Living With Fibromyalgia - Online Support Group

Massachusetts General Clinical Trial

Has anyone been following the Massachusetts General clinical trials on a tuberculosis vaccine for fibro? I hope this link works. Is anyone signed up for the trials?

I’ve been following this. Any updates? I’ve done a lot of research on this condition and having worked in the medical field I heard about this a long time ago. I’ve been following along with Dr. Jose Montoya @Stanford who is the only dr that gets it. He thinks it a microbial or bacteria cause. I’ve been thinking this for years. Mycobacterium is closely related to tb so it totally makes sense.

Yes I took the test and they also sent someone for another blood test yesterday for another trial but related.
I am 96% positive for fibromyalgia!

The trial has taken a while to get started and I am moving to Europe so can’t be in it.
I did want to try the treatment but have to wait until trial completes and approval of the vaccine. I don’t know if I will have access over there. If you go on the trial you may get placebo anyway. It’s pot luck.

I also believe it’s infections old viral deactivation fungal bacterial etc so it
Might just work as tb is a bacterium.
Watching with interest.

Do you think this test is giving validity to fibro as a real illness? Why hasn’t it caught on more? My rheumatologist hasn’t even heard of it.

I just got approved to take the blood test. Will report back when I learn more,

I talked to the people at Epicgenetics today. They are sending someone to my house next week to draw the blood at no cost to me. Medicare is picking up the bulk of the test cost, and they said if I couldn’t pay the balance, they would still help me. Depending on the result will say whether I’ll be a candidate for the upcoming trial. The trial hasn’t started yet. They don’t know if everyone in the trial will have to go to a central place, like Boston, for the vaccines (2, twelve months apart) or if there will be several places you can go across the country. Of course, you could be in the placebo group and not know it, too.

I wonder about the folks who say they have already been vaccinated against tb, often as part of their job, and still have fibro. That’s a little disheartening.

My rheumatologist had heard of the test. But he said it would be wasting our money (my insurance company says it is experimental) because he is already certain i have fibromyalgia.

If you want to participate in their trial of the fibro vaccine, you have to have been tested by them and come up as positive.