Testing ourselves to find an answer

[kangaSue]

@Cheesus I just come across mention of Aperiomics elsewhere and found your posts here. Just wondering what your thoughts are now about this outfit and did you happen to get anything useful out of the testing?

 

[Cheesus]

@kangaSue It's a good company, but I personally didn't think it produced particularly useful data. I got confirmation that I have lots of different bacteria in and around my body, but it is impossible to know if any of those bacteria are linked to my condition.

I suppose it ruled out Lyme, but I didn't think I had that anyway.

 

[Mel9]

@kangaSue It's a good company, but I personally didn't think it produced particularly useful data. I got confirmation that I have lots of different bacteria in and around my body, but it is impossible to know if any of those bacteria are linked to my condition.

I suppose it ruled out Lyme, but I didn't think I had that anyway.

This approach is very interesting. What sort of samples did you get tested? (Blood? Tissues?). Using primers for bacteria only?

 

[Cheesus]

@Mel9 I searched for virus, bacteria and fungi in blood, urine, stool and on a nasopharyngeal swab.

 

[Judee]

Just a little sidetrack, if I may. This story got me thinking after I read this part:

Prompted by financial incentives passed by Congress, the drug industry is hotly pursuing treatments for a throng of rare diseases. That has led to breakthroughs in several conditions, including cystic fibrosis and spinal muscular atrophy. Nevertheless, with a small number of subjects to study and relatively few people to sell new drugs to, many rare diseases are overlooked by doctors and scientists, hampered by a lack of resources and public awareness.

ME/CFS is not rare though and perhaps if we could put that in front of some of the drug companies (letter writing from many patients) we could get them to realize the earnings potential in developing treatments for this.

We've been trying to approach this from a government to research to discovery to treatment pathway. What about reversing that somewhat? Drug companies lobby the government and have a lot of effect on policy changes and if they thought they could make money on this...?

Anyway just a thought. (Maybe I should have started a new thread with this thought?)