TV, Internet etc.)

Letters (Letters to newspapers, or open and campaigning letters, for example)

Conferences (Notice of forthcoming conferences or reports of their outcomes)

Research (Information, results, conclusions, from any research relevant to M.E.)

Treatment (Any diagnostic tests or treatments, orthodox or alternative, offered for M.E.)

Support (contact details for groups and individuals)

Discussion (Exchange of views and opinions, based on experience and research findings)

Advice (Including tips to help fellow  M.E. sufferers along)

Help (specific help, offered or required, usually at a local level and specified time)

These levels and categories are not definitive, or exclusive and there may be some overlapping but they provide a solid framework of guidelines for members of M.E. at every level.

Examples

Some examples may help to illustrate the benefits of exchanges on M.E. at every level:

INT  CONF - Invest in ME 4th International Conference, London 29 May 2009

NAT  (USA)  RES  - Whittemore-Petersen Institute, New virus discovery hopes

REG (…shire, UK) TREAT -  Plans for clinic and local multidisciplinary team for M.E. sufferers

CONST (UK, Bristol South) SUPP  - M.E. sufferer sets up local support group

ZIP or  POST (UK, BS16 5SW) - HELP WANTED - Lift to hospital, next Thursday a.m. please

At a glance, members should be able to decide how much time and energy they wish to devote to each message; indeed, whether they wish to read it at all. For example, they may know all they need, or wish to know, about a conference, or particular study, from other sources and they may not be able to offer help sought in a local area because they do not live there, or would be unable to help.

Further economies of time and energy may be achieved by avoiding repetition and postings which add little or no extra information and these will be deleted by M.E. at every level stewards. For example, if three members post a notice about a forthcoming event, the two which add no extra useful information will be deleted.

Other types of posting, which also add nothing new, will be deleted; for example, “Hear hear!” or “I agree!”, unless it is followed with something fresh. It would be quite acceptable, even welcome to add praise or support for someone’s work, views or efforts, if you do add something new, for example, “Well done so-and-so for that fundraising initiative in your area. How can we donate to your cause?”

Nor is a personal opinion, especially a rant, which has no constructive value outside the group, acceptable. For example, a posting such as, “this researcher is biased”, “this study is flawed”, “M.E. is NOT …”  would be deleted unless it was also being sent to a newspaper, or some other medium, to increase knowledge and public awareness.

When offering opinions, in any discussion, it is preferable that you have some evidence or experience with which to back them up. “IMHO (In my humble opinion)” and “I, for one, think …” are not very welcome here.

Forwarding and Re-posting

One distinctive feature of M.E. at every level is that it is presumed that every message may be forwarded, re-posted and published anywhere, for example, in M.E. newsletters. It would be preferable to have such a confirmation like, “Permission to forward, re-post and publish anywhere” at the top of every posting but, if it is omitted, for whatever reason, it will be assumed. Unlike some other groups, we do not accept any message with “Do not re-post”. Nor is there a need to ask a fellow member, “May this be re-posted”. To be absolutely clear: If you don’t want a message to be forwarded, re-posted, or published elsewhere, do not post it on M.E. at every level. Of course, individual members may choose to e-mail each other privately but, then, they cannot expect completeness of knowledge amongst fellow members from whom they have kept details secret.

Etiquette & standards of behaviour

As on most forums, foul language is unacceptable and any will be deleted but we are exceptionally fussy about even the mildest expletives. Even if you say that something is crap at home, we don’t have it here. Imagine you’re going for a job interview, to tea at your prudish aunt’s house, or are out to impress your boy/girlfriend’s parents and you’ll do all right here.

Definitely no bullying or insulting behaviour and this includes rounding on people or trying to garner support, “What does anyone else think about this?” ; baiting, “I wonder what so-and-so has to say on the matter?”; or any kind of threatening or menacing, such as, “So ….”, or “I suppose that you think …”  Our stewards on M.E. at every level know it when we see it, we’ll delete it and you could get your marching orders.

In the event of expulsion, members will always have right of appeal and may, after a cooling off period, apply to re-join, so long as they apologise to the group and no more than a couple of members object to their re-instatement.

Cardinal Rules

We only have a few, but, cardinal, rules on M.E. at every level. You can’t say anything that is demonstrably factually incorrect. For example, you could not say that Birmingham is the capital city of England. It is not; London is. You could say that, in your opinion, Birmingham, or some other city, ought to be the capital of England and give some reasons to support your view but you cannot say that it is. You cannot say anything that is illegal or defamatory. And you cannot say anything that is inflammatory, even if it is true; for example, “Such-and-such a person is a big fat toad”, even if everyone agrees that they are. Robust exchanges are welcome; self-opinionated arrogance and downright rudeness are not. If you have to be told the difference, you shouldn’t really expect to be a member of M.E. at every level.

Stewards

There are always going to be borderline decisions. To get as close to equally fair treatment for all as we can, we have a number of stewards checking the messages to the group. Since M.E. at every level is an International forum, we are always seeking to have several stewards, form all over the world, so that we can cover every time zone and also share out the work to make it more easily manageable for each.

Membership

Membership of M.E. at every level may be by invitation, recommendation, or personal application. Some pioneers members will be invited because of their good history and reputation of working for the M.E. Community, whether that is by organising or attending conferences, lobbying, encouraging research, raising public awareness and offering support. The behaviour of these exemplary members should give each individual an idea of whether they will fit it on M.E. at every level (Please note: Don’t be offended, or assume that you are not wanted, if you have not received an invitation, or a recommendation. Some names may have slipped by unintentionally, or it was erroneously assumed that they were already members.) Existing members may nominate good people for membership. You may also apply to join, yourself, by going to groups …. and writing a few lines why you would like to be a member of M.E. at every level and telling us what you could bring to the group.

Although the expectation is that a great many members of M.E. at every level, perhaps the largest proportion, will be actively involved in increasing public knowledge and awareness of M.E., by writing letters at every opportunity, we understand that there are times when all of us relapse and are unable, or just need a break and we know that some sufferers are so much more severely affected all the time that they can’t do so much that but want to be involved. On other sites, these people are often admitted as “lurkers” (Ugh, what a horrible thing to be or do!). Here, we welcome people who will be mostly spectators and just contribute, when they can manage it, as much as they can – say, one letter a year – if it would not set back their health which, of course, always has to come first.

Applicants will be accepted as members, unless they are in any way hostile to the ethos of M.E. at every level or breach any of our cardinal rules or if any more than a couple of existing members oppose their joining.

Personal information

Minimum information required for membership of M.E. at every level is:

A name, in the form of two parts, such as John Smith, or Mary Jones. This is especially useful when there is more than one member with the same forename. We do not accept nicknames or pseudonyms, such as “Howling Wolf” or “Penelope Pitstop”. We prefer the real name of a member but, if there is some compelling reason – some legal reason, or for your personal safety, for example – why you need to use an alias, we can agree on one. Those with names used by both sexes, such as Chris, or Lee; or even where a spelling makes one gender most likely, e.g., Francis, or Lesley, please make it clear. Members may use titles, for example, Dr, Professor, Sir, Lord, Lady,  etc., if they wish.

A postal address is required. A phone number is preferred but not essential.

Only one e-mail address per person.

All members have equal status and are entitled to their own opinions. For example, if a member is also the owner, leader, or moderator of another group, they should not presume to speak for all of its members.

International co-operation policy

M.E. at every level is not in competition with, but in addition, to other groups, which support people with M.E. We will work with other groups, share news, knowledge and information and provide links to these groups, except when there is any breach of our cardinal rules. We actively encourage multiple memberships of such groups, we shall mention here (though, please note, this does not constitute a recommendation or approval or disapproval of their fundamental modus operandi but is in the interests of freedom of thought and expression, one expects in a democratic society.

In Yahoo:

CFAlliance-subscribe@yahoogroups.com

CFS_Support_and_share-subscribe@yahoogroups.com

CFS_Facts-subscribe@yahoogroups.com

CFS-FM_INFO-subscribe@yahoogroups.com

LocalME-subscribe@yahoogroups.com

MEActionUK-subscribe@yahoogroups.com

mecfs-wa-subscribe@yahoogroups.com

NZYME-subscribe@yahoogroups.com

ozme-subscribe@yahoogroups.com

In Listserve:

SUBSCRIBE CO-CURE YourFirstName YourLastName

to the listserver at: listserv@listserv.nodak.edu

SUBSCRIBE MECHAT-L John Smith

Type your own name in place of John Smith (your "name" must be at least two words)

to the listserver at: mechat-L@listserv.aol.com

Please note: If your group does not yet appear here and you would like it to, please send us a request by e-mail to meateverylevel@yahoo.com with “Add our group” in the subject line.