#notjustfatigue — Public Fediverse posts

Feb. 2026, Business Journal: In Her Own Words: Elizabeth Ansell documents economic impact of chronic illness 'What started as a personal battle with ME/CFS..no FDA-approved treatment, became the foundation for creating an award-winning nonprofit, #NotJustFatigue' www.bizjournals.com/bizwomen/new...

In Her Own Words: Elizabeth An...

Nice to read this piece on the background to #NotJustFatigue :
"In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome"

https://www.bizjournals.com/bizwomen/news/latest-news/2026/02/in-her-own-words-elizabeth-ansell.html

I can relate to needing to prioritise about what I spent my energy on

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

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The #NotJustFatigue group has posted a recording of their September 25 livestream event.

https://www.notjustfatiguelivestream.org/

#MEcfs #CFS #PwME @mecfs

#NotJustFatigue "Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS"

Livestream event on Sept 25, 3:00 to 3:30 PT. Includes an online briefing & moderated question/answer period (submit questions in advance).

https://www.notjustfatiguelivestream.org/

#MEcfs #CFS @mecfs

Policy asks:

- Restore funding for Congressionally Directed Medical Research Program (CDMRP) & protect ME/CFS as a topic area

- Protect & restore the CDC’s Chronic Fatigue Syndrome Program

- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with #MEAction and #NotJustFatigue)

- Support 10-year follow-up to the 2015 IOM/NASEM report

- Ensure ME/CFS is included in NIH restructuring discussions

Details:

https://solvecfs.org/wp-content/uploads/2025/07/Congressional_Briefing_061625Final.pdf

@mecfs @longcovid

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#USPol #MEcfs #LongCovid #POTS

Some Things I’ve Read Recently…in STAT, The Sick Times, Van Der Zee’s Blog

By David Tuller, DrPH

Embedding ME/CFS in NIH’s RECOVER initiative

Ian Lipkin is a well-known professor of epidemiology at Columbia University and director of the Center for Solutions for ME/CFS, funded by the U.S. National Institutes of Health (NIH). In a recent opinion piece for STAT, he and ME/CFS patient advocate Elizabeth Ansell, the founder and executive director of a campaign slugged #NotJustFatigue, call for the NIH’s RECOVER initiative, which investigates Long Covid, to fully embed ME/CFS into its future plans.

The authors note that their appeal for better integration of ME/CFS into the RECOVER mission is aligned with recent recommendations from Congress as well as scientific and medical experts. They also highlights the many challenges that people with ME/CFS can face in trying to navigate an uncaring health care system and deal with dismissive or unsympathetic clinicians.

Here’s a key passage:

“RECOVER has the potential to be a model for innovative, patient-centered research. But for that to happen, NIH must listen to Congress, the scientific community, and the millions of individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative. With hundreds of millions in funding and the largest-ever cohort of people with post-viral illnesses, RECOVER could provide the answers that ME/CFS researchers have sought for decades. NIH must seize this moment to lead.”

This is a smart message. But it presumes the future research will be smart as well. The article could have clarified that not all cases lumped into the Long Covid category are the same and that only a subset meet ME/CFS criteria. For research to be useful, it clearly needs to take these facts into account.

You can read the piece here. (Unfortunately, it is behind a paywall, but there seem to be archived versions out there.)

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Dutch CBT/GET ideologues maintain high media profile

My friend Anil van der Zee frequently blogs and makes haunting videos about his experiences as a longtime severe patient. He also takes stunning photographs from his perch on the bed in his Amsterdam flat. He recently wrote a post about his distress at seeing that leading Dutch advocates of cognitive behavior therapy (CBT) and graded exercise therapy (GET) continue to have a major media presence and significant impact on public debate.

Anil’s work is always worth a read (or a view, depending on the medium). Here’s the opening of his recent post (via Google translate):

“I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories of children and young people with long COVID incredibly distressing; they are consistent with what we have seen in ME for decades. Many of those with ME are now adults, some even 60+ years old. I am glad that at least there finally seems to be more help for a small proportion of children and young people with long COVID. Hopefully this will be beneficial to all children and young people with post-acute infectious diseases (PAIZ) or infection-associated chronic diseases.

“On the other hand, I read with pain in my heart that a doctor like Sanne Nijhof is given a large platform in the media. It is doctors like Sanne Nijhof and her predecessor and colleague Elise van de Putte from the Wilhelmina Children’s Hospital (WKZ) who have not only researched cognitive behavioral therapy/graded exercise therapy (CBT/GET) in their FITNET-study, but have also actively promoted and praised this treatment.

“As a result, CBT/GET has been applied for years as a standard treatment for children with ME, while we have known for decades that people with ME deteriorate due to post-exertional malaise (PEM) – getting sicker after minor physical, cognitive, sensory, or emotional exertion – from the buildup of activities that these treatments are based on. It is also important to mention that about 50% of Long-Covid patients meet the ME criteria and therefore also have PEM.” 

You can read the full blog post here.

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Information disappears from U.S. government websites

The ongoing dismantling of U.S. government agencies and programs is worldwide news. The Sick Times, the online outlet that covers Long Covid, is tracking how the dismantling impacts this specific domain. The news organization reported the other day on the removal of important online information from government websites. The article’s headline: “Now offline: Government resources about Long COVID as a disability.”

Here’s some of the bad news:

“Several government resources about accommodations for people with Long COVID have become unavailable in the last week, following purges of government websites and datasets under the Trump administration. These pages offered crucial information about rights under the Americans with Disabilities Act (ADA) for people with Long COVID and their employers.

“In 2021, the federal government recognized that Long COVID can be considered a disability under the ADA. Pages and articles on AskJAN, a public-facing website by the U.S. Department of Labor’s Job Accommodation Network, explained how people with Long COVID could use this law to request accommodations that would make their jobs, schools, or other aspects of their day-to-day lives possible.

“As of February 11, Long COVID is no longer included in AskJAN’s directory of disabilities. The website’s Long COVID resources — which previously included information about the disease’s legal status, key symptoms, and suggestions for accommodations — are also unavailable. (View an archived copy of AskJAN’s Long COVID landing page here.)“

You can read the full article here.

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Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.

(View the original post at virology.ws)

#anilVanDerZee #lipkin #NotJustFatigue

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue notjustfatigue.org

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

How do we find a cure for #MECFS? Stop the lip service and get the government to fund clinical trials for the disease. It’s time to sound the alarm on this health crisis. This is the tenth and final video in a ten part video series by #NotJustFatigue

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue notjustfatigue.org

@mecfs

Living in a society that fails to acknowledge the pain and severity of ME/CFS is challenging. Friends and family might not understand the disease, and watching peers continue on with their lives, while the disease takes its toll, can be torturous. This is the ninth video in a ten part video series by #NotJustFatigue

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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From: #NotJustFatigue

Have you seen our new video series page on our website? All ten of our short form, docustyle, educational videos in one place! Be sure to check it out at
http://notjustfatigue.org

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs

Press release:
"#NotJustFatigue Urges NIH to Address Funding for ME/CFS, Ensure Inclusion in the RECOVER Initiative*"

https://www.pr.com/press-release/919698

*Set up for Long Covid

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

@mecfs

From: @Notjustfatigue

What is #MECFS? We asked some experts to describe the disease in layman’s terms. Here’s how they responded. This is the eighth video in a ten part video series by #NotJustFatigue

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org
@mecfs

From: @Notjustfatigue

Is it a coincidence that three times more women than men are living with #MECFS and #MECFS is our country’s most underfunded disease, with respect to the severity of disease and the number of people affected? No. This is the seventh video in a ten part video series by #NotJustFatigue

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

@mecfs

From: Notjustfatigue

Many people living with #MECFS are dismissed and not believed, oftentimes even by those closest to them. That in and of itself can be a traumatic experience, serving to further exacerbate the pain of the disease, and highlight the lack of support of those affected. This is the sixth video in a ten part video series by #NotJustFatigue

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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This is a longer of 2 trailers for the #Notjustfatigue 15-minute documentary on ME/CFS

Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out her Facebook page which is just starting #Notjustfatigue which links to her website.

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MEawareness @severeme
#SevereME

This is one of 2 trailers for the #Notjustfatigue 15-minute documentary on ME/CFS

Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org which hosts the full 15-minute video

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MEawareness

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For what they are worth, here are my initial thoughts on the #notjustfatigue 15-minute documentary which can be watched for free here:
https://www.notjustfatigue.org/film

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEAwareness @mecfs #mecfs @severeme

[Thread]

I thought I would highlight the #notjustfatigue 15-minute documentary which can be watched for free here:

https://www.notjustfatigue.org/film

Many of you may have seen the nonprofit’s short videos but I think the film itself is less well-known

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME @severeme

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

@mecfs #mecfs

From: Notjustfatigue

Research tells us #MECFS affects people of all ages, races, and socioeconomic groups. Everyone is at risk. You could be next. This is the first video in a ten part video series by #NotJustFatigue

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

@mecfs #mecfs

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

@mecfs

From: #Notjustfatigue

In 1988, the CDC named the disease “Chronic Fatigue Syndrome”, which set in motion decades of stigmatization of those suffering. While the US government currently uses the term ME/CFS on their websites, the trivialization of the condition due the name still remains. Let’s confront this head on. This is the third video is a ten part video series by #NotJustFatigue .

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

From: Notjustfatigue

With fewer than 1/3 of medical school curriculums currently addressing ME/CFS and less than 1/2 of medical textbooks containing information about the disease, it’s undeniable that ME/CFS has slipped through the cracks of our modern medical system. This needs to change in order for people with #MECFS to get the help that they need. This is the fourth video in a 10 part video series by #NotJustFatigue

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME

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