-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Michael VanElzakker
- Thread starter Sunshine3
- Start date
I have just watched the video. I found it fascinating. He goes through aspects of the structure and function of the vagus nerve, brain stem and brain and how they are impacted by what's happening in the body. He relates it specifically to ME/CFS patients and research on these areas.
SWA
Established Member
Last edited by a moderator:
Ash
Senior Member (Voting Rights)
I understand that MVE is interested in the area of research, persistent infections of nerve fibres which is understudied. Currently relatively unpopular as a field.
So perhaps finding someone to work with on this locally would be a challenge.
AP has a very strong interest in this area too. So on that level it would make complete sense for them to work together.
However the way in which they both go about communication on the subject strikes me as very different.
I happen to personally consider it very likely that most or all acquired illnesses are by some mechanism or other initiated or perpetuated by infection or poisoning or some combination of these.
I think feeling like you’ve been poisoned or infected is pretty decent clue that maybe you have been or are.
It’s the simplest most obvious possibility.
I have no sympathy with funding decision makers who dismiss the possibility that something as common as persistent infection could be worth advanced study, for us.
I really like that MVE is researching in this area. I respect the fact that he is doing so in the face of personal hardship. I am sad that this work isn’t receiving funds.
I also share with AP an overlap of perspective. However I have at various times found her statements misleading, theory and knowledge interwoven with no clear line delineated. This disturbs me.
AP might be right about all of it. But that seems unlikely. Knowledge evolves and feeds back in the original theory.
I am concerned some of AP comments will add to mainstream skepticism and deter others from joining this area. Others who may have a more circumspect approach that we could all benefit from.
I hope that PolyBio will be able to make solid findings despite all above obstacles.
So perhaps finding someone to work with on this locally would be a challenge.
AP has a very strong interest in this area too. So on that level it would make complete sense for them to work together.
However the way in which they both go about communication on the subject strikes me as very different.
I happen to personally consider it very likely that most or all acquired illnesses are by some mechanism or other initiated or perpetuated by infection or poisoning or some combination of these.
I think feeling like you’ve been poisoned or infected is pretty decent clue that maybe you have been or are.
It’s the simplest most obvious possibility.
I have no sympathy with funding decision makers who dismiss the possibility that something as common as persistent infection could be worth advanced study, for us.
I really like that MVE is researching in this area. I respect the fact that he is doing so in the face of personal hardship. I am sad that this work isn’t receiving funds.
I also share with AP an overlap of perspective. However I have at various times found her statements misleading, theory and knowledge interwoven with no clear line delineated. This disturbs me.
AP might be right about all of it. But that seems unlikely. Knowledge evolves and feeds back in the original theory.
I am concerned some of AP comments will add to mainstream skepticism and deter others from joining this area. Others who may have a more circumspect approach that we could all benefit from.
I hope that PolyBio will be able to make solid findings despite all above obstacles.
I’d say that funding equipment is different than funding research. - it makes people wonder what a neuroscientist would do with a microscope when he has access to a 7T MRI- i am quite happy to be wrong on that, and i have not read the whole thread.
I think it has been said before on the forum somewhere that OMF is not an charity organisation that researchers can apply to for grants like for example SolveME. It has a different structure as a non-profit organisation where it only funds research in its own research centres led by members of its board. So unless MvE is running an OMF research centre, or is part of an existing one, he wouldn't be funded by OMF.
I think things like Ron's specific appeal for funds for a piece of equipment is probably a reflection of what a lot of organisations appealing for funds do to try to attract donations - make an appeal, sometimes to celebrate a particular even like a key person's birthday, for a specific piece of equipment for a specific task. Lots of donors apparently like to know what they are donating to, so this type of appeal brings in more money than a general appeal, where people worry their donation will be used to fund admin salaries or other less exciting running costs.
I think things like Ron's specific appeal for funds for a piece of equipment is probably a reflection of what a lot of organisations appealing for funds do to try to attract donations - make an appeal, sometimes to celebrate a particular even like a key person's birthday, for a specific piece of equipment for a specific task. Lots of donors apparently like to know what they are donating to, so this type of appeal brings in more money than a general appeal, where people worry their donation will be used to fund admin salaries or other less exciting running costs.
Yes. The problem is that she speculates with no data. There is a whole thread on here with Jonathan Edwards challenging her speculations—with AP stating that JE wasn’t up to date with his knowledge. If AP has collected one piece of data then by all means correct me.
But it is a problem that mainstream outlets in the US like the Washington Post are quoting her and not people like Ron Davis and others who have data.
Kitty
Senior Member (Voting Rights)
It often is. Capital purchases are usually treated differently to revenue costs such as overheads, staff, and consumables, and are accounted for differently, too.
The classic in my industry was small touring theatre companies being given thousands of pounds in funding year after year to cover vehicle hire, because the terms of revenue grants meant nobody was allowed to offer them contributions towards a secondhand van. And if they didn't run a building (a theatre), which small touring companies usually don't, they couldn't apply for most capital grants. I wouldn't be surprised if there aren't very similar frustrations in medical research.
Ash
Senior Member (Voting Rights)
I’ve not seen or read the thread you mention.
I don’t think caution requires that AP has to have no data.
If AP does have data, limitations on this are nonetheless not being made clear.
Last edited:
This was the thread, from 3 years ago. I think the problem in this instance was that Amy Proal published a hypothesis article that some found unconvincing.
https://www.s4me.info/threads/hypothesis-piece-by-amy-proal-a-microbiologist-with-me-cfs.134/
Ash
Senior Member (Voting Rights)
Oh I actually do remember this!
Thanks for the link. That reminds me some of the specific reasons I couldn’t get totally behind this. I actually like this old school infection stuff. Interactions of all the life inside us and unique patterns of this. However most of the time proponents of this school of thought seem to display unearned certitude, and a smudge of scammery.
To me it seems a lot like the study of nutrition very important and worthwhile but so difficulties practice to get through all the opinion to something more solid.
Last edited:
Ughh. Both sides here. I agree that the OMF note was overly optimistic relative to the proposed study. However MVE is wrong that OMF says everything will be detected in the blood. Here is Robert Phair on PR— I can post this because it is not a private thread
“ I admit it's much harder to test a theory whose mechanism is confined to one cell type, especially if that cell type is a minority cell type, but you will see immediately that if the affected cell type was a majority cell type like skeletal myocytes, we would probably have found a biomarker years ago. To me, the absence of a reliable plasma biomarker, after all these years, is a hint that we should be looking for malfunction of a minority cell type that is part of an important physiological control system.”
https://forums.phoenixrising.me/thr...rse-on-l-tryptophan.84658/page-6#post-2355481
Also, it is possible that a miracle cure could snap people out of a chronic disease in a short while—see Encephalitis lethargica and L-dopa (though cure was not long lasting).
“ I admit it's much harder to test a theory whose mechanism is confined to one cell type, especially if that cell type is a minority cell type, but you will see immediately that if the affected cell type was a majority cell type like skeletal myocytes, we would probably have found a biomarker years ago. To me, the absence of a reliable plasma biomarker, after all these years, is a hint that we should be looking for malfunction of a minority cell type that is part of an important physiological control system.”
https://forums.phoenixrising.me/thr...rse-on-l-tryptophan.84658/page-6#post-2355481
Also, it is possible that a miracle cure could snap people out of a chronic disease in a short while—see Encephalitis lethargica and L-dopa (though cure was not long lasting).