• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers for human CFS/ME

Rufous McKinney

Senior Member
Messages
13,251
Hoping the study above can be translated into ME-comprehensible.

I went off and read about the actin, and its certainly fascinating.

My primary care doctor is personally writing books on the interface of inflammation, capillaries, end organs and the pulse pull of energy production versus nitrous oxide. I'd like to read his book 3. But thats tiring.

His inflammatory focus stems mostly from- the SUGAR obsession. (well, thats been removed here for quite some time now and still my blood sugar is erratic).

We discussed- how the ME issues are overlapping with these other issues. And there is Nitrous Oxide....(and our suspicious buildup of tryptophan, perhaps, and the trap?)...he is discussing it in this entirely "other" context.

The most noticeable inflammatory feelings that have subsided since largely eliminating sugar and going way low carb is: lots of odd joint pains..they stopped entirely.
 

SlamDancin

Senior Member
Messages
521
@necessary8
@mariovitali
@Janet Dafoe (Rose49)

We found that circulating EVs were significantly increased in ME/CFS patients correlating to C-reactive protein, as well as biological antioxidant potential.

proteins identified from ME/CFS patients are involved in focal adhesion, actin skeletal regulation, PI3K-Akt signaling pathway, and Epstein-Barr virus infection. In particular, talin-1, filamin-A, and 14-3-3 family proteins were the most abundant proteins, representing highly specific ME/CFS biomarkers

Interestingly Epstein Barr Virus infections was one of the pathways they identified by proteomics.

Personally CRP has often tested high for me and in one study I gave blood to at the Universiy of Utah, I was told I had the highest CRP in the entire cohort. They said it was active infection level high. So anything CRP related makes my ears perk up.
 
Last edited:

necessary8

Senior Member
Messages
134
Yeah, I know about this study (and I bet Davis knows too). It is a extremely important one, in my opinion. Perhaps the most important paper of this year. I have some thoughts about it but I will reserve them for now, until after I speak with dr Eguchi directly, and possibly after I can make some better sense of it. For now I will just say this is not what I expected, and it presents us with a new kind of puzzle. It also really needs to be duplicated.
 

SlamDancin

Senior Member
Messages
521
@necessary8 Not to derail the thread but has your opinion on Apocynin changed? I have to say I’m having tremendous success doing PT and I’m absolutely certain it was a type of tensile stress called cyclic stress that basically was creating spots of hypoxia and a general hypoxemia. Something has allowed me to actually work through physical therapy and I get huge blood rushes now when I get everything in the right place and I am actually changing and strengthening structure. Muscle tension is lessening with each day of stretching and twisting etc. I feel better too. Much less time flat needed and my mind is clearer. I feel less wired and tired. So I’m not sure exactly which is working or if it’s all working in concert but I am improving similar to Jen Brea but at a much slower pace since I am not pursuing any surgeries. Can’t wait to see how you decipher this study necessary.
 

Jackb23

Senior Member
Messages
293
Location
Columbus, Ohio
Didn’t know too much about the above exsomes so I decided to do a little bit of research. I looked some at Talon-1 and Filamin-A, but 14-3-3 proteins really caught my eye when I started to do some research.


14-3-3 proteins are ubiquitously expressed in various types of tissues, but their highest expression is in the brain, where they make up approximately 1% of its total soluble proteins [15,16]. In neurons, 14-3-3 proteins are present in the cytoplasmic compartment, intracellular organelles and plasma membrane. Some of the 14-3-3 isoforms are particularly enriched in the synapses, to regulate transmission and plasticity [15,17-20]. In addition, 14-3-3 is thought to play a functional role in other cellular processes such as neuronal differentiation, migration and survival, neurite outgrowth and ion channel regulation [21].”

Foote M, Zhou Y. 14-3-3 proteins in neurological disorders. Int J Biochem Mol Biol. 2012;3(2):152–164.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388734/#!po=43.4524
 

SlamDancin

Senior Member
Messages
521
@Jackb23 Hey good work man I didn’t realize these were so important so I took a quick cruise through pubmedistan and found these two interesting papers on 14-3-3 proteins.

“Our findings provide a molecular understanding of the mechanism by which a viral deubiquitinase inhibits the IFN response and emphasize the role of 14-3-3 proteins in modulating antiviral defenses (specifically EBV**my note).”

https://www.ncbi.nlm.nih.gov/m/pubmed/31710640/?i=10&from=14-3-3


“The novel signal pathway may be involved in vessel wall resident stem/progenitor cell activation and vascular remodeling (through 14-3-3 gamma protein)”

https://www.ncbi.nlm.nih.gov/m/pubmed/31721359/?i=7&from=14-3-3
 

SlamDancin

Senior Member
Messages
521
@SlamDancin What does your PT involve? Is it neck work?
It’s very specific and complex, a lot goes into it that I wouldn’t even exactly know what to call it. Sorta like manual muscle manipulation. Feeling where there’s tensile stress and trying to put the muscle in the right place. I do it in several spots as all my joints appear to hypermobile. Getting an occlusal splint for my mouth to help fix cervical by keep my jaw happy which I was believe is pressing on my cervical spine. I was just fitted and will receive it in about 2 weeks.

When it comes to a full write up of my entire recovery over the past year I was thinking of linking up with Cort Johnson and maybe do a blog or an interview type article. Basically to get the word out that this may be treatable with the right medicinal support to complement using non surgical techniques, for all the undiagnosed hyper mobile peeps here who are thinking surgery.

I just discovered by the way that a CT of my head has been taken in the past. I don’t know if it’s the right one to get a diagnosis of CCI or AAI. What you happen to know @sb4? It says CT scan head and cervical, angiogram
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
It’s very specific and complex, a lot goes into it that I wouldn’t even exactly know what to call it. Sorta like manual muscle manipulation. Feeling where there’s tensile stress and trying to put the muscle in the right place. I do it in several spots as all my joints appear to hypermobile. Getting an occlusal splint for my mouth to help fix cervical by keep my jaw happy which I was believe is pressing on my cervical spine. I was just fitted and will receive it in about 2 weeks.

When it comes to a full write up of my entire recovery over the past year I was thinking of linking up with Cort Johnson and maybe do a blog or an interview type article. Basically to get the word out that this may be treatable with the right medicinal support to complement using non surgical techniques, for all the undiagnosed hyper mobile peeps here who are thinking surgery.

I just discovered by the way that a CT of my head has been taken in the past. I don’t know if it’s the right one to get a diagnosis of CCI or AAI. What you happen to know @sb4? It says CT scan head and cervical, angiogram
I think it can be used to Dx some things like CXA and others but @Hip or someone is best to ask.

Interestingly my jaw is in bad posture and it's not unknown for it to click out of place from time to time. I find that when I put my head in what I consider good posture I can't remain in that position for too long before my jaw begins to ache. You think a cheap mouthguard type thing from the internet could be helpful?
 

SlamDancin

Senior Member
Messages
521
I’m not sure that a standard mouthguard would do the trick. I had a dentist use a TENS machine to locate the condyles and then take the impression when my jaw was perfectly relaxed. It’s not cheap but I think a cheap mouthguard may actually make things worse if it’s not fitted correctly. This dentist understood the connective tissue joint flexibility and recommended this option as it allows for the muscles around the jaw to strengthen correctly. Just my two cents about mouthguards. I also bought a cheap one at first but it was causing my jaw to pop and stuff very uncomfortably.