ME/CFS International Research Symposium, March 2019, Australia

Was there any mention of Suramin? As I recall, that was another drug that corrected the nanoneedle impedance.

Thanks for sharing this info!

 

Thanks for this - exactly what I was hoping for. I look forward to watching the video when it comes available.

 

We wish you had been here too! ​

 

The issue with the screenshots is only with a couple of images. Unfortunately, Chris Armstrong’s entire presentation was streamed, including embargoed results, despite him asking for part of his presentation to not be streamed. So screenshots of those results slides can’t be shared. Other screenshots are fine.

 

Could you tell me where I could find a clip where he says this, please? Thanks

 

There was a glitch in the live streaming from day 2 and his talk (and everything from before lunch) is gone. Hopefully it will be included when they post everything on YT. He repeated most of his talk on day 3, but not sure if he repeated that bit.

You can find day 3 here: https://goliveaustralia.com.au/emerge2019/ (press the video icon in the top right corner and it's the first video listed)

ETA: RD starts at about 4:08:00

 

He spoke about it in his talk at the beginning of Day 2. He also showed a couple of slides related to the T-cell study. I did not see it "live," but a recording of the entire day seemed to be up on the site for a while. The next day, it seemed like only the afternoon portion of that recording was up there.

 

Thanks @JaimeS here's an extract from the abstract which sums up the problem i.e. (I assume) false negatives in 20% of cases.

"We suggest evaluation of thyroid hormone levels by ultrafiltration LC-MSMS for patients who continue to experience hypothyroid symptoms on LT-4. This may help identify the approximately 20% subset of patients who would benefit from addition of T3 to their treatment regimen (combination therapy)."

Looks like the immuno assay misses 20% of the positive's. Ron Davis has highlighted a possible fix for these assays [https://www.omf.ngo/2018/02/12/tweak-assay-bolster-disease-detection-stanford-medicine-news-center/]. @JaimeS it would be interesting if Dr. Avindra Nath's (NIH), or Ron Davis's (etc.), work has turned up any cases where hypothyroidism is misdiagnosed as ME.

 

Yea this makes sense i.e. everything is down regulated so why not thyroid function? However, it would be interesting to see a trial, i.e. in people with ME/hypothyroidism, to see if increasing T3 reduced fatigue in some people with ME.

 

From my memory of the talk RNA virus's haven't been done yet; however, OMF are working on it. One view of the data is that virus's aren't relevant i.e. there are no active viral infections

 

@JaimeS
I wonder if OMF or someone could put together an official guide to this, maybe a 1-2 page explanation we could give to our doctors for those who have understanding physicians, what the issue is, what the proper tests are and how to treat it based on the test results. Maybe including a decision tree?

 

Yea I can't understand why this hasn't been done by the lead agencies e.g. NICE in the UK. In terms of ME, we don't know if low thyroid function (low T3) presents as ME i.e. number of people with ME who are misdiagnosed - since they have low thyroid function rather than ME.

 

This is a great idea @Alvin and we must make sure that we look at all aspects of thyroid function. Even though i thought that i knew many things about thyroid function, it was very interesting to find out that bile acids are responsible for conversion of T4 to T3. So perhaps apart from selenium supplementation mentioned by Dr. Davis we have yet another parameter (=bile acids) to look at. And we know that something is possibly wrong with bile acid metabolism (from Dr Hanson - Cornell, Dr Naviaux's work)

I heard Dr Davis mentioning on his presentation about his son and how he felt better when he went through the flu ( i assume it was the flu). That makes us think that the immune system must have something to do with this. Looking at this through a different perspective however , when we get the flu the body generates heat (thermogenesis) to raise its temperature in order to better fight the virus. I wonder if this upregulation forces the body of ME/CFS patients to go out of its hypometabolic state -to generate thermogenesis- and thus take the body out of its condition,at least for a while.

 

Ron Davis highlighted that his son had a bacterial infection (from the line he has/had) i.e. not a virus.

Derya Unutmaz is presenting at the NIH conference next month. Unutmaz is working on MAIT cells i.e. a type of T-cells which respond to nasty bacteria (riboflavin producing bacteria) in your microbiome. I don't know if there is any link between Unutmaz's MAIT cell work and Ron's observation about his son feeling better after a bacterial infection.

 

I saw that part of Dr. Davis' talk, also. IIRC, I believe he said that his son feels better when "he has a fever" - so it may be any kind of fever. Your idea that the energy production necessary to produce a fever may be able to temporarily override a presumed hypometabolic state is very interesting.

 

You are right. He mentions "fever" several times starting at 04:37:26

 

@Simone any possibility of getting a friendly Reuters' journalist to do a piece on McGregor's paper when it is published?

 

Great question! I hope so!

 

@Simone any idea when videos from Emerge Conference will be made available? Thank you.