Update from Ron Davis April 2019 Interview with BenH

I have to admit I felt deflated after watching it. The mold idea... I'm not impressed with. Mercury neither. I better stop. Maybe I'm not thinking clearly. The trap, nanoneedle and something in the blood all sound promising. The development of wearable wrist bands.. Don't get that either. Anyone else feel defeated? I didn't feel any lift or anymore enlightened that's for sure.
 
Dr Davis talked about the new research centre in Uppsala run by Dr Berquist who is the expert on spinal taps for ME patients which he seemed to think was an important test.
Has anyone here had a spinal tap? Does anyone know what is being looked for?

I had one in 1986 during a bad bout of a glandular fever type virus. The only result I was told was that the result was ok. I actually felt that that would be the case because I felt much better from a few days before the test. I don’t know that my ME results from that infection but probably.....

I wish I had known then what I know now. I would have asked far more questions. I don’t know why the spinal tap was done. I was having weekly blood tests which showed reactive lymphocytes ++. I wonder if the nhs keeps test results for 33 years, and how I would get hold of them?

I am sorry you feel so discouraged @Sunshine3. I don’t think i’m allowing myself to hope too much for a cure/ treatment in my lifetime but then, I am much older, so I need to be realistic.

ETA: http://simmaronresearch.com/2015/04...ramatic-differences-chronic-fatigue-syndrome/
Some work on spinal taps, not by Berquist but at Columbia.

ETA2: Bergquist talking about his work using cfs fluid at OMF conference
 
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Haven’t watched this yet but I felt the nih conference wasn’t suggesting big leads or did I miss it? This might sound like heresy but the central sensitisation thing, has that been shown objectively or is the point that it can’t be because I just don’t understand how an illness that’s flooring people isn’t showing up now research is scratching the surface One thing I saw form NIH was a pro inflammatory gut state, but that’s seen in other less debilitating conditions..I look forward to cort doing a write up from the conference. Even the ATP impairment of production thing, it sounds like it’s there’s but not drastic?
 
watched this earlier today.
One question to others re something raised towards the end of the video; from memory so excuse if not entirely accurate, but Ben said that pwME don't sweat as much as healthy people.
Is this other peoples experience?
I sweat a lot, particularly at night and find during the day I also need a fairly constant intake of fluids.

eta: another thing, Ron seemed really exhausted, and he's 77; worrying.
 
Sly Saint said:
watched this earlier today.
One question to others re something raised towards the end of the video; from memory so excuse if not entirely accurate, but Ben said that pwME don't sweat as much as healthy people.
Is this other peoples experience?
I sweat a lot, particularly at night and find during the day I also need a fairly constant intake of fluids.

eta: another thing, Ron seemed really exhausted, and he's 77; worrying.
Click to expand...

I sweat like crazy during the day and night. I’d like to know what data his statement is based on.
 
Sunshine3 said:
I have to admit I felt deflated after watching it. The mold idea... I'm not impressed with. Mercury neither. I better stop. Maybe I'm not thinking clearly. The trap, nanoneedle and something in the blood all sound promising. The development of wearable wrist bands.. Don't get that either. Anyone else feel defeated? I didn't feel any lift or anymore enlightened that's for sure.
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Hi @Sunshine3

That's definitely not the intended effect, I'm sorry you feel that way. The mould testing is on a smaller scale as far as I know, and the mercury too. Perhaps it may tease out potential subgroups or additional comorbidities. I think the wearable tech is really exciting, something that can be objectively measured, measured in real-time and shown to a Drs who will hopefully act upon it in the future. I know as much as anyone how deflating that no breakthrough has been found just yet, but I'm trying to be patient. I could have asked better questions I'm sure-this was done at 4am in the morning my time and was the first time for 8 weeks I could sit up properly in bed and talk, but I thought people would rather have an update (or probably more accurately an 'informal chat') from Ron himself, than nothing at all.


B
 
Sly Saint said:
watched this earlier today.
One question to others re something raised towards the end of the video; from memory so excuse if not entirely accurate, but Ben said that pwME don't sweat as much as healthy people.
Is this other peoples experience?
I sweat a lot, particularly at night and find during the day I also need a fairly constant intake of fluids.

eta: another thing, Ron seemed really exhausted, and he's 77; worrying.
Click to expand...

Hi @Sly Saint

I'm trying to find my statement in the video with no luck, I know I mentioned about not sweating as much now and that seemed to correlate with what Ron was thinking at the time (I know I mentioned something about a 2L of sweat per day in healthy people study). I don't think I said it as an absolute (I rarely use absolutes) but if I did please let me know, I certainly didn't mean it. I know pwme that sweat a lot and many that don't seem to at all, for me it is the latter. That was all.

Edit: I said ''I know that a lot of ME patients don't seem to sweat'. I should have used the term ''anecdotally' as I don't think there is much literature on this. But anecdotally, it's something I've been told again and again.


B
 
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@Ben H thank you for replying and u did great with questions... Id love to see how good I'd be.... A disaster!! I suppose we are all hanging on to identify that something in the blood or news on trap. Mold and mercury seem like small asides going nowhere. I'm a mess myself so I vent maybe too quickly. Please know I appreciate your time and energy in doing the interview. You are forever the gentleman and very patient. I am lacking in the patience department unfortunately.
 
Sunshine3 said:
@Ben H thank you for replying and u did great with questions... Id love to see how good I'd be.... A disaster!! I suppose we are all hanging on to identify that something in the blood or news on trap. Mold and mercury seem like small asides going nowhere. I'm a mess myself so I vent maybe too quickly. Please know I appreciate your time and energy in doing the interview. You are forever the gentleman and very patient. I am lacking in the patience department unfortunately.
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No worries Sunshine. I do totally get it, the last year has been beyond horrendous for me for multiple reasons so I totally hear where you are coming from. I'm not a huge, hmm, fan of the mould theory I must say but I'm happy to see it investigated along with mercury. I don't see them as fundamental to the illness for most people but unless they test we won't know. There are fingers in many pies here so it's a smaller focus while the other bigger projects (nanoneedle, metabolic trap, RBC's etc) are ongoing. And all of this is being done with patient donations with NIH barely stepping in.


B
 
@Ben H
While you are here - well done by the way- do you know what is being looked for in the spinal taps in Uppsala? Is it hypothesis testing? It’s a fairly invasive test so I would imagine it is for something specific. Actually I think the NIH are doing spinal taps in their battery of tests for their large study- someone please correct me if I am wrong.

ETA post#3 in this thread, I have added a link to Dr Bergquist’s lecture at the OMF conference earlier this year where he talks about tests using csf. I wish I had more science so as to understand more.
 
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Thank you Ben for doing the interview. Some of things Dr Davis suggested he was going to do look absolutely brilliant. But they all will take months if not years. He really is an extraordinary person in every way, from his intelligence to his empathy to his sensitivity.

I am also wobbling because there is no breakthrough. I now think, and I don't know, but it looks like huge teams of specialists (of every part of the body) will be needed now. I don't know what else to think, because from my limited understanding they don't know what is causing this breakdown in the body. This will require huge international groups, as was done with AIDS. And I do not see this on the horizon.

Also, so many of the current suggested 'treatments' can be found in an old book, which Dr Teitelbaum wrote decades ago, called From Fatigue to Fantastic. He didn't know the cause of the illness, and likened it to a circuit breaker failing, but he had so many of the symptoms down, and was offering symptom relief. And we are not much further along today.

Thank you for the interview and your skin looks very nice indeed, fresh looking actually, nice colour too.
 
Sly Saint said:
watched this earlier today.
One question to others re something raised towards the end of the video; from memory so excuse if not entirely accurate, but Ben said that pwME don't sweat as much as healthy people.
Is this other peoples experience?
I sweat a lot, particularly at night and find during the day I also need a fairly constant intake of fluids.

eta: another thing, Ron seemed really exhausted, and he's 77; worrying.
Click to expand...
I don’t sweat much at all. The only time I do is if I take a hot bath.

But I’ve always suspected this is a consequence of side effects from certain medications I’ve taken in the past: Roaccutane and Ciprofloxacin.
 
At about 16:15, Ron Davis talks about trying to figure out what's in the blood serum that distinguishes patients from controls on the nano-needle impedance test:

We have done quite few experiments trying to figure out what it is.

We've done some filtrations and it's large, but now it appears that it's quite large and it's possible that it's some kind of particle - and, of course, this could be mixed with some small molecules contributing and so forth. What we're looking for is the thing that causes the biggest effect.

It could be a particle, and so that's where that is at the moment, trying to figure out what that particle might be.

We might try to purify that particle better and then break it apart and either do a mass spec [mass spectrometry] analysis of it or some other kind of analysis to see what is in the particle. That might give us a good clue.

But the biggest interest is really to try to see if we can find some drugs that might abolish that signal. It's not necessarily a cure, or even a treatment, but it's possible and it would be worthwhile [to see] what kind of compounds can reduce the signal.

So that's an effort that we'll make.
Click to expand...

The section where he begins to talk about the paper is here at 13:30.

 
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regarding "the thing" (particle)

did indeed 100% of tested mecfs patients have this particle and none of the healthy controls ?

how many ppl (healthy, nonhealthy) did have it, at what total sample size ?

what could (otherwise) differentiate the patients with/without particle ?

...................

is uppsala university finding this particle too, in the spine fluid ?
 
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@roller*

Going by the chart below, there were at least 20 patients and twenty controls. It looks like all of the CFS patients produced a signal and none of the controls. According to Dr. Davis, the odds that this does not represent a real difference between the two groups is a billion to one. [I'm not sure if he was referring to this specific chart, or if there might have been more patients/controls added later.]

nn.jpg
My guess is that the nano-needle is only being used at Stanford at this point, if for no other reason than that it is manufactured in a lab there and probably requires a very specific set up to utilizie.
 
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Forbin said:
@roller*

Going by the chart below, there were 20 patients and twenty controls. It looks like all of the CFS patients produced a signal and none of the controls. According to Dr. Davis, the odds that this does not represent a real difference between the two groups is a billion to one. [I'm not sure if he was referring to this specific chart or if there might have been more patients added later.]

View attachment 6787
My guess is that the nano-needle is only being used at Stanford at this point, if for no other reason than that it is manufactured in a lab there and probably requires a very specific set up to utilizie.
Click to expand...

It was in connection to this specific graph. He also said they have started running more samples through and so far every single one has had the same response if I remember correctly. But then they have used very, very strict entry criteria (only people diagnosed by very experienced ME-specialists after the CCC, Montoya was one example).
 
thanks @Forbin

and all of the mecfs 20 ppl, which all had the bad signal, did have the particle in their blood ?

just wondering.

perhaps, the blood had an odd weight, compared to the HC
and then it was reasonable to assume it was the particle found in one sample, or a few, which matched the weight difference all mecfs had... ?
 
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