CFS Central - Q and (no) A with CDC SCIENTISTS

gracenote

All shall be well . . .
Messages
1,537
Likes
76
Location
Santa Rosa, CA
A CDC press officer emailed Switzers and Monroes replies on Friday at 5:10 p.m. Monroe had already left for the day; Switzer for a weeks vacation. Thus, there could be no timely follow-up.
Have a good vacation Switzer. When you get back you'll have a whole lot of 'splainin' to do.
 

VillageLife

Senior Member
Messages
674
Likes
36
Location
United Kingdom
Monroe says,
Future research will benefit from the knowledge gained from the Retrovirology study


That is 100% true, we will learn to never use your methods again because they clearly didn't work lol!
 

gracenote

All shall be well . . .
Messages
1,537
Likes
76
Location
Santa Rosa, CA
Hi gracenote

I cant be the only one who finds the timing of the vacation suspicious, can I? Bye, Alex
Well, the paper did get published the Thursday before the 4th of July extended weekend after being on hold for three weeks. People are kind of distracted. Government offices and most businesses will be closed on Monday. Hmmm . . .
 

jspotila

Senior Member
Messages
1,099
Likes
778
From Ms. Kitei's article, quoting Dr. Monroe of CDC:

"This enabled us to examine sudden onset cases and those that develop gradually. The use of both types of samples in this study helped us to more precisely examine whether or not infection, such as through XMRV, might have played a role in the onset of symptoms."
This comment defies simple logic. The way to see if infection (XMRV or otherwise) plays a role in the onset of symptoms is to first look at the sudden onset group, as sudden onset is more likely to be caused by infection. Then, if there is an association between the sudden onset group and an infectious agent, then broaden the sample set to include gradual onset. I do not have a science background and even I know that Monroe's comment makes no sense.
 

Doogle

Senior Member
Messages
200
Likes
101
From Ms. Kitei's article, quoting Dr. Monroe of CDC:

"This enabled us to examine sudden onset cases and those that develop gradually. The use of both types of samples in this study helped us to more precisely examine whether or not infection, such as through XMRV, might have played a role in the onset of symptoms."
This comment defies simple logic. The way to see if infection (XMRV or otherwise) plays a role in the onset of symptoms is to first look at the sudden onset group, as sudden onset is more likely to be caused by infection. Then, if there is an association between the sudden onset group and an infectious agent, then broaden the sample set to include gradual onset. I do not have a science background and even I know that Monroe's comment makes no sense.
Additionally Monroe's premise that:
"Thus, CDC used population-based and clinic referral samples. This enabled us to examine sudden onset cases and those that develop gradually."
is flawed because the difference between population-based and clinic referred patients refers to the methodology used to gather the cohort and does not correlate with whether a patient's onset was sudden or gradual. Not only does Reeves operational definition not properly identify ME/CFS patients, Monroe's statement is simply a pile of crap. I can't believe these people think we are mushrooms. They are trying to bury us. We can't allow this travesty to continue.
 

gracenote

All shall be well . . .
Messages
1,537
Likes
76
Location
Santa Rosa, CA
. . . The way to see if infection (XMRV or otherwise) plays a role in the onset of symptoms is to first look at the sudden onset group, as sudden onset is more likely to be caused by infection. Then, if there is an association between the sudden onset group and an infectious agent, then broaden the sample set to include gradual onset. I do not have a science background and even I know that Monroe's comment makes no sense.
I question this statement: " . . . sudden onset is more likely to be caused by [XMRV] infection."

Do we know this? Do we know that XMRV would necessarily show up as sudden onset? Is there any supporting evidence for this statement? As far as I can tell, no XMRV studies have been done that show in what way XMRV first impacts human organisms, and there is no information that I've read saying there are more people testing positive for XMRV who were sudden onset than who were gradual.

I think, and please correct me if I'm wrong, that this is an assumption with no basis (yet) in fact.
 

jspotila

Senior Member
Messages
1,099
Likes
778
I question this statement: " . . . sudden onset is more likely to be caused by [XMRV] infection."

Do we know this? Do we know that XMRV would necessarily show up as sudden onset? Is there any supporting evidence for this statement? As far as I can tell, no XMRV studies have been done that show in what way XMRV first impacts human organisms, and there is no information that I've read saying there are more people testing positive for XMRV who were sudden onset than who were gradual.

I think, and please correct me if I'm wrong, that this is an assumption with no basis (yet) in fact.
You're right, Gracenote. I intentionally said sudden onset is more likely to be caused by infection, leaving out the "XMRV." It is entirely possible that XMRV infection could be dormant for awhile and have a more gradual impact on humans. No one knows for sure. I think the possibility is one of the reasons why, especially in a small sample set like this CDC study, gradual and sudden onset cohorts should be studied separately. The Canadian definition also characterizes the illness as usually having a "definite onset," yet another reason to keep the cohorts separate.

But like I said, I don't have a science background so my comments about study design should be read with that caveat.
 

CBS

Senior Member
Messages
1,513
Likes
849
I question this statement: " . . . sudden onset is more likely to be caused by [XMRV] infection."

Do we know this? Do we know that XMRV would necessarily show up as sudden onset? Is there any supporting evidence for this statement? As far as I can tell, no XMRV studies have been done that show in what way XMRV first impacts human organisms, and there is no information that I've read saying there are more people testing positive for XMRV who were sudden onset than who were gradual.

I think, and please correct me if I'm wrong, that this is an assumption with no basis (yet) in fact.
Gracenote,

I would suggest that your statement stands uncorrected!
 
Messages
1,026
Likes
146
Location
Essex, UK
And really, how DOES one define 'sudden' or 'acute' against 'gradual' onset? Of what? When exactly does one realise that what they have is not quite the run-of-the-mill but self-limiting viral illnesses that dog humanity? Do they realise 'acutely', or 'gradually'?

Another confusing way of 'sub-grouping' people.
 

SOC

Senior Member
Messages
7,849
Likes
16,349
And really, how DOES one define 'sudden' or 'acute' against 'gradual' onset? Of what? When exactly does one realise that what they have is not quite the run-of-the-mill but self-limiting viral illnesses that dog humanity? Do they realise 'acutely', or 'gradually'?

Another confusing way of 'sub-grouping' people.
I, for one, was a remarkably sudden onset case. Long before anyone even thought about ME/CFS, we were all puzzled by the almost bizarre rapidity and strength of the onset. One day I was feeling great, not a thing to complain about and 2 hours later I was completely exhausted, completely brain-fogged, and starting to ache. The next day the muscle aches were severe -- much more powerful than any I'd had with flu or mono. My daughter went down the same way about a week later.

I don't know if most 'sudden onset' cases were this rapid, but if they were, it's pretty identifiable, believe me. But even having a "flu" you never recover from is a clear identifying point.

Some people just slowly start to feel worse and worse without the identifiable starting point. It's a reasonable hypothesis that these are two different paths to ME/CFS.

I think a sudden onset does suggest a viral factor in the illness. Much more so than a gradual onset does. However; as I understand retroviruses (and that's not very much, admittedly), the same cannot be said of retroviral infections. I imagine the retroviral infection can become noticeable by either path, neither of which likely indicates when you were actually infected.

Dr Monroe's statement doesn't seem to make sense. I'll have to go and look at in in context. Is s/he suggesting that they've split their so-called CFS patients into 2 groups -- the "obviously" viral, and the "not apparently ill" :confused: ...and then published research on the second group first? It's just weird.

Maybe there was some compromise when ME/CFS was moved to another group that allowed Reeves to keep a group that he thought was likely psychological. :rolleyes: So now he's trying to prove "his" group of "CFS" patients are not organically ill..... It still doesn't make much sense. I hope not, because that's a really scary thought.
 
Messages
87
Likes
13
I understand acute onset. I was at work, perfectly well one day over 20 years ago about to go into a meeting. Then suddenly, really suddenly, I can time it within five minutes, I told my colleagues I was feeling so bad that I had to go home. It was pain, fog, exhaustion. All at once and sudden. At first I thought I had the flu, maybe hepatitis without jaundice.....I was worked up for everything. Every test, except some minor immune dysfunctions that were not specific came back negative and still are..... To make a long story short, the flu didn't go away for years. Obviously it is a diagnosis in retrospect. You dont diagnosis CFS in anyone at first onset. It is a diagnosis in retropect for everyone since there are so many diseases that have to be ruled out.

For the past years it has come and gone. It has returned in the past few months, waxing and waning at its own pleasure....

So I know acute onset of our thing. It seems that it doesn't happen to everyone here...However, if it happened to you, you know. I have discussed this before and there seems to be a number of threads here with people who have had the exact same experience. If you had acute onset on CFS you know. Again, while everyone's case didnt start this way, it is a hallmark for some of us.

and PS...not only viral illness strike suddenly....there are many disease systems that can be acutely affected, neurological, hormonal, stress, muscular skeletal, etc etc...
 

SOC

Senior Member
Messages
7,849
Likes
16,349
I understand acute onset. I was at work, perfectly well one day over 20 years ago about to go into a meeting. Then suddenly, really suddenly, I can time it within five minutes, I told my colleagues I was feeling so bad that I had to go home. It was pain, fog, exhaustion. All at once and sudden. At first I thought I had the flu, maybe hepatitis without jaundice.....I was worked up for everything. Every test, except some minor immune dysfunctions that were not specific came back negative and still are..... To make a long story short, the flu didn't go away for years. Obviously it is a diagnosis in retrospect. You dont diagnosis CFS in anyone at first onset. It is a diagnosis in retropect for everyone since there are so many diseases that have to be ruled out.

For the past years it has come and gone. It has returned in the past few months, waxing and waning at its own pleasure....

So I know acute onset of our thing. It seems that it doesn't happen to everyone here...However, if it happened to you, you know. I have discussed this before and there seems to be a number of threads here with people who have had the exact same experience. If you had acute onset on CFS you know. Again, while everyone's case didnt start this way, it is a hallmark for some of us.
Some of us had stunningly sudden onset, but I haven't a clue what, if anything, that suggests. It's distinctly odd, though.

and PS...not only viral illness strike suddenly....there are many disease systems that can be acutely affected, neurological, hormonal, stress, muscular skeletal, etc etc...
Thanks. I'm really feeling my lack of biology education and medical system experience (never saw a doctor until I was 21) these days. I try to get educated, but it's a long haul. Every little bit helps. :D
 
Messages
87
Likes
13
you raise a good point. I know within five minutes of talking to anyone if they have the same thing as I have....This doesnt mean that I know if they have CFS, all i am saying is that I know if they have my form of CFS. Five minutes...guaranteed.... Maybe I should start my own cohort....
 

CBS

Senior Member
Messages
1,513
Likes
849
Acute versus gradual onset

I had two weeks of odd symptoms but nothing that alarmed me (a serious rash that I attributed to a change in soap - feeling a bit tired). And then I got knocked on my back side in a matter of Hours.

Sunday afternoon at about 3 pm - Huge lymph node the size of a plum.
Monday at 6:30 pm - on my way home from seeing my doc about the node ("That's odd"), I left the office still feeling nothing more than a bit tired. In a matter of minutes (somewhere between the office and my apartment - 10 minutes away) I started to feel horrible as though a very serious case of the flu was coming on. So I stopped at the store to pick up some soup and drinks in case I was laid up for a bit. I never made it out of the store with my purchases. I'd picked up half of what I was after when I had horrendous pains in my knee. I sat down on the floor and tried to figure out if I could finish stopping or if I just needed to try and get home (funny that the ER never crossed my mind). In a matter of minutes I knew the best I could hope for was to make it home. By midnight I had a fever of 104, horrendous headaches, muscle pain, serious flu like malaise. This intense acute set of symptoms lasted for about two weeks.

I call this acute on set but there were some odd things going on in the preceding two weeks.

I could see someone having a more gradual onset but I'm not sure how it would be defined. Personally, FOR RESEARCH, I'm comfortable with studies making the distinction (I'm not comfortable with studies excluding gradual onset patients - although I do understand the need for statistical power).

A more fundamental step (and one that I assume we can all agree upon) is to first stop accepting studies of CDC defined CFS (as per the well documented concerns of L Jason).