Research Re Exosomes and ME/CSF

Wally

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There are some new posts on the thread titled “NIH's "Accelerating Research on ME/CFS" Conference April 4-5, 2019 - livestreaming” that may be worthwhile to review, as they seem to also some additional crumbs to be followed when looking at exosomes and their possible link to ME/CFS. See, Reply/Post Nos. 68, 73-77 at https://forums.phoenixrising.me/thr...-2019-livestreaming.62919/page-4#post-2197714.

Here is another paper (published in 2015) that provides a very detailed explanation about exosomes and their role in infections. https://www.frontiersin.org/articles/10.3389/fmicb.2015.01132/full

https://doi.org/10.3389/fmicb.2015.01132
Extracellular vesicles from infected cells: potential for direct pathogenesis

Infections that result in natural or manmade spread of lethal biological agents are a concern and require national and focused preparedness. In this manuscript, as part of an early diagnostics and pathogen treatment strategy, we have focused on extracellular vesicles (EVs) that arise following infections. Although the field of biodefense does not currently have a rich resource in EVs literature, none the less, similar pathogens belonging to the more classical emerging and non-emerging diseases have been studied in their EV/exosomal contents and function. These exosomes are formed in late endosomes and released from the cell membrane in almost every cell type in vivo. These vesicles contain proteins, RNA, and lipids from the cells they originate from and function in development, signal transduction, cell survival, and transfer of infectious material. The current review focuses on how different forms of infection exploit the exosomal pathway and how exosomes can be exploited artificially to treat infection and disease and potentially also be used as a source of vaccine. Virally-infected cells can secrete viral as well as cellular proteins and RNA in exosomes, allowing viruses to cause latent infection and spread of miRNA to nearby cells prior to a subsequent infection. In addition to virally-infected host cells, bacteria, protozoa, and fungi can all release small vesicles that contain pathogen-associated molecular patterns, regulating the neighboring uninfected cells. Examples of exosomes from both virally and bacterially infected cells point toward a re-programming network of pathways in the recipient cells. Finally, many of these exosomes contain cytokines and miRNAs that in turn can effect gene expression in the recipient cells through the classical toll-like receptor and NFκB pathway. Therefore, although exosomes do not replicate as an independent entity, they however facilitate movement of infectious material through tissues and may be the cause of many pathologies seen in infected hosts.
...
DNA Viruses
Epstein-Barr Virus

The EBV is a large DNA virus associated with B-cell lymphomas and carcinomas in tongue, nasopharynx, and stomach. The virus is found in a latent stage in both lymphomas and carcinomas (Morales-Sanchez and Fuentes-Panana, 2014). The presence of oncoproteins and viral miRNAs in exosomes from EBV-infected cells gives credence to the fact that virus-infected cells use the exosomal pathway to regulate gene expression in the surrounding tissue to avert destruction by the immune system....

Herpesvirus

The role of protein transfer from intracellular compartments to exosomes has also been studied in Herpes-simplex virus-1 (HSV-1) infected cells. Temme et al. (2010), have shown that the HSV-1 encoded glycoprotein B (gB) manipulates class II processing pathway by perturbing endosomal sorting and trafficking of HLA-DR (DR) molecules....
Interestingly, the human herpes virus 6 (HHV-6) induces formation of multivesicular bodies (MVBs; Mori et al., 2008). In ILVs contained in these MVBs, HHV-6–derived glycoproteins B and M were detected. HHV-6 uses the cellular exosomal pathway of the host cell for exiting the cell....

RNA Viruses
HIV/HTLV Infection

...Similar to other pathogens, retroviruses hijack exosomal proteins as well as other components to increase their spread throughout the body. In addition to this benefit, the resulting changes in recipient cells can be profound leading to disease state and pathologies associated with an infection. To this end, HIV-1 infected macrophages have been shown to have increased number of exosomes and other vesicles secreted from the cell (Kadiu and Gendelman, 2011a,b; Kadiu et al., 2011, 2012). Importantly, these exosomes have been shown to contain various cytokines that induce migration and release of other inflammatory cytokines from recipient cells leading to enhanced HIV-1 infectivity....
 

Marylib

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@Mel9 @Rufous McKinney From what I hear SEID may be dead in the water. My specialist thinks so. If you need help in supplying your doctor with the diagnostic criteria for ME/CFS and M.E., I can help you.

The CDC website currently uses the term ME/CFS for Myalgic Encephalomyelitis/Chronic Fatigue syndrome. M.E. has had the same WHO classification for many years now.

In terms of insurance codes maybe he or she can use the one for M.E. (post-viral fatigue, benign myalgic encephalomyeltis and maybe chronic fatigue syndrome) - which is G93.3 It is all very confusing I know. This may help: https://me-pedia.org/wiki/World_Health_Organization
 
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From what I hear SEID may be dead in the water
Such a tarbaby. Reach in, get seriously stuck.

Thanks @Marylib will check that out as i'd like to discuss it at my next appointment. I want to understand HOW my health plan: treats this illness, because the Doctors are: Oh, go away, I don't want to make an appointment with you. I don't know about THAT. Find out About THAT THEN, is my internal response.

then my doctor recommends a test, and the lab says the insurance won't cover it. And none of this is explained. So it makes no sense.

We have this bizarre dilemma in which its obvious to me there is a complex of conditions that can lead to a smogasboard of symptoms we enjoy and call it various names. Then we have research being conducted on patient cohorts...and sometimes those cohorts contain a mix of possible names and illnesses. All swirling around themselves.

Then the proclamation of how many have it, yet at the same time, so many without a name or tangible diagnosis.

So I note that here, somebody posted they were diagnosed with Dysautonomia. Many of those symptoms are my symptoms, but I supposedly have SEID. (or ME). In my mind, I think of myself as somebody who has "Chronic Eppstein Barr" (for me: what I consider to be the causal factor/ or point where things went downhill.).

All of that assumes other people are asking, or might want to know. In my opinion and experience, they don't.

I finally got the nerve up to send the OMF fundraising announcement to my own brother, my only family member I have any contact with. He never sees me. He never really asks: why. I describe "don't have the energy for " that and "this". But he doesn't ask any more questions.

My disappearance from the world has largly gone very un-noticed. I just heard from a good friend: its been six months since I heard from her. She works three jobs. Has a teenager. Lives in a different town.

Nobody has time anymore. Its all been consumed with Doingness.
 
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post-viral fatigue, benign myalgic encephalomyeltis and maybe chronic fatigue syndrome
Looked at all that......so where did this Benign come from. Sure does not feel benign.

Is there also Malignant ME? I don't think so.

It seems like the document is set up to imply that Post Viral Fatigue is the official name and bME/CFS are not.

So while I believe I am an EBV casualty, it was decades ago. Would a doctor declare a diagnosis based upon the pure speculation that: you kept getting Eppstein Barr: and now its 40 years later?
 

Moof

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Looked at all that......so where did this Benign come from. Sure does not feel benign.
I think the 'benign' came from Dr Melvin Ramsay, a British doctor who characterised ME in the 1950s. He was comparing it with polio – alongside which those early outbreaks of ME often arose – which of course can be fatal or result in lifelong disability. ME was described as benign because it rarely killed people or caused irreversible physical impairment.
 
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Does any one notice that they yawn?

I yawned the other day: and became startled. what was that?
Something physiologically related to yawining, doesn't happen, yet we are so tired.

Oddity
 

Learner1

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want to understand HOW my health plan: treats this illness, because the Doctors are: Oh, go away, I don't want to make an appointment with you. I don't know about THAT. Find out About THAT THEN, is my internal response.

then my doctor recommends a test, and the lab says the insurance won't cover it. And none of this is explained. So it makes no sense.
@Rufous McKinney The key to getting care is to finding things that are treatable. SEID or ME or CFS or G93.3 all lead to no treatment. You can't find what's treatable without access to tests. The secret to getting tests approved, and treatments, is to find things that have ICD10 codes that will get you tests and treatments. Think of it as a game.

The ICD10 is a wonderfully rich tool. It has a huge amount of possibilities, like:

W61.01 - bitten by parrot
W61.02 - struck by a parrot
W61.09 - other contact with parrot

All you have to do is find (and get your doctor to use codes that are useful). Ones I find useful in getting tests are:

R53.82 - chronic fatigue, unspecified
E88.89 - other specified metabolic disorders
I49.8 - other specified cardiac arrhythmias

And for treatment, there are codes for immunodeficiency, chronic Epstein Barr, autoimmune disease, cardiac arrhythmias, etc.

Hint - you can have fun Googling ICD10 code and phrases like these and helpfully come up with a list you can help your doctor with... It helps if you can describe the symptoms that go with each, too.... ;)
 

Marylib

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Looked at all that......so where did this Benign come from. Sure does not feel benign.

Is there also Malignant ME? I don't think so.

It seems like the document is set up to imply that Post Viral Fatigue is the official name and bME/CFS are not.

So while I believe I am an EBV casualty, it was decades ago. Would a doctor declare a diagnosis based upon the pure speculation that: you kept getting Eppstein Barr: and now its 40 years later?[/QUOTE

It doesn't feel benign to me either! Oy vey...
Such a tarbaby. Reach in, get seriously stuck.

Thanks @Marylib will check that out as i'd like to discuss it at my next appointment. I want to understand HOW my health plan: treats this illness, because the Doctors are: Oh, go away, I don't want to make an appointment with you. I don't know about THAT. Find out About THAT THEN, is my internal response.

then my doctor recommends a test, and the lab says the insurance won't cover it. And none of this is explained. So it makes no sense.

We have this bizarre dilemma in which its obvious to me there is a complex of conditions that can lead to a smogasboard of symptoms we enjoy and call it various names. Then we have research being conducted on patient cohorts...and sometimes those cohorts contain a mix of possible names and illnesses. All swirling around themselves.

Then the proclamation of how many have it, yet at the same time, so many without a name or tangible diagnosis.

So I note that here, somebody posted they were diagnosed with Dysautonomia. Many of those symptoms are my symptoms, but I supposedly have SEID. (or ME). In my mind, I think of myself as somebody who has "Chronic Eppstein Barr" (for me: what I consider to be the causal factor/ or point where things went downhill.).

All of that assumes other people are asking, or might want to know. In my opinion and experience, they don't.

I finally got the nerve up to send the OMF fundraising announcement to my own brother, my only family member I have any contact with. He never sees me. He never really asks: why. I describe "don't have the energy for " that and "this". But he doesn't ask any more questions.

My disappearance from the world has largly gone very un-noticed. I just heard from a good friend: its been six months since I heard from her. She works three jobs. Has a teenager. Lives in a different town.

Nobody has time anymore. Its all been consumed with Doingness.
Believe me - there is nothing "benign" about it! Well, you gotta laugh or you cry...and that takes so much energy...
 

Marylib

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Such a tarbaby. Reach in, get seriously stuck.

Thanks @Marylib will check that out as i'd like to discuss it at my next appointment. I want to understand HOW my health plan: treats this illness, because the Doctors are: Oh, go away, I don't want to make an appointment with you. I don't know about THAT. Find out About THAT THEN, is my internal response.

then my doctor recommends a test, and the lab says the insurance won't cover it. And none of this is explained. So it makes no sense.

We have this bizarre dilemma in which its obvious to me there is a complex of conditions that can lead to a smogasboard of symptoms we enjoy and call it various names. Then we have research being conducted on patient cohorts...and sometimes those cohorts contain a mix of possible names and illnesses. All swirling around themselves.

Then the proclamation of how many have it, yet at the same time, so many without a name or tangible diagnosis.

So I note that here, somebody posted they were diagnosed with Dysautonomia. Many of those symptoms are my symptoms, but I supposedly have SEID. (or ME). In my mind, I think of myself as somebody who has "Chronic Eppstein Barr" (for me: what I consider to be the causal factor/ or point where things went downhill.).

All of that assumes other people are asking, or might want to know. In my opinion and experience, they don't.

I finally got the nerve up to send the OMF fundraising announcement to my own brother, my only family member I have any contact with. He never sees me. He never really asks: why. I describe "don't have the energy for " that and "this". But he doesn't ask any more questions.

My disappearance from the world has largly gone very un-noticed. I just heard from a good friend: its been six months since I heard from her. She works three jobs. Has a teenager. Lives in a different town.

Nobody has time anymore. Its all been consumed with Doingness.
I totally agree. There is noting benign about it. For example - I can't ever figure out how to make this post properly! Heaven knows where it will end up. My brain has been reduced to swiss cheese.
 
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My brain has been reduced to swiss cheese
The swiss cheese analogy: yup. Today I plan to: attempt to put new thread on this sewing machine bobbin. The tension is off, something is wrong, I just: rather stare it blankly. I cognitively just don't seem to be able to complete the various cognitive steps to: resolve that minor issue. Its very strange to just sorrta- watch oneself, as a neutral observer. And the visual dilemmas as well. Cannot thread the needle: tried all methods.

Its remarkable to witness. Yet brain is in fact still in there. I'm sure of it.