bensmith
Senior Member
- Messages
- 1,547
I started with the same and after i didnt work moved on to more aggressive approach.
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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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Yes. Why, yes, it would.actual data would be nice
Yeah. Uhhhh, no. Beyond a few limited research studies relating to recovering from the often devastating effects of chemo, quite a few of which are strong mimics of some ME factors, no tests done in the same modality would be taken seriously.does this work for cancer research? questionaries about opinions?
I thought you were posting in these threads well before the COVID outbreak and your subsequent infection?Temporary me basically. Dunno
Why i became me
And they recovered.
.....Yes i am praying that all of their revoeries are temporary, or we are fucked.
I'm with @Martin aka paused||M.E. on this one. More power to them, and rock on !!!!We are fucked in any case. So I wish them the very best
Extremely good point, and cogent !!!!We still need to consider that ME seems to land on about 1-2% of the populatoin. So maybe only 1-2% of the long haulers, end up with actual persistent non-recovery.
That's actually very depressing even though I feel guilty for feeling that. But it is survival. The focus on long covid is garnering awareness and validation for ME, medical education, as well as indirect and supposedly direct research money. If that's in jeapardy of losing momentum due to most or even almost all of long covid people not fitting with ME anymore, it's really sad and depressing. Whatever benefits happened so far are good and much better than nothing. But if the momentum can continue, it would make such a difference.Dude honestly just healing. Most people are like 95 percent recovered or more. And many had pretty bad me for a time.
the few left don’t seem to have pem. Strangly even the ones who did initially.
But isn't it something like 1-2% of people with covid are getting long covid? Maybe it's more. At that point, it would be 1-2% of the 1-2%. Unless it's estimated to be a bigger percentage of covid infected getting long covid.We still need to consider that ME seems to land on about 1-2% of the populatoin. So maybe only 1-2% of the long haulers, end up with actual persistent non-recovery.
And while some people maybe got severe quickly- there is the longer trajectory- I don't believe I had classic PEM during my decades of "mild" ME.
I don't want anyone else to suffer with ME ideally, so if could put a wish into the universe for an outcome it would be that there's not a huge influx people's with their health destroyed, but we get all the benefits regardless. Sigh. .
But isn't it something like 1-2% of people with covid are getting long covid? Maybe it's more. At that point, it would be 1-2% of the 1-2%. Unless it's estimated to be a bigger percentage of covid infected getting long covid.
well, FINE THEN I have to actually look something up
This link:
https://www.webmd.com/lung/news/20210429/cdc-to-issue-guidelines-as-long-haul-covid-numbers-rise
SAYS: about 10% of COVID victims are showing long haul symptoms
Francis Collins is described as saying: (so I assume this is for the US only)
National Institutes of Health Director Francis Collins, MD, who also testified at the hearing, estimated as many as 3 million people could be left with chronic health problems after even mild COVID infections.