Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[NexusOwl]

That is fascinating! I had my first pregnancy right after onset and, I believe, declined through it but was much worse afterwards. My second pregnancy, however, I had hyperemesis as you did and experienced near a total remission that lasted something like two years afterwards. After my health declined to the same state I had the bright idea to have another baby so I could feel well again. It didn't work. I so declined during my third pregnancy that by the time my daughter was born I could neither sit up nor hold her. My point is, my only remission occurred in the pregnancy with hyperemesis. If only we could replicate that (without the vomiting). I would love to try it again, but at this point, I don't dare.

I do know that I needed progesterone for a luteal phase defect before my last and I don't think I ever made near the same amount of hormones because I never really went into labor after my membranes ruptured (no oxytocin) and ultimately couldn't nurse due to having low prolactin levels (they used to be high, go figure). Anyway, now I don't seem to make any hormones at all (except DHEAS!) so we tried BHRT last year and it made no difference with either the obvious hormonal problems or ME.

This hyperemesis thing makes me think of VanElzakker's theory on vagus nerve, because I understand that one of the principal effects of drugs that stimulate the vagus nerve exacerbate vomiting.

 

[leela]

@leela Which products did you struggle with that boost ATP? I am now curious if we are similar.

I cannot remember all the ones I've tried but most recently it was a supplement called "ATP Fuel" and I felt just horrid on it, like all my cells were burning/poisoned, and that awful stimulated feeling like from too much caffeine or hypoglycemia--only eating doesn't help. I was supposed to take three capsules but just one had the above effect.

 

[Learner1]

I cannot remember all the ones I've tried but most recently it was a supplement called "ATP Fuel" and I felt just horrid on it, like all my cells were burning/poisoned, and that awful stimulated feeling like from too much caffeine or hypoglycemia--only eating doesn't help. I was supposed to take three capsules but just one had the above effect.

ATP Fuel has a lot of very good ingredients - maybe too many...

Could it be that:

1. It sped up your mitochondria which were reacting badly faster? Mitochondria can hold toxins which could be confounding your results.
   
2. You're allergic to one of the ingredients
3. One or more of the ingredients is doing something in another pathway to create symptoms, or you fixed some bottleneck only to run into the next problem?

Working with and adjusting the individual components, supported by good lab testing might help you figure out what you need to optimize.

 

[leela]

Indeed @Learner, it could be any of that. It's also interesting to consider within the framework of what Naviaux was saying--that increased ATP just increases the
CDR and other misfirings of signalling so that the body may be in war mode at the cellular level? I dunno, just pondering.

 

[Learner1]

Indeed @LearnerIt's also interesting to consider within the framework of what Naviaux was saying--that increased ATP just increases the
CDR and other misfirings of signalling so that the body may be in war mode at the cellular level? I dunno, just pondering.

I think you may be on to something...

I find that when supplements don't work as expected, it generally indicates the problem is more complex than at first glance....:thumbdown:

 

[mariovitali]

@Simon @JaimeS @Janet Dafoe (Rose49)

Recall that several genes selected by the machine learning algorithms are TAM Receptors (and also GAS6) . So i look for a connection between any TAM Receptor and T Cells and i find this :

MERTK as negative regulator of human T cell activation.
The aim of this study was to test the hypothesis whether MERTK, which is up-regulated in human DCs treated with immunosuppressive agents, is directly involved in modulating T cell activation. MERTK is a member of the TAM family and contributes to regulating innate immune response to ACs by inhibiting DC activation in animal models. However, whether MERTK interacts directly with T cells has not been addressed. Here, we show that MERTK is highly expressed on dex-induced human tol-DCs and participates in their tolerogenic effect. Neutralization of MERTK in allogenic MLR, as well as autologous DC-T cell cultures, leads to increased T cell proliferation and IFN-γ production. Additionally, we identify a previously unrecognized noncell-autonomous regulatory function of MERTK expressed on DCs. Mer-Fc protein, used to mimic MERTK on DCs, suppresses naïve and antigen-specific memory T cell activation. This mechanism is mediated by the neutralization of the MERTK ligand PROS1. We find that MERTK and PROS1 are expressed in human T cells upon TCR activation and drive an autocrine proproliferative mechanism. Collectively, these results suggest that MERTK on DCs controls T cell activation and expansion through the competition for PROS1 interaction with MERTK in the T cells. In conclusion, this report identified MERTK as a potent suppressor of T cell response.

https://www.ncbi.nlm.nih.gov/pubmed/25624460


Interestingly, i believe i saw network analysis being used (in the Big data presentation) which i also been using for my Research :

http://algogenomics.blogspot.com/2017/05/machine-learning-nlp-and-network.html

I really hope that Mark Davis looks at this hypothesis. Jaimie there are lots of other goodies coming in, all related to autoimmunity ;-)

 

[perrier]

I have nothing but the deepest respect for the researchers at the conference. And I understand that the wheels of science grind slowly.
So, please understand the spirit of my question:
Is there anything concrete and of direct benefit to the suffering CFS patient that we can extract? Ok, bifidus bacteria. But most here have likely used this.

Is there anything that is connected to treatment, aside from potentially Suranim ( which is still a way off)?

 

[leela]

@perrier, I would say the technological breakthroughs for testing and analysis are so huge, and reach so much farther than ME/CFS, that we could take a moment of stunned awe. That printable chip at 1¢ is a thing that will happen despite the corporate quash-factory and the cultural landscape will have the opportunity to shift to one of care and empowerment over profit and domination. In an atmosphere like that, anything is possible

 

[me/cfs 27931]

Having a sibling who died of T-cell (non-Hodgkin) lymphoma at age 26, I've long suspected aberrant T-cells play a role in my family's cluster of (auto?)immune diseases.

 

[Janet Dafoe]

Since name of our illness is not etched in stone yet...why don't we change name from CFS to African sleep sickness...lets face it, our daily life is not far from what sleep sickness implies....lol

Ron really laughed at this! It might be easier to get suramin if we did that!

 

[Janet Dafoe]

I'm trying to reconcile ME epidemics with Davis's report that they have not found any viral DNA for the viruses they've tested as per this screenshot from his presentation yesterday.

I don't see any of the viruses Davis tested in the enterovirus tree that Dr Hyde contends is the cause of ME and is an "analog to polio".


View attachment 23055 View attachment 23056

Ron says: We did one test for all viruses, parasites, bacteria, funguses including molds, both those known to man and those that have never been discovered (looking at the sequence tells you that they are evolutionarily related to another virus). This test looked for particles or cells from those organisms and sequenced the DNA inside of them. In that test, we didn't find any pathogens. All we found were things that are in normal healthy people.

We did another, different, test for DNA in the blood from some specific DNA viruses (listed in that slide). There was some viral DNA in some patients but more healthy controls had the same viruses, which are common. We have not yet tested the RNA viruses, which we are planning to do. We are developing a test to do this with on a very small sample of blood (remember, we could only get blood once from these severe patients, and we have to be very careful to get as many tests from that as we can). Enteroviruses are RNA viruses.

There may be viruses that don't ever get into the blood, but they are very difficult to test for in severe patients because the procedures are invasive.

 

[Janet Dafoe]

Thanks to everyone involved in the symposium. I was going to just watch the morning session (evening here in the UK) but ended up staying with it to the end at 1am.

I am shattered today, but am pleased I stayed. It was wonderful to feel included as part of the wider audience. Thank you for making us house and bed bound folk feel welcome.

I don't think I took in much of the detail, so am delighted to be able to watch again at my own pace on You Tube.

Memorable moments - the venomous marine snails and the amazing inventions in Ron's department and the lovely personal touches in Ron's introduction of each speaker.

Such a well organised and well chaired day. It will stay with me and comfort me for months and years to come.

Can you make it an annual event?

That is the plan! It's a huge amount of work, and it's really hard to get all the scientists together, but we are already talking about it. No rest for the ME/CFS warriors!

 

[Gingergrrl]

Ron says: We did one test for all viruses, parasites, bacteria, funguses including molds, both those known to man and those that have never been discovered (looking at the sequence tells you that they are evolutionarily related to another virus). This test looked for particles or cells from those organisms and sequenced the DNA inside of them. In that test, we didn't find any pathogens. All we found were things that are in normal healthy people.

If it turns out to be an autoimmune illness would not finding any pathogens fit with this theory? (I am not saying it is autoimmune and truly have no idea what will ultimately be found but was just curious). Many thanks in advance to Ron if he has time to answer this question in the future.

 

[Jesse2233]

We have not yet tested the RNA viruses, which we are planning to do. We are developing a test to do this with on a very small sample of blood (remember, we could only get blood once from these severe patients, and we have to be very careful to get as many tests from that as we can). Enteroviruses are RNA viruses.

This is excellent news, I knew Ron would leave no stone unturned, thanks @Janet Dafoe (Rose49)

Do you know if he'll use the same highly sensitive micro-neutralization test ARUP uses for enterovirus?

Per @Hip

Micro-neutralization test - Persistently elevated antibody levels for one or more enteroviruses over years can suggest a chronic enteroviral infection. The Micro-neutralization test is a very sensitive, specific test and only 11 enteroviruses, coxsackie B1-6 and echoviruses 6, 7, 9, 11, and 30 can be tested using this method. Titers of 1:320 and higher are good indicators of current infection.

It is important to note that only one commercial laboratory in the United States is recommended for this test: Associate Regional University Pathologist Laboratory (ARUP), Salt Lake City, Utah. These tests can be ordered directly from ARUP or ordered through Labcorp. If ordered through Labcorp, write on the form to specifically state to send this test to ARUP.

 

[Diwi9]

This is excellent news, I knew Ron would leave no stone unturned, thanks @Janet Dafoe (Rose49)

Do you know if he'll use the same highly sensitive micro-neutralization test ARUP uses for enterovirus?

Per @Hip

Just a heads up that I'm having problems getting the echovirus tested through LabCorp. They state that they will perform a coxsackie test and send it to ARUP, but the echovirus test will be sent to Cambridge...they are no longer using ARUP for this test...at least in New Mexico...despite a note written on the order by Dr. Chia's office.

 

[Jesse2233]

Just a heads up that I'm having problems getting the echovirus tested through LabCorp. They state that they will perform a coxsackie test and send it to ARUP, but the echovirus test will be sent to Cambridge...they are no longer using ARUP for this test...at least in New Mexico...despite a note written on the order by Dr. Chia's office.

Hmm you might have to go directly to ARUP now

 

[Diwi9]

Hmm you might have to go directly to ARUP now

We are going off topic, but I contacted ARUP and they state that they are only a "reference lab" and so only work on contracts...no kits can be sent out. I've had the same notice given by another lab (TriCore) and Quest Diagnostic would not send either test to ARUP, even though Chia's office's requisition form was for Quest. This disease has roadblocks at every turn, at every level!

 

[Jesse2233]

@Diwi9 strange they ran the Coxsackie B panel for my GP last month no problem. PM me and I can send you a link to what I gave him

 

[Janet Dafoe]

This is excellent news, I knew Ron would leave no stone unturned, thanks @Janet Dafoe (Rose49)

Do you know if he'll use the same highly sensitive micro-neutralization test ARUP uses for enterovirus?

Per @Hip

That is a test for antibodies. He is developing a test for the virus itself.

 

[Jesse2233]

That is a test for antibodies. He is developing a test for the virus itself.

Interesting. Has Ron been in contact with Dr John Chia at all? Dr Chia has shown strong correlation between enteroviruses in stomach tissue and ME patients, and he's always very happy to share the details of his research and techniques