USA: News from #MEAction

ahimsa

ahimsa

Senior Member (Voting Rights)
This information is from the ME Action website, see http://www.meaction.net/2017/10/30/new-living-w-me-support-group-2/

The November and December schedule for the Living w/ ME Support Group has just been announced:
About the Living with ME Support Group:

Do you have ME and want to connect and share with others from around the world facing similar issues? Join us every other Sunday for a time of open sharing and discussion. Help us be a supportive and inclusive global community for each other. Our goal is to draws strength from each others’ experiences and empowers each other to fight to end to this health inequality.

Each week we will discuss a different topic. For example, past discussions have included:

1) the issue of “coming out” to family and friends about having ME
2) depression, suicide & mental health
3) ME and work​
 
Esther12 said:
Also - are you connected to ME Action in any way?
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Nope, I'm just a patient, no official ties to any organization. :)

I just think ME Action is a good source of information (at least for US patients). I follow them on twitter and get their emails (signed up for their list a while ago).

And although I also don't generally do well with online chats, I did attend a couple chats where the subject was advocacy. This was in preparation for meeting with my Congressional representative in 2016, part of the Million Missing campaign.

I'm doing okay with support because of my wonderful husband and a few friends who are very supportive. So the online support sessions are not for me but I wanted to share them for others who are more isolated.
 
From an email:

#MEAction to Hold Press Conference on ME & long COVID!

#MEAction is thrilled to announce that we are hosting a press conference next Thursday, March 25th to educate the media about how myalgic encephalomyelitis (ME) fits into the long COVID picture. We are sounding the alarm across the media that post-viral diseases are not new, a body of research already exists, and the need to invest in researching ME/CFS is critical and urgent.

We are bringing together a panel of experts who have dedicated their careers to understanding post-viral illnesses like ME, and are in a unique position to speak to the research needed to make sense of some of the questions around long COVID. The panel will also feature a person with long COVID and a person with ME who will share their experiences of getting a virus and never recovering.

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Long haulers are overwhelmingly reporting symptoms that resemble ME/CFS at six months, and researchers are expecting the number of people with ME/CFS to more than double during the pandemic, which follows the pattern of past viral outbreaks. Dr. Anthony Fauci has warned repeatedly of the risk for COVID-19 patients to develop ME/CFS.

Our panel will feature NIH Senior Investigator, Dr. Avindra Nath, MD, who will discuss his intramural studies on both ME/CFS and long COVID; Dr. Lucinda Bateman, MD, who will discuss how 'long haulers' are presenting with symptoms that resemble ME; and Dr. Anthony Komaroff, MD, who will speak to the history of past viral outbreaks that have led to chronic illnesses like ME, and estimates for how many long haulers will meet the criteria for ME. A 'long hauler' and nurse with ME symptoms, Jen M, and person with ME and disabled nurse, Ashanti Daniels, will also join the panel to share their experiences.

Educating the Press Every. Single. Day.

Our press conference is a continuation of the year-long work that #MEAction has done day-in and day-out to educate the media about how post-viral illnesses like ME have already devastated millions prior to the pandemic, the need to recognize long haulers who are now developing ME, and the great urgency for researching ME.

To date, #MEAction has contacted more than 800 journalists reporting on long COVID, and we’ve made an impact on stories reported in The Atlantic, Time, The Guardian, Daily Mail, Scottish Sunday Express, Washington Post, New York Times, Kaiser Health News, US News & Report, Medscape, Vox, Scary Mommy and Bustle.

Now, is a unique and crucial time for the world to pay attention to ME in the wake of long COVID, and for our governments to take major strides to find answers to this devastating disease.

Stay tuned for more details about the press conference!

In solidarity,

Adriane Tillman
#MEAction Editor
 
Dr. Nath talks about "restricted viral replication" here. If I understood him correctly, sometimes following a viral infection, whole viruses may have been eliminated, but fragmentary viral sequences remaining in some cells may still be able to use the cell's machinery to create copies of themselves (yet they cannot replicate the whole virus). These fragments can find their way into other nearby cells and continue the process. The immune system may eventually react to the presence of all these viral fragments.

Dr. Komaroff then mentions a new study just published in Nature that shows that viral fragments of Covid-19 are indeed able to replicate in the gut and suggests that if this kind of process were to occur in the brain it could result in a "low grade inflammation" there, which he believes may underlie the symptoms of ME/CFS [if I got that right].

Related to this, Dr. Komaroff suggests that the administration of a vaccine may eventually result in the immune system seeking to dampen down its initial response and that this may be why some people with Long covid (and ME/CFS) might feel a temporary sense of improvement following a vaccination (as immune activity is being constrained for a time).
 
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A Letter From Jennifer Brea: Meet Our New Executive Director!

https://www.meaction.net/2021/04/14...director/?mc_cid=d33c10affe&mc_eid=83ddbd3a71

Quote:

"Last November, I announced that I was stepping down as Executive Director of #MEAction to focus on my health and well-being. Since then, our entire Board of Directors, including myself and #MEAction co-founder Beth Mazur, have led a wide search for the right person to lead #MEAction into the future and grow our community’s capacity to fight for recognition, education, and research

I am thrilled to share that we have found that passionate, committed, experienced leader … I would like to introduce you to #MEAction’s new Executive Director, Julia Miele.

For the majority of her career, Julia has been committed to public health and advocacy. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. #MEAction has always looked to the HIV/AIDS movement for inspiration, and we have learned so much.

Julia brings to us 20 years of experience in the nonprofit sector. Most recently, she led The Gabriella Foundation, an arts organization that transforms lives and communities through the power of high-quality dance education in low-income areas of Los Angeles. Prior to that, Julia served as Executive Director of the YWCA Santa Monica / Westside. At the YWCA, Julia spearheaded organizational efforts to become a respected convener of programs and partners working to empower women, girls, and families at every life stage and turning point."

More at link.
 
from an email

"
Over the past year, #MEAction has focused on reaching out to the national press to educate journalists and medical professionals about ME, to provide them with the correct context about long COVID and long haulers. Our efforts have paid off and we continue to receive coverage and new opportunities to speak with journalists. Now, it’s your opportunity to help us get the word out even further!

Our press outreach efforts have helped lead to coverage in major news outlets:

The #MEAction press conference was successful in educating journalists about the intersection between long COVID and myalgic encephalomyelitis, and we are ready to do even more with your help!

With this in mind, we want to expand our press outreach to local papers across the globe and this is where you come in. This year, in preparation for #MillionsMissing week, we are asking our community to send letters to the editors of their local papers. Letters to Editors are a great way to get published and can be a powerful advocacy tool. You can even start this action right away! The more press, the better!

Here is Why Letters to Editors are Important:

  1. You can reach a large audience.

  2. Great way to start a conversation around an issue that is important to you.

  3. Helpful way to educate and spread awareness about ME.

  4. Letters to Editors are often monitored by elected officials.

  5. Letter to Editors are a great way to catch the attention of journalists at the newspaper who may, in turn, write a full article.
Click below to get started!

Take Action Today!
Thank you in advance for writing to get the word out about #MillionsMissing and ME. All of us working together, in tandem, makes a difference. "
 
#MEAction Urges Congress To Hold NIH Accountable

"MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID.

Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to hold the NIH accountable for prioritizing and accelerating ME/CFS research as part of its $1.15 billion Long COVID (PASC) research initiative, including expediting clinical treatment trials of repurposed drugs used in treating ME/CFS.

(We also wrote the NIH to inform them of our request for additional oversight from Congress.)

(...)

The NIH needs to act urgently and aggressively to leverage both research and clinical learnings about ME/CFS in order to accelerate delivery of treatments for Long COVID patients – and everyone suffering from ME/CFS. But, NIH Director Francis Collins’ testimony at the hearing – and the recently updated NIH-Wide Strategic Plan for COVID-19 Research – show significant gaps in addressing these issues. "

More: https://www.meaction.net/2021/05/21/meaction-urges-congress-to-hold-nih-accountable/
 
"Severe ME Artists Project

#MEAction is excited to announce our Severe ME Artists Project! This project will be an opportunity for those with severe ME to showcase their artwork with multiple ways to participate.

The Severe ME Artists Project will feature a video compilation and online gallery of written work. The video and online gallery will be shared with the community around Severe ME Day--August 8th. Our goal is for people to be able to watch the video and read through the gallery when it is best for them.

To participate in the project, please read the details in the article here."

https://www.meaction.net/2021/07/12/severe-me-artists-project/
 
As far as I know this is the evidence review that was published a couple of months ago and which they have invited comments on. It's a research review, not a guideline, and they have said they will not be using it to develop a new guideline as there is no new treatment research that would change the current guideline. We have threads on it here:
https://www.s4me.info/forums/2021-usa-cdc-me-cfs-diagnosis-and-treatment-review.170/
 
Trish said:
As far as I know this is the evidence review that was published a couple of months ago and which they have invited comments on. It's a research review, not a guideline, and they have said they will not be using it to develop a new guideline as there is no new treatment research that would change the current guideline. We have threads on it here:
https://www.s4me.info/forums/2021-usa-cdc-me-cfs-diagnosis-and-treatment-review.170/
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Thank you @Trish I have not been following this, but will try to catch up.
 
mango said:
"Severe ME Artists Project

#MEAction is excited to announce our Severe ME Artists Project! This project will be an opportunity for those with severe ME to showcase their artwork with multiple ways to participate.

The Severe ME Artists Project will feature a video compilation and online gallery of written work. The video and online gallery will be shared with the community around Severe ME Day--August 8th. Our goal is for people to be able to watch the video and read through the gallery when it is best for them.

To participate in the project, please read the details in the article here."

https://www.meaction.net/2021/07/12/severe-me-artists-project/
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#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

https://www.meaction.net/2021/08/23/meaction-6-me-orgs-call-for-cdc-to-change-how-it-tracks-me-cfs/

#MEAction said:
Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).

Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue syndrome which has the same code as the symptom of chronic fatigue. As a result, it is impossible to accurately track the mortality and morbidity of ME/CFS or its relationship to Long COVID. This affects not only the more than 1.5 million Americans with ME/CFS, but also the tsunami of Long COVID patients who could develop ME/CFS.

This proposal will be discussed at the upcoming meeting of the NCHS ICD-10-CM Maintenance Committee on September 14-15, 2021. Details on registration for this proposal will be shared when NCHS announces it. After the meeting, there will be an opportunity for public comment prior to a final decision by NCHS. If the proposal is accepted, the change would be implemented in October 2022.
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