New blood test for FM/CFS

[Jacque]

Hi y’all!!
I basically checked out for a while!! The fight has gotten me no where!!! My Enthusiasm over Dr. Kogelnik was short lived!!! When I left him I think he was charging $425 for 30 minutes.. Or something like that… I just felt like a number to him!! Never any follow up on our appointments etc.!!! 😡😢

I’m not sure if this has been talked about on the forum… And if it has my apologies!!!


A few months back I was up in the middle of the night..; (pain) and I saw A commercial about a fibromyalgia chronic fatigue syndrome study!!

Of course I got online and filled out the information… And to my amazement my insurance agreed to pay for the bloodwork!!!

And as expected I tested positive and I can be entered into their upcoming double blind trial!!! Yay me🙄!

The trials are great Darc wants to get the results of a genome test that they are finishing up right now to see if FM/CFS are hereditary!

They have found that we have abnormal cytokines and chemokines in our white blood cells!
The treatment will be a vaccine which you can read about when you scroll all the way to the bottom and see peer reviewed!

 

[Jacque]

once the trials begin it involves getting a dose of the vaccine once a year for 3 years.. And the lab is in Boston… Which is kind of a drag because I will have to pay for travel and lodging… And not know if I’m in a placebo group!! But I’m about that damn desperate… And after spending well over $300,000… On every treatment under the sun… Why stop now 😡

go to www.fmtest.com And fill out the information… If you are possibly interested in being a part of the trial… They contact Your insurance company for you… And if your insurance pays they send a phlebotomist out to your house

Ohhhhhhhhhhhhh ....and get a load of this!!!! They also test for Covid because they are finding that people with our illness are not dying from Covid like others… Because our bodies are not launching such severe cytokine shit storms!!!!

just Thought I would let you all know about this if you haven’t heard already! 🤪

 

[Tammy]

Hi Jacque........yes it's been a long time! Good to see you! I'm not understanding the vaccine connection with the tests. Where is the information about the vaccine itself and how it's going to help based on test results?

 

[ljimbo423]

I'm not understanding the vaccine connection with the tests. Where is the information about the vaccine itself and how it's going to help based on test results?

I found this at the website she posted. I think this might be what she referring to. It's under the treatment tab in the box to left, once you click on the link. There is also a video to watch at the bottom of that tab but I haven't watched it yet.

A fundamental change in how FM is treated.

Dr. Bruce Gillis, via a research gift, will cooperate with the Immunobiology Laboratories at Massachusetts General Hospital (MGH) and its director, Dr. Denise Faustman of MGH and Harvard Medical School, for an FDA approved human clinical trial of BCG (an inexpensive generic vaccine used globally to prevent tuberculosis) to treat fibromyalgia.

This is unlike today’s FM therapies, which are limited to addressing the symptoms of FM. Those 18 years and older who are FM/a® Test positive for fibromyalgia are invited to participate.

 

[Tammy]

Thanks @ljimbo423 ................I wish there was further discussion and explanation of the theory behind how the BCG vaccine might help and the connection with it and these particular tests.

 

[ljimbo423]

I wish there was further discussion and explanation of the theory behind how the BCG vaccine might help and the connection with it and these particular tests.

I could be wrong because I just read a little bit about it. It looks like they are just using this FM test to screen for people that have FM. Then use these patients in the vaccine trial to see if it works.

I googled the vaccine and again read very little but it seems to work by boosting the immune system. i would also like to know more about how the vaccine works. It's really interesting!

 

[andyguitar]

i would also like to know more about how the vaccine works. It's really interesting!

I wonder if this use of the BCG vaccine has anything to do with a recent finding that those who had it were less likley to get Covid? A finding which is disputed by many. @RebeccaRe did'nt you post about that a while ago?

 

[andyguitar]

Just had a quick look on the web. Seems like the BCG vaccine raises the levels of Tumor Necrosis Factor -TNF- and stimulates the production of regulatory T Cells. And the researchers are hoping that this will prevent an auto immune reaction they think is the cause of Fibromyalgia. I dont think it's about CFS though.

 

[MonkeyMan]

I dont think it's about CFS though.

Can someone please clarify whether or not this applies to ME/CFS. Thanks.

 

[andyguitar]

Can someone please clarify whether or not this applies to ME/CFS. Thanks.

I've had a good look @MonkeyMan and have found nothing about ME/CFS. It's Fibro. But lets not forget that there are some similarities. But one thing is clear.... the BCG vaccine is only being used to stimulate Regulatory immune cells, so they are not using it to kill a pathogen.

 

[Rebeccare]

I wonder if this use of the BCG vaccine has anything to do with a recent finding that those who had it were less likley to get Covid? A finding which is disputed by many. @RebeccaRe did'nt you post about that a while ago?

Yes, that's correct. Dr. Faustman at Mass General Hospital has proposed treating Fibromyalgia with the BCG vaccine, which is normally used to prevent tuberculosis. I found this article on the website that @Jacque linked to explaining the connection between the test used Epic Genetics and how they're teaming up with Dr. Faustman. It looks like the study is currently in phase II.

I dont think it's about CFS though.

Can someone please clarify whether or not this applies to ME/CFS. Thanks.

Although this particular trial is for fibromyalgia patients, there are a lot of people who have both FM and ME/CFS. Additionally, based on what I'm reading it looks like they theorize that the vaccine affects the cytokines somehow, so if the vaccine is found to help those with FM it could be that the same vaccine might possibly benefit people with ME/CFS.

 

[ljimbo423]

This quote is from the "this article" link @RebeccaRe posted-

As a result of the research findings, Gillis and a team of researchers associated with EpicGenetics, developed the FDA-compliant blood test,

the FM/a Test for fibromyalgia. It is available in most states in the U.S., as well as Canada, Europe, Turkey, Mexico, Central and South America, the Caribbean, Hong Kong, Australia and New Zealand. It is now covered by Medicare and most insurance plans. Gillis notes,

“Our test has a sensitivity that approaches 99 percent—no test is 100 percent—and a specificity, which is essentially how many times you eliminate anything false, approaching 94 percent. So it’s an extremely, extremely accurate test.”

 

[Art Vandelay]

Dr. Bruce Gillis, via a research gift, will cooperate with the Immunobiology Laboratories at Massachusetts General Hospital (MGH) and its director, Dr. Denise Faustman of MGH and Harvard Medical School, for an FDA approved human clinical trial of BCG (an inexpensive generic vaccine used globally to prevent tuberculosis) to treat fibromyalgia.

I had this vaccine as a child. I have both ME and FM.

Test for fibromyalgia. It is available in most states in the U.S., as well as Canada, Europe, Turkey, Mexico, Central and South America, the Caribbean, Hong Kong, Australia and New Zealand. It is now covered by Medicare and most insurance plans. Gillis notes,

“Our test has a sensitivity that approaches 99 percent—no test is 100 percent—and a specificity, which is essentially how many times you eliminate anything false, approaching 94 percent. So it’s an extremely, extremely accurate test.”

This group have been hyping their blood test for Fibro. Has anyone come across any scientific literature about the test? I didn't find any last time I looked.

Has anyone been able to get the test? The blood test certainly isn't available in Australia as they claim.

 

[andyguitar]

I had this vaccine as a child. I have both ME and FM.

I dont think the researchers are claiming that BCG prevents ME or Fibro, just that when it is given it helps to damp down autoimmune reactions. So having it years ago would'nt help. You would need it once a year.