Notes from FFAME Sept. 2018 Call

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Hi: Greetings from FFAME, Friends, Family and Allies of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome),

Welcome: Join us for our second on-line phone or computer meeting. We will be meeting monthly, the first Saturday of the month unless another time is suggested.

You can listen in or speak up

SATURDAY OCT. 6, 4pm EST, 1pm Pacific

RSVP here.
–  From Bobbi Ausubel, facilitator and co-founder, FFAME.

***************************

MINUTES: First FFAME ALLIES meeting- Saturday September 8

Submitted by Bev Weiss

APOLOGY:   We want to apologize that the video bluejeans link we posted was not working. We hastily updated new info for FFAME website as the meeting started, but are sorry for this inconvenience. It shouldn’t happen again.

JOIN FFAME Facebook Page: You will be able to talk with other allies, receive monthly call information, etc.

You need to join Facebook to be on that site. Email us to find out how if needed.

 

SUMMARY OF MEETING SEPT 8:

11 participants in our first video call, September 8.

 

Suggestions from meeting:

  • 24 Hour Help Line for ME/CFS community.

RESPONSE:  MEAction will look into this over the next year. Definitely a need but will

require major resources not available now.

 

  • List of ME/CFS-friendly practitioners.

RESPONSE: Please see below (Resources About Health Care Professionals) for links.

Also individual state #MEAction Facebook pages may have lists of local practitioners,

below is a link to find your state group.

 

  • How to talk to doctors/friends.

RESPONSE:   Good advice from a speaker: persons with ME should bring reputable

scientific/medical information sheet when they go to hospital or doctor, proof sheet that

ME is a medical condition. The meaction.net website has many informational handouts.

#MEAction ME/CFS Research Summary  by Jaime Seltzer is one scientific paper that should

surprise any doubting medical person. There are several others too.

 

HELPFUL LINKS

Caregivers Support group.

There is a video/phone meeting once a month, also there is a Facebook site. This is a

‘hidden’ group. You click on “Join” and ask for permission to join by answering the few questions. The purpose of

permission is to limit the group to only caregivers, making it a safe space to chat.

 

Join your state’s #MEAction Facebook group:

Consider joining your state’s private Facebook page. Comments are

visible just to the members. Find your regional group. Click on “Join,” you will be asked a few questions, and

then the administrator review-it may take a few days for permission-but you will be

notified. Good place to share information about medical resources in your state and

participate in local advocacy.

 

Other MEAction groups There are also other groups defined by age/ language/

and country etc. Be sure to scroll down the page, to see the many groups. Do look

up the #meaction affinity and geographic groups: https://stgmeaction.wpengine.com/groups/

 

Resources about Health Care Professionals:

In addition to resources you might find on your state website, here are a couple of

resources listing healthcare professionals. If you know of other sites, tell us.

International Provider List  or ammes.org (click “find a physician”)

 

ADVOCACY

If you can take one action, here is one we recommend:

1. Senate Resolution 508:  Ask Your Senator to Join Us (write/email or call)

The # MEACTION Congress Team leads community efforts advocating with congress.

Our important goal is to gain the support of our legislators in an effort to have them

allocate funds for ME/CFS research at the National Institute of Health which has the

largest research budget in the world. More info: visit the Congress page.

Scroll down to see: U.S. Congress Introduces Resolution for ME

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