New immune disease?

[GracieJ]

Hanchuchu and others were saying in the thread that they have been trying to get the Chinese authorities and others to help out and media to report, but nothing was done. It even says in the article that the cases have been appearing since 2004 and the public health agencies don't bother telling anyone and the media ignores it.

So even though it is now getting media attention here somewhat, it has been ignored previously. I was a little upset when I first read the newspaper article, probably more so because this paper is in my own city. It always takes me a day or two to regroup and come back and post. So emotional. One or two hundred people? What?? And we are hundreds of thousands... it has to be under-reported or something. I have to wonder if it is "outbreaks" like this that will finally give ME/CFS and all the other variants the needed respectability to be mainstream knowledge. We are not exactly a tag-along group with our numbers.

Ironic. It is articles like this that are bringing my daughter back around to me. Always tight as could be, all her growing-up years, all through her teens, all through her 20s... then suddenly cold-shoulder. But... she is experiencing some symptoms that may be ME/CFS... maybe Mom isn't so nutty talking to her about possible sleeping viruses from over 20 years ago.

 

[Waverunner]

I think I remember from the thread Willow linked to that he (hanchuchu) and others with the disease were wasting, ie getting very thin like the woman in the article. That doesn't happen to us.

Sorry, but I wouldn't make that statement. There are enough PWCs who actually are thin and who are wasting away.
Does anyone know if there is a test for IFN-gamma antibodies. Obviously there has to be one but is it available for the public?

 

[liquid sky]

Fauci was interviewed on TV about this disease. He said no one had it in the US. I don't think that is correct . He also said they were only going to look for it in Asian people.

 

[Desdinova]

Let me guess no one will have it until it's so overwhelmingly obvious that it's here. Only looking for it in Asian people? Hum I remember another disease that only (cough cough) affected a specific group of people.... now what was it's name again?

 

[Waverunner]

Fauci was interviewed on TV about this disease. He said no one had it in the US. I don't think that is correct . He also said they were only going to look for it in Asian people.

It was also identified in people in the US with Asian descent but we will see.

 

[heapsreal]

I have read that ebv/cmv/hhv6 also avoid the immune system by doing something to interferon. Maybe as ill as theyare that herpes viruses also reactivate in them as well????

 

[acer2000]

Is it partial to any particular type of "Asian" population? Maybe its due to a contaminant in something in a particular type of Asian food? Something thats eaten in Asia, but also in the US among Asians?

I think they should check other populations as well.

 

[patient.journey]

Later they will find a pathogen as the research says "there might be a pathogen behind this" this thing is still in the beginning and a lot of people are waiting and am a one of them maybe finally i will have some answers ..
http://forums.phoenixrising.me/index.php?threads/is-it-a-new-disease-or-its-cfs.19062/

 

[Ocean]

Because they found something? No one has found antibodies like that in CFS patients. And I haven't even had a cold in 4 years much less any other kind of infection. So either part of my immune system is working in overdrive, or I get colds, but my body is already reacting in that way, so I don't get (additional) symptoms from colds. Or something along those lines, either way there is some connection between CFS and not getting sick for me. I know many others are in this same camp, and others get sick all the time.

I'm in the opposite camp, catching everything and not being able to fight anything off, and getting sick longer and worse than others who get the same illness. How do I get into the other camp?

 

[SOC]

I'm in the opposite camp, catching everything and not being able to fight anything off, and getting sick longer and worse than others who get the same illness. How do I get into the other camp?

Don't ya wish? I was never in the Catch Nothing camp. I've been more susceptible than most to infections for as long as I can remember.

Best I can suggest is antivirals -- Valcyte for preference, imo. I used to catch everything, but that has been much less true since we knocked down my active HHV-6 infection. I suspect that the HHV-6 infection had my immune system so worn out (or occupied) that it couldn't deal with the other infections I was exposed to. We're still fighting EBV, but it doesn't seem to be causing me as much trouble as the HHV-6. I certainly don't catch everything anymore.

 

[max_yazhbin]

Maybe but I dont think anyone really knows if the immune system is weak or overreacting. A solid case can be made for either one. I fit pretty well in the classic CFS defnition. Andy Kogelnik is my doctor and I have low NK cell function and high viral tiders to all the usual viruses. I also have PEM. Had Mono. etc...

I used to get 1-2 colds per year, every single year, and would get sick when a family member got sick. And my cold symptoms were always predictable. I haven't had a cold since the onset of my serious CFS symptoms 5 years ago.

Seems unlikely that this new disease is what I have.

My NK cell count is normal, no idea on the function. I have high antibodies to EBV and candida albicans (I know that is not a virus). I used to get colds and flus at least 3-4x per swim season and less often when I wasn't swimming, as I was growing up. I largely got out of getting colds/flus when I started taking Ray and Terry's Immune Formula, the company is out of business, but it contained cats claw, some vitamins, minerals, etc. Pretty neat, I suspect it trained my immune system. The irony is that I could only take it when I got sick, if I took it when I was normal (before I knew I had ME/CFS/MCS) then I'd get a flu/cold, haha. I rarely get colds/flus now