Rich Carson's advert/hype of a new drug treatment for ME.

[Who Me?]

Saw this on PR. Don't tag me or ask me about it. Just FYI

From a Facebook post by Rich Carson (of ProHealth)

A new drug is coming for ME/cfs as a proposed new treatment. Administration is subcutaneous and the drug, a peptide, will initially be given three times a week for two weeks in a controlled study involving between 12 and 20 ME patients. It has already passed FDA phase I safety and toxicity trials that were sponsored by a $700 mill company.

If it works, the drug would likely be proposed as a treatment for similar conditions such as Fibromyalgia, Gulf War Syndrome(GWS), Multiple Chemical Sensitivity (MCS), Chronic Lyme Disease. It works by affecting specific, stress related brain receptor sites, changing them from being in a heightened state of arousal, to a normal, resting state. These receptors, while being in a hyper aroused state, create a host of biological changes that alter metabolic function including energy production and detoxification, digestion, neurological function, and immune function.

It's now a hot topic among leading ME researchers and clinicians, and Cort Johnson of HealthRising and I are working together on an article to introduce the drug and the pharmaceutical company's fascinating new hypothesis of the cause of ME (and FM, GWS, CLD) to the world. It's very exciting stuff from any angle. Stay tuned to ProHealth.com for more.

Original post here (since deleted)
https://www.facebook.com/rich.carson.94/posts/721539264685295

This just seems a bit of an odd way of doing things like this to my mind. Don't drug companies normally want to keep their research under wraps to stop competitors from trying to copy them? Then there's the picture which totally oversells what is actually described. Or perhaps I'm just being over sensitive about it, obviously if it was an effective treatment then that would be awesome, but so far they've only tested it on rats (information from a comment on the Facebook post).

http://forums.phoenixrising.me/inde...-new-drug-treatment-for-me.49821/#post-821813

Don't tag me or ask me about it. Just FYI​

 

[Empty]

I had not seen this. Looking forward to the article.

 

[Cort]

Saw this on PR. Don't tag me or ask me about it. Just FYI

From a Facebook post by Rich Carson (of ProHealth)

A new drug is coming for ME/cfs as a proposed new treatment. Administration is subcutaneous and the drug, a peptide, will initially be given three times a week for two weeks in a controlled study involving between 12 and 20 ME patients. It has already passed FDA phase I safety and toxicity trials that were sponsored by a $700 mill company.

If it works, the drug would likely be proposed as a treatment for similar conditions such as Fibromyalgia, Gulf War Syndrome(GWS), Multiple Chemical Sensitivity (MCS), Chronic Lyme Disease. It works by affecting specific, stress related brain receptor sites, changing them from being in a heightened state of arousal, to a normal, resting state. These receptors, while being in a hyper aroused state, create a host of biological changes that alter metabolic function including energy production and detoxification, digestion, neurological function, and immune function.

It's now a hot topic among leading ME researchers and clinicians, and Cort Johnson of HealthRising and I are working together on an article to introduce the drug and the pharmaceutical company's fascinating new hypothesis of the cause of ME (and FM, GWS, CLD) to the world. It's very exciting stuff from any angle. Stay tuned to ProHealth.com for more.

Original post here (since deleted)
https://www.facebook.com/rich.carson.94/posts/721539264685295

This just seems a bit of an odd way of doing things like this to my mind. Don't drug companies normally want to keep their research under wraps to stop competitors from trying to copy them? Then there's the picture which totally oversells what is actually described. Or perhaps I'm just being over sensitive about it, obviously if it was an effective treatment then that would be awesome, but so far they've only tested it on rats (information from a comment on the Facebook post).

http://forums.phoenixrising.me/inde...-new-drug-treatment-for-me.49821/#post-821813

Don't tag me or ask me about it. Just FYI​

Thanks...

Actually you're right. Rich is very excited and did that without permission. The company which has license rights to the drug didn't know that he would do that and asked him to pull it.

I certainly understand where Rich was coming from - it is an exciting hypothesis AND it is entirely experimental...A blog on it will be coming out in the not too distant future.

 

[Not dead yet!]

Thanks...

Actually you're right. Rich is very excited and did that without permission. The company which has license rights to the drug didn't know that he would do that and asked him to pull it.

I certainly understand where Rich was coming from - it is an exciting hypothesis AND it is entirely experimental...A blog on it will be coming out in the not too distant future.

There have been plenty of alternative ways to fight ME. The Dr. Goldstein protocol comes to mind as particularly different. I'd think that system would be the darling of big pharma.

http://www.cfstreatmentguide.com/dr-jay-goldstein-a-z-treatments.html

Dr. Goldstein died and I'm not sure anyone continued his methods.

 

[Empty]

Thanks...

Actually you're right. Rich is very excited and did that without permission. The company which has license rights to the drug didn't know that he would do that and asked him to pull it.

I certainly understand where Rich was coming from - it is an exciting hypothesis AND it is entirely experimental...A blog on it will be coming out in the not too distant future.

I am looking forward to my brown rice injections.

 

[Who Me?]

There have been plenty of alternative ways to fight ME. The Dr. Goldstein protocol comes to mind as particularly different. I'd think that system would be the darling of big pharma.

http://www.cfstreatmentguide.com/dr-jay-goldstein-a-z-treatments.html

Dr. Goldstein died and I'm not sure anyone continued his methods.

Dr goldstein was banned from hospitals, lost his license then died. Some people try his stuff but the whole of his protocol which was sitting in his office all day long taking one thing after another (hence the loss of his license( has not been duplicated and as far as I remember no one ever had long term success. One or two things would work.

Big pharma wouldn't touch his protocol it was so out there

 

[Not dead yet!]

Dr goldstein was banned from hospitals, lost his license then died. Some people try his stuff but the whole of his protocol which was sitting in his office all day long taking one thing after another (hence the loss of his license( has not been duplicated and as far as I remember no one ever had long term success. One or two things would work.

Big pharma wouldn't touch his protocol it was so out there

I'm actually more inclined to be sympathetic to people who "lose their license" for several reasons. Not that it matter why, but my experience has taught me that the "official" version of reality is rarely fully true.

Since he didn't delay or interfere with other modes of health care, I don't see what' so wrong with his system. It's one thing to tell a cancer patient... stay home, drink tea, you will heal (ie. delays needed care). And another to tell someone who has NO treatment options from anywhere else... let's try a few known-safe things and see what works. He could've just as easily give the person a week's worth of each drug or even two at a time, and via phone contact changed them, it would've just taken longer.

I'm not sure I see the issue.

But my point was, lots of odd protocols have helped people in the past. People make fun of Reiki, but if you've ever had it, you know it just feels good. Nothing wrong with feeling good, is there?

I don't think in reductionist ways.

 

[Who Me?]

Some quotes from PR

AndyPR said: ↑

From a Facebook post by Rich Carson (of ProHealth)

Original post here https://www.facebook.com/rich.carson.94/posts/721539264685295

This just seems a bit of an odd way of doing things like this to my mind. Don't drug companies normally want to keep their research under wraps to stop competitors from trying to copy them? Then there's the picture which totally oversells what is actually described. Or perhaps I'm just being over sensitive about it, obviously if it was an effective treatment then that would be awesome, but so far they've only tested it on rats (information from a comment on the Facebook post).​

Pure scam. Leading researchers and clinicians have never heard of this and are unlikely to want to. The guy cannot even write good English. It annoys me that we live in a world where it is acceptable for people wanting to make money out of other people who are sick are allowed to do pretty much say they like.
​

Jonathan Edwards, Thursday at 1:22 PM
#4
Esther12, HowToEscape?, MeSci and 25 others like this

AndyPR said: ↑

A little bit more information from comments on that post;but no information on where and exactly when. Just seems very weird to me.​

Thanks for updating us. It's put my mind at rest it's nothing of real ground breaking importance other than, perhaps, to the people who want to maximize investor interest, before floating the company on the stock market - Rich carson says in a Facebook post the company is ''not publically traded at this time.''.
Source: https://www.facebook.com/rich.carson.94/posts/721539264685295
To me, this implies it will be in the future.

Even if it was of huge importance, it's potential availability is at least 3 years away according to the Facebook post discussions above. In 3 years we'll have the Rituximab findings out, and at least Phase 1 of the CycloME study for severe ME from Norway. Also by then, the Stanford group should have made real progress.

Found this about the gentleman apparently presenting with Dr Charles Lapp, Dr Podell.

Richard Podell, M.D., MPH, is a graduate of Harvard Medical School and the Harvard School of Public Health. He has been treating patients with ME-CFS and Fibromyalgia for more than 20 years. A clinical professor at New Jersey's Robert Wood Johnson Medical School, Dr. Podell see patients at his Summit, NJ and Somerset, NJ offices. His website is DrPodell.org​

Source: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=29814

There are three youtube videos on the link above of Dr Podell talking with Dr Light about Chronic Fatigue and Pain.
​

 

[Forebearance]

I'm all in favor of peptides being more widely available. I have known a few people online who tried various peptide injections and were helped by them. But there were a limited number of doctors who knew how to prescribe and administer the injections, so I never got to try it.