Disease poll

What disease do you have?

  • Real true ME as per Melvin Ramsey and Canadian Consensus Criteria CCC

    Votes: 10 66.7%
  • CFS as per Oxford and CDC criteria

    Votes: 4 26.7%
  • I have no idea which of the two I have and I do not care but it is one of them

    Votes: 3 20.0%
  • I have no idea which of the two I have but I would like to know which one exactly

    Votes: 2 13.3%
  • I really understand that I do not have Ramsey ME nor CFS per CDC and Oxford Criteria

    Votes: 1 6.7%
  • I probably am misdiagnosed with Ramsey CCC ME but in fact I have Oxford CDC CFS

    Votes: 1 6.7%
  • my persistent immune system problems may have been wrongly labelled Ramsey CCC ME or Oxford CDC CFS

    Votes: 1 6.7%
  • Probably have Ramsey CCC ME but fighting to get it correctly diagnosed/treated

    Votes: 1 6.7%
  • I have lyme and ccc ramsey ME

    Votes: 2 13.3%
  • i have autism and ccc ramsey ME

    Votes: 1 6.7%
  • i have lyme or autism that drags on despite antivirals n antibiotics

    Votes: 1 6.7%
  • i have lyme or autism but dont think I also have ccc ramsey ME

    Votes: 1 6.7%
  • i think i have a completely different neuro or immune disease and not me cfs lyme or autism

    Votes: 1 6.7%
  • a very bad lingering viral infection but not ME

    Votes: 1 6.7%
  • a bit of this a bit of that something blue nothing new

    Votes: 1 6.7%

  • Total voters
    15
  • Poll closed .

weyland

Well-Known Member
I guess I just don't care. By the time they figure it out I'll be long gone. And even when they figure it out it'll be years before it works its way into mainstream medicine. IMO
I totally understand where you're coming from.

For me, I find Ramsay's description of the disease personally important because it perfectly reflected my onset and symptoms. When you have acute onset ME, you will likely not see yourself in the CDC criteria. The terrifying symptoms you have aren't even listed there. Eventually as you work your way into the CFS world you will believe that ME is just what the rest of the world calls CFS, you won't realize that the onset and symptom patterns are totally different.

I also find the British description of the disease important because the persistent enterovirus hypothesis represents the zenith of British biomedical ME research. This is exactly what was found in me and has been the only thing that led to a course of treatment that provides symptom improvement.
 

Who Me?

Well-Known Member
Glad you got some help. Definitions are worthless if you don't have any who is interested in helping in the first place.
 

weyland

Well-Known Member
Glad you got some help. Definitions are worthless if you don't have any who is interested in helping in the first place.
Very true. If I wasn't lucky enough to live in a state with 3 of the top experts I would be completely screwed.
 
E

EYAKLLE

Guest
I guess I just don't care. By the time they figure it out I'll be long gone. And even when they figure it out it'll be years before it works its way into mainstream medicine. IMO

The most and best help I've gotten is from people on forums who don't care about definitions or who said what and when.

You had said you weren't around in 2009 with the XMRV mess. I was. I remember people were running around falling all over themselves getting tested.

I sat back and watched, thinking why rush to get tested, spend that money when there is no treatment? And then it all hit the fan and those that pinned all their hopes on it were devastated. I escaped unscathed.

I never have and won't pin all my hopes on just one thing. It makes no sense. I could care less about a definition. T In the mean time I'll listen to smart people on the forums. They've been more help than any doctor I've seen. Dr Vincent so far is the exception.
Mikovits told Whittemore to stop the test until it was refined. But he didnt. Judy refused to take any part like that. He fired her
 
E

EYAKLLE

Guest
I totally understand where you're coming from.

For me, I find Ramsay's description of the disease personally important because it perfectly reflected my onset and symptoms. When you have acute onset ME, you will likely not see yourself in the CDC criteria. The terrifying symptoms you have aren't even listed there. Eventually as you work your way into the CFS world you will believe that ME is just what the rest of the world calls CFS, you won't realize that the onset and symptom patterns are totally different.

I also find the British description of the disease important because the persistent enterovirus hypothesis represents the zenith of British biomedical ME research. This is exactly what was found in me and has been the only thing that led to a course of treatment that provides symptom improvement.

the rv could be caught if the enterovirus reduces immunity. Same in hiv
 

Justin

Active Member
I totally understand where you're coming from.

For me, I find Ramsay's description of the disease personally important because it perfectly reflected my onset and symptoms. When you have acute onset ME, you will likely not see yourself in the CDC criteria. The terrifying symptoms you have aren't even listed there. Eventually as you work your way into the CFS world you will believe that ME is just what the rest of the world calls CFS, you won't realize that the onset and symptom patterns are totally different.

I also find the British description of the disease important because the persistent enterovirus hypothesis represents the zenith of British biomedical ME research. This is exactly what was found in me and has been the only thing that led to a course of treatment that provides symptom improvement.

What treatment are you referring too?
 

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