How preventable do you think ME is?

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I think its pretty well agreed within the ME community that genetics plays a role in the development of the illness- although how much is still unknown.

As the development of most illnesses are a combination of both genetics and environmental exposure, does anyone have any thoughts as to how much ME is preventable?

As a range of viral triggers is present in most who get ill, from EBV to the common flu, it is impossible to prevent all viruses and so does that mean it's inevitable?

Is there anyone who has ME and has successfully prevented their children or family members from developing the condition through early interventions?
 

Treeman

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I would say 0% because we don't know what causes it. However I caught covid 19 and was very ill. I was taking anti virals for herpes infections. Once the covid 19 had cleared (3 months) my ME/CFS was no worse. I can suggest the anti virals helped not allowing my ME/CFS to get worse.
 

BrightCandle

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I wouldn't assume anything about the condition until its true cause is found. So far the genetics studies have found nothing in common, DecodeME is now ridiculously late to the party and while may be the biggest smaller studies have found nothing of note. Without an understanding beyond a likely viral infection cause we just can't know how to avoid it.
 
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Can ME occur suddenly in 100% healthy man? When answer is 'yes', then the question is only about luck. When answer in 'no', then to prevent ME, people (even with genetic predisposition) without ME must fix (or keep in under control and manage) their existing health problems, so they hopefully never reach their ME trigger.

Even if trigger was viral (let's assume that viruses are inevitable), maybe it wasn't directly a virus that caused some dysfunction, but a respone to that virus, which could be avoided if your body was "ready" to the attack.

The big problem right now is that many people (I would say 95%+ of the population) doesn't even know something like ME exist. So, we live our lives without knowing that ME trigger is near. Constant stress, overexertion and abusing your body too much often precedes ME, and those things are pretty avoidable. I think a lot of ME cases can be avoided, if more people heard anything about it.
 

Wishful

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We can't prevent what we don't know how to prevent. How much does resting and eating a healthy diet after developing an infection really reduce the chances of developing ME? 50%? .000000005%? Varies from 0% to 100% depending on the individual and other circumstances? I wasn't stressed and didn't do anything I would consider unhealthy before developing ME, so if I went back in time, I have no idea how I would avoid developing ME again.
 

vision blue

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I think this is a great question and a great goal.

My mother was sick when i was growing up and it did occur to either of us that one day the very similar thing that she had would happen to me- i had boundless energy back then. Would have helped to know it could or woud it just make us paranoid and missing out on activites? I think the former, in my case anyway.

Was only relatively recently i realized that I have had mast cell activation syndrome, or something similar that doesn't have a name yet, likely my entire life. Ditto my mother. Was the last piece of the puzzle and its funny how despite so much research, things you've gotten used to from a young age (when healthy) you don't realize was actually a part ofthe picture of why you got sick later. Forest for the trees issue maybe or you can't cut your own hair issue and one of the reasons i believe each of us needs to view the symptoms as a whole in others becasue you can't do it for yourself when youre steeped in it- but i'm really digressing here.

ok, so in the context of mast cell disorder, i do indeed believe there was stuff i could have done and believe firmly i could have lead a pefectly normal life and not gotten sick had i taken precautions. In my case, it was "allergies" (now realizing of course mast cell reactions) to exentensive dental work (13 teeth , a zillion chemicals, including Dycal in every tooth, a product conttaindicated in those with sulfonamide allergy,) that triggered my ME. At first i recovered from the mystery symtpoms after 1 year, and then a few years later after the next dental work, it triggered it again and my disease was permanant and also lead to autoimmune disease).

So i think maybe for those who also have a disease that goes along with ME and occurs first, those people should be on alert that these disorders put one at higher risk for ME and can take precautions. For mcas, that would include avoid onslaught of chyemicals all at once, try out a small dose for a week to test for reactivity before letting anyone do anything, anything you do should be reversable, assemble a battery of antihistamines etc that you can tolerate and use during any avoidable exposure, don't use pesticides in garden, all indoor clearning products should be mild natural things (i.e. things you could EAT and not get sick). All these should be done from whenever when suspects one has this, often in childhood, and preferably long before getting sick. )

So i think at least in some cases, yes, people can do things to prvent getting CFS/ME
 
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I don't even bother to look when I do it. I just trim it when it gets annoying. ME makes me not care how I look.
the first time: I was far too careful and crashed later from Cut My Own Hair.

Well the next two times: forget that: just reach up, grab a chunk and WHACK.

Repeat. WHACK
 
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I got FAR FAR worse over a period of almost exactly six months. From severe stress.

So concluding a career of 29 years, working too long sick, in a state of "mild ME" (which the term mild doesn't adequately at all describe my troubles)...I found myself MANY DEGREES worse ME.

Did I get another virus? Maybe

Is there any way to know? it seems not.
 

BrightCandle

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Ron Davis has said at least once that the one common thing all people who recovered did was rest, they did not keep pushing themselves into crashes. So if ME is preventable its by resting far more deeply than any normal functioning person likely ever does taking off substantially more time off after an illness if at any point they still don't feel 100%. Our world isn't set up for that at all, with limited sick days and Bradford scores everyone is forced to work when ill and hence develop deeper problems to the point they can't work any more at some point. But that is probably the one preventative thing that we know works, but the signal strength on that isn't great or scientifically rigorous.
 

Mouse girl

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They do know that this illness has a genetic base like many illnesses, that said we can't prevent pathogens and stressors from happening, so doesn't seem preventable. Can people who know it runs in the family have a better outcome than those who had no idea, yes, possibly if they can have the means and help. that's my view on it for what it's worth. i think it's very right that not pushing is key, so those who know it runs in the family and have the means to not push, like having support, do better for sure. i did better when i had just a wee bit of support family wise and when i got on disability, my quality of life was better for sure, but i was still very ill but quality was better as i didn't push so much and had less stress.