Re: neuronal damage, cell aptosis, grim- ALL?

[Guest guest]

>

> I don't want to make this sound bleak or morbid, but more

> investigative/research orientated.

>

> There are many forum posts that, when read closely, indicate the

> serious nature of this disease - but likely and hopefully for a

> smaller subset of us in wheelchairs, w/neurological hard signs,

> cardiac abnormalities, etc - demonstrating damage to our immune

> system/brain function/cellular pathways/etc.

>

> There are likely some PWCs too sick to even post on this forum

>

> But to my point, what ever became of the effort to do PWC autopsies,

> which (afaik) is sometimes used substantially to understand other

> diseases? Even for such diseases as Alzheimer's, afaik - there is

> still no clinical marker (altho they are apparently 'getting closer'),

> and the highest resolution brain MRIs do not show the plaque tangles

> (as does an autopsy)

>

> Lance

[Guest guest]

Hello again all

Cheney and perhaps others have been using the fMRI for PWCs for at

least a year or two. Carol S. has posted on it (as well as a recent

excellent multi-part summary from Cheney re: TH1-TH2, which I

initially missed [i didn't see it on the DFW website?]). I couldn't

find it (the fMRI post) searching the forum's archives. IIRC,

essentially, at that point in time, only 5 or 10 PWCs had been thru

the procedure (at Columbia?? [and may just be a subset]): all had

marked abnormalities, including elevated lactic acid and other neuro

transmitter irregularities. The procedure may be expensive (but sure

beats having a spinal tap done!)? And we already have peer-reviewed

published articles on abnormal brain SPECTs and MRIs (and unpublished?

findings on brain PETs).

Is sadly ironic they have been/are given so little credence for CFS,

while there is a fervor of interest in fMRI (and SPECT/PET) for other

neuro/autoimmune diseases (and I hope it helps them, and it may

collaterally help us).

Just seems common sense that abnormal CFS fMRIs and brain SPECTs would

open some CFS disbeleving eyes/minds up...(in addition to data)!!

Seems like there was a movement in the early 90s to get a PWC autopsy

program going, but it faded

Also, could be we have some very ill/debilitated PWCs, that don't have

'abnormal SPECTs, MRIs, RNase-L, elevated cytokines, reduced max VO2,

low NK cell function, elevated myelin basic protein in CSF, etc,

etc'.... and yet have marked organic abnormalities - from a test yet

to be applied, or yet to be developed.

Lance

> >

> > I don't want to make this sound bleak or morbid, but more

> > investigative/research orientated.

> >

> > There are many forum posts that, when read closely, indicate the

> > serious nature of this disease - but likely and hopefully for a

> > smaller subset of us in wheelchairs, w/neurological hard signs,

> > cardiac abnormalities, etc - demonstrating damage to our immune

> > system/brain function/cellular pathways/etc.

> >

> > There are likely some PWCs too sick to even post on this forum

> >

> > But to my point, what ever became of the effort to do PWC autopsies,

> > which (afaik) is sometimes used substantially to understand other

> > diseases? Even for such diseases as Alzheimer's, afaik - there is

> > still no clinical marker (altho they are apparently 'getting closer'),

> > and the highest resolution brain MRIs do not show the plaque tangles

> > (as does an autopsy)

> >

> > Lance

[Guest guest]

--- In ,

>Yes, Cheney has used the MRS on ME/CFS patients at Columbia with Dr Shungu,

but has never used the new 3D image producing fMRI/PET breakthrough scanning

technique just out this year using live Alzheimers patients brains as the model

to show what this new(integrative software I bet) development can show

prestinely.

Don't know the name of the scan as I said, but the views I saw in the preview

for the tv report were pristine and not

refined CG cartoons either. They were three dimentional pictures of the actual

pathology as it exists in the brain.

Though these understandably have different purposes, MRS, MRI, fMRI, SPECT and

PET by themselves don't come close the crytal clarity this new scan provides.

Get 5 to 10 long term(5+ years from onset) and housebound ME/CFS patients

scanned with this new diagnostic tool and the light shed could greatly catapult

research and development for this disease far ahead.

the tv show 20/20 or the weeknight version of Sixty Minutes had a show on

earlier this year on a new fMRI/PET breakthrough scanning technique that is

diagnostic for Alzheimers. I missed the actual show so missed getting the

specifics, but did see enough of a preview that said this was the first time in

medical history that the specific signature and image of Alzheimer's in the

brain could be viewed while patients are alive.

>

>

>

> Thus, it may in fact now be the case that brain autopsy data is completely

unnescessary for definitive diagnosis in several brain affected diseases like

this. Its seems to me this fMRI and PET scan combo technique for scanning is

appropriate for ME/CFS patients.

>

>

>

> In light of obvious brain dysfunction occuring added to last years gene

profiling studies showing metabolic abnormalities in ME/CFS patients

reminiscient of the problems seen in Alzheimer's, Huntington's, etc., I can't

see why it wouldn't. Maybe someone on this list knows the actual name of this

specific diagnositic scan or how to find out and what hospitals/doctors are now

using it?

>

>

>

>

[Guest guest]

Thanks for this reminder on MRS (I'd forgotten it). Hopefully some

PWCs will (may be already have??) get it done, and we'll get some info

back

Lance

>

> --- In ,

>

>

> >Yes, Cheney has used the MRS on ME/CFS patients at Columbia with

Dr Shungu, but has never used the new 3D image producing fMRI/PET

breakthrough scanning technique just out this year using live

Alzheimers patients brains as the model to show what this

new(integrative software I bet) development can show prestinely.

>

>

>

> Don't know the name of the scan as I said, but the views I saw in

the preview for the tv report were pristine and not

> refined CG cartoons either. They were three dimentional pictures

of the actual pathology as it exists in the brain.

>

>

>

> Though these understandably have different purposes, MRS, MRI, fMRI,

SPECT and PET by themselves don't come close the crytal clarity this

new scan provides. Get 5 to 10 long term(5+ years from onset) and

housebound ME/CFS patients scanned with this new diagnostic tool and

the light shed could greatly catapult research and development for

this disease far ahead.

>

>

>

>

>

>

>

> the tv show 20/20 or the weeknight version of Sixty Minutes had a

show on earlier this year on a new fMRI/PET breakthrough scanning

technique that is diagnostic for Alzheimers. I missed the actual show

so missed getting the specifics, but did see enough of a preview that

said this was the first time in medical history that the specific

signature and image of Alzheimer's in the brain could be viewed while

patients are alive.

> >

> >

> >

> > Thus, it may in fact now be the case that brain autopsy data is

completely unnescessary for definitive diagnosis in several brain

affected diseases like this. Its seems to me this fMRI and PET scan

combo technique for scanning is appropriate for ME/CFS patients.

> >

> >

> >

> > In light of obvious brain dysfunction occuring added to last years

gene profiling studies showing metabolic abnormalities in ME/CFS

patients reminiscient of the problems seen in Alzheimer's,

Huntington's, etc., I can't see why it wouldn't. Maybe someone on this

list knows the actual name of this specific diagnositic scan or how to

find out and what hospitals/doctors are now using it?

> >

> >

> >

> >