OMF/Ron Davis Research Update December 2017

If people search for 'B00875TLB4' it will come up.
(Ramsay's Disease - Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of 'CFS')

 

Thank you @MsUnderstood

Dr Simpson's work made quite an impression on me even though it is quite a while since I read it. How interesting that you were a participant but unfortunate that the work was not pursued.

 

@Luther Blissett
Thanks Luther. Just had a look at this on the Amazon site which prints a fair bit of the preface and introduction as well as a contents page. The contents are as I remember although I recollect quite a small book which this doesn't seem to be.
Maybe one day I'll enlarge my ME book collection and buy it.

 

I believe Ron said from previous communication that he is being very careful about discussing discoveries that may be stunning at the moment but turn out to be untrue after further work. Then when papers are submitted for publication there are restrictions on what you can say asthe journal may not accept a submission if there is discussions going on in social media or else about the discovery/ content of the paper.

It certainly is frustrating for all of us patients waiting. Good science takes so much time.

 

I tried it in early 2016 and it was absolutely horrible. It dropped my BP even lower than 80/50, gave me a severe headache, and lowered my already very low functioning (at that time). I think I stuck it out for 3-4 days until I couldn't stand it anymore.

But from my blood tests, I do not have "sticky blood" and I do well with vasoconstrictors, like Midodrine, and high dose IVIG (which is a very thick substance) has been life changing for me.

 

@Jonathan Edwards Ron is now saying that the metabolic signature in ME/CFS has some resemblance to diabetes.

I've been saying for a while that problems with blood sugar regulation seem to be common among patients. This could be low hanging fruit for a researcher. If I'm right then a 4-5 hour glucose tollerance test could be a good way to demonstrate that there is a problem.

 

While I wouldn’t say I had major issues I do always seem more sensitive than other people to low blood sugar. It would be interesting to know if it was a symptom of a body that just doesn’t work right or something more specific.

 

Dr. Davis around the 12 minute mark says, "some of the biochemistry going on looks a little bit like diabetes".

Does anyone know if Dr. Davis referring to Type 1 or Type 2 diabetes? T-cell abnormalities have been implicated in both types of diabetes.

Having a parent with Type 1 diabetes and a sibling with T-cell lymphoma, I've long suspected T-cells might play a role in at least a subtype of ME/CFS.

I also note that in Cort's article, it's mentioned that Dr. Davis will be testing the nanoneedle on several other disease samples, including diabetes.

 

I had a couple, possibly three, glucose tolerance tests early in the illness (nearly 35 years ago). I would get symptoms of low blood sugar (like shakiness) followed by symptoms of an adrenal response (pounding heart). Theses tests, however, were always within normal limits. When I told the nurse about these symptoms after the test, she suggested that maybe my blood sugar had dropped and recovered between blood draws. Somehow this seemed kind of unlikely to me.

In retrospect, I've wondered if some autonomic glitch was overreacting to glucose levels that were within the normal range.

Something was odd with my tolerance of "sweeteners."

A couple of years into the illness, I drank a can of Coke on an empty stomach one morning. The reaction was like a massive amplification of what happened with the glucose tolerance test. Within 15 minutes, I suddenly felt a real sense of unease and shakiness and had to go lie down. Then I had what seemed like a massive release of adrenalin: sweating - deeply flushed face and torso - pounding heart - polyuria far in excess of the 12 ounces I had consumed - fluid seemingly coming up from my lungs - and a general sense of massive distress. On paper, it sounds kind of like an analphylactic reaction, but fortunately I didn't have any swelling or throat constriction. The episode lasted about 45 minutes to an hour, leaving me totally drained.

It took me a while to figure this out, but I would note all the ingredients on anything that I consumed that produced similar, though less extreme, reactions. The common factor was high fructose corn syrup (HFCS). HFCS had been been introduced into soft drinks in the early 1980's, just shortly before I became ill. It was later introduced into baked goods and I started to have reactions to them, too. Products I regarded as "safe," because they'd previously had no HFCS, suddenly produced reactions. When I checked their ingredients again, I found that they had begun to use HFCS. I was an HFCS "detector."

I'm not saying that HFCS causes ME/CFS, but ME/CFS may somehow make some people hypersensitive to it. I've read that reactions to HFCS should be impossible because it's chemically no different than regular fructose (just more concentrated, I guess), and the body is well able to deal with fructose. The recent interest in the microbiome makes me wonder if maybe it's not the body but rather some microbe in the gut that reacts weirdly to HFSC, producing who knows what (maybe just more of itself - upsetting the balance of the microbiome).

 

@Forbin, I feel it's highly likely that the issues with HFCS you point to are due to the fact that about 90% of corn crops are GMO now, which means high levels of herbicides and pesticides. It is also a highly mold-prone crop. Concentrating the sugars out into syrup may mean getting unusually concentrated amounts of noxious chemicals plus mycotoxins that our stressed immune systems simply go on overload trying to handle in one go like that.

 

fyi to omf:

not loud enough for me at max volume with max computer volume.

 

Whether it's an allergic/toxic reaction to something or more akin to a wild blood sugar level excursion is an interesting question. It may have been misleading for me to have used the word "analphylactic reaction" above, as I think the same symptoms might be produced by a lot of adrenalin flooding the system. The symptoms have suggested to me an exaggerated response to "sugar" (glucose? fructose?). Initially, following the ingestion of HFCS, I'd get a shaky/ill feeling that seems similar to what people describe in hypoglycemia, as if a lot of insulin had been released in response to high blood sugar. Then I'd get the flushing, pounding heart, polyuria, etc... which seems consistent with the release of adrenaline to combat low blood sugar, but this did seem like it was a particularly wild swing (I actually still think of this incident 30 years ago as the closest to death that I've ever come).

Yet, my previous glucose tolerance tests were all normal, and my reactions during those tests were not nearly as severe as during this HFCS incident. Oddly, I could (and still can) consume things containing regular corn syrup without effect.

I think my sensitivity to HFCS may have diminished over the years, but I have no intention of putting it to the acid test by drinking an HFCS soda on an empty stomach before breakfast.

 

Have just ordered this. Out of stock at Amazon Prime but other sources available. Am very curious about these red blood cells and their different shapes. It seems to be being followed up now. What a shame it has been ignored for all this time.

EDIT: the following added. https://www.omf.ngo/2017/12/23/urge...llaborative-research-center-healthrising-org/

P6-7 refers to work on red blood cells being carried out at San Jose SU by Dr Ramasubramanian with Ron Davis led by Dr Amit Saha. They hope to be writing a research grant proposal on this issue within a few months. ( @MsUnderstood )

EDIT 2: the book referred to at the beginning of this post is Ramsey's Disease Myalgic Encephalomylitis by Leslie Simpson

 

Cort Johnsons article:
"
Urgency: Ron Davis and His (Non-NIH Funded) ME/CFS Collaborative Research Center
Urgency

Those ten NIH research center proposals contained a hidden gift. Of the ten grant applications, seven failed, leaving at least 21 potential individual research grant applications that could be sent to the NIH. That is potentially a major boost to a field that averages about 15 grant applications a year.

Apparently Ron Davis didn’t get that message. He’s already put in one grant application to support Mark Davis’s project and plans to get two (R21 for nano-needle + ?) more in by February. At some point, Ron Davis is actually going to get funded by the NIH for his chronic fatigue syndrome (ME/CFS) study."

rest of article here:
http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=31114

 

I know I'm way behind but thought I'd post this for folks who are having trouble watching this video.

Here's the YouTube version, in case that helps

https://www.youtube.com/watch?v=ABeGOaHx8wg

It also has the option for auto-generated captions (click on the CC at the bottom). These are not as good as real captions (written and proofread by a person) but at least they provide some help when you can't hear or understand a certain word.

Also tagging @Londinium who mentioned problems with the original video.

 

Important to state that it's Evening Primrose. It's not closely related to primroses: https://en.wikipedia.org/wiki/Oenothera

 

Sorry, am late reading all this, and have just been coincidentally reading stuff on the net relating to the discussion.

I remembered (groan, sorry) AfME reporting on the 'sticky blood' issue and have dug out the article:
from 2000 :
Video Microscopy: ‘Live’ Blood Analysis for Chronic Fatigue Syndrome (CFS) patients – exciting breakthrough or pure hype?
http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=7681

also Leslie Simpsons paper
Myalgic Encephalomyelitis (ME): A
Haemorheological Disorder Manifested
as Impaired Capillary Blood Flow
http://www.orthomolecular.org/library/jom/1997/pdf/1997-v12n02-p069.pdf

and an article by Nancy Blake from 2016 (I smiled nostalgically at a link to a thread on PR)
Lost in Translation - The ME-Polio Connection and the Dangers of Exercise
http://www.positivehealth.com/artic...-polio-connection-and-the-dangers-of-exercise

apologies if any of these have already been posted.

 

this one?
A Beginner's Guide to ME/CFS

 

@Sly Saint

That may have been the one I read a couple of years ago.
Now I'm on a largish red book
"Ramsey's Disease Myalgic Encephalomyelitis and the Unfortunate Creation of CFS by Leslie Simpson Ph.D and Nancy Blake