Blog Archives

ME-I Chat Rooms

3/29/2021

Recently, in accordance with our mission statement of reducing loneliness, we established ME-I Chat Rooms. This is a specific Facebook group that utilizes rooms as its sole purpose.

To Join

Become a member of the "ME-I Chat Room" FB group.
Found here: https://www.facebook.com/groups/1075615046269396

Once you are a member, just click a link to enter a room. Links will be posted as rooms open.

Please fill out the poll on the ME-I Chat Room post to help us know what hours works best for everyone.

Please consider becoming a member of ME International here: https://www.me-international.org/membership-application.html

Recent Experience

This last week Heather, a chat room committee member, hosted a room every day for 2 hours and was happy to have met some kindred spirits. The plan is to continue to have a chat room every day from 10-12 am PST or 5-7 pm GMT. We hope to be able to provide some other times very soon.

Hosting a Room

Anyone is welcome to host a room at any time. If you may be open to hosting on some sort of regular basis, even if it’s only once a month, let us know. We understand things come up and we will work around your schedule and your well being. If something happens, another member will be able to cover.

Future Plans

We hope to have some more solid times in the near future. The more of us talking, the better it will be.

We’re always looking for people who may be interested in joining a committee so we can throw around ideas on how to make this great. Please reach out to Heather or any ME International board member if you are interested. We look forward to meeting you.

In the future, we will also be hosting event rooms to chat about topics like “What is ME International?”, “Understanding the International Consensus Criteria” as well as discussing the “International Consensus Primer”.

Our Hope

While we are up and running, we are still under construction so bear with us if you encounter a problem.

We hope that ME sufferers will feel less alone knowing people care and can be there for each other. We also hope it will enable people to connect and make new friends.

2 Comments

ME International Joins Long COVID Alliance

3/3/2021

10 Comments

Benefits and Challenges

Dear fellow ME patients,

The ME International (ME-I) Board recently made a challenging decision to join the Long COVID Alliance. This Alliance, led by Solve ME/CFS, has a goal of making sure that ME/CFS patients are considered in the upcoming NIH Long COVID research funding awards. The US Congress appropriated $1.15 billion to the NIH for this research. At this time there are 50 organizations including ME-I who have signed this Alliance.

We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.

There are valid concerns raised by the patient community since little progress has been made with respect to differentiating ME from CFS. We are aware that the decision may be viewed as diffusing our emphasis on ME. It is definitely not the case. ME-I remains committed to the position of supporting ME patients as defined by the IC Primer.

ME-I views the IC primer as a strong foundation for defining what ME is and how best to diagnose and treat it. We believe that this foundation provides a solid framework that can be built on with international patient input.

In making the decision to join the Long COVID Alliance, we considered the following benefits and challenges:

Benefits

Advocating that research dollars are allocated to addressing ME as defined by the ME- ICC patient community
Identifying clinicians and researchers that are best suited to represent ME patients
Enhancing communication with other organizations who are confounding ME with CFS

Challenges

ME-ICC definition is not recognized
ME-I patient community voice is diminished in Long COVID Alliance communications
Cycling back to what happened previously to the ME-ICC Community

ME-I is committed to managing these challenges by:

Directly communicating our position to NIH, CDC, clinicians, and researchers independent of the Alliance
Partnering with medical societies and other patient advocacy groups as appropriate
Exiting the Alliance if our voice is not heard

At the end of the day, we felt it was important to have a voice at the table so we can collaboratively encourage NIH funding to be spent in a way that will benefit the ME community.

If you have questions or concerns, please email them to admin@me-international.org. We look forward to your insights and will be requesting further input on ME-International social media sites.

Jim Lutey, President
ME-International