sb4
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Yeah it looks upwards of £300. You'd be looking at contributing to research to get it for free.
Results of the largest ever study into the Genetics of me/cfs.
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andyguitar
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Only seen 1 gene in the top 30 of suspects, its KLHL 20. Autism is a very complex thing about which I know little but I doubt this genetic signal indicates any relationship with me/cfs. Bit about KLHL 20 here.......
andyguitar
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If that includes an interpretation of the results it looks like a good investment.
Not sure how you go about it in the USA- I'm from UK- but your Doctor should know how to get it done.
That's very doubtful they will know!
How did you know about theHunter-Hopkins in Charlotte NC ?
With you being in the UK?
Have you heard good news about them?
Thanks
cfs since 1998
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They used ancestry matching. No reason to make them 1:1 in a large study. There should be at least as many healthy controls as ill subjects, there can be more, just not less.
andyguitar
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They should know something as genetic testing is done quite often these days.
They have been mentioned on this website before. Some good comments about them some not so good, but nothing terrible! Thing is that there are not many clinics that cover me/cfs so they are probably your best bet in your area.
joshualevy
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I don't understand why anyone would do genetic testing based on the results of this study. There is nothing here for patients. The result was that there were 6 to 8 places where there was a genetic difference statistically correlated with ME/CFS, out of 10s of thousands where they looked. None of these 6 to 8 places was a biomarker for ME/CFS (just a statistical correlation), no group of them was a biomarker, and the number of matches was not a biomarker. Looking at this result right now, there is nothing here.
The only thing that should happen based on this study, is that researchers should look into those 6 to 8 places to see if any of them can eventually be used as a biomarker (maybe with more or different data), or if any of them actually is involved in the ME/CFS disease process. (Probably not, and certainly not all the time, but we don't have any good leads on ME/CFS and we must start somewhere.)
My question for anyone getting genetic tests for these 6 to 8 locations: what would you do if you found you had the ME/CFS variant for one of these locations? Or for half of them? Or for all of them? Or for none of them? They don't tell you you have a disease, or you don't have a disease. (Besides, you already know you have the disease.) There is no known link from any of these genes to any symptom or treatment for ME/CFS. There is just nothing to be done, except wait for more research.
(Added note: because none of these genetic differences are diagnostic biomarkers, just statistical correlations, they do not prove that ME/CFS is a genetically based disease. Not without more research which actually ties one or more of these differences to a physical process connected to ME/CFS. So this study does not provide ammunition you can take to a doubting doctor, yet.)
The only thing that should happen based on this study, is that researchers should look into those 6 to 8 places to see if any of them can eventually be used as a biomarker (maybe with more or different data), or if any of them actually is involved in the ME/CFS disease process. (Probably not, and certainly not all the time, but we don't have any good leads on ME/CFS and we must start somewhere.)
My question for anyone getting genetic tests for these 6 to 8 locations: what would you do if you found you had the ME/CFS variant for one of these locations? Or for half of them? Or for all of them? Or for none of them? They don't tell you you have a disease, or you don't have a disease. (Besides, you already know you have the disease.) There is no known link from any of these genes to any symptom or treatment for ME/CFS. There is just nothing to be done, except wait for more research.
(Added note: because none of these genetic differences are diagnostic biomarkers, just statistical correlations, they do not prove that ME/CFS is a genetically based disease. Not without more research which actually ties one or more of these differences to a physical process connected to ME/CFS. So this study does not provide ammunition you can take to a doubting doctor, yet.)
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tyson oberle
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Not only problems with endothelial and microcirculatory with the very small blood vessels (capillaries) but actually less capillaries than what's normal. Many people with long covid and probably a subset of ME/CFS people have very low capillary density. And yes it's mostly the capillaries that directly deliver the oxygen and nutrients (not the arteries or veins). If you have constant fatigue, weakness and brain fog with cold intolerance, cold hands and feet but no anemia then I would get checked for capillary density.
Hi
For me it is Hope ! I would like at least something to be found , whether it is right or wrong !
No one finding anything wrong with me in other test is disappointing at my stage.
Heck I was dissapointed when I found out I didnt have a coronary blockage.
This may sound morbid , but if I had a blockage at least I would have had an answer and something to explain my condition.
Instead of constantly being told We cant find anything!
I went from from being physicaly fit to just being a dried up flabby husk !
Hope gives a person Motivation !
No Hope doesnt give me anything.
Just my 2 cents !
I was like that at some point, keeping my fingers crossed, wanted my lab tests to finally show something. Now I am happy that there was nothing serious found. There's more hope in it. Not finding anything means there are no permanent changes and it's possible to be cured quickly, spontaneous remissions are a proof of that. We just need to know why.
Hi
I know thier is hope!
The Dr trial of 30 mg Prednisone completely cured all my symptons for almost 6 days , I felt 18 again again , No fatigue , No burning Hot feeling and I cant explain in words how I felt.
But it did not tell us where the imflamation was? Brain , an Organ?
I think the only logical place would be the brain.
I only say that because my brain had to turn off the Hot feeling and it had to increase my heart rate and create the whole body sensation causing me to feel like I had super human strength !
Like you have probably ready read , I was laying on the couch around 1 pm
And all of a sudden eneregy just rushed out all over my body!
I sat up and instantly I was cured.
Then on that 6th I had the kidney stone surgery and woke up in recovery and everything was instantly back!
That's the feeling, almost instant remission. I think inflammation is everywhere, the question is what's causing it, and it can be anywhere.
Hi
And I experienced something new this weekend.
My Son called me and told me thier ac was down and it was going to be 3 days before the ac person could show and aske if I could take look.
I told him I would and started heading his way.
I have a lot of electrical experience so I could check everything.
So I crawled all through the attic several times checking the air handler unit in thier attic.
The worked outside directly in the sun,
Found the problem , drove to get parts and installed them and got his ac going.
The strange part was as I was driving home I realized the whole time working on the ac I never once thought about my chronic fatigue or any part of it , it was like I it never existed until I thought about it again and now I had it back while I was driving and thinking about it. I did not feel worse after all I done , it was just the normal chronic fatigue.
Was it just an Adrenaline response supplying the energy ?
I dont know ! I really dont remember how an Adrenaline rush feels any more.
andyguitar
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More research will be done using these findings, this paper is just the start.
Hypoxia could be a more likley cause than inflammation.
Hi
If you are asking me about Hypoxia
I know thier are 4 different types.
I am not sure which ones I were tested for, I will have to look back through reports.
I have had at least 5 seperate tests
Done at least 3 times each.
1-pulmonary lung function where you sit in a closed plexi glass cylinder.
And blow through a straw.
2 -walk test on a track with all kind of wires and hoses hooked to me.
At my slow pace!
3 - they put a sealed Darth Vader looking helmet on me and then walk on a tread mill. I told them to doccument that I refused .
I will tell a funny story about that one.
4 - they chemically induced heart rate with a mask strapped on me to monitor lung function gasses, lying down ,this was due to what happened on test#3.
5 -ct scans yearly to monitor pulmonary nodules they found on an earlier test, they have stayed the same in 3 years
Darth Vader helmet story .
So when I went into the lab looking place, they told me I would be walking on a treadmill wearing this Darth Vader looking hood.
I told them that was going to be impossible because I needed help just to put on my clothes that morning.
They told they had to try it!
So I get all strapped up with this fancy hood thingy.
They started the treadmill and I was doing ok until the speed ramped up!
When that happened I tripped and fell down hitting my head.
Then all kinds of sirens started blaring and people showing up with stretchers !
Well I was fine but Darth Vader helmet did not make it !
It was all cracked up.
So I had to spend the next 3 hours in observation.
I did the same thing one time on a simple heart stress test.
At a different place so I pretty much new what was going to happen,
But this new treadmill looked more safer! I was wrong!
Why does people expect you to do the impossible When you have Chronic Fatigue?
Hopefully this help someone if they have to do this in the future . Be prepared for the worst case !!
Rufous McKinney
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I feel that is a common reaction. Something comes up and demands our attention, which is hard to garner. It probably is adrenaline or related type of reactions. It overrides the Sickness Behavior for a bit of time. And the AD situation, also common with us.
If the "something" arises when we are badly crashed, things could turn out badly.
And I'm describing people with ME who can get up and move around some.
Rufous McKinney
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I"d refuse.