Solve CFS and Biovista release name of drugs for repurposing

[Kati]

Are there words in the English language to express when someone is far beyond underwhelmed and disappointed? If so, that is what I feel from reading those results LOL.

I underestimated how I felt. Basically it's VERY disappointed and VERY underwhelmed. We truly are worth better than a little Trazodone and LDN.

 

[Sidereal]

All I can say is, what a joke.

 

[geraldt52]

Why are they announcing this now? Is this just a part of their annual fund-raising campaign?

They should have announced this when they announced that Suzanne Vernon was leaving. In fact, they should have left Suzanne Vernon take this announcement with her as they slammed the door behind her.

 

[jimells]

They should have announced this when they announced that Suzanne Vernon was leaving. In fact, they should have left Suzanne Vernon take this announcement with her as they slammed the door behind her.

This fiasco is one more reason the Solve CFS bunch are not held in very high esteem.

 

[Denise]

I don't remember the original parameters of the study.
I am much more than a little disappointed that in the results.
And that it took SO long for the results to be made public - SCMI (then CFIDS Association) was talking about this at the FDA meeting in 2013 and I thought the results were imminent at that time.
Someone (elsewhere) brought up that dosing doesn't show up in this at all....

The (small) positive is that the results were made public.

 

[Gingergrrl]

I underestimated how I felt. Basically it's VERY disappointed and VERY underwhelmed. We truly are worth better than a little Trazodone and LDN.

Agreed!

All I can say is, what a joke.

Agreed again...

 

[Sasha]

This fiasco is one more reason the Solve CFS bunch are not held in very high esteem.

I'd say the Solve bunch didn't seem to be held in particularly high esteem (as a Brit, looking in from outside the US) but AFAIK their personnel have now changed entirely and people seem to be very impressed with the new bunch. I'm very impressed with Carol Head and Zaher Nahle. It looks as though there was some sort of silent revolution.

 

[ScottTriGuy]

I'd say the Solve bunch didn't seem to be held in particularly high esteem (as a Brit, looking in from outside the US) but AFAIK their personnel have now changed entirely and people seem to be very impressed with the new bunch. I'm very impressed with Carol Head and Zaher Nahle. It looks as though there was some sort of silent revolution.

I'm trying to reconcile the positive pronouncements of these new folks with the release of this disappointing report.

 

[Sasha]

I'm trying to reconcile the positive pronouncements of these new folks with the release of this disappointing report.

In 2012, the Solve ME/CFS Initiative—under its former organization as the CFIDS Association of America—funded Biovista Inc., a private drug development services company, to identify potential drugs that might be repurposed to ameliorate ME/CFS symptoms. Biovista identified two FDA-approved drugs that might have applicability for ME/CFS.

Since the completion of the work, the possibility of raising funds to further develop a treatment based on this combination has been explored. In view of the recent effort for National Institutes of Health funding for ME/CFS, the research and patient community may be better served by making this initial finding known to the public now.

I take the subtext of these two paras to be, "We weren't responsible for this and don't think much of it and don't see the need for continued secrecy". I might be projecting my own wishes onto it, though!

 

[jimells]

Does anyone know how much money they sent to Biovista?

 

[Justin30]

Maybe we should send Biovista a copy of he "Forgotten Plague"?

We desperatelty need funding for top quality research and clinical trials.

 

[Roseblossom]

Unbelievable - a recommendation for Trazodone, an antidepressant that exacerbates core ME/CFS symptoms; side-effects include orthostatic hypotension, cognitive impairment, sedation/weakness, and cardiac arrhythmia.

 

[elizabeth234]

Yes, this result is distinctly underwhelming. The decision to fund Biovista for this research was in 2011. Our organization announced this result as soon as our agreement with Biovista to hold it in confidence ended, on 12/31/15. Biovista had continued to believe that they could raise funds for a clinical trial, and we had agreed, two years ago, to give then time to make the attempt. Carol Head

 

[Kati]

Yes, this result is distinctly underwhelming. The decision to fund Biovista for this research was in 2011. Our organization announced this result as soon as our agreement with Biovista to hold it in confidence ended, on 12/31/15. Biovista had continued to believe that they could raise funds for a clinical trial, and we had agreed, two years ago, to give then time to make the attempt. Carol Head

Thank you for sharing this @elizabeth234 and welcome to the forums!

It is refreshing to have an organization leader to be transparent and say, look, this is what we tried, and it didn't work the way we wanted to. Hopefully the next time around, especially with new players around, outcomes will be different.

 

[jimells]

@elizabeth234 thank you for coming here and engaging with us. Do you have any comments on the recent official response to the latest CFSAC recommendations?

 

[shannah]

@jimells In case Elizabeth doesn't see your message right away:

http://solvecfs.org/solve-mecfs-initiative-grades-the-hhs-response-to-cfsac-recommendations

 

[Thomas]

LDN and Trazadone? Seriously? That's the repurposed revelation? What's next, Klonopin and Prozac? I don't know anyone who's received serious positive changes to their illness or disability with either LDN or Trazodone. And this after seeing over 60 reviews. Anyways...

Now that we're back in the 21st century I think the interleukin-1 blocker Anakinra (Kineret) should be played around with as I heard both Klimas and Peterson claim it could be very helpful for ME.

And if anyone wants a list of repurposed off label pharmaceuticals to try on themselves then pick up a copy of Tuning The Brain by Jay Goldstein or check out the "Rapid Remissions" thread here on PR.

Trazadone and LDN - what a joke.

 

[elizabeth234]

@elizabeth234 thank you for coming here and engaging with us. Do you have any comments on the recent official response to the latest CFSAC recommendations?

Yes, we were very disappointed by the response to the CFSAC recommendations. We issued a "report card" grading the several HHS agencies two days after the HHS response was posted. You can see our "report card" here. >>> http://solvecfs.org/solve-mecfs-initiative-grades-the-hhs-response-to-cfsac-recommendations We were quite displeased and continue to press forward. I am working with others on CFSAC on this. . Carol Head