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

[Mithriel]

Exactly right Tina

Mithriel

 

[SOC]

How can they study Incline Village outbreak, name that illness CFS, then, when studying it, say the people in the study, including some from the Incline Village outbreak, have something else besides CFS. They defined those people in Incline Village as having CFS. But now they say they don't, they and the others in the WPI have a have a neurological condition?

The whole CDC CFS program started with Incline Village. If those folks, and the others in WPI study have something else besides CFS, then why isn't CDC looking into that? What is it called? If it is Myalgic Encephalomyelitis, then how is CDC doing on studying that? When was the last study published by the CDC on ME?

Tina

Exactly! We need a journalist with ME/CFS knowledge asking those questions. [hint, hint]

 

[Recovery Soon]

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 . . .

This was the best way to bury the NIH/FDA controversy- in the Friday news cycle- on a Holiday weekend.

So, the WSJ articles, and the covers of Nature and Science, have now lost their all of their initial power.

The flip side is the CDC also lost it's spark.

 

[leela]

I am amazed at how difficult it is for the medical establishment to recognize that circumstances, environment, personal history and constitution could easily account for the variables in the way each immune system attempts to deal with any illness. We are not lab rats raised in the same cage, fed the same diet, breathing the same air, living under the same fluorescent lighting rhythms, and exposed to exactly the same pathogens at precisely the same time.

I personally would describe mine as Gradual Onset Via Multiple Acute Episodes. Which seems like the middle ground between two very real ways the human body responds to immunological overload.

How many blows to the head does it take for a prizefighter to finally fall to the floor and incur brain damage? Was it that one blow? The whole series of blows in his lifetime? Or was that one blow the final straw in a long series of insults? No one can say for sure. The only thing that is for certain is that
the brain damage has occurred, and it would probably be good to stop letting people punch you in the head.

It is SO time for the political games to stop and to allow funding and research for all manifestations of this illness, no matter what it's called, how it came on, and which particular pathogens are present. The medical model that presumes every body reacts to the same illness the same way is illogical.

 

[Recovery Soon]

Good points. I think Mikovits' theory also rings true for gradual onset. The way she described is that the immune system tries to keep the virus down. We know there are antibodies. She said that if the triggers keep up, with each flood of the virus, the immune system loses ground in the battle, until there is a tipping point. So I can see where the tipping point can be a sudden onset of symptoms or, as has been suggested, maybe multiple little squirmishes with other infections or stress or progesterone spikes, so that with each one, more damage is done. Immune system attacks again, but then another trigger, and so it gets worse gradually.

Tina

Yes- I had sudden onset- during a 2 mile run on a Sunday afternoon in the middle of September 2006 (how's that for specific?)- suddenly realized everyone was lapping me, strange because I was in peak physical condition- then realized I was coming down with the flu. The rest is history.

To Tina's point- in hindsight, I now can recall that I was having immune problems prior to my "sudden onset" for maybe a year or so beforehand- which I didn't quite recognize as such.

One example is that every time I would work out intensely I would get a sore throat afterwards. Also, I was getting colds a lot. I can recall having a "Cold Buster" Jamba Juice and large Chicken Noodle Soup for lunch maybe 4 or 5 times a month to combat something or other during that time. I would have forgotten all of this had I not recently recalled making a fleeting joke to my girlfriend at the time about my weak immune system (though, I didn't actually realize how weak it really was).

So, I guess my take away message from all of this is that even "sudden onsets" likely have certain gradual precursors that we have likely forgotten about, unless we examine closer.

Mikovitz's theory perfectly explains this whole process.

I guess that Sunday on the track was my tipping point.

 

[usedtobeperkytina]

Is it me or is it them? It's them, right?

Tina

 

[Forbin]

How can they study Incline Village outbreak, name that illness CFS, then, when studying it, say the people in the study, including some from the Incline Village outbreak, have something else besides CFS. They defined those people in Incline Village as having CFS. But now they say they don't, they and the others in the WPI have a neurological condition?

Tina

Here’s how...

In early 1992, The Annals of Internal Medicine published a paper entitled “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpesvirus Type 6 Infection.” The paper’s subjects were 259 victims of the Lake Tahoe outbreak of 1984.

http://www.ncf-net.org/pdf/CFSAnnInternMed1992.pdf

The paper’s authors included Dedra Buchwald, Paul Cheney Dan Peterson, Dharam V. Ablashi, Robert Gallo and Anthony Komaroff. In Osler’s Web, Hillary Johnson called it “the most exhaustive and medically sophisticated study of the disease ever undertaken.” The paper concluded that its subjects may have been “experiencing a chronic, immunologically mediated inflammatory process of the central nervous system.”

Eight months later, in August 1992, the same publication printed a letter written by Bill Reeves (the CDC's then new CFS principal investigator) and two colleagues at the CDC entitled “The Chronic Fatigue Syndrome Controvesry.” In it they wrote:

“We conclude that the disease Buchwald and co-workers described is not the chronic fatigue syndrome or any other entity.”

So, by 1992 at the latest, the CDC had decided that CFS was not the illness seen in Lake Tahoe. They had also decided that the illness seen at Lake Tahoe...did not exist.

 

[glenp]

were some simply depressed?

In the Switzer et al (2010) study on XMRV and CFS, one or more CFS patients scored 100 (out of 100) on the SF-36 physical functioning scale.

That means they answered "No, not limited at all", to all of the questions below (the questions below are the questions for the physical functioning subscale: basically "Yes, Limited A Lot" gets you 0 points for that question; "Yes, Limited A Little" gets you 5 and "No, not limited at all" gets you 10 so scale is 0-100).

Extract from Switzer et al (2010) study paper:
SF-36 physical functioning 65.5, range 10-100
This average score is higher than you generally see in CFS studies.

Leonard Jason previously noted this problem in:
5. Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's
empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies
2009;20;93.

Leonard Jason et al gave an example of a woman with major depressive disorder who didn't have CFS satisfying the empiric criteria despite having a SF-36 PF score of 100

SF-36 physical functioning questions

4. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
(check one on each line) ACTIVITIES

Yes, Limited A Lot

Yes, Limited A Little

No, Not Limited At All

a. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
1
3
5

b. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
1
3
5

c. Lifting or carrying groceries
1
3
5

d. Climbing several flights of stairs
1
3
5

e. Climbing one flight of stairs
1
3
5

f. Bending, kneeling, or stooping
1
3
5

g. Walking more than a mile
1
3
5

h. Walking several blocks
1
3
5

i. Walking one block
1
3
5

j. Bathing or dressing yourself
1
3
5

 

[glenp]

Here are the email addresses - for anyone that wants to question them directly --

William Switzer bis3@cdc.gov

HongweiJia hja@cdc.gov

Oliver Hohn HohnO@rki.de

Hao Quiang Zheng hzeng@cdc.gov

Shaohua Tang stang@cdc.gov

Anupama Shankar ashankar@cdc.gov

Norbert Bannert BannertN@rki.de

Graham Simons gsimmons@bloodsystems.org

R Michael Hendry mhendry@cdc.gov

Virginia R Falkenberg vfalkenberg@cdc.gov

William C Reeves wreeves@cdc.gov

Walid Heneine wheneine@cdc.gov

 

[usedtobeperkytina]

So, the Incline Village folks have a newly created diagnosis of CFS. And then they have hysteria (reported by Dateline as a comment from Reeves). Then they don't have CFS, with only a comment that they have chronic inflammation in CNS. And now they have a neurological condition, unnamed, that CDC isn't studying. So after investigators came out to Incline Village 25 years ago, they don't know what was in Incline Village. Can anyone who got the illness there tell me if they have been in any CDC study in the last 20 years.

So is that their story?

Tina

 

[Cort]

I'm trying to characterize type of onset and health at the time of onset for the Patient Data Repository program I'm setting up.
http://www.forums.aboutmecfs.org/showwiki.php?title=Patient+Data+Repository+and+Treatment+Review+Project:Onset

Right now it's something like this

I had acute onset: I experienced a sudden dramatic decline in my health

My health at the time was:

• Excellent
• good
• fair
• poor

I had not experienced increasing levels of the symptoms associated with ME/CFS in the year prior to becoming ill
I had experienced increasing levels of symptoms associated with ME/CFS in the year prior to coming ill

I had gradual onset: I experience a gradual decline in my health over time
This decline occurred over several

• weeks
• months
• years

Plus maybe
When I was a child I experienced periods of unexplained and severe fatigue, poor concentration, postexertional malaise, unrefreshing sleep or muscle or joint pain