Dr. Nath (NIH) in the fast paced search to the cause of ME/CFS coming up!

[Belbyr]

http://simmaronresearch.com/2019/04...yuZr3aRdOMYIbhJ6aYngnQ6VmdlegtBuLAsqut7BQ0Css

Dr. Nath will be speaking on the Intramural study at the NIH conference. He’s reported that he will present on the high rate of rare diseases found during the first half of the study, but with just half of the projected participants having finished the first part of a two-part study, it’s not clear whether he will have any biological results to present. (He has called producing hypotheses based on few results the “kiss of death”.)

Nath and his compatriots uncovered the antibody connection to nodding disease seven years ago – a long time in this age of fast moving medical technology. Nath reported he’ll be using a newer approach involving mass spectrometry, or phage display, in ME/CFS which will allow him to “probe almost infinite numbers of proteins/peptides”.

 

[Carl]

I bet that he still misses it!

 

[Belbyr]

I bet that he still misses it!

After seeing what he has accomplished in his past and the technology/funds he has access to... If he misses is, it will be a travesty. Sounds like he has already found alternate diagnosis's for many of his clinical trial participants. I'm sure many of those participants have seen many doctors like all of us have.

 

[Diwi9]

I would love to know what sorts of rare diseases are being picked up in his screenings. What diagnostics are unavailable to the rest of us that are discovering these rare disease.

ETA: wrote "aren't" when I meant "are." Now corrected.

 

[5150]

Something positive needs to happen in the research. // I know, patience.

I also know that if a had a choice of coming back here and living in this condition (in my next life), I would decline.
Why have life if it's this way? Been fighting thru this hell a long time, and the Golden Years are not as described.

AIDS was collared fairly fast, but They marched in the streets. I will last about 5 or 10 minutes out there...
Thanks for the doctors & researchers. Good Luck to all.

 

[perrier]

I would love to know what sorts of rare diseases are being picked up in his screenings. What diagnostics are unavailable to the rest of us that are discovering these rare disease.

ETA: wrote "aren't" when I meant "are." Now corrected.

Diwi
The point you make about the rare diseases is most important; it would be negligent not to let the ME doctors and us know what these illnesses are.

 

[frozenborderline]

While I was somewhat skeptical of the nih study, the fact that they’re doing thorough differential diagnoses and finding other rare diseases in the screening process is very very promising.

 

[MonkeyMan]

Why do you guys feel the rare disease findings are promising/important? I'm not saying they're not, just wondering why they are.

 

[perrier]

Why do you guys feel the rare disease findings are promising/important? I'm not saying they're not, just wondering why they are.

It is starting to look as though a good number of folks who think they have ME actually have another condition. It is urgent to get a diagnostic tool.

 

[5150]

Diwi
The point you make about the rare diseases is most important; it would be negligent not to let the ME doctors and us know what these illnesses are.

I know one is myesthenia gravis. where the legs can't hold up. Quite painful i have heard.

 

[Diwi9]

Anyone else notice that Nath will not be presenting? The NIH website now shows Brian Walitt giving the Intramural Study update talk.

 

[Belbyr]

Anyone else notice that Nath will not be presenting? The NIH website now shows Brian Walitt giving the Intramural Study update talk.

hmmmm is this new? Cort Johnson said he would be speaking tomorrow...

 

[frozenborderline]

What about the NIH study is fast-paced? I am also wondering why they exclude autoimmunity and degenerative brain disease given that many of us may have both me/cfs and signs of autoimmunity. I am additionally troubled by it being lead (partially?) by brian wallit who firmly believes this is a psychogenic disease. None of this screams “cure in the next five years “

 

[Diwi9]

What about the NIH study is fast-paced? I am also wondering why they exclude autoimmunity and degenerative brain disease given that many of us may have both me/cfs and signs of autoimmunity. I am additionally troubled by it being lead (partially?) by brian wallit who firmly believes this is a psychogenic disease. None of this screams “cure in the next five years “

Agreed. I think Derya made a great point at the end talking about ME/CFS being the ultimate disease for precision medicine. We need to be looked at on an individual basis. This is a multi-systemic disease that has some common features (hence the IOM criteria), but is individually much more complex. And, while everyone says it is a diagnosis of exclusion...who doesn't have co-morbidities? Now, more then ever, we need Millennials entering the field...people who are willing to think creatively.

 

[Diwi9]

When I think about it. They should have designed the study to have multiple subsets of ME/CFS so that they could do a comparison. All I see is a true lack of energy or true curiosity/interest in our illness. And, I don't want to be cynical. The researchers at the conference are very passionate...but the NIH is avoiding us and our issue, because it can.

 

[Diwi9]

And to continue on my rant...there is no such thing as a "sanitized" or "perfect model" of ME/CFS. This is where massive scale studies are needed with the use of bioinformatics.

 

[delphis]

does Dr Nath have a study people can volunteer for?
edit:
yes, he does, here it is:

https://clinicalstudies.info.nih.gov/ProtocolDetails.aspx?A_16-N-0058.html @External@me/cfs

 

[Seven7]

What do you get if you get enrolled? Some studies will give you all the results, and if you get a rare deasease do you get told?