How Many ME/CFS-related Tests have you done? (POLL)

[sometexan84]

Seeing another poll made me want to create my own!

So, something like a Complete Blood Panel, I'd count as (1) test.

Something like testing for multiple types of Echovirus and multiple types of Coxsackie B, I'd count as (2) tests.

Stuff like, Sleep Tests, disease diagnosis, an MRI, a MicroNutrient Test, an ultrasound, an infectious disease test, a CRP, immunoglobulin levels, etc, would all be (1) test each.

As long as it relates to your ME/CFS condition, it counts. And I promise, I really do think this has relevance. For example, I've done just over 30. And I believe I'll need another 10 or 15 tests at least, and I mean new tests, not re-testing.

So I'm very curious as to the amount of testing others are doing.

 

[KaitIsTired]

I have only done an MRI. If symptoms persist I will have a different test.

 

[pamojja]

something like a Complete Blood Panel, I'd count as (1) test. ..Stuff like, Sleep Tests, disease diagnosis, an MRI, a MicroNutrient Test, an ultrasound, an infectious disease test, a CRP, immunoglobulin levels, etc, would all be (1) test each.

Too much work to count for me. If I do a 'number count' of my spreeadsheet containing all test-results for the last 11 years, it comes back above 2500. Diagnosis, MRI, x-rays and sleep test not included. However, 8 HTMAs containing about 50 datapoints each. 40 CBCs. Therefore still certainly much more than 50.

 

[Wishful]

It would be zero for ME-specific tests. Your poll isn't clear about general medical tests to figure out whether it was something else.

 

[Booble]

Zero for me as well.

 

[Wishful]

What this poll is missing is: "and the test results led me to a treatment that made a major improvement in my quality of life". "All these tests resulted in curing my ME" would also be a good addition, but I'm not sure that there would be any boxes checked.

The question is: is doing extensive testing worth the effort for a typical PWME?

 

[sometexan84]

It would be zero for ME-specific tests. Your poll isn't clear about general medical tests to figure out whether it was something else.

Oh, come on now. Don't be difficult man. You know what i mean. Don't overanalyze it, it's not a scientific study. Just an informal little poll.

I made it super simple on purpose. I figured most people would just guess, w/out counting each thing.

I didn't think listing a novel of specific guidelines would have much impact on the results. Not worth it. I mean I added some helpful examples, but decided anything more would be kind of overkill.

But, to your comment, I mean it's up to you. For me, I did a Sleep Test way before CFS diagnosis. Along w/ a bunch of others when I didn't know what was going on. And so I'd def count that as (1) test, as it was very much related to my condition (even though I didn't know what my condition was at the time.)

What this poll is missing is: "and the test results led me to a treatment that made a major improvement in my quality of life". "All these tests resulted in curing my ME" would also be a good addition, but I'm not sure that there would be any boxes checked.

Idk. Just felt like going w/ a simple approach on this one. Make a New Poll, I'll come give my feedback. And I will not judge your Poll Creation abilities.

 

[sometexan84]

Here is more info about me, and my case, my condition. Some key facts for reference, which sort of shows my thought process in why I made this poll

• My CFS was mild to begin with

• I'm 90%-95% to full recovery, so very close

• I've had 30+ tests done related to this, including initial tests when I was just trying to figure out what the heck was going on

• Since my goal is to be 100% and no relapse, I still have a bunch of tests documented in my notes I haven't done yet (not counting re-tests to see if titers have dropped, or fatigue biomarkers)

• Tests have been pretty purposeful. So, I haven't been just taking random tests

It has taken me this many tests to be able to successfully diagnose, treat, and cure my CFS. And again, I was "Mild" to begin with (compared to others around here). I did the bulk of my research, diagnosis, documentation, and treatment in just the past 3-4 months. And in that time, I've gone from having my CFS at it's absolute worst, to almost complete recovery. In just a handful of months.

That would have been impossible had I not sought out all the testing I did. So from my perspective, those that have a goal of getting all the way back to 100% energy, like FULL recovery, will likely end up needing 40, 50 tests at least when all is said and done.

I actually see the majority vote right now is 50+, haha, yea right on! I was not expecting that.

 

[Wishful]

@sometexan84 , would you be wiling to write up at least some of which tests you did that led to successful treatment of whichever symptoms? That would be interesting. I'm wondering whether you're treating multiple downstream symptoms (but leaving the core dysfunction unchanged) or whether you're treating downstream dysfunctions that feed back into the core dysfunction.

 

[Rufous McKinney]

I actually see the majority vote right now is 50+, haha, yea right on! I was not expecting that.

I wonder if those who got 50 or more tests, are happier than the less than 5 group?

a much larger sample size would be helpful! Is everybody else on Vacation?

I'd like to know which of these tests led you to- the improvements your now enjoying! I am currently 8 months in arrears for blood work, followup tests, go see this neurologist.

 

[Learner1]

The question is: is doing extensive testing worth the effort for a typical PWME?

Yes. Then you find what's the matter and have an opportunity to fix it.

That would have been impossible had I not sought out all the testing I did. So from my perspective, those that have a goal of getting all the way back to 100% energy, like FULL recovery, will likely end up needing 40, 50 tests at least when all is said and done.

It has taken me this many tests to be able to successfully diagnose, treat, and cure my CFS. And again, I was "Mild" to begin with (compared to others around here). I did the bulk of my research, diagnosis, documentation, and treatment in just the past 3-4 months. And in that time, I've gone from having my CFS at it's absolute worst, to almost complete recovery. In just a handful of months.

After extensive testing over the past 5 years, I now have a pretty good idea of both the genetic and environmental factors leading me into this illness, and finding Interventions that have either improved or resolved these various problems. I do not think that my situation was simplistic enough to be fixable within 3 to 4 months. Researchers have found that there are different subsets of patients with different triggers, genetics, disease characteristics, and environmental factors that promote our disease.

Applying individualized/personalized medicine, in many cases iteratively, can provide a path out.

Sounds like you've been extremely lucky.

wonder if those who got 50 or more tests, are happier than the less than 5 group?

The right 50 tests which identify treatable problems and inform treatment in a timely manner, with helpful doctors willing to prescribe the indicated treatments and being able to afford treatment will lead to a happier patient.

Unfortunately, access to tests, doctors, treatments, and the finances to pay for them can make this challenging.

 

[Sushi]

I actually see the majority vote right now is 50+, haha, yea right on! I was not expecting that.

I’d guess that some of us who have done more than 50 tests are moderate to severe and have been ill for decades. While testing can lead to some helpful treatments (and for me some have) for many they definitely did not lead to a cure!

 

[sometexan84]

would you be wiling to write up at least some of which tests you did that led to successful treatment of whichever symptoms? That would be interesting. I'm wondering whether you're treating multiple downstream symptoms (but leaving the core dysfunction unchanged) or whether you're treating downstream dysfunctions that feed back into the core dysfunction.

Yes, of course! That's been my plan all along. It will all be included in my Recovery Story, along w/ all the personal notes I have and things I've learned along that way.

My efforts have been geared towards fixing all the root (core dysfunction) problems.

 

[sometexan84]

After extensive testing over the past 5 years, I now have a pretty good idea of both the genetic and environmental factors leading me into this illness, and finding Interventions that have either improved or resolved these various problems. I do not think that my situation was simplistic enough to be fixable within 3 to 4 months. Researchers have found that there are different subsets of patients with different triggers, genetics, disease characteristics, and environmental factors that promote our disease.

Applying individualized/personalized medicine, in many cases iteratively, can provide a path out.

Sounds like you've been extremely lucky.

Ouch!

I can attest to some luck involved. Sure.

Does trying to bring others down make you feel any better about your situation? You're not helping yourself, me, or anyone else here w/ comments like that. Are you 7 yrs old? My son is, and you sound like him. Boo hoo, life isn't fair. Some people are smarter than you, get over it.

I'm sharing things in an attempt to help others. This isn't a competition.

 

[sometexan84]

I wonder if those who got 50 or more tests, are happier than the less than 5 group?

I can't say, I haven't reached 50 tests.

Prob worth remembering that some w/ 50+ tests under their belt could very well be severe, long time, ME/CFS sufferers.

All I can do is speak for myself. And I'll be 100% happy when I'm 100% cured. However many tests I'll have taken by the end, well, it is what it is.

I'd like to know which of these tests led you to- the improvements your now enjoying!

All these types of details I will surely include in my recovery story write-up.

 

[Wishful]

Does trying to bring others down make you feel any better about your situation?

I didn't get the impression that Learner1 was belittling your success. I think he was just pointing out that his progress was much slower than yours, and that simply getting 50 tests does not guarantee a cure, or even major improvements within a couple of months. Some might do a few tests and be directed to treatments that make a major improvement within days: that would certainly fit into the category of "lucky". Some might do 50 tests and do all the suggested treatments and find little or no benefit: category "unlucky". Part of the luck factor might be easily-diagnosed and treated comorbid diseases/conditions. A person might be "lucky" to have a hidden chronic bacterial infection that makes their ME symptoms worse, or a problem with absorbing a specific nutrient. Such people would benefit from exhaustive testing, but we don't know how many PWME fit in that category.

Maybe your poll and recovery story details will result in a lot of people here doing more tests. Then we can do another poll to see how effective that is in general. It would be great if there are a couple of tests that turn out to help 45% of PWME, or whatever the numbers are.

 

[Wishful]

Yes. Then you find what's the matter and have an opportunity to fix it.

That should be "Maybe you find out something that's the matter". It would be nice if this poll led to some real numbers on how likely it is that exhaustive testing will provide significant benefits for PWME. Some people will find major benefits from testing, but it's also true that someone wins a lottery. One person winning a lottery doesn't mean that everyone will be a big winner by buying a ticket. I haven't seen enough cases here yet to convince me that genetic testing or whatever is really worth bothering to try. I don't buy lottery tickets either.

 

[heapsreal]

Crap loads. Significant tests that showed something.

Cmv igg positive and somehow Ive only been able to get one cmv titre test and igg titres above range.

Ebv igg positive, yrs later igg neg???

Shingles

Netrophils multiple tests generally moderately low.

Total and lymphocyte subsets mostly high

Nk function low

Nk bright cell function low

Low dhea

Low total and free testosterone

Sleep study to rule out sleep apnea but didnt sleep lol.


Ive done other tests that didn't show anything abnormal such as lyme, imunoglobulin subsets etc.

 

[Wishful]

Sleep study to rule out sleep apnea but didnt sleep lol.

"We're going to stick you in an unfamiliar bed in an unfamiliar room and attach various invasive gadgets to measure how well you sleep. Have a nice night! "

 

[heapsreal]

Crap loads. Significant tests that showed something.

Cmv igg positive and somehow Ive only been able to get one cmv titre test and igg titres above range.

Ebv igg positive, yrs later igg neg???

Shingles

Netrophils multiple tests generally moderately low.

Total and lymphocyte subsets mostly high

Nk function low

Nk bright cell function low

Low dhea

Low total and free testosterone

Sleep study to rule out sleep apnea but didnt sleep lol.


Ive done other tests that didn't show anything abnormal such as lyme, imunoglobulin subsets etc.

My nk function and nk bright cell function testing was cfsme specific as it was a cfsme study through griffith university in Australia. Testing was done every 6 months over an 18 month period. The outcome of the study was that low nk function and bright cells were commonly low in those who met the criteria for cfsme.