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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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its over...

why are we supposed to run around and tell everyone that we have MECFS?

because its over.

mecfs is covid-long.

whatever virus...
whatever parasites...
does it matter?

they all cause the immune system to some sort of overdrive.
genetically directed.

mecfs is no disease on its own. i think.
even if we share some similarities, they may be never sufficient to find "one" treatment.
due to genetic differences and outcomes of the individual predominant infections.

covid ran much too similar in so many aspects for me.
what a shocker.

im glad. (sorry for everyone affected/infected).
now research will start.
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Comments

YippeeKi YOW !!
"now research will start."

I think pretty much everyone on this site has said that at least once, some of us more than 2 or 3 times.

The outcome is always the same ..... research just doesn't happen in any meaningful amount or way. It gets canceled. It gets sidetracked. It fails at whatever loopy proof it was trying for. It can't be replicated. It can't be funded. It doesn't stick to the basic rules for decent research and is rejected out of hand.

So I wouldn't wait standing up for this one, either, altho I have to admit, long-haul COVID has a better chance than anything that's come before ....

As you pointed out and as so many of us have also said, this is not a one-size-fits-all kind of illness, and it's 'cure' isn't going to be either. At least as far as we've all seen up to this point .....
 
gbells
I disagree. To cure ME you have to identify the cause of it. If you only focus on effects the best you can get is symptom treatment without real improvement.
 
YippeeKi YOW !!
gbells said:
I disagree. To cure ME you have to identify the cause of it. If you only focus on effects the best you can get is symptom treatment without real improvement.
Click to expand...
I wasnt implying that, sorry it wasnt clear .... just that whatever the zero-ground cause is, it has a different effect on all of us and the resulting 'cure' will have to take that into account .... not unlike the diff between 'measles' and 'German measles', tho that may fall short as a descriptor in its simplicity ....

You yourself noted this issue:

"mecfs is no disease on its own. i think.
even if we share some similarities, they may be never sufficient to find "one" treatment.
due to genetic differences and outcomes of the individual predominant infections."
 
gbells
I think there are definitely shared diseases that all cause the same ME presentation but we still have to address them differently.
 
YippeeKi YOW !!
"I think there are definitely shared diseases that all cause the same ME presentation but we still have to address them differently."

Which is what I said.

Then you posted your "...I disagree..." comment, and now I'm totally not sure about what you were disagreeing with ?!!?!??....
gbells said:
I disagree. To cure ME you have to identify the cause of it. If you only focus on effects the best you can get is symptom treatment without real improvement.
Click to expand...
 
kurt
I've had both, they are similar but not the same. I recovered from long covid after about 5 months, but then got it back again. A few different symptoms than I had from ME/CFS.

I think the jury is still out on what either disease is about. Yes we have a more clear trigger with covid. And eventually some long covid cases will probably become the ME/CFS identity. But the details are still unclear.
 

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