Testing ourselves to find an answer

*GG*

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Cheesus

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Probably most people on this forum have done some sort of testing to try and get to the bottom of their disease*.

I am currently pursuing a new line of investigation myself. Specifically, I am about to embark on shotgun metagenomics for infectious disease discovery, which is a hypothesis-free method of investigating potential pathogens (usually when looking for a pathogen you have to know what to look for). Basically I will give a sample, then the company I am using with analyse the DNA of everything in the sample to see if there are any pathogens lurking about. If there is a pathogen there, I should be able to see it, regardless of whether or not it is currently known to science.

I haven't been able to find another person with ME that has done this kind of testing, either privately or in a study.

*Edit: Just finished reading the article. We do testing, but not quite to the extent of this guy!
 
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Mohawk1995

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He appears to have had the right combination of wit, physical abilities and proximity to resources that few have. That being said, it is a great story and underscores that participating in both global and personally to the extent possible in finding a solution should be highly encouraged!
 

markielock

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I think when you're sick for long enough and you're met with enough scratching heads, you get fed up and become more proactive at looking in to things (within your means, of course). I am so impressed with how knowledgeable and scientific everyone is on this forum. My experiences actually sparked a passion for Biology in me, which I am pursuing to understand my own condition. Although this has caused its own issues, I've recently started a biology degree at the open university with the ambition of exploring my condition further. I encourage everyone to take control of their own health and keeping health professionals accountable for their inquiry in to your health, to the best of your abilities.
 

AdamS

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Probably most people on this forum have done some sort of testing to try and get to the bottom of their disease*.

I am currently pursuing a new line of investigation myself. Specifically, I am about to embark on shotgun metagenomics for infectious disease discovery, which is a hypothesis-free method of investigating potential pathogens (usually when looking for a pathogen you have to know what to look for). Basically I will give a sample, then the company I am using with analyse the DNA of everything in the sample to see if there are any pathogens lurking about. If there is a pathogen there, I should be able to see it, regardless of whether or not it is currently known to science.

I haven't been able to find another person with ME that has done this kind of testing, either privately or in a study.

*Edit: Just finished reading the article. We do testing, but not quite to the extent of this guy!
Awesome, please keep us updated on how the metagenomics goes, sounds interesting.
 

AdamS

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Think this article was posted before, seems familiar. If you have the mental capacity to do this, go for it!

GG
I certainly have a few ideas for tests, the problem is that I have no clue how i'd actually carry them out on myself, I imagine like @Mohawk1995 says that it requires resources that are out of reach. Perhaps I could speak to a University about it or something, i'm not sure where to start.
 

mrquasar

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Probably most people on this forum have done some sort of testing to try and get to the bottom of their disease*.

I am currently pursuing a new line of investigation myself. Specifically, I am about to embark on shotgun metagenomics for infectious disease discovery, which is a hypothesis-free method of investigating potential pathogens (usually when looking for a pathogen you have to know what to look for). Basically I will give a sample, then the company I am using with analyse the DNA of everything in the sample to see if there are any pathogens lurking about. If there is a pathogen there, I should be able to see it, regardless of whether or not it is currently known to science.

I haven't been able to find another person with ME that has done this kind of testing, either privately or in a study.

*Edit: Just finished reading the article. We do testing, but not quite to the extent of this guy!
Which company? Is it reputable? And how much is the cost? I know there are labs out there who do all sorts of specialized tests, but when I researched further, their testing methods were shown to be wildly inaccurate and the tests themselves without any proven scientific basis. I'm not saying all companies and tests are like this, but it's made me very skeptical. At least in the U.S., (as I understand it) these labs can offer these specialized tests with no oversight from the government. So basically, they don't have to prove to anyone that their tests are even accurate.

But I'd still like more information to look into this company and the tests it offers.

Thanks!
 

AdamS

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I think when you're sick for long enough and you're met with enough scratching heads, you get fed up and become more proactive at looking in to things (within your means, of course). I am so impressed with how knowledgeable and scientific everyone is on this forum. My experiences actually sparked a passion for Biology in me, which I am pursuing to understand my own condition. Although this has caused its own issues, I've recently started a biology degree at the open university with the ambition of exploring my condition further. I encourage everyone to take control of their own health and keeping health professionals accountable for their inquiry in to your health, to the best of your abilities.
I'm glad that your experience has inspired you to study Biology, it's great to hear that you're taking control and are turning something so frustrating into a positive.
 

Cheesus

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@mrquasar

The company is http://www.aperiomics.com/

I think one of the problems with private testing is that the tests are very often developed by the lab themselves. This is why I have never done private lyme disease testing: I am very sceptical of the usefulness of proprietary tests that have little or no evidence supporting their accuracy.

Shotgun metagenomics using next generation sequencing (NGS), on the other hand, has a good deal of evidence supporting its use in pathogen discovery. There is a lot of literature on it. The technology is quite versatile; you can also sequence the human genome or the gut microbiome with it - uBiome uses shotgun metagenomics in their gut microbiome testing.

Edit: I was going to post some interesting papers on shotgun metagenomics, but there is so much good stuff I thought I would just give the Google link where people can sift through the stuff for themselves:

https://www.google.co.uk/?gfe_rd=cr...ssl#q=shotgun+metagenomics+infectious+disease
 
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Jesse2233

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@mrquasar

The company is http://www.aperiomics.com/

I think one of the problems with private testing is that the tests are very often developed by the lab themselves. This is why I have never done private lyme disease testing: I am very sceptical of the usefulness of proprietary tests that have little or no evidence supporting their accuracy.

Shotgun metagenomics using next generation sequencing (NGS), on the other hand, has a good deal of evidence supporting its use in pathogen discovery. There is a lot of literature on it. The technology is quite versatile; you can also sequence the human genome or the gut microbiome with it - uBiome uses shotgun metagenomics in their gut microbiome testing.

Edit: I was going to post some interesting papers on shotgun metagenomics, but there is so much good stuff I thought I would just give the Google link where people can sift through the stuff for themselves:

https://www.google.co.uk/?gfe_rd=cr&ei=z6n3WMTcHeXGXobkuoAG&gws_rd=ssl#q=shotgun metagenomics infectious disease
Did they give you info on cost / timeframe?
 

Cheesus

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@Jesse2233

Yes, it is going to cost me about $1600. I do not know the timeframe yet. I have sent various papers on shotgun metagenomics to my GP and I need to wait for him to get back to me before I can order it, but he is away for the next two weeks. I will ask when I put the order in.
 

Alvin2

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I'm a bit late to the party but in general there is not much harm in trying to figure it out ourselves and people have tried like crazy, but so far we don't even have a disease mechanism to work with. That said the OMF is chasing this like a rabid dog and they have technology we do not and experts who have Nobel prizes in medicine so i think we are in good hands.

I've had to step back because of my cognitive deterioration but i am more hopeful then i was a few years ago because i have read what Dr Davis has come up with and they are the best at what they do. In another thread i said something to the effect of how can we do better with less research tools and less resources but once we know the disease mechanism our experience and knowledge will help us contribute. To be honest i think of right now as holding on (for dear life) until we receive data we can crunch.
 
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I should have the results by the end of this week. Prod me then and I will be able to tell you about how the results are uninterpretable and I have no way of determining causality ;)
@Cheesus , prod prod...I think you mentioned on another thread some weird bacteria was in your blood that comes from Cicadian ovaries. Were there any other interesting and/or actionable findings?
 

Cheesus

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@Cheesus , prod prod...I think you mentioned on another thread some weird bacteria was in your blood that comes from Cicadian ovaries. Were there any other interesting and/or actionable findings?
Yes, I have the results, but they're uninterpretable and I have no way of determining causality :D

Seriously though. I actually have no real idea what I am looking at. I have bacteria in there that have basically 0 science and are little more than a classification. They might be making me sick, but there is no way to know.

I am speaking to the lab tomorrow to discuss the results. It's not a clinical assessment but I will grill them on the findings to see what I can glean.
 
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bspg

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This is something I would love to do but finding a doctor who is willing to listen to suggestions and actually order the tests is extremely difficult.

I can understand a doctor's resistance to take orders from a patient -- it could be dangerous and is insulting to a doctor's knowledge and abilities.

But when you're a patient who has researched your symptoms for many years and have crafted a reasonable hypothesis of what might be going wrong, it's extremely frustrating to be shot down, ignored, or even condemned by doctors who spend all of 5 minutes with you.

If a patient is suffering and the hypothesis is reasonable, what's the harm in testing?