Nancy Klimas Gulf War Syndrome results

[boohealth]

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!

 

[junkcrap50]

No, but I'm very disappointed that she's only had 1 patient so far go through the study. On video in October 2017, Klimas said that she hoped to start the GWS study by Christmas (of 2017). So, if she did start at Christmas 2017 or the beginning of 2018, that means it took all of 2018, one year, to get 1 patient through the study. Hopefully there was some delay in starting the study and she gets the rest of the patients done soon.

 

[boohealth]

Anybody else have info on the patient? Thx.

 

[Belbyr]

I will be a patient of hers shortly. Maybe I can ask around.

Didn't she state that they were doing a trial of 4-6 people around the time of that video release. The trials are 4 months, with 1 month being the actual treatment. I'm sure it's 2 things slowing it. 1. Waiting to see how the patients do over time and 2. inspecting all the changes in the biology

 

[boohealth]

I will be a patient of hers shortly. Maybe I can ask around.

Didn't she state that they were doing a trial of 4-6 people around the time of that video release. The trials are 4 months, with 1 month being the actual treatment. I'm sure it's 2 things slowing it. 1. Waiting to see how the patients do over time and 2. inspecting all the changes in the biology

Thanks. I can also contact her directly but if you find out please come back and post.
The two conditions overlap a lot.

 

[babeng]

I will be a patient of hers shortly. Maybe I can ask around.

Please do. Also what's the status of the CFS studies? My understanding was that the post-menopausal women study was supposed to have started this fall. In addition, in her talk late summer she said she hoped to start the men study by christmas.

I can't find any of these CFS studies on clinicaltrials.gov, neither the GWS study with the etanercept and mifepristone, which I find weird (the glutathione/curcumin and CoQ10 studies are there)...

 

[Belbyr]

Thanks. I can also contact her directly but if you find out please come back and post.
The two conditions overlap a lot.

Oh that's cool. I know she is a super nice person. I'm supposed to be hearing back from them today on some appointment scheduling so when I say 'soon' I'm thinking I might be lucky to see her within the next month or two.

 

[Belbyr]

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.

 

[boohealth]

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.

Thank you! Frustrating as heck about the funding.

 

[knackers323]

Is there a gofundme campaign or something for this?

I seen a story recently where about this amount of money was raised to fix some lucky persons sports car

 

[wigglethemouse]

I can't find any of these CFS studies on clinicaltrials.gov, neither the GWS study with the etanercept and mifepristone, which I find weird (the glutathione/curcumin and CoQ10 studies are there)...

There is some info on this government site updated on Nov 13th
https://cdmrp.army.mil/gwirp/research_highlights/18klimas_highlight

In September 2018, Dr. Klimas received a GWIRP Clinical Consortium Award. The objective of the Gulf War Illness Clinical Trials and Interventions Consortium (GWICTIC) is to combine the expertise and efforts of the two previous consortia and build upon their results by implementing early-phase clinical trials to evaluate candidate therapeutics for GWI. The GWICTIC aims to execute five Phase I or Phase II clinical trials in the four year period of performance. The first set of trials will extend the initial evaluation of the entanercept plus mifepristone treatment carried out by the original consortium. Subsequent interventions will target additional pathobiological mechanisms elucidated by the prior consortia efforts.

On the NOVA site the phase I and phase II trials are listed under "Gulf War Illness Consortium" which is a separate section from the COQ10 etc. Maybe reporting is different depending on who is sponsoring????
https://www.nova.edu/nim/research/research-studies.html
I remember seeing a recruitment for a mens ME/CFS clinical study on the NOVA site, but I can no longer find it?????

 

[wigglethemouse]

Okay, another link for the Gulf War Illness Clinical Trials and Interventions Consortium for research with funding of $5MM
https://cdmrp.army.mil/search.aspx?LOG_NO=GW170044

The studies proposed in this Consortium build on the findings from Dr. Klimas and Dr. Sullivan’s previously funded Consortia.

There will be three Phase I clinical trials proposed, as well as two Phase II trials, that target mechanisms of energy production, inflammation, and immune function.

Specifically, based on findings from Dr. Klimas’s GWIC, Study 1 and Study 2 will evaluate a combination approach that targets inflammation and energy production using entanercept, an injectable drug that has been used in Rheumatoid Arthritis and Psoriasis, and mifepristone, a synthetic steroid.

Study 3 and 4 will be based on the findings from Dr. Sullivan’s GWIC and will determine the most effective antioxidant, CoQ10 or glutathione, in a Phase I study and then take the most effective antioxidant and combine it with intranasal insulin. Lastly,

Study 5 will evaluate a nutraceutical, Bacopa, that has been shown to have multiple impacts on inflammation, immune function, and energy production.

 

[perrier]

Is there any way to know how things are going with what Dr Klimas is now testing?

 

[Belbyr]

Is there a gofundme campaign or something for this?

I seen a story recently where about this amount of money was raised to fix some lucky persons sports car

Not that I am aware of, but like Nancy said... they are really bad at fund raising.

 

[Belbyr]

Is there any way to know how things are going with what Dr Klimas is now testing?

I am not real sure. I know they have recently done a website overhaul, which is a good first step. Their staff has now increased to over 30 people (researchers, clinicians, and computational). I don't think their GWS has any shortage of funding.

I will of course be asking, it seems Dr. Klimas makes a public appearance every 3-5 months on various youtube or website videos about research.

 

[knackers323]

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.

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?

 

[Belbyr]

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?

I will be asking for all of us hopefully soon in person. I was just contacted via email today from the woman I need to be speaking with that is on Klimas's team. She will be helping with the scheduling.

Sometimes they start trials before all the money is in. Surely we would have some kind of update on the women studies soon since the treatment is only about a week long. I know the biologic follow up part of it will prolong it. I know that the solvecfs.org funds a lot of her studies and pays for some of the researchers at NOVA. I wonder if there could be a way to donate to them but earmark it for these 'get out of the CFS trap clinical trials' by the NOVA group. SolveCFS has funded some really good stuff over the last few years. It looks like they get a study going but if it's not yielding results within the first year, it gets axed. We wouldn't have had Jared Youngers new inflammation findings without them funding him. https://solvecfs.org/ramsay-award-program/

 

[perrier]

I will be asking for all of us hopefully soon in person. I was just contacted via email today from the woman I need to be speaking with that is on Klimas's team. She will be helping with the scheduling.

Sometimes they start trials before all the money is in. Surely we would have some kind of update on the women studies soon since the treatment is only about a week long. I know the biologic follow up part of it will prolong it. I know that the solvecfs.org funds a lot of her studies and pays for some of the researchers at NOVA. I wonder if there could be a way to donate to them but earmark it for these 'get out of the CFS trap clinical trials' by the NOVA group. SolveCFS has funded some really good stuff over the last few years. It looks like they get a study going but if it's not yielding results within the first year, it gets axed. We wouldn't have had Jared Youngers new inflammation findings without them funding him. https://solvecfs.org/ramsay-award-program/

If the treatment is short, surely we should be hearing something. Please keep us posted.

 

[Belbyr]

If the treatment is short, surely we should be hearing something. Please keep us posted.

It would be amazing. I'm trying not to get too excited because I know we all have our own subgroups we are in. I think that is why the Ritux trials failed, because it obviously worked for some.

 

[junkcrap50]

If the treatment is short, surely we should be hearing something. Please keep us posted.

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.