Author Topic: CFS smoking gun is on CDC website: MULV associated pathology excluded for CFS  (Read 1702 times)

B8b_E

  • Hero Member
  • *****
  • Posts: 3239
Quote
"A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study.

In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as:

Epstein-Barr virus,
enteroviruses,
Retroviruses,
human herpesvirus 6 [HHV-6],
Candida albicans, and
Mycoplasma incognita,

are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis).

"In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS.

"Other tests that must be regarded as experimental for making the diagnosis of CFS including the tilt table test for NMH,and imaging techniques such as MRI, PET-scan, or SPECT-scan.[/
size]

Source: www.cdc.gov/cfs/cfsdiagnosis.hcp.htm
2009 
[/i]

NB: If you exclude MULV pathology in CFS, no government agency or community physicians will EVER FIND MULV in CFS.
[WPI found MULV in CFS first].

The above is a blueprint designed NOT to find MULV in a diseased cohort with a label of CFS that the CDC created.
Below is an attached screengrab before they deleted the old website, pre WPI XMRV announcement.
« Last Edit: March 22, 2011, 05:10:01 AM by xMRV+BäbY »

B8b_E

  • Hero Member
  • *****
  • Posts: 3239
CDC says a TILT test can only be experimental.

YET a positive abnormal TILT would show neurological damage to the CNS.

MULV infections can damage the CNS.

If the CDC had not tried to hide this, how common in neurological damage of the CNS (Dysautonomia) in CFS heterogeneous cohort?

How about  1 in 4 people. (27%).  
Source:  http://www.ncbi.nlm.nih.gov/pubmed/18805903

If 1 in 4 people with 'CFS' have neurological damage, people may have asked questions if 'CFS' patients had been routinely tested.


B8b_E

  • Hero Member
  • *****
  • Posts: 3239
To conclude:

The CDC advise against testing for the VERY THINGS in 'CFS' associated with MULV (XMRV) infections.


TILT test - NEURO DAMAGE
Cytokine Test - INFLAMMATION - Glial Cell Inflamamation (Brain).
Cell Surface Markers - IMMUNE DYSFUNCTION
NKC Function - IMMUNE SUPRESSION.   XMRV infects NKC
Retroviral infection - UNDERLYING CAUSE
Brain Scans - BRAIN DAMAGE/BRAIN INFLAMMATION (PET)
EBV = NOW ASSOCIATED WITH XMRV B CELL INFECTION

And better than that, it's no 'conspiracy theory', it's all in writing.

http://www.cdc.gov/cfs/general/diagnosis/testing.html

« Last Edit: March 22, 2011, 05:22:29 AM by xMRV+BäbY »

JT1024

  • Hero Member
  • *****
  • Posts: 1861
Who is responsible for writing and publishing this trash?  That's it.

"Nice" chats with the CDC are not appropriate. They've clearly demonstrated that they've made CFS up to be what "they" want it to be and are they are deliberately misinforming health professionals and the public. If there is any meeting with the CDC, perhaps it should be to rename CFS as "Reeves Disease".  ME is already classified in the ICD-9 and ICD-10.  Let the CDC and its collaborators drive "Reeves Disease" into ground. Hopefully, they'll bury themselves at the same time. CSFAC? - perhaps break it up into two separate groups: one for Reeves Disease and another for ME/XMRV/XAND.

Time for a Congressional Inquiry. Time for truth in reporting. Time to dig the dirt up on the "reporters", "scientists", and "patient advocacy organizations" that are a disgrace to their professions and destructive to patients.

Carolinet had the right strategy. Get moving on Tom Harkins and the Senate Appropriations committees. Timing is not optimal due to global concerns but I doubt it is going to get any better any time soon.
First they Ignore you , then they Laugh at you , then they Attack you , then you WIN!!!

Mahatma Gandhi

JT1024

  • Hero Member
  • *****
  • Posts: 1861
Totally agree with THAT Levi... now tell me how to get them to pay for it...
First they Ignore you , then they Laugh at you , then they Attack you , then you WIN!!!

Mahatma Gandhi

Adam

  • Guest
This is slight of hand, isn't it? We (the CDC) define PWCFS as people without a retroviral infection - ERGO - you have a retrovirus you don't have CFS?

nackered

  • Guest
This is slight of hand, isn't it? We (the CDC) define PWCFS as people without a retroviral infection - ERGO - you have a retrovirus you don't have CFS?

That's what I was thinking too, whilst it is sneaky it may actually work in our favour if they do the same thing over here, the sooner we get rid of CFS the better.

Tango

  • Hero Member
  • *****
  • Posts: 12222
  • Paprotka et al. 2011 is a bust!
CDC says a TILT test can only be experimental.

YET a positive abnormal TILT would show neurological damage to the CNS.

MULV infections can damage the CNS.

If the CDC had not tried to hide this, how common in neurological damage of the CNS (Dysautonomia) in CFS heterogeneous cohort?

How about  1 in 4 people. (27%).  
Source:  http://www.ncbi.nlm.nih.gov/pubmed/18805903

If 1 in 4 people with 'CFS' have neurological damage, people may have asked questions if 'CFS' patients had been routinely tested.

More I think then just the 1/4.   But that is not scientific.
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

awol

  • Hero Member
  • *****
  • Posts: 2405
That's what I was thinking too, whilst it is sneaky it may actually work in our favour if they do the same thing over here, the sooner we get rid of CFS the better.

No, I think this is bad, and selfish. Certainly it is good for us if we no longer have "CFS", but "CFS" needs to DIE!

It is simply not acceptable to have a label in existence that serves the precise purpose of hiding diseases. I can NOT advocate that as a solution just because it hurts someone other than me.

nackered

  • Guest
If they said "CFS" could be caused by a retrovirus once the XMRV business is sorted out we'd be stuck with the CFS label, and if they did that and the name changed from CFS they'd then have to go back and say CFS isn't caused by a retrovirus. It'd be, no it isn't, yes it is, no it isn't.

CFS will still exist once the XMRV is proven to cause disease, that I'm sure of, it just won't be used to define people with XMRV.

awol

  • Hero Member
  • *****
  • Posts: 2405
CFS will still exist once the XMRV is proven to cause disease, that I'm sure of, it just won't be used to define people with XMRV.

Well I think this outcome would be tragic, and should be fought with every bit of passion we have left after fighting for XMRV research.

Gerwyn

  • Guest
If they said "CFS" could be caused by a retrovirus once the XMRV business is sorted out we'd be stuck with the CFS label, and if they did that and the name changed from CFS they'd then have to go back and say CFS isn't caused by a retrovirus. It'd be, no it isn't, yes it is, no it isn't.

CFS will still exist once the XMRV is proven to cause disease, that I'm sure of, it just won't be used to define people with XMRV.

I agree except we should stop using the term XMRV but use HGRVS. We need a medical diagnosis that referrs to our underying pathology and not a hopeless sociopolitical metaphor that they will always be able to manipulate

CFS has no objective meaning whatsoever .CFS will always be a plaything of the psychiatrists

Gerwyn

  • Guest
Well I think this outcome would be tragic, and should be fought with every bit of passion we have left after fighting for XMRV research.

Why would that outcome be tragic?

awol

  • Hero Member
  • *****
  • Posts: 2405
Why would that outcome be tragic?

Because "CFS" would continue to exist as a way to hide diseases and deny people with legitimate but badly understood illnesses treatment and insurance. The nightmare would live on for anyone who doesn't happen to have the cause of THEIR disease discovered.

As I already said in my previous posts here and have argued, in fact, for many months.

Adam

  • Guest
I agree with both Gerwyn (myself  ::) ), Knackered and AWOL. If say around 75% of PWMECFS have an HGRV then they won't have CFS. The remaining 25% will - and will be stuck like we all are now. We've done this argument to death (in the past). No one has a crystal ball - so we can only speculate as to what will happen when retroviruses are proven to be the cause of ME/CFS. On a personal note, again, it's the same old argument - I want to be XMRV+ (but if I am it might too late to see much if any improvement if and when we ever get any meds). If I'm not XMRV+ it's crap, because I'll never see any improvement, but at least I won't have a retrovirus  ;D . Geez this is stretching my brain cells  ???