u/attilathehunn

The post is already >7 days old but to avoid breaking the rule on brigading I wont link it

OP (PA flare):

> I’ve been seeing more and more patients complaining of chronic, diffuse joints pain (often stating that they have hEDS as told by TikTok) along with fatigue, brain fog, and really limited tolerance for even mild activity. A lot of them feel like physical therapy makes things worse and are hesitant to try medication or find them unhelpful. In the last two weeks I have had two patients request that I fill out disability paperwork. I find these visits challenging, especially when the exam is largely unremarkable and the usual approaches don’t seem to help or are declined. I want to support them and validate what they’re experiencing, but I also feel stuck in terms of what to offer.

One of the comment (MD flair, 154 upvotes)

> You'll find that many of these patients meet criteria for ME/CFS. The criteria are:

> * Fatigue significant enough to reduce functional capacity lasting greater than six months

> * Post-exertional malaise, meaning an increase in symptoms lasting at least 24 hours after exertion (which may be physical or cognitive)

> * Unrefreshing sleep

> * Either brain fog or orthostatic intolerance

> You can find physical exam findings on these patients if you know what to look for. A NASA Lean test is a good place to start to find objective evidence of orthostatic intolerance.

> First-line treatment for these patients is pacing, which is the art of staying within the energy envelope in order to avoid post-exertional malaise. Repeated triggering of post-exertional malaise can and often does lead to worsened physical functioning over time. At worst, these patients end up bed-bound, unable to eat, and require enteral nutritional support, as well as 24-hour caregiver support. It's a really horrendous disease.

> I'm actually writing a book on the subject and offering peer-to-peer consultation support, because most of these patients go without diagnosis or treatment. Thank you so much for your curiosity and interest in these patients. They're a fantastic group to treat once you know what you're doing.

Another comment replying to someone suggesting exercise (MD flair, 49 upvotes)

> Screen for ME/CFS before prescribing exercise and definitely don't prescribe exercise if they have post-exertional malaise. And don't assume depression if screen is positive due to overlap between symptoms. Normal sleep hygiene advice does not necessarily help people who have ME/CFS. Definitely do workup for other causes of fatigue.

OP on another comment:

> I work at an FQHC.. a lot of my patients come in with distrust in the medical system so if anything I feel I overly compensate by trying to gain their trust. So yes, I do take what they say at face value. I posted last night because I couldn’t sleep thinking about what else I could do for my patient who is struggling with brain fog and generalized fatigue. They use a cpap machine for OSA, are in talk therapy and started physical therapy a few weeks ago though state they are out of commission for 2-3 days after each session. I referred them for neuropsych testing and neurology 2 months ago and the next available appointment is in January 2027!

> So now they are unable to work and will be moving back in with their parents at 34 years old because they can’t afford rent. We submitted a disability claim though that will likely take forever.

One of the replies (MD flair, 15 upvotes)

> Out of commission for 2-3 days after PT session is classic for PEM in ME/CFS. Disability claims are tough bc scarcity of objective findings. A 2-day CPET is one of the more effective ways to objectively document PEM, but logistically challenging and almost guaranteed to trigger a PEM flare.

Of course there are a lot of other things said on the thread. All kinds of diseases cause fatigue and the other symptoms the OP mentions. Some people do say check for depression, however very few said that ME is depression or a functional/psychiatric illness, and when they do they get corrected.

So things are looking up in terms of doctor awareness! I get the sense that doctors who go on social media to talk to other doctors and patients are more knowledgable about this stuff than doctors who just clock off and go home.

Definitely for those of us bedbound/disabled its nice to see doctors working on the problem

> Highlights

> * In utero exposure to SARS-CoV-2 resulted in altered neonatal brain volumes in gray matter white matter & left hippocampus.

> * Changes in cortical gray matter mediated deficits in cognitive scores toddlers who were exposed to SARS-CoV-2 in utero.

> * Cognitive scores mediated an increase in anxiety scores at age two for children who were exposed to SARS-CoV-2 in utero.

> Abstract

> Background

> In historical viral epidemics, such as the H1N1 influenza and Zika viruses, prenatal exposures were correlated with risk for neuropsychiatric conditions in offspring. However, the long-term effects of prenatal COVID-19 viral exposure on offspring neurodevelopment are still being discovered.

> Methods

> We prospectively recruited mother-baby dyads during the COVID-19 pandemic, who had been exposed to the SARS-CoV-2 virus during pregnancy (2020–2022) into a longitudinal infant brain development study and compared them to a low-risk normative pre-pandemic cohort (2016–2019). Quantitative 3-D volumetric magnetic resonance imaging (qMRI) was conducted at a neonatal visit when the infant was approximately 2 weeks of corrected age. Behavioral development was assessed using the Bayley Scales of Infant and Toddler Developmental, Third Edition (BSID-III) and the Infant-Toddler Social and Emotional Assessment (ITSEA), when the child was approximately 2 years old. An ordinary least squares regression model was used to determine the neurodevelopment of toddlers relative to their exposure to the SARS-CoV-2 virus. Mediation analyses were performed to assess how in utero exposure to SARS-CoV-2 affected the newborn brain and toddler developmental outcomes. Analyses were adjusted for maternal age and educational level, infant sex, and total brain volume on qMRI.

> Findings

> This study prospectively recruited 142 mother baby dyads, 103 from a normative prepandemic cohort and 39 pairs who had been exposed to the SARS-CoV-2 virus during pregnancy. In utero viral exposure was associated with altered newborn regional brain volumes in the cortical gray matter (q = 0.001), subcortical gray matter (q < 0.001), cerebral white matter (q = 0.005), and left hippocampus (q = 0.008). Viral exposure additionally was associated with lower cognition (q = 0.010) and social emotional (q = 0.001) scores on the BSID-III and higher scores on the internalizing domain (q = 0.040) of the ITSEA. The lower cognition scores on the BSID-III following SARS-CoV-2 exposure were mediated in part by the altered cortical gray matter volumes (21.9 % mediated, p = 0.034). These lower cognition scores further mediated the relationship between the SARS-CoV-2 viral exposure and increased internalizing behavior scores on the ITSEA (61.0 % mediated, p = 0.040).

> Conclusions

> This study reports that in utero SARS-CoV-2 viral exposure was associated with decreased cognitive skills in toddlers at age 2, and this association was mediated by cortical gray matter volumes in the newborn brain. In addition, toddler cognitive scores further mediated an increase in toddler internalizing behaviors. These findings highlight the need for ongoing assessments for children born during the COVID-era.

https://www.sciencedirect.com/science/article/pii/S0889159125004805

This study was published in 2022 but it hasnt been posted anywhere on reddit before. Seems interesting if people are using pluslife/metrex tests.

> Time-of-Day Variation in SARS-CoV-2 RNA Levels during the Second Wave of COVID-19

> Abstract

> Circadian rhythms influence and coordinate an organism’s response to its environment and to invading pathogens. We studied the diurnal variation in severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) RNA in nasal/throat swabs collected in late 2020 to spring 2021 in a population immunologically naïve to SARS-CoV-2 and prior to widespread vaccination. SARS-CoV-2 diagnostic PCR data from 1698 participants showed a significantly higher viral load in samples obtained in the afternoon, in males, and in hospitalised patients when linear mixed modelling was applied. This study illustrates the importance of recording sample collection times when measuring viral replication parameters in clinical and research studies.

https://www.mdpi.com/1999-4915/14/8/1728

I wonder if this implies that you're more likely to catch covid from an afternoon exposure.

One of the small silver linings of the ongoing covid pandemic is increased attention, funding and research into ME.

We're now in the 7th year of that pandemic. And has any of this actually happened?

Has anyone whos had ME before covid benefitted from long covid? Or just had doctors and family be more supportive now that they maybe accept the thing is more real? Or maybe that long covid clinics are more numerous and also treat ME from other causes? Or even just that you managed to get a diagnosis instead of being told you're mental?

Some treatments I can think of new from long covid: microclots (nattokinase, anticoagulant therapy), rapamycin, maraviroc, stellate ganglion block, inuspherisis, nicotine patches.

There's also the downsides that a lot of pwME caught covid and became worse. And crowded indoor places always have a danger now from covid. You can mask of course, but even masking makes you stand out and be stigmatised in many places.