SUPPORT THUNDERCLAP: Stop the IOM! Adopt the CCC! https://www.thunderclap.it/projects/10666-stop-the-iom-adopt-the-cccME/CFS Demonstration in San Francisco on May 12, 2014! http://www.mecfsforums.com/index.php/topic,19869.msg160980.html#new
"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, andMycoplasma 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.htm2009
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?
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/18805903If 1 in 4 people with 'CFS' have neurological damage, people may have asked questions if 'CFS' patients had been routinely tested.
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.
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.
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.
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?
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