Yes but I did not read which ones . They are holding out on the info!
Everyone is only showing an abstract
Or theory !
Results of the largest ever study into the Genetics of me/cfs.
- Thread starter andyguitar
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Everyone is only showing an abstract
Or theory !
southwestforests
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That is sad.
For what is supposedly a documentable science there are an awful lot of belief-based decisions and attitudes in medicine and health care.
It is sad very sad.
I had one Dr out of 12 that said my condition sounded like long covid , but he could not do anything , he even left that out of his after visit summary notes so he would have denialability.
That's Life !
southwestforests
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Just came across a Tumblr post from July from someone who can very much relate to that,
Hi
I can relate and I hate to hear everyone is having health issues here.
And everywhere.
It is Sad.
I been rude to a few Doctors , it dont make me feel good being rude.
Everyone here is very Passionate
On thier health and helping others.
And sometimes we just crack!
I can say most of my Dr's help me with thier notes by adding things that may help me latter down the line.
A few Dr's have told me We just have to play the game and just be smarter.
And a few couldnt back up what they say on Record.
I dont see them any more, actually dropped one today. Lol
andyguitar
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You need a new Doc. I suggest trying Hunter-Hopkins in Charlotte NC, they know about me/cfs. Starting the process of getting disability should be a priority for you. You will need medical evidence for that.
The best one is Genome Wide Sequencing -GWS. Ballpark cost $1500-$2000. It wont give you cure and you dont need it to get benefits or decide on what treatment to have. So maybe save your money for the probable cost of getting a diagnosis from a me/cfs specialist. Insurance does not always cover all the cost for that.
The paper I posted at the start of the thread is about 46 pages long. Did you download it all ok?
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When your doc doesn't believe CFS/ME exists, or when your doc writes notes like this that directly contradict reality or what was discussed, it's time to fire that doctor and move on to a better one. Even if it costs you; patients deserve better than this. Period.
Glad to read that tumblr poster found a new doc.
Hi
Would I need a Dr referral?
Would this at least rule out some possible ailments ?
The paper I posted at the start of the thread is about 46 pages long. Did you download it all ok?
Where I use to be able to spend hours designing electrical schematics and electrical panel designs and Mechanical engineering on Cad.
I dont have the focus power to read much!
I can barely reply to post in less than 30 minutes.
I just cant focus for long, or type coherent sentences!
And my spelling is terrible.
And this comes from someone who took both Electrical and mechanical engineering at Ga tech at the same time.
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It’s true that ME/CFS is more common in women than in men. Estimates suggest that about 3 out of every 4 patients are women, and this could be linked to biological and vascular factors that make women more vulnerable to the condition.
One possible reason is endothelial and microcirculatory dysfunction — basically, problems with the very small blood vessels that deliver oxygen and nutrients to tissues. Studies in ME/CFS have shown reduced ability to widen blood vessels and increase blood flow during activity.
In cardiology, we know that women more often experience ischemia without blocked coronary arteries (INOCA) and microvascular angina — heart problems that aren’t caused by big blockages, but by the tiny vessels not working properly.
Hormonal changes may play a role here. Estrogen normally helps blood vessels stay flexible and promotes nitric oxide production. When estrogen levels drop or fluctuate (menstrual cycle, postpartum, menopause), endothelial function can get worse, which may increase the risk of microvascular issues.
Since ME/CFS shows similar vascular problems, this higher microvascular susceptibility in women could be one reason why the illness affects them more often.
One possible reason is endothelial and microcirculatory dysfunction — basically, problems with the very small blood vessels that deliver oxygen and nutrients to tissues. Studies in ME/CFS have shown reduced ability to widen blood vessels and increase blood flow during activity.
In cardiology, we know that women more often experience ischemia without blocked coronary arteries (INOCA) and microvascular angina — heart problems that aren’t caused by big blockages, but by the tiny vessels not working properly.
Hormonal changes may play a role here. Estrogen normally helps blood vessels stay flexible and promotes nitric oxide production. When estrogen levels drop or fluctuate (menstrual cycle, postpartum, menopause), endothelial function can get worse, which may increase the risk of microvascular issues.
Since ME/CFS shows similar vascular problems, this higher microvascular susceptibility in women could be one reason why the illness affects them more often.
Me too
I can understand Doctors could be affraid of loseing thier jobs because they are not following the staus quo
Set by thier organization , they have to follow standard procedures that have established test to confirm a condition Regardless of thier oath .
I have been in that situation also in past management roles, they are not easy decisions to make.
I would bet if a test came out to correctly identify long covid and Me/Cfs a lot of Doctors would change thier Responses Immediately.
You know once a Dr bucks the medical system and gets fired their carreer is over every where!
And a lot of Doctors are jerks also.
andyguitar
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Yes and they are BTN 2A2, OLFMA, and RABGAP1L. None of the genes known to have a significant relationship to autoimmunity show up. Only BTN 2A2 gets a mention in any research I can find about autoimmunity and as it is on it's own in this research to my mind that rules out me/cfs as being an autoimmune disease. Will put a snippet about BTN 2A2 below.
Nope just give tham a call.
It would certainly go some way to doing that, but not all diseases are just about genetics.
andyguitar
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BTN 2A2.......
Thanks
I looked up the place and they are closed , so I will contact them on Monday after my two appointments.
Thanks again
Looking back in my medical records someone asked me about I came across this
Specimen Type
Value Bone Marrow
74
Summary of Findings
DNA Alterations Identified:
Gene AA Change Mutant Allele
Frequency (%)
DNMT3A p. (W893S)
No gene fusions detected.
The Cancer center did not have a concern though.
andyguitar
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This does not seem to be a gene that is part of me/cfs.
wabi-sabi
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The T cell stuff sounds really interesting! I keep hearing ME/CFS researchers talking about T cell exhaustion, so I wonder if this is related to that.
andyguitar
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Yeah it is. The correct balance between T Effector cells (they kill pathogens) and T- Reg cells needs to be maintained, and from what I've seen so far the defect in gene BTN 2A2 could be shifting the balance in favour of T Effectors. These are powerful cells and can cause damage if out of control.
Maybe, could depend on what sort of T cells are exhausted. More digging to do.
Hi
It is the only thing that stood out in my bone marrow biopsy.
It deals with cancer detection and I did not have cancer.
sb4
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If one were to have their whole genome sequenced they could check if they had these mutations, correct?
It seems 23andme isn't thorough enough.
It seems 23andme isn't thorough enough.
andyguitar
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As far as I know yes. Probably the safest bet is to use the same sequencing technique as used here. Cost is a bit stiff though, but I expect that in the future there will be further genetic research and there could spaces for volunteers to submit samples.