Whether your life changed very quickly or the change was more gradual, the outcome was the same: some sort of system reset left you stuck in a chronic illness state.
Because epigenetics identifies “genetic resets” that occur as a result of meeting up with biological stressors (such as pathogens), it provides a profound opportunity to identify what may have gone wrong.
In the most comprehensive ME/CFS epigenetic study yet, researchers from the Institute for Neuroimmune Medicine find that the epigenetic changes in ME/CFS appear to have unleashed pro-inflammatory and autoimmune factors that may have contributed mightily to this disease. Find out more in the Simmaron Research Foundation sponsored blog:
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I haven’t heard much about this from anybody else, and my questions regarding it have not been answered in social media. But I presented with a positive ANA (Anti Nuclear Antibody) test result in the beginning stages of this disease. It was the beginning of the highly alarming things happening, like forgetting how to sign your name when you are checking into the doctor’s office. That’s so commonplace for me now that it doesn’t frighten me anymore. But having that kind of a test result combined with having such bizarre things happening to the way my systems worked might not be simply coincidental. And then it just went away, but the ME/CFS had become deeply entrenched and I was down to 17% of my normal level of function overnight.
It happened the same way for my child.
I can’t help but wonder if there IS an autoimmune connection here. I realize that even healthy people can have a positive ANA. But I was NOT healthy and I have not recovered, but instead have continued to decline over the past 12 years. And that’s in spite of my very best efforts of self-help, pacing my activities and cutting stressors (that were under my control) out of my life.
There has to be a reason why the first place it seems the road to diagnosis begins with is a referral to a rheumatologist. Are other people having their blood test come back with positive ANA’s, which,when combined with presenting symptoms,sets off an autoimmune disease alert in the family practitioners’ brain?
Yet, try as they might, rheumatologists are unable to find a Trace of any known autoimmune disease.
And then came the neurologist and about a year later a Psyologist & an initial diagnosis of Somatoform Disorder AKA Conversion Disorder (more commonly known as “it’s all in their head”).
Not another conversion disorder diagnosis! Darn….I have heard that antibodies can be elevated and then not. I’ve never tested positive for ANA…But there are also antibodies that most doctors don’t test for or can be only tested in research labs.
I don’t know how many people are getting ANA diagnoses. I’m sure that some are but some people with autoimmune problems don’t have them…It’s a complex area for sure.
I put your interesting comment and question on the Simmaron post – I hope that’s OK.
I was struck with deja vu when I read your description of your inability to remember how to sign your name! My journey began over 17 years ago. The positive ANA, many many odd blood results, intestinal issues. And not being able to remember how to sign a check! Needing assistance and it looking as if it was signed by a child. The thankfully few occasions where I found myself lost in a department store I had been in a hundred times. Not knowing how to find the door, not recognizing my surroundings. Having to call my husband to come into the store and find me!!
I had a rapid decline, to barely being able to walk, sleeping 20 hours a day, mumbling. It was so frightening! And as you, I have not recovered. I have become more aware, and a bit more mobile. But by no means would I consider myself on my way to being cured. Some things may have improved while so many other issues have arose with different symptoms and their own disabilities. I have always believed this must be autoimmune related. I have several autoimmune positive diseases along with others including, Lupus, Sjogrens, Crohn’s, Hypothyroid, Hashimotos, Raynaud’s, Osteoarthritis, Osteoporosis, Chronic, current, reactivated EBV, Lymphadenitis, POTS, White matter lesions in Pons and Midbrain, and CNS paralysis of large intestine resulting in total colectomy. From healthy to this in less that 18 years. What is next?
You are definitely in the autoimmune subset. Have you been given access to biologics like Etanercept or to Rituximab or other heavy duty drugs?
I had one but the autoimmune doc couldn’t decide how to interpret it. That’s what he said. He couldn’t make up his mind.
This is a long time after your comment so don’t know if you’ll see but I tested positive with ANA then not too. They did some other specific antibody tests that were negative, my c reactive protein is also a little high often and I have raised white blood cells (lymphocytes and eosophinils) and atypical lymphocytes. Lots consistent with some ongoing post viral activation that was the onset of ME for me 5 years ago. I do wonder if there is some autoimmune condition they failed to diagnose or if there’s lots still to learn about the immune system in ME.
I have positive ANA tests and symptoms which feel more like autoimmune symptoms than ME/CFS (itching/ pins and needles) as well as all the other symptoms. And I too am constantly fobbed off and thrown around between rheumatologists and then eventually sent to have CBT. One day they will work out what this all is and we will be vindicated. So angry until then…
No Cort I have not. I am one of the 20 severally ill patients in Ron Davis’s “Severally Ill Big Data Study”. I am on so many pain meds, anti-inflammatories, Thyroxine, modafinil to keep me awake, valium to relax my muscles, Zantac to try to block receptors of EBV. Add to that a mini stroke a few weeks ago. I am in a state of all drs. being uneasy about changing or trying anything different. I guess just trying to keep me alive.
Did you get your Modafanil on insurance? Mine wouldn’t pay. Can you tell me what your doc used to convince your insurer? Thank you.
I have read your all the research article and much glad for new research innovation.
Great Study. And one that is showing promise by looking at existing Autoimmune Disease studies.
A lot of money is being poured into M.S…. and if there is a huge overlap between pathogen triggered ME/CFS and AI triggered ME/CFS… this may help lead to major breakthroughs.