Nancy Klimas Gulf War Syndrome results

[perrier]

The treatment is pretty short. 4 weeks of etanercept + 1 week of mifepristone + 8 weeks of observation = 13 weeks = 3.25 months. Though on the graphic below (where I got the info) it says a total of 16 weeks.

She's mentioned in a video that she's had 1 GWS patient go through and said that person responded very well.

 

[perrier]

Thanks for the graph. Do we know around when Dr Klimas should have some news we could hear.

 

[nandixon]

Hi @Belbyr do you know how they are going about getting the funding?

Where do I donate to, to get the funds to go towards this?

There's a general update on Klimas's GWI and ME/CFS research and funding efforts given in this post:

https://forums.phoenixrising.me/ind...-for-pre-menopausal-women.62656/#post-1020752

(That update gives the following link for donation purposes: http://www.nova.edu/nim/donations)

 

[TrustTheProcess]

Just to add on- I am another person willing and able to raise money for the men's clinical trial. My sense is that there is an untapped group of people eager to assist in getting a clinical trial moving. A quick glance at INIM's Facebook page shows an individual asking how he might contribute, without a response. I've personally spoken with a number of individuals ready to help.

 

[Belbyr]

Good to know, trusttheprocess. I will let her know we are out there.

 

[prioris]

GWS was primarily caused by the vaccines they gave soldiers. They used the French soldiers as the control group. They didn't get the vaccinations hence no GWS except for the very few likely mixed in with the the troops of other countries.

 

[TrustTheProcess]

Ok, latest update. It looks I will be there in Florida around the middle to end of January. I received details on money they are trying to raise for Phase 1 trial in men. Good thing is 50% of it is raised the unfortunate thing (which blew me away) is they still need $400,000 more to pay for it .

Women's trials are underway I believe. This data is coming from the senior director of development. The person I really need to be in touch with that work directly with Klimas group is out on Christmas break and will be back on the 2nd of January.

Any luck getting in contact?

 

[Belbyr]

Any luck getting in contact?

Spoke today with one of the staff members. It will be end of the month before they can take me, they sound busy and they are really trying to roll out some new ways to raise money. Hopefully I can survive the next 3 weeks, this relapse I am in is really terrible and has been going since October with no letting up.

 

[Hufsamor]

Spoke today with one of the staff members. It will be end of the month before they can take me, they sound busy and they are really trying to roll out some new ways to raise money. Hopefully I can survive the next 3 weeks, this relapse I am in is really terrible and has been going since October with no letting up.

Good luck!

Really hope you get some help.

 

[TrustTheProcess]

Does anybody have any more info on the GWS syndrome sufferer that Dr. Klimas mentioned in her talk a few months ago? Apparently there was clinical success. I'm interested in finding out more. Thanks!

Do you have a source on there being clinical success?

 

[wigglethemouse]

Do you have a source on there being clinical success?

This is the phase II study that will follow the current phase I study. Funding is approved.
https://www.nova.edu/nim/research/research-studies.html

Phase II study: TNF and Glucocorticoid antagonist for GWI associated multi-symptom disease hemostasis reset
This Phase II will follow the most effective of two potential dosing strategies from phase I for TNF and Glucocorticoid receptor antagonists in changing your bodies “sick response” of GWI into a more permanently healthy condition.

This is the video from 21 Aug 2018 where she talks about subgroups and the first person through the GWI clinical trial
https://sharkmedia.nova.edu/media/MECFS Broward Support Group 08 21 2018/1_um15n6ib?fbclid=IwAR3dBjwWa_zYHoyN0Xp0SL24xMrnB9yxK3LfCfWaMU3W70J0DhpHmhPIsak

Dr Klimas classifies treatment subsets several ways
A) 4 Hormonal groups - Men, Women pre, peri, post menopausal
B) By Immune & Metabolic pathway abnormalities
I believe she also mentions high anxiety as a subset

 

[TrustTheProcess]

This is the phase II study that will follow the current phase I study. Funding is approved.
https://www.nova.edu/nim/research/research-studies.html


This is the video from 21 Aug 2018 where she talks about subgroups and the first person through the GWI clinical trial
https://sharkmedia.nova.edu/media/MECFS Broward Support Group 08 21 2018/1_um15n6ib?fbclid=IwAR3dBjwWa_zYHoyN0Xp0SL24xMrnB9yxK3LfCfWaMU3W70J0DhpHmhPIsak

Dr Klimas classifies treatment subsets several ways
A) 4 Hormonal groups - Men, Women pre, peri, post menopausal
B) By Immune & Metabolic pathway abnormalities
I believe she also mentions high anxiety as a subset

Thank you for the response, I will take a look. To me, there seems to be a disconnect between the level of excitement and positivity in these videos about the clinic possibly having found a way to reboot these ME/CFS subgroups, and level of attention being paid. When one of the leading researchers/physicians/advocates of the illness says on a YouTube video, "In the ME/CFS world, we have the models. We know what to do. We're ready for human clinical trial", and there are only 3,000 views, there is something broken with the way the research updates are being delivered.

Put another way, if I was to reach out to individuals outside of family/friends in the hopes of fundraising for the phase I clinical trials, am I to say, "Hey! Check out 9:30 of this video that has 3,000 views. Look how energized this brilliant researcher is!"? I want to help as much as possible with the fundraising. The money, after all, is what is stalling the trials. But there needs to be:

1. A stand-alone video from the clinic detailing why the clinic is so excited about the phase I trials, thereby laying the foundation for fundraising opportunities.
2. Easier online access to donating. Donating directly to the trials is unnecessarily complicated.

 

[junkcrap50]

Thank you for the response, I will take a look. To me, there seems to be a disconnect between the level of excitement and positivity in these videos about the clinic possibly having found a way to reboot these ME/CFS subgroups, and level of attention being paid. When one of the leading researchers/physicians/advocates of the illness says on a YouTube video, "In the ME/CFS world, we have the models. We know what to do. We're ready for human clinical trial", and there are only 3,000 views, there is something broken with the way the research updates are being delivered.

Put another way, if I was to reach out to individuals outside of family/friends in the hopes of fundraising for the phase I clinical trials, am I to say, "Hey! Check out 9:30 of this video that has 3,000 views. Look how energized this brilliant researcher is!"? I want to help as much as possible with the fundraising. The money, after all, is what is stalling the trials. But there needs to be:

1. A stand-alone video from the clinic detailing why the clinic is so excited about the phase I trials, thereby laying the foundation for fundraising opportunities.
2. Easier online access to donating. Donating directly to the trials is unnecessarily complicated.

Makes me wonder why the Open Medicine Foundation hasn't given her any money and makes me kind of skeptical of OMF too. They're funding far riskier and less likely things.

 

[wigglethemouse]

Makes me wonder why the Open Medicine Foundation hasn't given her any money and makes me kind of skeptical of OMF too

Only government can properly fund the research. Typically one research study costs ~$3M+. Just look at the NIH website for examples.

As for clinical trials, they are even more expensive. Klimas just received an $8MM grant to fund her GWI trials. You may want to read this post for more info
https://forums.phoenixrising.me/ind...tern-klimas-update-letter.62656/#post-1020752

 

[prioris]

I remember decades back when Klimas use to write ambivalent articles on CFS that would subtly imply ME/CFS was a psychiatric disease also. Klimas has a long history of being an insider so she getting an 8M funding from the government to research GWS is not surprising.

 

[CJB]

I remember decades back when Klimas use to write ambivalent articles on CFS that would subtly imply ME/CFS was a psychiatric disease also. Klimas has a long history of being an insider so she getting an 8M funding from the government to research GWS is not surprising.

I remember her saying awhile back that she was able to get Dept of Defense funding for her GWI studies. She applies what she learns to us. I hope we can be generous with her. She's one of the "good guys".

 

[junkcrap50]

I remember decades back when Klimas use to write ambivalent articles on CFS that would subtly imply ME/CFS was a psychiatric disease also. Klimas has a long history of being an insider so she getting an 8M funding from the government to research GWS is not surprising.

Psychiatric is different than psychological.