News from the USA, United States of America

Dolphin said:
U.S. Court of Appeals rules on a disability case regarding someone with CFS/FM:

https://media.ca7.uscourts.gov/cgi-...:24-1718:J:Maldonado:aut:T:fnOp:N:3405270:S:0
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Denied.
Moreover, the ALJ noted that even if she further limited Padua to only sedentary exertional work (with the same non-exertional limitations), several jobs exist
in the national economy that Padua could perform, such as a document preparer, a hand packager, or a taper.
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They keep repeating this claim that "several jobs exist in the national economy that Padua could perform" throughout the decision. I'm not sure of the legal doctrine behind imagination-based careers. I have no idea what a "document preparer" could even mean, I guess it means paralegal, while the other examples are repetitive physical jobs that generally require standing up for 8h per work day. But they say she "appears alert and in no acute distress", because the only two possible states of human conscious alertness are fully functional and comatose, apparently.

The whole decision rests on the standard medical fallacy: no objective tests to confirm, patient says X, doctors disagree. This is hardly any more professional than whatever could have been going on a millennium ago making such decisions, and the decision isn't based on legal doctrine, it's entirely based around expert medical opinion. It's truly amazing how one of the most important professions is still partly stuck at the "Ugh smash rock" stage of development.
 
Dolphin said:
U.S. Court of Appeals rules on a disability case regarding someone with CFS/FM:

https://media.ca7.uscourts.gov/cgi-...:24-1718:J:Maldonado:aut:T:fnOp:N:3405270:S:0
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Appalling, infuriating, and terrifying - not only for the individual tragedy, but for the likelihood that this may be cited as precedent henceforth.

I do note, however, that "chronic fatigue" is used throughout, with "chronic fatigue syndrome" appearing only once - it is not clear to me whether this reflects the filing(s) or whether this is a deliberate confusion on the part of the court. The SSA's policy interpretation ruling regarding CFS (SSR 14-1p: Titles II and XVI) is not referenced anywhere.

This said, the wanton cruelty apparent in the acknowledgement that the trigger point assessment was indeed abnormal (the only abnormal finding apparently) and that this is "the only recognized test for diagnosing fibromyalgia" while continuing to assert a "conflict" between the medical evaluation and the patient's reported disability suggests that this was going to be rejected no matter what.

Absolutely sickening.
 
rvallee said:
Denied.

They keep repeating this claim that "several jobs exist in the national economy that Padua could perform" throughout the decision. I'm not sure of the legal doctrine behind imagination-based careers. I have no idea what a "document preparer" could even mean, I guess it means paralegal, while the other examples are repetitive physical jobs that generally require standing up for 8h per work day. But they say she "appears alert and in no acute distress", because the only two possible states of human conscious alertness are fully functional and comatose, apparently.

The whole decision rests on the standard medical fallacy: no objective tests to confirm, patient says X, doctors disagree. This is hardly any more professional than whatever could have been going on a millennium ago making such decisions, and the decision isn't based on legal doctrine, it's entirely based around expert medical opinion. It's truly amazing how one of the most important professions is still partly stuck at the "Ugh smash rock" stage of development.
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This is why I applied to my state's vocational rehab program before applying for social security disability: to try to find something I could do. I found a counselor there who used to work for social security disability and he showed me how to word my application for disability.

That is what I would urge people to do: go to their state's vocational rehab office apply for the program and try out various lines of work. You have to come up with ideas of what types of jobs you think you might be able to do. Then they support your effort, with some money and leads.

It shows good faith and is objective evidence of work failures. Document, document, document. Every visit to doctor hand him/her what you need to add to medical record (it will be requested by social security).

It's a job getting through this process successfully and longish and is probably more restrictive these days than back 25 yrs ago.

During the requisite physical exam, I was crying but not from tender points because I didn't have any that day. I had a lovely physician who was very kind. It took two years to get on medical insurance and disability payments, but I had no choice, did I.

If you are denied, you should contact a lawyer specialize in disability law and strategize the best way forward to appeal the decision. Yes, the whole process is unfair.

Edited to add: it's a war or a serious chess match: the patient vs the social security disability system. One must spend time gathering reliable information from patient groups and specialized lawyers before proceeding to the application process. It's like a criminal trial, in a way.
 
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rvallee said:
They keep repeating this claim that "several jobs exist in the national economy that Padua could perform" throughout the decision. I'm not sure of the legal doctrine behind imagination-based careers
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In the US if you are under 50 it is much harder to get disability as it is written into policy that people can retrain for other jobs such as sedentary ones. At 50 and above this requirement is less stringent.

As for medical records noting appearance, attention, alertness, that gets written always. When you have a long term condition you get used to being alert at medical appointments as you need to get the most out of them. I never see wheel chair use, or need to elevate feet or lie down during appointment written down.

The moral of the story is also that the claimant should have taken high power pain meds for fibromyalgia otherwise they don't have debilitating pain. Ugh, if only the pain killers really worked in the real world.
 
Dakota15 said:
Santa Fe New Mexican: 'Long COVID symposium in Santa Fe aims to improve diagnoses, treatment’

'Altmann said the symposium is about inviting international experts on long COVID together to “knock their heads together” in search of answers for patients.’

“There are so many bright people and so many opinions and so much data published — so why aren’t we making people better?” Altmann said.

Because patient advocates have played such a significant role in pushing for long COVID research, the symposium will include representation from patients and advocates. Hannah Davis, an artist, data scientist and one of the founders of the Patient-Led Research Collaborative for long COVID, coordinated the conference alongside scientists like Altmann.

All told, Altmann said he’s optimistic researchers will find “the beginnings of the answer” on long COVID in Santa Fe later this month.

“There’s 400 million really miserable people around the world suffering with this thing, and it’d be very gratifying if they could associate the turning point, the tipping point with Santa Fe,” Altmann said.
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Do we know if the DecodeME team will be attending?
 
Families USA: 'Armond Dai: Navigating Long COVID, Disability Hurdles and Medicaid Cuts'

'Armond Dai was building a promising career in architecture in Washington, DC when everything changed. After contracting COVID-19 twice, he developed a series of chronic illnesses that left him unable to work and desperate for answers. To this day Long COVID is not widely understood, and without clear lab results, qualifying for disability benefits became a daunting challenge.

Armond now lives with myalgic encephalomyelitis (also known as chronic fatigue syndrome) and an immune deficiency that leaves him vulnerable to frequent infections. “It’s not something you can just push through,” Armond said. “If you push through it, it will actually deteriorate your body further, and I realized I need to survive. I need to live.”

Like many people facing long COVID and other disabling conditions, Armond was forced to leave the life he had built behind.'
 
Dakota15 said:
Sharing from Twitter



#NotJustFatigue: "Big win in the Senate! After more than a year of advocating for federal research funding, Congress has officially recognized the ME/CFS Research Roadmap—and is now directing NIH to create a detailed implementation plan. This is a major step forward in the fight for treatments, diagnostics, and answers. The Senate language comes straight from our advocacy and @MEActNet, and shows that your voice is being heard. The House is expected to release its own version in the coming months before the two chambers reconcile later this year. We’ll be fighting to keep this language intact."

"The Senate report also calls for expanded research through the RECOVER Initiative and ARPA-H, specifically naming ME/CFS as a priority."

Here is the FY26 Appropriations Senate LHHS report, if you search Long COVID or ME/CFS in it.
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Source: U.S. Senate / Twitter/X / Not Just Fatigue
Date: August 1, 2025
URL:

Ref: Convert from jpg to txt,
https://document.online-convert.com/convert-to-txt


Big win in the Senate!

After more than a year of advocating for federal research funding,
Congress has officially recognized the ME/CFS Research Roadmap — and is
now directing NIH to create a detailed implementation plan. This is a
major step forward in the fight for treatments, diagnostics, and
answers. The Senate language comes straight from our advocacy and
MEActNet, and shows that your voice is being heard.

The Senate report also calls for expanded research through the RECOVER
Initiative and ARPA-H, specifically naming ME/CFS as a priority.

The House is expected to release its own version in the coming months
before the two chambers reconcile later this year. We'll be fighting to
keep this language intact.

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https://pbs.twimg.com/media/GxOSMnAXkAAdGRD?format=jpg&name=small

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research
Roadmap.

The Committee recognizes the urgent need to advance research for ME/CFS,
especially given its overlap with Long COVID and relevance across
multiple ICs and commends NIH for approving the ME/CFS Research Roadmap.
The Committee encourages NIH to implement the oadmap's recommendations,
including advancing biomarker discovery, diagnostic tool development,
and clinical trials. NIH is further directed to provide a detailed
implementation plan to the Committee within 180 days of enactment.

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https://pbs.twimg.com/media/GxOXW0XWwAAhI1o?format=jpg&name=900x900

Long COVID Research.

ARPA-H is urged to invest in Long COVID research to ensure its
high-risk, high-reward research is focused on drug trials, development
of biomarkers, and research that includes Long COVID associated
conditions, such as dysautonomia, postural orthostatic tachycardia
syndrome [POTS], and myalgic encephalomyelitis/chronic fatigue syndrome
[ME/CFS]. The Committee urges ARPA-H to coordinate with NIH on these
efforts to augment NIH's Long COVID research portfolio. ARPA-H is also
urged to prioritize the support of R&D programs and projects that can
enable clinical trials evaluating therapies which target key symptoms
and symptom complexes associated with Long COVID including widespread
pain, fatigue, non-restorative sleep, brain fog, dizziness,
post-exertional malaise [PEM], POTS and loss of taste and smell.

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https://pbs.twimg.com/media/GxOXW0SWcAEivlJ?format=jpg&name=900x900

Long COVID Treatments.

The Committee remains concerned about the economic and overall health
impact that Long COVID inflicts on the Nation. It is currently estimated
that between 6 percent and 19 percent of those infected with SARS—CoV-2
go on to develop Long COVID, resulting in up to 20 million Americans
suffering from this set of debilitating chronic symptoms. Long COVID is
characterized by a wide range of symptoms including severe fatigue, non
restorative sleep, cognitive dysfunction, and widespread pain. Further,
it resembles other post-acute infection syndromes [PAISs], such as
fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome
[ME/CFS] and related conditions, known as chronic overlapping pain
conditions [COPCs] or nociplastic syndromes. While the Committee is
pleased that NIH’s HEAL and RECOVER initiatives plan to target some
specific symptoms of Long COVID, the Committee is concerned that NIH has
not expanded the evaluation of treatments to address many common
symptoms associated with Long COVID either individually or that present
as syndromes which are combinations of symptoms. Furthermore, NIH's
research program has defined Long COVID narrowly, excluding many of the
common symptoms plaguing Long COVID sufferers. In June 2024, NASEM
released the 2024 NASEM Long COVID Definition, which encompasses
extensive lists of the symptoms and diagnosable conditions that current
science attributes to Long COVID. The Committee urges NIH to rebalance
its research program to prioritize clinical trials in pursuit of
effective treat-

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ments and to use the NASEM Long COVID definition to guide its choice of
symptoms and conditions to be address by the candidate treatments. Such
trials should target key symptoms and symptom complexes associated with
Long COVID including widespread pain, fatigue, non-restorative sleep,
brain fog, dizziness, post-exertional malaise [PEM], postural
orthostatic tachycardia syndrome [POTS] and loss of taste and smell.
Further, the Committee urges NIH to prioritize the support of clinical
trials evaluating therapies for Long COVID including therapies that have
demonstrated efficacy in treating COPCs or nociplastic syndromes that
overlap with Long COVID.
 
Sharing some local updates with the Long COVID Program at Minnesota Department of Health (MDH).

----

'Do You or Someone You Know Want to Help Shape MN’s Response to Post-Viral Chronic Conditions such as Long COVID and ME/CFS?'

Hearing from those directly affected is essential. Over the coming months, there will be opportunities to participate in MDH focus groups, design work sessions, and surveys.'

'The Minnesota Department of Health (MDH) is inviting people with lived experience of long COVID or other post-viral chronic conditions, such as ME/CFS and POTS, to participate in the Minnesota long COVID statewide planning activities. Over the next several months there will be opportunities to provide your insights and experiences. Your input will help shape planning and recommendations to address long COVID and related conditions.’

Sign up & form is here.
 
Yann04 said:
this is too much for me to parse through. Has it passed the senate, or just the committee?
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This report is just from the Senate Appropriations Committee. Funding still has to be passed by full senate and house.

#MEAction posted a news item on their website which is a little easier to read:

https://www.meaction.net/2025/08/01/celebrating-a-big-senate-win/

Jaime Seltzer posted a more detalied account on LinkedIn:

https://www.linkedin.com/posts/jaim...et-increase-activity-7357071058492944384-VACl
 
North Carolina Public Radio (WUNC): 'When Long Covid Rewrites Your Love Story'

'Today, we’ll talk about how an illness that’s affected tens of millions of Americans upended the life of one couple and forced them to confront big, existential questions — like could their marriage withstand this new reality?'

"Philip Hoover is one of 18 million American adults who've been diagnosed with long COVID'

"..energy crashes meant that Philip had to put a lot of his life on pause."

'And I realized that I had such severe brain fog that I couldn't actually understand any of the TV shows that we would watch'

'I would typically go to get answers, but it was pretty quickly apparent that really is just sort of like the Wild West for long COVID patients. Like no one really knew anything and it was disturbing to realize that, oh, we're actually having to educate our own doctors about this.'

"One of the things I think it's, it's important to explain is, so about 50% of people who have long COVID actually have what's called myalgic encephalomyelitis or chronic fatigue syndrome. So ME/CFS s is the acronym for that, and it's an energy limiting disease. It's a neuroimmune disease. Its symptoms range from anything from insomnia to muscle pain, but the worst symptom is post exertional malaise. That basically means that your symptoms can get worse with exertion, and we're not talking about like running a marathon or anything like that. Like some people can have a crash just from like sitting up. In bed."

' Around 400 million people globally have been diagnosed with some form of long COVID'

50-minute audio interview segment here.
 
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HealthCentral: 'This Epidemiologist Also Has Long COVID'

'After battling lingering symptoms that many dismissed as anxiety, Harvard researcher Beth Stelson, PhD joined a patient-led research & advocacy group that helped legitimize LC as a chronic health condition'

'For Beth Stelson, Ph.D., a social epidemiologist and researcher at Harvard T.H. Chan School of Public Health in Boston, MA, LC’s unrelenting symptoms left her physically, and occasionally professionally, unmoored.'

'If we can come together, my hope is that we can reprioritize some of this research that affects all members of our community.'
 
Public Books: 'Will “Care” Save Us?'

By Emily Lim Rogers

"It revealed the devastating free fall caused by a vacuum of care. Consequently, anyone writing about bodies, care, disability, and medicine over the last four years seemed compelled to answer the question: “What about COVID? For that matter, what about long COVID?”

While the CDC has acknowledged its existence for four decades, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) reached new prominence in the aftermath of COVID-19. The virus is causing syndromic postviral illness at massive scale, with many cases of long COVID diagnosed as ME/CFS."
 
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