Lisa,
I found the abstract for what appears to be the Prokarin trial, it was a 2002 trial of short duration, and looked at endpoints on fatigue and performance on tests. The first author is Gillson. Is this the trial you were talking about? I don't know what NMSS's criticisms were and how that could have squelched research into Prokarin.
Yes, there was only one small clinical trial done on Prokarin and Dr. Gillson was the medical doctor in charge of it at that time.
I'll try to make this story as short as possible. This clinical trial was done mostly because the NMSS demanded from Elaine Delack (inventor of Prokarin) that a scientific study be done before they would consider Prokarin for possible use in the treatment of MS related fatigue.
Prior to this trial, the NMSS was extremely upset with Elaine because a tv station in Seattle WA had done a story on some of the early success of Prokarin during some pilot studies. It was the station that pushed for the story and interview and not Elaine. She was very reluctant for many reasons.
Elaine paid for the trial out of her own pocket in the hope that the NMSS would give Prokarin the same kind of consideration it gave other off label drugs as long as the results were positive. In the meantime the NMSS was less than cordial to Elaine or Prokarin and they made some very false statements about the drug.
The trial was completed and published by The MS Journal. It isn't a very easy task for a non-pharma company or unknown researcher to get a trial published by a well-known MS journal. The editor stated the trial was good science, properly conducted and showed good enough results to merit further trials.
The day The MS Journal released their publication, the NMSS called Elaine and asked for a copy of the trial.( at 1600 Eastern Time) They wanted to issue a press release on the trial. She didn't have it since the final published trial data is totally controlled by the publisher (in this case the MS Journal) Elaine told the NMSS she could get them one but it would take a couple of days.
In the meantime, Good Morning America (tv news show) had contacted Elaine's publicist at the time (again, same date as the NMSS did but earlier in the day) and wanted a copy of the trial in order to do a news item on their daily show. The final trial publication wasn't available (reason above) but the publicist told ABC that she could fax them an earlier incomplete draft of the trial but that it would have to be for their own in-house info only and could not be used for quotation purposes. It was simply done as a courtesy so ABC had some idea of what took place in the trial.
Within an hour of that 1600 call, the NMSS issued a press release about the trial (without even having the trial in hand or reading it) and made some very inaccurate comments. (the information as posted on their website was changed later on) ABC News called the publicist and informed her the news story was cancelled....without giving a reason. When the NMSS was challenged on their press release, they told Elaine that her publicist faxed them the trial data when in fact it was ABC News who faxed them the early draft copy that they had received. The NMSS had lied about the fax origination and when they sent a copy of it to Elaine as "proof" it came directly from her publicist, they forgot to realize that the ABC News "sender" fax number was printed at the very top of the page! The NMSS also stated that they had never phoned Elaine for a copy of the final trial data!
Elaine set up a meeting with the NMSS in New York because they now wanted her to explain the trial data and theory behind Prokarin. The meeting was a farce because the people who attended couldn't understand any of the scientific info that she was trying to explain to them and they made it clear they had no intention of considering Prokarin as a possible alternative medication for MS fatigue.
There are other details that I have left off in this story, especially the behavior of some of the NMSS upper executive, but it gives you an idea of how the NMSS picks and chooses what they want known about what is going on in MS. Prokarin was perceived as a threat to the established world of MS medicine at that time and in no way was the NMSS going to acknowledge it as a possible fatigue treatment. It was at this point that Elaine decided it would be fruitless to conduct further expensive trials that would cost millions which she simply didn't have.
You start to wonder just what other possibilities for MS treatment have never got to the public stage.
Harry
