Bottsie Hicks

@sunsweptforest Same here...trying but I need to rest... Take care. 🙏🫶🫂

still in a crash (pem) atm, but will be back when able no need to worry

Isn't this expected based on the work of @BhupeshPrusty and Bob Naviaux? "In this study, we found that none of 25 patients with ME/CFS had peripheral blood evidence of a fully reactivated HHV-6 or HHV-7 infection, and only 8 of 20 (40%; 95% CI = 0.19–0.64) had evidence of partial reactivation measured by FISH analysis of HHV-6 small noncoding RNA U14 in whole blood. However, using an in vitro reporter cell assay, we showed that serum from ME/CFS patients contained an activity that produced mitochondrial fragmentation, decreased mitochondrial ATP production, and induced a powerful antiviral state." naviauxlab.ucsd.edu/wp-content/upl…

@seanstidston @Ronaldw_Davis We'll see...

@BottsieHicks @Ronaldw_Davis Don’t see how this study helps advance anything. Waste of time in my opinion.

Very interesting preprint from @Ronaldw_Davis's Stanford group! It backs up Lipkin's (aka The Virus Hunter) study concerning viruses present in #MECFS patients. Ron said several years ago he didn't think antivirals were going to be the answer. Looks like he was right...again. 🧩

@seanstidston @TomKindlon Hope that Ron and his team are on the right track.

@BottsieHicks @TomKindlon Hope of what from this ?

New from Ron Davis team: Virus Genome Sequences in the Blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients medrxiv.org/content/10.110… "Surprisingly, more viruses were found in the healthy controls than in the ME/CFS patients" #MEcfs #CFS

@32Sfc46582 @Ronaldw_Davis Yes, it seems to have multiple triggers...which causes a cascade of symptoms that can vary greatly. I'm agreeing more and more that we need to focus on the switch that needs to be reset. I don't feel symptom subsets will be as crucial if that can be done.

On peut avoir la MECFS de tellement de manière... moi je ne saurai jamais si c'est covid, lyme, ou intoxication médicaments (tramadol) avec alcool. Ou le stress (je travaillais bp). Je pense que tout réside dans une mauvaise réponse immunitaire, que notre corps ne fonctionne plus de la même manière. Pourquoi ? Mystère.

@32Sfc46582 @TomKindlon Not sure if this is for me or Tom... I attended but got discouraged at the end when they predicted 10 more yrs to find answers. I feel answers are closer than that. Ron is following body systems, not symptoms, which is what their focus seemed to be.

@BottsieHicks @TomKindlon Tu as suivi les conférences ICANCME ? Rien de positif pour nous, malades MECFS ?

@32Sfc46582 @Ronaldw_Davis Not sure, Romain...not able to dive into this right now. I was wondering how long the ME/CFS patients had been ill. That might determine whether they were sick before Covid hit or after. I needed this today~gives me hope again. Ron can always be trusted to follow the science. 🧩

@BottsieHicks @Ronaldw_Davis Il n'y a pas le covid 19 ?

@CureLongCovid That's great! When you love what you do, it's a calling...not just a career or a job. 🫶🙌🫶

@BottsieHicks Thank you! I’m so proud of her. She graduated from Boston College in 2023, she’s been working at a psychiatric hospital through college and after and loves it 🩵🩵🩵🩵

My daughter was accepted to nursing school! She’s on her way to the next stage of her career as a psychiatric RN! 🩵🩵🩵🩵

Next up: @DrRebeccaRyan! Immediately talking about autonomic dysfunction, POTS, and MCAS, in the context of “functional” GI disorders - which she points out are NOT psychologically driven. So excited for this one. #ICanCME2025

@joshual_tm @exceedhergrasp1 @MEActNet

​Following up on Naviaux’s excellent work around extracellular ATP (eATP) / “Cell Danger Response”, which can act as an “alarm signal” relay and/or loop that bridges nervous system cells and other tissues. This extracellular ATP signalling has been observed in ME/CFS, ASD, ADHD, PTSD and various other disorders / syndromes. pubmed.ncbi.nlm.nih.gov/38679359/ The pathway also works in both directions, allowing a systemic cascade / loop to be created from any source, where sufficient eATP signalling exists to overcome CD39/73/ADA purine salvage metabolism, which also provides the corresponding “alarm dampening signal” - adenosine and inosine. Interestingly enough, the main de novo “dampening signal” synthesis pathway is inhibited by impaired glycolysis -> pentose phosphate pathway -> PRPP (and other) metabolism and the purine nucleotide cycle in muscles, post-exertion. These are known issues in ME/CFS, LC, PVS, etc In this manner, with the “dampening signal” inhibited, various accumulated “insults” could potentially lead to a form of dysautonomia, where the nervous system’s pattern recognition systems identify and amplify existing metabolic alarm signals, manifesting biochemically as a wide range of effectors - including hyperactive innate immune response and mast cell activation (see figure 19). Naviaux and others have been exploring suramin as an intervention to help shut down the P2X7 relay / loop with early success. I’m currently researching a different approach - restoring the problematic “dampening signal” metabolism, as part of a more comprehensive process. [Watch this space.]

@I_need_a_razor 🙏🫶🫂

This neuro inflammation is torture. The head pressure, tinnitus and constantly being lightheaded even when lying down is brutal af. Can’t believe I was able to walk 70 miles in a few weeks and now I struggle to brush my teeth in the morning. Gotta figure out what’s causing it

@FatigueMe92484 @tessfalor @doc4care @arta_semita @Naomi_D_Harvey Sorry, but I'm not able to read all of this atm. It would be difficult at any time, but right now I'm trying to recuperate from the ICanCME conference. I'll try in a couple of days.🤞🙏🤞

@tessfalor @BottsieHicks @doc4care @arta_semita @Naomi_D_Harvey

Here is a synopsis of many of my posts on how MCT1 and the role it may play in MECFS and MCAS. Grok gives its own review of the hypothesis that I have made. x.com/i/grok/share/V…

@tessfalor @CureLongCovid (Julie, perhaps your daughter?) @DrMaureenHanson @CenterRes @JackHadfield14 @atranscendedman @ngklimas @LBatemanMD @Rivkatweets Contact Dr. Jarred Younger at University of Alabama Birmingham. :)

We would love to get students involved in our research projects. Who are the researchers or university programs likely to have students (including undergrads) who are interested in ME/CFS and Long COVID?

@NeurologistMom He is the reason Hillary Johnson @oslersweb called her expose' on ME/CFS "Osler's Web".

“Listen to your patient. He is telling you the diagnosis.” -Sir William Osler

@32Sfc46582 @x3r0gx4 @minadjenkins @sunsopeningband Romain, after thinking about presentations in the conference, I'm more firmly convinced that @OpenMedF's team working on Phair/Davis Itaconate Shunt Theory and Naviaux's Cell Danger Theory are where we need to concentrate...reset the switch that's causing the cascade of symptoms.

@BottsieHicks @x3r0gx4 @minadjenkins @sunsopeningband 10 ans pour quoi chère Bottsie ? Pour comprendre la maladie ? Pour un traitement ?

A lot of talk about what we *can do.* It's exciting and fun. Not enough talk about comparing that to what we *are doing.*

@minadjenkins @sunsopeningband 💪🙏💙🫂

@BottsieHicks @sunsopeningband I’m not sure that the answers are that forthcoming, Bottsie, and I’m pretty sure that I’m past the time when they would have helped me. What I want is to see good work underway by an army of good minds, well funded. While I’m here, I will fight for that.