1) #Narcolepsy and other sleep disorders are under dx in general, but I think this is even more so in #pwME & #pwLC

Although the sleep dysfunction is recognized, it gets attributed as “part of”, instead of a separate comorbid condition.

sleepfoundation.org/narcolepsy/dia… 2) In addition, hypersomnia is often seen as a consequence of insomnia (both Sx in Narcolepsy), rather than 2 ends of the sleep disorder spectrum.

1. It occurred to me earlier that instead of separate research and clinician’s sections, we could schedule an interconnected series that unifies a particular research area with clinical practice and cases as part of our roundtables, & how that area affects the rest of the system. 2. To further align this interconnectedness , having research and clinical on the same RT to discuss the state of the research, how it applies to clinical practice (use of existing therapeutics why and how) & how it all connects to the rest of the system (implications)

1. One of my favorite herbs (except when I bump into it) is stinging nettles. It’s delicious as a sautéed green, or in soups/tea. It’s a great fertilizer & has a range of medicinal properties. One of them is mast cell stabilization 2. The activation of NF-kβ, a transcription factor that leads to oxidative damage via activation of pro-inflammatory cytokines, was found to be substantially inactivated via inhibition of its nuclear translocation by both exercise and nettle supplementation

1. The power of community in all aspects of life: After my adult kids were back home with us in 2020-2021 we decided to stay living together and buy a property with some separation, but lots of communal living, which we did in November 2022. 2. We bought a house with 3 apartments and lots of common outdoor space where we can garden, and have 5 dogs. My kids love and nurture for their dogs is incredible and so beautiful to see.

1. Patients suffering from vaccine induced ME or LC, or where vaccines worsened their conditions are facing double the gaslighting from doctors and from many on the community that should be supporting them. We need to hold space for nuanced conversations and believe ALL patients. 2. The polarization that this topic brings is intertwined with politics, and in my opinion, driven by fear and a lack of ability to understand the deeper systemically driven issues that underline vaccine hesitancy. However, 2 things can exist at once.

1. Longest crash since last May today. Usually my crashes are “mini” meaning they don’t last more than a couple of hours and are not frequent. 43 years with ME helps me identify possible factors:

2. Possible factor a) sudden drop in barometric pressure. I usually have a hard time with this, and it induces a higher level of fatigue than the current baseline. @Really_Richelle thinks the “sudden” drop is more significant than the total.

Happy to be in Lisbon at this amazing conference with @tessfalor @arta_semita and @miguelcasali Introducción by Joan Serra ( millions missing alianza), Jaime Branco, nova med school, Rita Fladen, FLAD, Ines Alfonso, MYOS #MELCFLADLISBON

Thank you @ar_pnw for this great clip. Many years ago I dreamed of bringing clinicians together to volunteer their time to treat and train patients without the financial resources to pay for experts. I initially imagined a multidisciplinary clinic in RI 1/

https://twitter.com/ar_pnw/status/1769818491039654044

I then said to myself: that’s not enough, one clinic would still have so many limitations, so I allowed myself to dream of clinics everywhere, dedicated to providing access to those who’s financial resources keep them from accessing adequate care 2/

I know many of you know this already, but for those who may not: It is good practice to always get a copy of all your medical ANYTHING. Orders for labs and images to be matched with the results 1/ You have a RIGHT to your records. Often parts of an order are missed. If you match the order with the results, you can confirm. Always get copies of your results, not just the report, but actual results including images and keep your own copies 2/

The individual costs of #chronicillness like #mecfs and #LongCovid are profound. This is why it baffles me when critics think that people prefer to sit at home and do nothing. even people who opt out of the workforce do so for a purpose. 1/n Let's start with the financial costs to the ill person: Loss or decrease in income, added expenses for medication, supplements, medical devices, tests, doctor's visits, food. Imagine all that money was saved and/or invested 2/

It infuriates me to see ME/LC psychologized. Not only because it seeks to minimize the very real pathophysiology of these conditions, but also bc it shows a gross lack of understanding of biochemical processes by those who are supposed to know. 1/ The fact that these conditions are systemic and also affect brain chemistry get weaponized to justify the psychologizing of the symptoms. ei: I get PEM from intense negative emotions, the stronger the emotion, the worse the PEM 2/

Key points summary - Ron Davis :
Susceptibility factors:
Immuno genetics /dysregulation
Micronutrient deficiency
Viruses
Microbiome (virome mycobiome, archaeome, etc)
Mitochondrial All of them are risk factors and we need to understand the interrelationships of complex disease and the possibilities for differentiated treatment by patient stratification. Biomarkers remain elusive and clinical subtypes need phenotype & system biology approach

How do you determine molecular cause of MECFS and how do you treat and cure it ? There are many crossroads in the maze of trying to treat MECFS. The decision taken had to do with the experience and perception of the person taking the decision

Rob Phair - Itaconate shunt hypothesis for MECFS TCA cycle - itaconate not discussed prevalently within this cycle. The transformation with CoA-SH was believed to be the end of that part of the process.

Kristian Sommerfelt - functional capacity questionnaire in MECFS Deciding disability measurements and work risk capacity in MECFS pts - how to assess functional capacity?

Dr Jesper Mehlsen - Towards a uniform treatment regimen There is knowledge in the Pathobiology of MECFS - using that to direct treatment

Post infection consequences of neurocognition #longcovid on a global level has shown the consequences of LC and brought attention to post viral conditions

There is abnormal CD8 and T cell metabolism in MECFS This phenomenon is characteristic f T cell fatigue in a reactivation environment

Maureen Hanson from Cornell: Immune abnormalities and viruses in ME 65 M people affected worldwide with #MECFS - it has ocurred in outbreaks or sporadic, outbreaks associated with polio, gradual or sudden onset, no drug or cure. Dx criteria: sore throat, tender lymph, fever, muscular pain, headaches. Reactivation of herpes observed in outbreaks

Alain Moreau, #LongCovid covid to #MECFS transition 1 in 10 previously infected individuals report LC sx. Over 50% of LC will become mecfs. Over 14.4 million Americans are still dealing with LC.

Rethinking the role of virus in #longcovid and #mecfs by Nancy Klimas, MD touching on all the systems that influence the conditions can be overwhelming. Viruses were a hot topic early in the game and they have come back as the center of attention, which she things is a good thing