• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

If you just need to talk to someone: Phone/chat/email support available to patients and carers

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
In addition, if you are in France, you may ask questions about the disease over the telephone. This service is courtesy of the Association Francaise du Syndrome de Fatigue Chronique (AFSFC):
http://www.asso-sfc.org/asfc-permanences-telephoniques.php

En outre, si vous êtes en France, vous pouvez poser des questions sur la maladie par téléphone. Ce service est offert par l'Association française du syndrome de fatigue chronique (AFSFC):
http://www.asso-sfc.org/asfc-permanences-telephoniques.php
 
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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
MEAction also offers monthly support groups, which are listed at:
https://www.meaction.net/event/

You can join each support group from anywhere using the BlueJeans video conferencing app, or by simply using your phone to call in to join the support group.

Here are two examples:
MEAction said:
Please join us for the third Saturday of each month at 12 pm PT / 3 pm ET for our ME Caregiver Support Call.
If you would like to be added to our email list and receive meeting info and updates, please email caregiver@meaction.net
Please use "ME Caregiver Email List" in the subject line.

MEAction said:
Join #MEAction Georgia the 3rd Thursday of the month at 1pm EST for our monthly support call. All pw/ME are welcome and no previous attendance is needed. Topics will vary from month to month and no preparation is required. Come as you are for this virtual meeting!

Please remember to mute yourself when not speaking to avoid background interference for those of us with sensitive ears. To do this, tap the mic icon or press *4 to mute and unmute from your phone.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
And there is a weekly phone support group for ME/cfs patients from anywhere:
https://me-pedia.org/wiki/ME/CFS_Phone_Support_Group
https://www.facebook.com/groups/293261061038536/

ME/CFS Weekly Phone Support Group said:
ME/CFS Weekly Phone Support Group
Saturdays at 8pm EST
U.S. Dial-In: (712) 770-4700; Access Code: 915110#
* * * * * * * *
OVERVIEW:
This is a peer-to-peer support group for people affected by myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The aim of this group call is to provide support and social interactions to those affected by ME/CFS. Listen to and share experiences with others who understand from the comfort of your own bed. Most participants have ME/CFS, but family & friends are very welcome to join, so we can all benefit from sharing different perspectives and information.
Topics vary each call, based on what participants want to talk about during that call. Discussions can cover a wide range of matters, including symptoms, socializing, research, treatments, diet, the isolation and stigma of this disease and advocacy efforts. A typical call runs 1-1.5 hours, but you can join for a shorter period.
Click on the “EVENTS” section of this group to RSVP for a call. If you RSVP, that call will be added to your Facebook calendar as a helpful reminder. You can still join the call without an RSVP.
Please be respectful of others’ opinions and journeys. No solicitation for any business or product will be tolerated, as this is for social support only.
If you have any questions, feel free to contact the group's admins through the “MEMBERS” section of this group or e-mail the admins at MECFSPhoneGroup@gmail.com.
* * * * * * * *
INSTRUCTIONS FOR JOINING:
U.S. Dial-In Number: (712) 770-4700
Enter Access Code: 915110 followed by # sign.
TIP: Add a “one-click” quick dial to your mobile phone’s contacts or calendar reminder for easier dialing.
Most Devices: 7127704700,915110#
Participants outside of the U.S. can join a call by (i) downloading the "Free Conference Call" application to connect via the Internet or (ii) contacting the group's admins to see if a local in-country dial-in number is available. For information on the app, go to https://www.freeconferencecall.com/apps.
IMPORTANT: Please keep your phone on mute during a call when not talking, or make sure there is minimal background noise. Background noise can disrupt a call, and many people with ME/CFS are sensitive to sounds. Using or placing your mobile device too close to a computer or speakerphone during a call can cause static or echoing. If you are using the “Free Conference Call” app or a different program to dial-in (e.g., Skype, Google Voice), please use a headset or earphones with a mic. Using speakerphone can also create static and echoing.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
The Bateman Horne Center is now offering a monthly online support group:
https://batemanhornecenter.org/outreach/support-connect/

Bateman Horne Center said:
Online support groups are led by members of BHC staff who have personal and professional experience with complex chronic illnesses. These are open to individuals impacted by ME/CFS and Fibromyalgia (FM) including patients, family members, friends, and care partners.
  • ME/CFS Online Support Group 2nd Tuesday of each month
  • FM Online Support Group 3rd Tuesday of each month
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
This is a list of various support groups (with website links) for Canadians, organized by provinces and regions:

http://mefmaction.com/index.php?vie...inks&format=pdf&option=com_content&Itemid=285

Thanks for that!

Also the Canadian organization Action CIND has a bi-weekly Zoom support group for kids with ME:
Our friends at Action CIND organized the Invisible Youth ME-FM-MCS Support Group for youth aged 13-21 suffering from #MECFS, Fibromyalgia (#FM) or Environmental Sensitivities/Multiple Chemical Sensitivity (#ESMCS). Meetings are scheduled every other Saturday from 3-4:30 pm ET.

Register
https://us02web.zoom.us/.../tZAvcO-vqz8rHtCD134f9UB... and join the FB group: www.facebook.com/groups/invisibleyouthgroup
 

kewia

Senior Member
Messages
233
@Pyrrhus,

I can't join the telegram me/cfs group if there is one by clicking the "Telegram Chat" title in
https://www.reddit.com/r/cfs/wiki/chat

I then get:
1653392100798.png


The other link joins me to the Welcome Group, but this is probably the wrong group.

Edit:
The Welcome Group is the welcoming channel to new ME/CFS members joining telegram.
After introducing yourself and small talking with the mods they decide if you could join the other ME/CFS channels. And if yes, you will get a link to an overview channel where you can join to any ME/CFS channel listed there you want.
 

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starlily88

Senior Member
Messages
497
Location
Baltimore MD
Thanks but when you hit URL for REDDIT chat - there is no telegram chat - just a bunch of them, when I downloaded one most specific - there is no cfs chat.
 

lenora

Senior Member
Messages
4,913
Hello starlily88.....I just tried both addresses and had no problems. Perhaps if you try now or later in the day you'll be able to get through.