Hi Ben
Alas, even though I signed up twice, no such email arrived.
-
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, 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.
Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!
- Thread starter Ben H
- Start date
Alas, even though I signed up twice, no such email arrived.
Hi @perrier
Have you checked in the last hour? (It may still be yet to come through). I only just got mine, and I would have been one of the first to sign up.
If not you can go to the OMF page (omf.ngo) at 9am CA time and there should be a link.
B
Mary
Moderator Resource
- Messages
- 17,384
- Location
- Southern California
I got my e-mail for live streaming a couple of hours ago --
Sushi
Moderation Resource Albuquerque
- Messages
- 19,935
- Location
- Albuquerque
Me too.
daisybell
Senior Member
- Messages
- 1,613
- Location
- New Zealand
Me three!Me too.
I was able to watch the morning session. Some interesting presentations but most concepts already discussed on PR forums. Most likely the individual presentations were prepared before the researchers participated in 2 day "pre-discussion" as described by Ron Davis. I would be interested to see some comments about if there were any eureka moments when researchers were able to openly discuss their ideas and question each other.
I forwarded link to presentation to NIH representative working with Dr. Nath's Intramural Study on ME/CFS. It sounds like NIH is duplicating many of the same studies.
I find it interesting that Dr. Hanson from Cornell was using Seahorse machine to obtain metabolic data on ME/CFS patients.
I wonder if the CDR (cell danger response) as presented by Dr. Naviaux could be measured in "real time" similarly by developing technology similar to Seahorse machine. Ideally, this technology could lead to testing of numerous compounds/medications that could act like Suramin to help the body toward healing state. As pointed out by Dr. Naviaux, it is futile to think that pharma companies such as Bayer would invest the resources to see if there is any potential use for a drug like Suramin on ME/CFS patients. The economics don't make sense. Just look at how difficult it has been to rely on pharma to develop new antibiotics to combat multi resistant bacteria.
This symposium is encouraging but it would be nice if we had separate collaboration among fundraisers to share ideas about how to raise awareness and money.
I finished watching the afternoon session. Very interesting presentation by immunologist - Mark
Davis. I hope he can provide more information about T cell abnormality and triggering antigen. I wholeheartedly agree with Dr Olivera regarding closer examination into specific tissue in ME/CFS patients. Samples of muscle and/or peripheral nerve tissue may be extremely valuable in working towards a better understanding regarding specific drivers of this disease.
I can completely understand Dr Ron Davis's frustration with the NIH but I hope they can at some point share data. I anticipate that the NIH Intramural Study will validate many of Ron Davis's findings.
I also found very interesting Dr Mark Davis's comments about potential treatments. He mentioned possible uses for testosterone as an immunomodulatory agent. I used topical gel around the same time I achieved temporary partial remission with use of subcutaneous betaseron. Both agents theoretically can affect T cell function.
It is also very interesting that Ron Davis mentioned that pregnancy can often lead to significant improvement in some patients.
Overall, very grateful to everyone involved in organizing ME/CFS symposium.
I forwarded link to presentation to NIH representative working with Dr. Nath's Intramural Study on ME/CFS. It sounds like NIH is duplicating many of the same studies.
I find it interesting that Dr. Hanson from Cornell was using Seahorse machine to obtain metabolic data on ME/CFS patients.
I wonder if the CDR (cell danger response) as presented by Dr. Naviaux could be measured in "real time" similarly by developing technology similar to Seahorse machine. Ideally, this technology could lead to testing of numerous compounds/medications that could act like Suramin to help the body toward healing state. As pointed out by Dr. Naviaux, it is futile to think that pharma companies such as Bayer would invest the resources to see if there is any potential use for a drug like Suramin on ME/CFS patients. The economics don't make sense. Just look at how difficult it has been to rely on pharma to develop new antibiotics to combat multi resistant bacteria.
This symposium is encouraging but it would be nice if we had separate collaboration among fundraisers to share ideas about how to raise awareness and money.
I finished watching the afternoon session. Very interesting presentation by immunologist - Mark
Davis. I hope he can provide more information about T cell abnormality and triggering antigen. I wholeheartedly agree with Dr Olivera regarding closer examination into specific tissue in ME/CFS patients. Samples of muscle and/or peripheral nerve tissue may be extremely valuable in working towards a better understanding regarding specific drivers of this disease.
I can completely understand Dr Ron Davis's frustration with the NIH but I hope they can at some point share data. I anticipate that the NIH Intramural Study will validate many of Ron Davis's findings.
I also found very interesting Dr Mark Davis's comments about potential treatments. He mentioned possible uses for testosterone as an immunomodulatory agent. I used topical gel around the same time I achieved temporary partial remission with use of subcutaneous betaseron. Both agents theoretically can affect T cell function.
It is also very interesting that Ron Davis mentioned that pregnancy can often lead to significant improvement in some patients.
Overall, very grateful to everyone involved in organizing ME/CFS symposium.
Last edited:
I forwarded youtube link for the ME/CFS symposium to Dr. Nath at the NIH. I mentioned some of the presentations I found particularly interesting. I am still not completely sure whether muscle biopsy will be added to second phase of NIH Intramural study of ME/CFS. @viggster - Do you have any updates?
I also mentioned that some patients may not be able to consistently participate in the bicycle exercise challenge to induce PEM. Anecdotally, I found that using a TENs unit on my quadriceps triggered significant PEM. Using subcutaneous muscle stimulation may be a way to evaluate response to "exercise". Intensity and duration of electrical stimulation could be controlled much more closely in study vs control patients. I would be very interested to see whether the NIH or another group could develop a way to evaluate what's happening to muscle tissue at the molecular level in response to "stress" in ME/CFS patients. Perhaps the immune cells in muscle tissue release abnormal cytokines or antibodies in response to stress.
Lastly, the only person that I personally know that completely recovered after 7 yrs of suffering from moderate to severe ME/CFS told be that her symptoms got better after suffering from bout of bacterial meningitis. Dr. Ron Davis also mentioned in his presentation that one of his patients felt better during a febrile episode fighting bacterial infection. This made me think about whether Coley's toxin may be a potential treatment for ME/CFS. I have seen this mentioned in other forums. Perhaps this is why some people also report improvement in symptoms after using Staphylococcus vaccine.
@Ben Howell - Can you forward this comment to the researchers at OMF. I also sent an email to Linda Tannenbaum stating that I would be will to provide a sample of my muscle tissue.
I also mentioned that some patients may not be able to consistently participate in the bicycle exercise challenge to induce PEM. Anecdotally, I found that using a TENs unit on my quadriceps triggered significant PEM. Using subcutaneous muscle stimulation may be a way to evaluate response to "exercise". Intensity and duration of electrical stimulation could be controlled much more closely in study vs control patients. I would be very interested to see whether the NIH or another group could develop a way to evaluate what's happening to muscle tissue at the molecular level in response to "stress" in ME/CFS patients. Perhaps the immune cells in muscle tissue release abnormal cytokines or antibodies in response to stress.
Lastly, the only person that I personally know that completely recovered after 7 yrs of suffering from moderate to severe ME/CFS told be that her symptoms got better after suffering from bout of bacterial meningitis. Dr. Ron Davis also mentioned in his presentation that one of his patients felt better during a febrile episode fighting bacterial infection. This made me think about whether Coley's toxin may be a potential treatment for ME/CFS. I have seen this mentioned in other forums. Perhaps this is why some people also report improvement in symptoms after using Staphylococcus vaccine.
@Ben Howell - Can you forward this comment to the researchers at OMF. I also sent an email to Linda Tannenbaum stating that I would be will to provide a sample of my muscle tissue.
I watched Dr. Naviaux's presentation again on CDR (Cell Danger Response). His theories are interesting but I asked a question that was unanswered during panel discussion. What has he or other researchers found in looking at metabolomic data specifically in ME/CFS patients that would indicate that these patients are stuck in CDR. Also, as mentioned in another forum regarding his study of 5 autistic children using Suramin, how do you explain it's potential beneficial effects when Suramin has not been shown to cross the blood brain barrier in murine models. It seems the mechanism by which pyruvate and suramin reversed the abnormal cell stress response in ME/CFS patients is unclear as mentioned by Dr. Ron Davis.
Despite these questions, I wonder whether cannabinoids can potentially affect the purinergic receptors. There are anecdotal reports of desperate parents whose children with autism experience positive effects after using cannabinoid compounds. Perhaps, this is another area that can be further studied.
I want to be optimistic but I suspect we may have to wait/persevere another 5 to 10 years...
Despite these questions, I wonder whether cannabinoids can potentially affect the purinergic receptors. There are anecdotal reports of desperate parents whose children with autism experience positive effects after using cannabinoid compounds. Perhaps, this is another area that can be further studied.
I want to be optimistic but I suspect we may have to wait/persevere another 5 to 10 years...
Last edited:
BeautifulDay
Senior Member
- Messages
- 372
I believe this is the video of the conference on YouTube. I look forward to watching it.