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Newsgroups and Mailing Lists

for people with CFS/FM and related illnesses.

The following list of newsgroups and mailing lists for people with FM, CFS/ME and similar diseases is intended as a guide for my readers. I don't claim that this is an exhaustive list, though I think I have included the main ones.

A new place to look for, find information about and subscribe to some mailing lists is Yahoo! Groups

Roger Burns maintains a list of CFS-Related Mailing Lists on the Internet.

I personally am or have been a member of FIBROM-L, alt.med.fibromyalgia, CFS-L (alt.med.cfs), ASAP, Pain-L and OzME. The information I give below about other groups is copied or summarised from information I have found on newsgroups or the World Wide Web. I have done my best to ensure that it is accurate, but I haven't tested it all out by actually joining those other groups. Please note that I can only speak with any experience of the groups I have joined myself, and do not speak for the owners or administrators of any of these groups.

If you are new to the world of newsgroups and mailing lists, you might like to read my article on Getting Started with Newsgroups and Mailing Lists first!


CONTENTS

Newsgroups

alt.health.cfids.action (CFS activism) | alt.health.cfs (CFS discussion group)
alt.med.cfs (CFS discussion group) | alt.med.cfs.open (CFS discussion group)
alt.med.fibromyalgia (FMS discussion group)

Mailing lists

ASAP (Chronic pain activism)
CFIDS-L (CFS activism)
CFS-20s (20-somethings with CFIDS/ME or FMS, etc)
CFS-CARE (carers for PWC)
CFS-GLB (gay/lesbian/bi CFS discussion group)
CFS-L (CFS discussion group)
CFS-MAIL (CFS/FM email news service)
CFS-OPEN (CFS discussion group)
CFS-P (parents of people with CFIDS/ME or FMS, etc)
CFS-Q (gay/lesbian/bi CFIDS/ME/FMS discussion group)
CFS-W (writers with CFIDS/ME and/or FMS)
Chronic_Pain (people living with chronic pain)
CPF-L (chronic pain forum)
FIBROM-L (fibromyalgia discussion group)
FMS-CHAT (FMS chat group)
FMS-RECOVERY (FMS recovery and support)
GUAI-SUPPORT (Guaifenesin protocol)
MCS-IMMUNE-NEURO (multiple chemical sensitivity group)
OzME (Aus/NZ CFIDS/ME/FMS discussion group)
PAIN-L (Pain forum)
SASYFRAS (CFS discussion group)


Usenet Newsgroups

alt.health.cfids.action

This is the newsgroup version of the mailing list CFIDS-L - a discussion group for political action issues regarding CFS/CFIDS/ME. Health issues are not discussed here.

If you want to participate in the discussion by reading AND posting through the newsgroup, you first have to sign on as a CFIDS-L member by registering with the list server. You then set your membership to "nomail", which means you don't receive any emails. Instructions for doing this are given below under CFIDS-L.

For more information go to the group's web page which describes how to participate in the group and what the rules are.

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alt.health.cfs

This is a newsgroup which has been created to allow unmoderated discussion of CFS issues (alt.med.cfs being moderated by the owners of the mailing list CFS-L).

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alt.med.cfs

This is the Usenet newsgroup version of the mailing list CFS-L. Like most mailing lists, CFS-L is moderated, and does not allow non-members to post from Usenet, so if you want to participate via the newsgroup, you must first register for posting privileges.

You can do this by contacting the moderators at CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU. Alternatively, send an email to LISTSERV@MAELSTROM.STJOHNS.EDU with the text: SUB CFS-L YourFirstName YourLastName. You will receive a confirmation request by return e-mail. Reply to that request (making sure not to delete the Subject: line) by sending a message that says OK and nothing else. You will receive a final confirmation that you are now a member and have posting privileges.

If you are registering for the newsgroup, the procedure is now complete. If you want to be an email subscriber, see the further instructions below for CFS-L.

You can also follow the discussion or post messages to the list via the CFS-L Archive Webpage.

This is a high-volume group, and one of the most popular health-oriented newsgroups. Members discuss symptoms and medications, share experiences and offer support. Members call themselves "PWCs" (people with CFS) and often when signing their names to posts give the number of years they have had the disease.

For more information go to the group's web page which has all the Topics, Rules and Information for CFS-L / alt.med.cfs - including a link to the CFS FAQ and other useful files.

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alt.med.cfs.open

This is the Usenet newsgroup version of the mailing list CFS-OPEN. It is an unmoderated discussion group (unlike alt.med.cfs), and may contain heated debate. For direct posting privileges to the newsgroup, register by sending an email to LISTSERV@MAELSTROM.STJOHNS.EDU with the commands: SUB CFS-OPEN YourFirstName YourLastName and, on a separate line, SET CFS-OPEN NOMAIL. (The second command tells the list server not to send the group's posts to you - if you are reading them on the newsgroup will not want to get them all by email as well.)

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alt.med.fibromyalgia

This newsgroup used to be linked to the mailing list FIBROM-L, but since October 1997 this arrangement has changed. It has alwasy been a busy group - one of the most popular of the health-oriented newsgroups - and is is likely to continue to be even with the splitting off of the mailing list. Members discuss symptoms and medications, share experiences and offer support to each other. The newsgroup is not moderated.

Searching archives of FIBROM-L/alt.med.fibromyalgia:

DejaNews stores posts to all news groups. If you want to search, go to: http://groups.google.com/   Older posts to FIBROM-L are archived, from the time it was gated to alt.med.fibromyalgia. Since 10/1/97, the gateway no longer exists. Messages from the newsgroup are no longer transferred from the USENET newsgroup alt.med.fibromyalgia to the listserv mailing list FIBROM-L and vice versa.

At this point, only posts to alt.med.fibromyalgia are archived. If you don't want your posts archived at Groups.Google.com, begin your posts with the line:

x-no-archive:yes

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Mailing lists

ASAP

The discussion list of the American Society for Action on Pain, "Striving for adequate pain medication, for those who need it, ASAP". To subscribe to the ASAP list, send an e-mail to listproc@ns2.calyx.net with the line: SUBSCRIBE ASAP FIRSTNAME LASTNAME in the message. Address posts for the list to asap@drcnet.org.

The list's owner is Skip Baker, President of ASAP, and his email address is skipb@widomaker.com. The American Society for Action on Pain's web site contains some very interesting reading.

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CFIDS-L

This is the mailing list which is gatewayed to Usenet as alt.health.cfids.action. To register as a member of both the mailing list and the newsgroup, send a request by e-mail to CFIDS-L-REQUEST@AMERICAN.EDU. Or you can self-register by sending an e-mail message which says SUB CFIDS-L YourFirstName YourLastName to LISTSERV@AMERICAN.EDU.

If you prefer to read and post via the newsgroup, wait until you have received confirmation of your registration, and then set your membership to "nomail" by sending the command SET CFIDS-L NOMAIL to LISTSERV@AMERICAN.EDU.

For more information go to the group's web page which describes how to participate in the group and what the rules are.

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CFS-CARE

This is a discussion group for - and limited to - caregivers of people with CFS/CFIDS/ME. To join the list, contact Greg Ross in the first instance at CFSCare@aol.com.

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CFS-GLB

The new CFS-GLB mailing list has been formed with the intent to establish an outlet for the discussion of issues facing people in the Gay/Lesbian/Bisexual community who are afflicted with Chronic Fatigue Syndrome. Those with Fibromyalgia, Multiple Chemical Sensitivities, and Gulf War Syndrome are also welcome. It is a closed, unmoderated forum created to offer a gay-friendly and supportive atmosphere for the sharing of information pertaining to the many unique concerns that specifically affect these individuals. This list will provide a place to share experiences, vent frustrations and fears, ask questions, lend and receive help from each other, and hopefully form friendships in the process. Most information relevant to the GLB community is appropriate for the list, but discussion is certainly not limited to this specifically. While the list is geared toward the GLB community, it is open to all who are interested.

To subscribe to the CFS-GLB list, send the following command in the body of an e-mail and address it to majordomo@queernet.org:

subscribe cfs-glb

The list webpage is http://www.queernet.org/lists/cfs-glb.html. If you require further assistance or information regarding the cfs-glb list, please feel free to contact the List Owner at owner-cfs-glb@queernet.org.

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CFS-L

This is the mailing list that is browsable on Usenet as the newsgroup alt.med.cfs. To join, contact the moderators at CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU, or subscribe via the list server as follows:

Send an email message to LISTSERV@MAELSTROM.STJOHNS.EDU with the text: SUB CFS-L YourFirstName YourLastName. You will receive a confirmation request by return email. Reply to that request (making sure not to delete the Subject line) by sending only the following word as the text of the message: OK. You will then receive final confirmation of your registration.

Unlike most mailing lists, the default subscription to CFS-L is "nomail". To start receiving posts from the list, you must now set your membership to "mail", by sending an email with the command SET CFS-L MAIL to LISTSERV@MAELSTROM.STJOHNS.EDU. (This last step is only for email subscribers - people who prefer to read the posts on the newsgroup will not want to get them by email as well.)

This is a very busy group, and some people find it easier to follow on the newsgroup. For email subscribers, there are options to help cope with the large number of posts: you can subscribe to certain Topics only, instead of receiving all the posts; or you can receive each day's postings in Digest form.

You can also follow the discussion or post messages to the list via the CFS-L Archive Webpage.

For more information go to the group's web page which also has all the Topics, Rules and Information for CFS-L / alt.med.cfs - including a link to the CFS FAQ and other useful files.

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CFS-MAIL

CFSMail is a free email news service for chronic fatigue syndrome, fibromyalgia and related disorders, symptoms and issues. For more information go to CFS-MAIL Home Page. You can join through ONElist.

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CFS-OPEN

This is an unmoderated discussion group (unlike CFS-L), and may contain heated debate. To join, send an email to LISTSERV@MAELSTROM.STJOHNS.EDU with the text: SUB CFS-OPEN YourFirstName YourLastName.

This mailing list also exists on Usenet as the newsgroup alt.med.cfs.open.

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CFS-P

For parents or caregivers of children have CFIDS/ME, FMS etc.

To subscribe, send an email to majordomo@tertius.net.au with the text: subscribe CFS-P. Do not put your name in the body anywhere. The subject of the message does not matter, it can be left blank. You can also subscribe via the Tertius.net.au Mailing Lists webpage.

More details on the CFS-P Webpage

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CFS-Q

has been amalgamated with Queernet's CFS-GLB list.

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CFS-20s

CFS-20s is an e-mailing list for "20-somethings" with CFIDS/CFS/ME, their spouses or significant others, and those with CFS/CFIDS/ME related conditions. It is a place to discuss the whole new range of CFIDS-related problems encountered by PWCs in their twenties, including marriage, engagement, dating (or not being able to date due to health), financial, schooling, career problems, and dependence on parents at a time one longs to be independent.

To subscribe, send an email to majordomo@tertius.net.au with the text: subscribe CFS-20s. Do not put your name in the body anywhere. The subject of the message does not matter, it can be left blank. You can also subscribe via the Tertius.net.au Mailing Lists webpage.

To contact the list owners, email CFS-20s-approval@tertius.net.au. For more information go to the CFIDS/CFS/ME 20-Somethings Discussion Group web page.

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CFS-W

CFS-W is an e-mail forum where people with CFIDS/ME and/or FMS who write for a hobby can talk about writing, share their own writing, and exchange ideas on coping with symptoms (brainfog, fatigue) that can make writing difficult. To subscribe, send an e-mail to majordomo@tertius.net.au with subscribe cfs-w in the body of the message. Once you are subscribed, use the email address cfs-w@tertius.net.au to send messages to everyone on the list.

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CPF-L

The Chronic Pain Forum began in February 1999. Our hope is that CPF-L can meet some unique needs for those who subscribe. Bev and Mike Strickland researched and questioned the chronic pain community, including those with pain and those who care for them, to establish what unmet needs there were. The list was formed with the goal of furthering the end of poor pain management for chronic pain patients through participation of different interest groups.  This is an Information and Education List, it is somewhat formal and on-topic usually.  For those who suffer chronic pain, knowledge seems to be an avenue towards a better quality of life and more hope for the future.  While support is an secondary outcome the primary goal is to learn how best to live with, understand and treat chronic pain.

To subscribe send an e-mail to: majordomo@lists.shsu.edu with subscribe CPF-L "your email address" in the body of the message or subscribe cpf-l-digest "your email address" in the body of the message if you wish a digest version.

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Chronic_Pain

Chronic_Pain is a support resource for adults with problems resulting in chronic physical pain and an emphasis on helping to cope and 'have a life.' This is a moderated peer-group list open to anyone with chronic pain.

The moderator & list-owner is Kenneth Turbin, who has faced chronic pain for a very long time & is a healthcare pofessional as well. It is important to understand that this is not a place for professional help, but for human understanding.

To subscribe: Go to the ONElist web site at http://www.ONElist.com. Register your email address and select the User Info link from the menu bar on the left. Select to subscribe to chronic_pain. Or email the moderator at: chronic_pain@1west.net with subscribe chronic_pain in the subject line and text.

Once you are subscribed, use the email address chronic_pain@onelist.com to send email to the list.

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FIBROM-L

FIBROM-L - the Fibromyalgia Discussion Group - is a mailing list which used to be gatewayed to Usenet, but since October 1997 it has been a separate group. In his introduction, the list owner says "It is hoped that, through their interaction with the group, subscribers can better understand their symptoms, discover how others have coped with FM, and perhaps even avoid some of the frustrating "doctor-hopping" so common among FM sufferers searching for answers and help". The mailing list has in the region of 900 members, who refer to themselves as "the FMily".

To subscribe, send an email message to LISTSERV@MITVMA.MIT.EDU with the following command: sub fibrom-l firstname lastname.

To find out more, see the FIBROM-L Help Page elsewhere on this web site.

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FMS-CHAT

FMS-CHAT is sister group to FIBROM-L. It was established to reduce the amount of off-topic messaging on the main list, and is a place for personal, newsy posts.

FMS-CHAT is "a busy and popular" mailing list, where "new faces are always welcome". To join, send an email to LISTSERV@MITVMA.MIT.EDU with the message: SUBSCRIBE FMS-CHAT FIRSTNAME LASTNAME.

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FMS-RECOVERY

"The FMS-Recovery list is about recovery and support. It is a support group for anyone with an interest and belief in the possibility of recovery from the symptoms of FMS/CFS/MPS/GWS/etc. All schools of thought are welcomed under their appropriate subject keywords. Support is of paramount importance during any process one may go through with the goal of recovery uppermost." List Owner: Tesa Marcon, vashti@edison.dialix.com.au.

To subscribe to FMS-RECOVERY: Send an email to: LISTSERV@MAELSTROM.STJOHNS.EDU In the body of the email type the command: SUB FMS-RECOVERY (Firstname Lastname).

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GUAI-SUPPORT

Guai-Support list is for anyone with an interest in Dr St. Amand's guaifenesin protocol for fibromyalgia syndrome. It is for those who are on the protocol, or considering it, and who wish to share information and support during the process of recovery.

To subscribe, send an email to LISTSERV@MAELSTROM.STJOHNS.EDU with the following command: SUB GUAI-SUPPORT yourfirstname yourlastname.

Owner: Tesa Marcon, vashti@edison.dialix.com.au.

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MCS-IMMUNE-NEURO

MCS-IMMUNE-NEURO, the Chemical Injury-Sensitivity Support Network, is a list for people with MCS (Multiple Chemical Sensitivities), EI (Environmental Illness), ADD (Attention Deficit Disease), ADHD (Attention Deficit and Hyperactivity Disease), Desert Storm illness/syndrome, Agent Orange exposure, Alopecia, Fibromyalgia, Chronic Fatigue Syndrome/ME/CFIDS, Lupus, Multiple Sclerosis, Lou Gerhig's Disease, porphyria, panic disorders, asthma, allergies, diabetes, migraine types of headaches, and other autoimmune diseases and nervous system/seizure disorders that may be caused by MCS, chemical injury, or allergies/sensitivities.

The list aims to provide a caring and friendly environment where people bothered or injured by chemicals can exchange information and support, and discuss treatment and symptoms. It is a moderated list with over 200 subscribers. The list owner/manager is Ginny Kloth, bijou@blrg.tds.net; the Assistant manager is Andi DesJardins, enviroknow@aol.com.

To join, send an email to LISTSERV@MAELSTROM.STJOHNS.EDU with the message: subscribe mcs-immune-neuro Your Name. (updated address 30 Apr 97)

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OzME

OzME is a mailing list for people with CFS/CFIDS/ME, FMS, or anything closely related - eg Multiple Chemical Sensitivity (MCS) - and for people who have some interest in these diseases, such as parents, children, spouses and carers. As the list's name suggests, the focus is on Australia and New Zealand, but those outside are also welcome to subscribe. The group is for support, information sharing, and discussion of medical issues, activism etc.

To subscribe, send an email to majordomo@tertius.net.au with the message subscribe ozme your@email.address.here. The subject line doesn't matter, just leave it blank. You can also subscribe via the Tertius.net.au Mailing Lists webpage.

When your request to join is approved, you'll receive more information. To contact the list owner, mail ozme-owner@tertius.net.au and your mail will be forwarded to the appropriate person.

You can go to The OzME mailing list's web page for more detail about subscribing etc. and other information, including the group's rules.

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PAIN-L

PAIN-L covers all aspects of chronic pain, including health and healing, and politics dealing with pain policy, etc. This is an educational forum for doctors, other health care providers, patients. The list owner is Hank Roth at pain-l-request@MAELSTROM.STJOHNS.EDU.

To subscribe send the request: SUBSCRIBE PAIN-L [Your full name] to LISTSERV@MAELSTROM.STJOHNS.EDU. Mailing list address: PAIN-L@MAELSTROM.STJOHNS.EDU.

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SASYFRAS

"SASYFRAS" is a discussion list for people who have the disease variously known as Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Chronic Fatigue Syndrome (CFS), and Ramsay's Disease - and also for those with allied illnesses (Fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Post-Polio Syndrome), or with an interest in learning more about all these diseases.

To join the list, send a message to listserv@home.ease.lsoft.com with the message: subscribe sasyfras Firstname Lastname. List owner: Mary Schweitzer. The email address of the administrative committee that runs Sasyfras is Sasyfras-Request@home.ease.lsoft.com .

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PLEASE NOTE:  The original concept, content and design of this page from Moira A. Smith's Canberra Fibromyalgia and Chronic Fatigue Syndrome Pages: http://www.masmith.inspired.net.au/ and has been moved to its new home here with the kind permission of the author:   Moira A Smith (webmaster@masmith.inspired.net.au) - Canberra, Australia

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