Re: Re: inflammation of the spine

[Guest guest]

I have no trouble at all

believing that some terrible shit is doing down alongside the

suffering, but as a rule conventional medicine is blind to it, and/or

doesn't have the tools to definitively detect it.

I doubt that most CFIDS sufferers get autopsied. Heck these days most

people don't get autopsied, period. Autopsy rates are way down in the

past half century.

And once you get at that minority that are autopsied, what does a

typical autopsy look for? Inflammation of the spine, whatever

precisely that may be? I seriously doubt it because coroners are

running a production line looking for foul play and gross

abnormalities, and as far as I know, are relying primarily on what is

observable, not what is hidden inside the spinal column. Maybe they

will take some CSF and maybe they will do tests looking for

inflammation of certain kinds, and maybe not. Maybe if they find

something they'll think it's remarkable, and maybe not. Maybe they

will remark on it and no one will think it important.

Lastly, since the medical community is ambivalent at best about the

validity of CFIDS / CFS / ME as a diagnosis, the autopsy result may

well not be classified under that diagnosis anyway. Assuming they get

classified reliably at all. My guess is that the purported "cause of

death" is more important to a coroner than the person's medical

history. They may even consider knowledge of the person's medical

history a detriment to objective reporting.

So it seems to me that "inflammation of the spine" being a "common

finding in CFS autopsies" is highly unlikely. What we are almost

surely dealing here is an anecdote, not a fact. One cannot go online

and cross reference autopsy results based on diseases suffered by the

autopsy subjects at the time of death, and verify this statement,

therefore it is inadmissible as evidence.

If the person making this statement was someone with personal knowledge

of dozens of autopsies done on persons with a valid CFS diagnosis, and

many of them had some sort of inflammation in the spinal column, then

it rises to the level of "very interesting" ... but I doubt that's the

case here. I think someone is probably repeating something they heard

from someone else who may or may not have heard an offhand remark from

some doctor who may or may not have known what he was talking about.

This is the sort of thing that bothers me about online discussion

groups. Someone makes an unsubstantiated remark and it becomes gospel

truth as it's repeated enough times. It's understandable ... we all

want validation and understanding about the seriousness of chronic

illness ... but folks, this ain't the way to go about it. It does way

more harm than good in the long run.

Let's just say that it wouldn't surprise us to find terrible

inflammatory loci in CFS patients, either living or dead, were anyone

both inclined and equipped to look for them ... and willing to believe

what they were seeing ... and leave it at that.

--Bob

dumbaussie2000 wrote:

Someone posted this on autopsy findings in cfs on experimental. I

think at your age you haven't got the neck problems and lower back

problems that go with these afflictions.I recall someone coming on

recently describing the state of there simple xrays, or scans, on the

terrible condition of there neck on this forum.

Do you have a problem believeing that some terrible shit is going

down alongside the suffering?

topny

>

> > This is a

> > common finding in cfs autopsies, INFLAMMATION OF THE SPINE.

>

> Says who?

>

[Guest guest]

Amen, Bob!

Nelly

Re: [infections] Re: inflammation of the spine

I have no trouble at all believing that some terrible shit is doing down alongside the suffering, but as a rule conventional medicine is blind to it, and/or doesn't have the tools to definitively detect it.I doubt that most CFIDS sufferers get autopsied. Heck these days most people don't get autopsied, period. Autopsy rates are way down in the past half century.And once you get at that minority that are autopsied, what does a typical autopsy look for? Inflammation of the spine, whatever precisely that may be? I seriously doubt it because coroners are running a production line looking for foul play and gross abnormalities, and as far as I know, are relying primarily on what is observable, not what is hidden inside the spinal column. Maybe they will take some CSF and maybe they will do tests looking for inflammation of certain kinds, and maybe not. Maybe if they find something they'll think it's remarkable, and maybe not. Maybe they will remark on it and no one will think it important.Lastly, since the medical community is ambivalent at best about the validity of CFIDS / CFS / ME as a diagnosis, the autopsy result may well not be classified under that diagnosis anyway. Assuming they get classified reliably at all. My guess is that the purported "cause of death" is more important to a coroner than the person's medical history. They may even consider knowledge of the person's medical history a detriment to objective reporting.So it seems to me that "inflammation of the spine" being a "common finding in CFS autopsies" is highly unlikely. What we are almost surely dealing here is an anecdote, not a fact. One cannot go online and cross reference autopsy results based on diseases suffered by the autopsy subjects at the time of death, and verify this statement, therefore it is inadmissible as evidence.If the person making this statement was someone with personal knowledge of dozens of autopsies done on persons with a valid CFS diagnosis, and many of them had some sort of inflammation in the spinal column, then it rises to the level of "very interesting" ... but I doubt that's the case here. I think someone is probably repeating something they heard from someone else who may or may not have heard an offhand remark from some doctor who may or may not have known what he was talking about.This is the sort of thing that bothers me about online discussion groups. Someone makes an unsubstantiated remark and it becomes gospel truth as it's repeated enough times. It's understandable ... we all want validation and understanding about the seriousness of chronic illness ... but folks, this ain't the way to go about it. It does way more harm than good in the long run.Let's just say that it wouldn't surprise us to find terrible inflammatory loci in CFS patients, either living or dead, were anyone both inclined and equipped to look for them ... and willing to believe what they were seeing ... and leave it at that.--Bobdumbaussie2000 wrote:

Someone posted this on autopsy findings in cfs on experimental. I think at your age you haven't got the neck problems and lower back problems that go with these afflictions.I recall someone coming on recently describing the state of there simple xrays, or scans, on the terrible condition of there neck on this forum.Do you have a problem believeing that some terrible shit is going down alongside the suffering?topny>> > This is a > > common finding in cfs autopsies, INFLAMMATION OF THE SPINE. > > Says who?>

[Guest guest]

My wife has suffered from CFS

for 30 years, and not your garden variety CFS ... she actually meets

the original 1988 case definition, which, while imperfect, at least

meant something, back in the day. The subsequent watering down in the

1994 case definition and the current further dilution going on as we

speak, with the CDC's not-so subtle campaign to psychologize the

illness and turn it over the the CBT people ... oh, don't get me

started.

The MCS is particularly bad for her, but also relatively recent. In

her case the MCS does not typically manifest as respiratory irritation

or other allergy-like symptoms; it is mostly neurological debility. I

think that it is hard for people who don't suffer from MCS to get their

arms around the concept that MCS and allergies are two different

things, involving different parts of the immune system, and that MCS

symptoms are multi-systemic, with the respiratory system often being

the least of it.

To address your point, lots of people have neck and back pain. In fact

it is so common that its presence or absence, in my view, is not

remarkable.

That doesn't exclude the possibility that your particular neck pain was

the result, directly or indirectly, of chronic infection. Nor does it

exclude the possibility that back and neck pain, in or out of the CFS

community, might sometimes or even often be directly or indirectly

related to chronic infection -- of the spine structures themselves, or

of the nerves and/or muscles that service the spine.

However, while it doesn't exclude the possibility, it doesn't really

prove anything. In the end, I suppose that if it happened to work for

you, either because you're right or because you're lucky, that's all

that really matters -- to you. And I am happy that you have gotten

relief.

(As a side note, I don't know what your perception of "the big CFS USA

organization" is down under, but from where I sit up here, I'm not at

all impressed. As far as I'm concerned all the CFS organizations in

the U.S. are, to put it charitably, ineffectual -- medically or

politically. For proof you only have to look at where we are after a

generation of "advocating" for medical acceptance, effective

treatments, and research dollars. I mean no disrespect to people who

have put good faith efforts into these organizations; but there are

enough bureaucrats and crackpots in the mix that I don't hold out any

hope for progress coming from that direction).

Best,

--Bob

dumbaussie2000 wrote:

Bob

Do you suffer from cfs? I know personally that for the 15 years

previous to developing this condition I did not like reverse parking

due to the pain in the neck it caused.I also think that factoid on

experimental came from an organisation that was intersted in cfs

autopsies(possably the big cfs usa organisation)- so the amount

done

was possably enough to give you that inflammation of the spine

observation-possably the burnt out tissue surrounding the spine

was

sticking out like a sore thumb?I was just excited because it sort of

explained the many people that end up on these forums after auto

accidents (whiplash).I also take inflammation serious, and watch

carefully how all our footballers are at the ocean the morning after

a match freezing there butts off to clamp there inflammation.

I also think that many people that exert and crash have problems

getting there inflammation under control.. I also listen to people

that have had heart attacks that have had to be packed in ice before

they could have surgery performed on them due to run away

inflammation.I think that our forum is called infection

/inflammation

because they tie in. Also you may find that your wifes nasal passages

are possably diagnosed as constantly inflammaed being a sufferer of

that MCS.Anyways I'm a little more prone to believeing that these

ilnesses fall into line with the problems associated with the rest of

society, than something completely on it's own.

tony

> > >

> > > > This is a

> > > > common finding in cfs autopsies, INFLAMMATION OF

THE SPINE.

> > >

> > > Says who?

> > >

> >

> >

>

[Guest guest]

Tony,

I agree that MCS and other chronic illnesses are an indictment of our

industrialized / chemicalized society.

Interesting point about religious dietary requirements and their impact

upon health. Some years back (okay, probably at least 25 years back --

who am I kidding) there was a book out by an MD author called None

of These Diseases which made a similar point about Jewish dietary

law and its impact on health.

The basic thesis was that the dietary laws and rituals codified the

accumulated wisdom of the ancients and helped people avoid unsanitary

conditions and protect their health in other ways. The book presented

it in a more dogmatic / sectarian fashion than that, but that's the

basic idea.

I have little doubt that other religious and social traditions have

similar adaptations -- people tend to assume that it's all some random

rules that someone invented but there is usually more to it than that.

Back before everyone abrogated their thinking to paid professionals,

they paid attention to their bodies, and observed what worked and what

didn't, and adjusted their habits accordingly. That's partly how

dietary laws / customs, and various rituals evolved. Some of them were

probably more adapted to a particular lifestyle and climate, and may

not entirely work in a modern setting; but as consultants like to say,

"things are the way they are because they got that way". These things

were widely practiced, partly because they tended to work.

--Bob

dumbaussie2000 wrote:

Bob

You don't know me very well. I'm the first person to put my hand up

and say these organisations are full of dickheads.. I just got a

little sense of- 'hey that's cool that you gave us a bit of a tip on

something that was alway's in the back of my mind'.Also Bob we never

really put INFLAMMATION on top of the ladder until this forum ws

opened and we had Barb explain to us that she did her high dose

ibuprofen for 8 months to address and repair her INFLAMMATION PROBLEM.

I also personally went across town a yera earlier to meet the ill,

and the lady I met whom was big on spirochetes, also described the

scar tissue and the therpists constant breaking up of this around her

spine.Just her general explanation took it in a different direction

for me, and made me focus on this possably playing a bigger role than

expected.(food for thought)

I also tend to look at ilness and general health matters with all

facets of what causes all types of ilnesses.Personally I'm from a

greek orthodox religious background and one of the major things

discovered over the centuries is the way we eat and the need for

fasting go hand in hand with avoidance of ill health.I basically had

a great grandmother live to 108 and my other grandmothers where well

into there 90's.. one was 96. They fasted according to all the

requirements of the religion, 'which was very frequent' and avoidance

of animal products on some days on a weekly basis was also

practised.I feel pretty comfortable that our western diet and

afluenza (affluence) are also to blame for some facets of all

ilnesses.

As far as MCS and what I explained to you earlier, I have no problem

believeing that learning to play with infections and switching them

on and off and watch them switch on and off enviromentally.. makes

my

understanding of what needs doing a lot clearer.

tony

[Guest guest]

I don't know about autopsies, but I know I've got some major inflammation in my spine. Spreading to other joints and tendons as well. :-( But my spine as been affected for a very long time. pennydumbaussie2000 <dumbaussie2000@...> wrote: Someone posted this on autopsy findings in cfs on experimental. I think at your age you haven't got the neck problems and lower back problems that go with these afflictions.I recall someone coming on recently

describing the state of there simple xrays, or scans, on the terrible condition of there neck on this forum.Do you have a problem believeing that some terrible shit is going down alongside the suffering?topny>> > This is a > > common finding in cfs autopsies, INFLAMMATION OF THE SPINE. > > Says who?>

[Guest guest]

I've been to all kinds of back doctors over the years. One guy, some kind of combo orthopedic chiropractic dude sanctioned by the state of California (whatever that means) told me that I had a tremendous amount of scar tissue in my back which was restricting my movement and causing so much pain in my shoulders that I could barely raise my arms. I went through very painful physical therapy to break down this "scar tissue". Where this "scar tissue" came from, no one could ever tell me. I, however, am now quite certain that this is a result of a lifetime of inflammation. I can feel the burning in my neck right now. This was one of the big improvements I saw from Benicar. A dampening of that burning pain. dumbaussie2000 <dumbaussie2000@...> wrote: BobYou don't know me very well. I'm the first person to put my hand up and say these organisations are full of dickheads.. I just got a little sense of- 'hey that's cool that you gave us a bit of a tip on something that was alway's in the back of my mind'.Also Bob we never really put INFLAMMATION on top of the ladder until this forum ws opened and we had Barb explain to us that she did her high dose ibuprofen for 8 months to address and repair her INFLAMMATION PROBLEM.I also personally went across town a yera earlier to meet the ill, and the lady I met whom was big on spirochetes, also described the scar tissue and the

therpists constant breaking up of this around her spine.Just her general explanation took it in a different direction for me, and made me focus on this possably playing a bigger role than expected.(food for thought)I also tend to look at ilness and general health matters with all facets of what causes all types of ilnesses.Personally I'm from a greek orthodox religious background and one of the major things discovered over the centuries is the way we eat and the need for fasting go hand in hand with avoidance of ill health.I basically had a great grandmother live to 108 and my other grandmothers where well into there 90's.. one was 96. They fasted according to all the requirements of the religion, 'which was very frequent' and avoidance of animal products on some days on a weekly basis was also practised.I feel pretty comfortable that our western diet and afluenza (affluence) are also to blame for some facets of all

ilnesses.As far as MCS and what I explained to you earlier, I have no problem believeing that learning to play with infections and switching them on and off and watch them switch on and off enviromentally.. makes my understanding of what needs doing a lot clearer.tony> > > > >> > > > > > This is a> > > > > > common finding in cfs autopsies, INFLAMMATION OF THE SPINE.> > > > >> > > > > Says who?> > > > >> > > >> > > >> > >> >> >>

[Guest guest]

Sorry, Tony, I really wasn't sticking up for you. You're a big boy. Just sharing my own frustrating experience. pennydumbaussie2000 <dumbaussie2000@...> wrote: aI'm glad that this observation of spine inflammation resignated well with some. Actually Pennys post sounded a bit like she was sticking up for me, but with her previous posts on extreme shoulder related problems it's also nice to see that we can have a discussion on something that touches many

without that stigma of sticking up for someone.a I sort of try to get you to think about these king size problems as opposed to trying to get people to get mycoplasma testing... because this is the 'REALM OF REAL BACTERIA, AND COMMON OPPURTUNISTIC PATHOGENS'. Unfortunately you didn't adhere strongly to anything I've been preac=hing for the last few years about pathology labs and let a major oppurtunity in your own case go down the drain.You showed no interest to attack your doctor or the pathology lab for WHAT WAS GROWING IN THE SAMPLE you had..which would have given a tip of what treatment to add to your zithro..During this period you mentioned people should get mycoplasma testing on many occasions and the usual lyme igenex stuff and you obviously showed no interest whatsoever in learning anything about the real bugs.. that are often dug out of people's spines?My gut feeling is there's possably a staph areus

that still responds to zithromax. My staph areus still responds to penicillin.. I think this may be the case because the bug doesn't get an easy oppurtunity to mutate, and that the drugs possably don't reach vast amounts of bacteria to enable the mutations.> > >> > > > This is a > > > > common finding in cfs autopsies, INFLAMMATION OF THE SPINE. > > > > > > Says

who?> > >> >>

[Guest guest]

On Wed, Aug 16, 2006 at 12:15:53AM -0000, wrote:

>I used to fast alot for 24 hours or so. N=1. To be fair, by that time I

>was already showing more weird signs, such as seasonal depression, than

>I did when I was a kid.

Speaking of seasonal depression, this abstract was of great interest to

me:

Vitamin D vs broad spectrum phototherapy in the treatment of

seasonal affective disorder.

Gloth FM 3rd, Alam W, Hollis B.

The Department of Medicine, The Union Memorial Hospital,

Baltimore, land 21218-2895, USA.

Seasonal Affective Disorder (SAD) is prevalent when vitamin D

stores are typically low. Broad-spectrum light therapy includes

wavelengths between 280-320 nm which allow the skin to produce

vitamin D. This study was designed to test the hypothesis that

vitamin D deficiency might play a role in SAD. A prospective,

randomized controlled trial was conducted in a group of 15

subjects with SAD. Eight subjects received 100,000 I.U. of

vitamin D and seven subjects received phototherapy. At the onset

of treatment and after 1 month of therapy subjects were

administered the Hamilton Depression scale, the SIGH-SAD, and the

SAD-8 depression scale. All subjects also had serum levels of

25-hydroxyvitamin D (25-OH D) measured before and 1 week after

intervention therapy. All subjects receiving vitamin D improved

in all outcome measures. The phototherapy group showed no

significant change in depression scale measures. Vitamin D status

improved in both groups (74% vitamin D group, p < 0.005 and 36%

phototherapy group, p < 0.01). Improvement in 25-OH D was

significantly associated with improvement in depression scale

scores (r2=0.26; p=0.05). Vitamin D may be an important

treatment for SAD. Further studies will be necessary to confirm

these findings.

PMID: 10888476 [PubMed - indexed for MEDLINE]

Now, let's see, what would you do if you were starting a minor cult and

wanted to keep all your followers depressed and subservient to your will?

[Guest guest]

Oooh, snarky! LOL!Norman Yarvin <norman.yarvin@...> wrote: Now, let's see, what would you do if you were starting a minor cult andwanted to keep all your followers depressed and subservient to your will?