Marylib
Senior Member
- Messages
- 1,157
Oh - definitely. Advocacy is part of the story for sure. Hopefully advocates can keep pushing before the pushing itself makes them so ill that they can no longer function.
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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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I guess some people think that long covid may distract from me/cfs but I think they have enough overlap if you solve one you dolve the other.I don't have the brain cells to read all these long and detailed comments but I do understand the emotional reactions of people with ME who feel like dog shit because so much money is suddenly going to Long Covid. If the shoe were on the other foot, you would want that money spent on Long Covid too. At this point, it's just another name for a disaster we know all too well. Perhaps some with Long Covid can recover faster if they know what ME is, because they will already know you cannot push through it. I hope so. Some of those people in the first covid wave had no idea what hit them. This is likewise true of those who ended up with a shit storm from the vaccines. Human beings are social creatures and we need each other's good will to get well, or at least improve enough to get off the ledge from suicide.
Dude you're worried about the wrong thingMy complaints mainly come from trumpets and fanfare surrounding a painfully slowly trickled $1 billion to study a debilitating illness affecting millions of Americans, and the casual manner we throw $40 billion into escalating a war (I think we're already looking at raising that to $55 billion
Military industrial funding is not really something that will be opposed by any number of people in numbers enough that it will change. So it's not as if it's plausible that there's a zero sum game we can play to take funding that would go to Ukraine and put it in nih funding. Morally I agree with you but it makes no sense pragmatically. Most military spending packages especially for things that are billed as humanitarian interventions are just going to pass with a few protest votes and nearly unanimous congre3ssional backing.My complaints mainly come from trumpets and fanfare surrounding a painfully slowly trickled $1 billion to study a debilitating illness affecting millions of Americans, and the casual manner we throw $40 billion into escalating a war (I think we're already looking at raising that to $55 billion).
But hey, it's not like the last 10 'conflicts' we escalated ended badly for the people we were supposedly helping. I say conflicts because I don't think we've technically been at war since 1945, which is likely news to the people we were bombing.
Probably shouldn't be political, but Congressional funding is somewhat of a zero sum game even though it shouldn't be. Sadly, I worry that any funding will likely go to a newly built healthcare complex rather than productive research. The same way we spent a couple trillion bringing freedom to the Middle East, but in reality just
I'm not saying what I say bc I lack criticism of the powers that be. I have a whole web project I've been working on dedicated to critique of the NIH officials screwing us over. But I've been too sick to do it. I am a staunch advocate for the kind of militant activism hiv/aids patients did that you're talking about. But they didn't just say stuff on forums that was slightly negative about the government. They said all that stuff to the bureaucrats faces and chained themselves to doors in their offices. I don't blame you if you're physically unable to do that but nothing changes unless someone does that.People often say we need to be more supportive and appreciative. I partially agree about those in research, but also feel that constructive criticism of power structures is important. HIV would not be under control today if activists didn't accuse Fauci of being a butcher, ruthlessly drag the NIH and gov't officials, and constantly advocate for better support and funding.
Because epidemiologists account for that. because Their studies and models aren't based on who has obtained a formal me/cfs diagnosis.
The CDC 1994 definition is fraudulent as it does not exclusively recruit patients who suffer an adverse reaction to exercise (real ME). 0.89% seems way too high.estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994
If there are over 100,000 misdiagnosed as having ME all claiming exercise didn't worsen their condition or even led to improvement, it's going to make us sound like delusional conspiracy theorists.
I'll always wonder because I was sick this WHOLE TIME but classic PEM did not occur until a few years ago when it worsened....
so what name would I have called it, if PEM was mandatory? I have no idea. ITs been Eppstein Barr my whole life.
That's a good question. I believe there should be a separate diagnosis for those who suffer harm from exercise, I think SEID is the best available name but I am open to suggestions.so what name would I have called it, if PEM was mandatory?
That's also good.For a name, I always liked Ramsay's Disease.
I think SEID is the best available name but I am open to suggestions.
I'll always wonder because I was sick this WHOLE TIME but classic PEM did not occur until a few years ago when it worsened....
so what name would I have called it, if PEM was mandatory? I have no idea. ITs been Eppstein Barr my whole life.
So for multiple early years I didn't appear to have PEM, it wasn't until they started exercise therapy I finally crashed and found out I did have PEM.
I've had PEM for around 25 years, but I was more concerned with post viral GI symptoms
"Post-Infection Illness Expert List"
…that was your takeaway here?