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Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

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Barry53

Senior Member
Messages
2,391
Location
UK
Listened to this last night. Just a couple of quick comments now, maybe more this evening.
  • The latching effect (cannot recall what Dr. Davis calls it) is really interesting. Akin to having fallen down a well and all would be fine if only your physiology could climb back out of it again. But it is impossible without the right kind of help. The BPS brigade have themselves latched onto this characteristic, presuming that such a latching effect must be all in the head, because they cannot see past their own noses.

  • The notion that "pushing through" adversities could be what proves the tipping point for people's energy management mechanisms, and maybe pushing them erroneously into this damage-limitation mode. Interestingly - could this be why women are statistically more likely to suffer from ME? Whether us fellahs like the idea or not, I bet that - though there will be plenty of exceptions to the rule - statistically there will be more women than men who habitually push themselves hard to get through infections, whilst looking after the kids, getting them to school ... and in many cases still looking after their man too! What a real irony that would be for the BPS brigade: That the very thing triggering and perpetuating ME/CFS, is because people do not have false illness beliefs, and are determined to not let it beat them! And so GET actually enforces a "GET Sicker" regime, thanks to a little knowledge (and lots of arrogance) being a dangerous thing.

    I think this aspect needs feeding into the NICE guidance revisions quite urgently, especially regarding GET.
Just a few "idle thoughts" for the moment :).
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
AndyPR said:
Unless someone else beats me to it, I'll look to do a transcript of this tomorrow at some point. I would do it now but I need to go to bed.
Click to expand...

Do you know about using oTranscribe.com, Andy? It makes transcribing loads easier.

Thanks for being willing to do this! I wish I was able to help but can't at the moment. Splitting the work with someone else would make it pretty quick. With oTranscribe, you don't have to download software and can paste in the link to YouTube and control the audiofeed very helpfully. I can't recommend it highly enough.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
sue la-la said:
i'm attempting a transcript - if anyone else wants to help with a section, please contact me ...
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That's great, Sue! Did you see my post to Andy about oTranscribe?

[BTW, I don't have shares in oTranscribe! I'm just banging on about it because from personal experience I know it takes a lot of the agony out of transcribing.]
 
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Tuha

Senior Member
Messages
638
Rose49 said:
Wow! We'd love to talk with you about that! It would be wonderful. Can you pm me and I'll get you in touch with Ron and Linda Tannenbaum. Thank you!
Click to expand...

I think it´s definitely worth to try to get in touch with some philanthropists. YOur family has such a strong story, there are so many patients, many suffering and research project and great research team with a huge potential but waiting for money. I think it´s worth to try to write a letter with this story and send it to the philanthropists or to contact them directly. Just an idea
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Sasha said:
Do you know about using oTranscribe.com, Andy? It makes transcribing loads easier.

Thanks for being willing to do this! I wish I was able to help but can't at the moment. Splitting the work with someone else would make it pretty quick. With oTranscribe, you don't have to download software and can paste in the link to YouTube and control the audiofeed very helpfully. I can't recommend it highly enough.
Click to expand...
Hi Sasha. I hadn't been aware of it until you posted about it but I'll be using it from now on, looks very useful. @sue la-la has posted above about starting on a transcript, as it will be several hours at least until my brain I would imagine she'll complete it before I'm in a position to start work.

One thing I have found is that it's possible to copy and paste YouTubes automatic transcript, so I tend to use that as a way to get the bulk of the transcript done and then run through correcting the errors and making it look nice.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
AndyPR said:
One thing I have found is that it's possible to copy and paste YouTubes automatic transcript, so I tend to use that as a way to get the bulk of the transcript done and then run through correcting the errors and making it look nice.
Click to expand...

That's a massively helpful tip - I didn't know YouTube produced an automatic transcript!
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
MTOR is embedded in cell membranes (I think, I have not checked this to be sure). So its not filtered. Its the target not the cause if there is a problem, unless the issue is genetic. Antibodies or a large signalling molecule, such as a protein, are very possible. Further, if the putative signalling agent is large and does not target MTOR, MTOR might still get hit by secondary consequences.

Within one to several years I think that each ME subgroup, if more than one, might be down to only one or two possible explanations.
 
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Valentijn

Senior Member
Messages
15,786
TreePerson said:
I am confused and probably being very slow here. This is a list of things that inhibit mTOR? Wouldn't that mean they made matters worse? Or do some inhibit and some activate? So just to clarify- are ALL the things listed here potentially helpful or are some bad? What do the (R)s mean?
Click to expand...
The list comes from selfhacked, which isn't a particularly reputable site and is heavily associated with the heal-thyself brigade and related spam about various natural remedies. The (R)s link to research, which would need to be carefully read before assuming the listed summary is correct.
 
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arewenearlythereyet

Senior Member
Messages
1,478
Can't wait for the next gripping instalment. I guess if mTor is something to do with it that opens up a whole load of other questions and further study. Found interesting studies on its role in autophagy.

What I found interesting is the theory of pushing through a protective mechanism. I can't help but keep wondering about the purpose of the biological mechanism that's not flipped back. Is this a limiter for flight or fight when adrenaline production has got too high (protecting an overheated engine), is it ancient hibernation, is it a protective energy conservation for when food supplies are low?

I like the idea of a switch and a treatment that is already available.
 
TreePerson

TreePerson

Senior Member
Messages
292
Location
U.K.
Barry53 said:
Listened to this last night. Just a couple of quick comments now, maybe more this evening.
  • The latching effect (cannot recall what Dr. Davis calls it) is really interesting. Akin to having fallen down a well and all would be fine if only your physiology could climb back out of it again. But it is impossible without the right kind of help. The BPS brigade have themselves latched onto this characteristic, presuming that such a latching effect must be all in the head, because they cannot see past their own noses.

  • The notion that "pushing through" adversities could be what proves the tipping point for people's energy management mechanisms, and maybe pushing them erroneously into this damage-limitation mode. Interestingly - could this be why women are statistically more likely to suffer from ME? Whether us fellahs like the idea or not, I bet that - though there will be plenty of exceptions to the rule - statistically there will be more women than men who habitually push themselves hard to get through infections, whilst looking after the kids, getting them to school ... and in many cases still looking after their man too! What a real irony that would be for the BPS brigade: That the very thing triggering and perpetuating ME/CFS, is because people do not have false illness beliefs, and are determined to not let it beat them! And so GET actually enforces a "GET Sicker" regime, thanks to a little knowledge (and lots of arrogance) being a dangerous thing.

    I think this aspect needs feeding into the NICE guidance revisions quite urgently, especially regarding GET.
Just a few "idle thoughts" for the moment :).
Click to expand...

I am a woman who did precisely that! (mega pushing through) after finding herself unexpectedly as a single parent to three young children. And I have often had the same thought. I have hesitated to say it not wanting to appear to be stereotyping! But I do think culturally women are programmed to be self sacrificing. These things go very deep and we learn them earlier on.
And of course when I went to the doctor with a body that didn't work anymore the male doctor considered the most likely explanation was that it was an emotional reaction to my situation. So I pushed on even harder. And 24 years later I'm still here knowing that I was given all the wrong advice at the start and badly wanting todays young women not to fall into the same trap.
So all in all I think there's a lot in that plus the fact that female immune system is seem to operate differently.
 
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UKmum

Messages
87
I love the idea of a switch and a treatment already available too! I have very very little understanding of even basic biology and although I try to follow the thoughts on here mostly I am completely head under water. Can any one help me comprehend why- if it were a switch that people are affected so differently and that the symptoms fluctuate within a person. eg My son wakes up feeling awful- takes 1 or 2 hours to thaw or warm up (not sure which) whilst remaining horizontal, walks holding the walls, then later in the evening can run up the stairs. Can it be like a dimmer switch rather than an on/off?
 
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keenly

Senior Member
Messages
817
Location
UK
eljefe19 said:
This is exactly how mTOR activators have affected me as well. The best health I've been in in a while but still limited. PEM greatly reduced. Leucine actually upregulates mTOR.
Click to expand...
What dose of Leucine do you use? I am about to order some, I think a lot of use could benefit from it.
 
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