OMF/Ron Davis Research Update December 2017

Here's a link to Ron Davis' most recent research update -- received in an email today.

https://www.omf.ngo/ron-davis-research-update-video/

Watching the video will require signing in with your name, email address and country.

ETA: The registration page has been removed. The link above now provides direct access to Ron’s video. Thanks, Ron and OMF team.

 

Hmm, not very open if you have to sign up to their mailing list to view it.

 

Just watched, good update, mainly focused on the nanoneedle.

Seems like they have plans to do a lot more testing using this.

Also notable he mentioned they would begin publishing soon.

 

I thought that was odd too.
I did just enter some random text for my name and randomtext@randomtext.com for my email and it let me watch it.

I am already on their mailing list anyway.

 

Why wouldn’t they just put it on their YouTube channel?

 

To try to get more people on their site and to harness email addresses for their newsletter. (I guess)

 

The work of Dr Simpson on the haemorheological properties of blood seems extraordinarily neglected. I tried to have a conversation with a haematologist once about this bit he looked blank.

There is also a condition ( which I have, another one) called factor v Leiden where the blood is sticky. I inject myself with heparin before long haul flights. It is particularly a risk factor for pregnant women in producing clots. I don't know of any connection between this and ME though.

 

Lyme patients also notoriously have sticky blood. I often have trouble getting flash on my IVs even though I have a central line.

 

Anyone else struggling to get the video to work? Just keeps juddering to a halt - speedtest suggests my connection is fine, so must be at their end.

 

I met Doctor Simpson in the early 1990's, and provided a blood sample as part of his study into blood cell shape in people with ME. Although the report I received didn't provide an effective treatment recommendation, it was interesting to have another possible confirmation that my diagnosis was correct.

Apparently, women's flat cells range from 26.5 to 60.4 percent, 95 percent of the time. In comparison, 80.3 percent of my red blood cells were flat. Otherwise, my blood cells types fell into the normal ranges. Cells that are cup shaped are supposed to be common in acute ME, but by the time my blood was tested I was well into the chronic stage.

My report said: "If you suffer from tiredness and easy exhaustibility on exertion and flat cells are underlined in red on your result sheet (Yes, boldly!), then it is likely that the cells contributed to your symptoms. You should be aware that healthy subjects may have high percentages of flat cells and not suffer from tiredness. The most likely explanation is that those without symptoms have larger capillaries."

I found the second link @Trish provided above especially interesting because it included: "As blood flow with normal rates of delivery of oxygen to nerves is essential for normal nerve function, it is very likely that dysfunction of autonomic nerves (as in orthostatic intolerance) could be expected in conditions with changed populations of red cell shapes." I have OI, and have been diagnosed with both neurally-mediated hypotension and POTS.

I agree, @Binkie4 , having received my results from the blood cell study, I was disappointed that Doctor Simpson's research didn't progress much beyond what was known almost 30 years ago. Not only that -- prior knowledge of information in the linked reports really emphasizes how very long many of us have been ill.

 

Dr. Simpson:
Because it is not possible to increase the diameter of a capillary, treatments should be aimed at increasing red cell flexibility. There is published information which reports that TRENTAL (pentoxifylline), fish oil, and oil of evening primrose taken in sufficient amounts (4000mg) improved red cell flexibility.”

Anyone tried pentoxifylline?
I am currently trying primrose oil...

 

I hope I'm not diverting the subject. I was given Ventrotex, I believe similar to Trental? I was given this medication for my legs. They were swollen and I had pain. I responded well to this medication. I used half the dose as I'm allergic to medications in general. It gave me tachicardia a bit, not too bad. I stopped as my legs are much better now. Just wanted to say.

 

Dr Simpson and Nancy Blake published a book together, quite a short book, which I can't now see on Amazon. Nor can I remember if I bought the book. Dr Simpson died in about 2015 but Nancy Blake is still working on ME: she commented on Jenny Spotila's blog recently.

@Mattie- I am working from recollection from a few years ago which is not totally clear but Dr S said it was important that red blood cells were pliable so they could change shape to get through narrow capillaries. When red blood cells were ' fixed', they could produce misleading information unless the fixing happened with very fresh blood; something similar to this. I so wish I could remember this clearly. Perhaps someone else does? My O2 level is always borderline low, another thing I need to address and presumably affects energy.

@MsUnderstood - how interesting that you were one of Dr Simpson's subjects, and disappointing that the study wasn't followed up. There seems to be material there for further investigation.

@erin- did you feel effects from the Ventotrex? Less cold feet perhaps?

 

Dr. Sandroni said in one video presentation that POTs patients receiving frequently IV Volume boosting are getting into troubles with clotting up to 10 times more often than other sick people depending on IV.

 

@Binkie4 I had numbness on my right leg and it was swollen but it was not cold. It felt like someone was holding my leg or it was stuck a bit.

As soon as I started Ventrotex it got better and continued and even better. It is not swollen now. It also feels a bit stronger, so my leg felt weak too. Especially when standing.

I'll use this medicine again if I got the leg swollen, numb and weak.

I also feel a bit better with this med, like more alert and less tired. But I stopped now.

 

The thought just occurred to me that, perhaps, Ron assumed that he would be able to make more progress in less time than he has, and that in starting to publish he's accepting that it's going to take longer than he'd like. Pure speculation, I have no insider knowledge at all.

 

Maybe the lack of NIH funding made him think it's worth the effort even if he thinks it might slow him down.

Also, maybe a lot of his work was exploratory till now so not much to publish, but if they are focusing more on specific items it might lead itself to publishing.

 

@Binkie4 Your recollection is correct. When my blood was collected, it was done at a temporary clinic specifically set up to do so for this study. Collection was done by a trained staff member who immediately "fixed" the sample. Here's what Doctor Simpson's documentation said about this issue:

"The analysis is based upon the assumption that the shape of red cells in blood samples fixed within seconds of being drawn from a vein is the shape the cells were in the vein. The action of the fixative causes irreversible crosslinking of the proteins in the cell skeleton, thus preventing change in shape. Because of the smallness of a red cell, this occurs very rapidly."

This information was on letterhead from the University of Otago, Department of General Practice, Otago Medical School under the heading "Explanatory Notes About Red Cell Shape Analysis".

 

I was expecting a little more from them but I know they are doing their best. There was nothing that new...we knew about the blood since last Feb/March....we knew about viruses since August. The nanoneedle is progressing as we would expect so there was no jumping off the couch moment (if jumping were possible).