Re: The Connection Between Microwaves and Oxidative Stress - and/

[Guest guest]

Hi, .

Your comments are very much out context here in my response to Kurt that I can

only take it that your upset with the data I previously presented to you

inconsistent with your hypothesis for CFS or you didn't care for my style of

communicating it or both. I'd be glad at another time when my points or way

appear to be less of a problem for you to continue debating the facts and how

they seem more consistent with one hypothesis or another if you're so willing.

I'm not poo-pooing, as you put it, EMFs hypothetical contribution to CFS

symptoms as these may be a downstream vicious circle in some. Rather, I've been

pointing out many facts being discovered about PWCs biology that are

inconsistent with EMFs being part of core CFS pathogenisis and

are well explained up to now by the observations made by Rich as well as Amy

Yasko, Ph.D. if we're willing to accept the Autism-CFS connection.

I don't think the reference you just provided helps support your hypothesis as

you suggest, but I'm open to hearing out new data that does support it if it

comes a long. My view remains that it is a very raw boned hypothesis if it ever

is going to prove to have merit.

I think I will stick to the SNPs for poor glutathione status and it's actual

status as the lead hypothesis for CFS pathogenis since this is where so much of

the quantitative data discovered and continuing to be found consistently

connects to this illness as its roots. I hope at some point you will

acknowledge the every growing big point about these SNPs in CFS, but for now I

respect you and the fact that we disagree.

want to " Doyon " <prd34@...> wrote:

>

> ***Well, is there evidence that EMs produce oxidative stress, because

> oxidative stress reduces function of the hypothalamus seen in CFS and

> the status of this gland is the source of much of the lowered hormone

> output seen in PWCs? I know from my repleting glutathione that my

> diabetes insipidus cleared and this disorder is primarily a function

> of lowered AVH output from the hypothalamus.

>

> <> Obviously, you haven't been keeping up with the research on

> this. Of course, this is understandable since there is so much

> stuff out there that even the experts cannot keep up with it all.

> However, if you want to make expert comments on the effects of

> microwave radiation and other EMFs you should read the literature out

> there in this area. Otherwise, stop poo-pooing on what we have to

> say.>

>

> ***If EMFs are a vicious circle in some cases of CFS, this

> sensitivity could come about by heavy metals savaging the production

> of the enzymes for glutathione production within the cells, which

> mercury especialy is known can do, and EMFs action upon such

> vulnerable cells may simply cause an added tipping point such that

> some PWCs notice an effect of increased CFS symptoms from EMF

> exposure.

>

> <> I do believe you are starting to catch on!

>

> Peace,

>

> paul

[Guest guest]

,

I think that I will have to agree with Dr. Goldberg who asks that if

there were a

purely genetic reason for these illnesses than why are we seeing such a

exponential

increase in the number of people coming down with it. On the other hand, to

assume that

people will react differently to " low-level " microwave radiation due to their

genetic make-

up is a more plausible hypothesis. I don't quite understand your logic - unless

however

you are saying that CFS is solely caused by genetic factors, then and only then

could one

completely rule out microwave radiation as a possible cause. Is this what you

are saying,

, that CFS is solely caused by genetic factors? Because if you aren't then

please

explain how your pie-in-the-sky theory would preclude microwaves as a causal

factor in

this disease process.

You were asking if there was evidence if EMFs produced oxidate stress and the

quote I

provided I hope more than answered that quetion. I have provided overwhelming

evidence,

which is just a smidgen of the evidence out there btw which clearly shows that

microwave

radiation is most likely a major factor in this disease process. What you are

stating does

not come close to the weight of the evidence I have presented so far. Actually,

what you

are saying actually makes no sense whatsoever - more like the rantings of an

obstanate

person who just likes to disagree.

I'm sorry, but it seems to me that you are either just " not getting it " or

you're just plain

stubborn - or maybe both. I am not quite sure.

peace,

paul

> >

> > ***Well, is there evidence that EMs produce oxidative stress, because

> > oxidative stress reduces function of the hypothalamus seen in CFS and

> > the status of this gland is the source of much of the lowered hormone

> > output seen in PWCs? I know from my repleting glutathione that my

> > diabetes insipidus cleared and this disorder is primarily a function

> > of lowered AVH output from the hypothalamus.

> >

> > <> Obviously, you haven't been keeping up with the research on

> > this. Of course, this is understandable since there is so much

> > stuff out there that even the experts cannot keep up with it all.

> > However, if you want to make expert comments on the effects of

> > microwave radiation and other EMFs you should read the literature out

> > there in this area. Otherwise, stop poo-pooing on what we have to

> > say.>

> >

> > ***If EMFs are a vicious circle in some cases of CFS, this

> > sensitivity could come about by heavy metals savaging the production

> > of the enzymes for glutathione production within the cells, which

> > mercury especialy is known can do, and EMFs action upon such

> > vulnerable cells may simply cause an added tipping point such that

> > some PWCs notice an effect of increased CFS symptoms from EMF

> > exposure.

> >

> > <> I do believe you are starting to catch on!

> >

> > Peace,

> >

> > paul

>

[Guest guest]

Hi, .

" Doyon " <prd34@...> wrote:

>

> ,

>

> I think that I will have to agree with Dr. Goldberg who asks that if

there were a

> purely genetic reason for these illnesses than why are we seeing such a

exponential

> increase in the number of people coming down with it.

***Dr Goldberg didn't have access to the SNPs data and the low glutathione data

when he made these type comments on CFS back in the early 90's. He stopped his

practice several years ago and doesn't seem to have commented on CFS since then.

Also, I don't know of anyone now claiming CFS is purely or soley genetically

caused.

On the other hand, to assume that

> people will react differently to " low-level " microwave radiation due to their

genetic make- up is a more plausible hypothesis.

***Or become reactive to EMFs way downstream from SNPs for poor detox and other

more clearly evidenced vicious circles having taken their toll. This is what I

said to Kurt, but you mistook my meaning.

I don't quite understand your logic

***No you don't, that's right.

unless however

> you are saying that CFS is solely caused by genetic factors, then and only

then could one

> completely rule out microwave radiation as a possible cause.

***Nope. Not so. Go back to you not understanding the logic of the

SNPs/glutathione depletion hypothesis and then may be you will start

understanding my logic. I've read the materials you've offered and understand

your points, but don't agree with them. You don't understand my points and also

don't agree, which makes it seem like you simply like to disagree for the heck

of it rather than on a reasoned basis.

***I suggest withholding disagreement until you have brought yourself more

up-to-date on SNPs and perhaps reviewing Rich's 2004 AACFS poster on CFS,

http://www.phoenix-cfs.org/GluAACFS04.htm

which has a lot known science on glutathione, aside the overall hypothesis, in

which you appear to not be aware.

***I'm still learning myself, but you come-off as unarmed on these topics.

Is this what you are saying,

> , that CFS is solely caused by genetic factors?

***No, as I've indicated.

[Guest guest]

,

I think you are confusing Dr. J. Goldberg with a Dr. Jay A.

Goldstein, who was also a Dr. who treated CFS and was known for his

unique protocol in the treatment of CFS by using a number of

pharmaceuticals. He no longer practices. Dr. Goldberg however does

continue to practice. Check out the following links for an idea of

these two different practitioners with similar names.

paul

http://www.immunesupport.com/library/showarticle.cfm/ID/4351

http://neuroimmunedr.com/

> ***Dr Goldberg didn't have access to the SNPs data and the low

glutathione data when he made these type comments on CFS back in the

early 90's. He stopped his practice several years ago and doesn't

seem to have commented on CFS since then. Also, I don't know of

anyone now claiming CFS is purely or soley genetically caused.

>

>

>

> On the other hand, to assume that

> > people will react differently to " low-level " microwave radiation

due to their genetic make- up is a more plausible hypothesis.

>

>

>

> ***Or become reactive to EMFs way downstream from SNPs for poor

detox and other more clearly evidenced vicious circles having taken

their toll. This is what I said to Kurt, but you mistook my meaning.

>

>

>

> I don't quite understand your logic

>

>

>

> ***No you don't, that's right.

>

>

>

> unless however

> > you are saying that CFS is solely caused by genetic factors, then

and only then could one

> > completely rule out microwave radiation as a possible cause.

>

>

>

> ***Nope. Not so. Go back to you not understanding the logic of

the

> SNPs/glutathione depletion hypothesis and then may be you will

start understanding my logic. I've read the materials you've offered

and understand your points, but don't agree with them. You don't

understand my points and also don't agree, which makes it seem like

you simply like to disagree for the heck of it rather than on a

reasoned basis.

>

>

>

> ***I suggest withholding disagreement until you have brought

yourself more up-to-date on SNPs and perhaps reviewing Rich's 2004

AACFS poster on CFS,

> http://www.phoenix-cfs.org/GluAACFS04.htm

> which has a lot known science on glutathione, aside the overall

hypothesis, in which you appear to not be aware.

>

>

>

> ***I'm still learning myself, but you come-off as unarmed on these

topics.

>

>

>

> Is this what you are saying,

> > , that CFS is solely caused by genetic factors?

>

>

>

> ***No, as I've indicated.

>

>

>

>

>

[Guest guest]

Sometimes I Feel such a disconnect between this list (which I like so

much) and lymenet. On lymenet they take tons of antibiotics and

antimalarials, sometimes for years, and they usually get better and

better though with substantial herxes. One person who thinks she had

lyme for decades, is well after 4 1/2 straight years of antibiotics.

Another who had a severe case and whose parents both have it, writes

of this combo:

'I found that I responded very well to IV Primaxin, IV Zithromax, IV

Rocephin, and IV Levaquin, for some reason IV Clindamyacin made me ill.

I also responded to oral Doxycyline.

I just didn't understand why they stopped working in about a week.

Co-infections!

I don't know why this works, or how these things occur in the body,

BUT, when I use IV Zithromax, 200mg Plaquenil, 500mg Tindamax, 1 pill

Bactrim, 2 Malarone pills 250mg each, and 1 teaspsoon Mepron, and then

I use 750IV Levaquin for four days (by the way it makes me herx like

hell), then I follow that with 5 or 6 days of Rocephin at 2 grams per

day, I am very very very close to Symptom free.

I just continue Rocephin until I feel like its loosing a bit of

effectiveness, and when it does, I just go back on the Zith, Lev combo

for 3, 4 days.'

Now, how does this fit with the idea that the pathogenesis of CFS is

depleted glutathione? Could such a person get better just by looking

at their SNP's and repleting glutathione? And also, does anybody else

here cringe at the amount and variety of IV antibiotics along with

oral antibiotics and oral antimalarials this fellow is on? That's what

I can hardly believe. It seems so aggressive and I personally would be

completely debilitated and turn into a walking yeast hyphae .

I really would appreciate thoughts on this. The models are so

different on both the lists. In addition, on lymenet they recently

posted a new clip of the openeye documentary that is being made (the

filmmaker's sister had bad lyme). Those stories are so depressing. You

actually watch someone having a myoclonus attack (waking seizure), and

somebody else who had a port in at about age 7 (you see the picture)

and as a young woman now is still sick many years later.

> >

> > ***Well, is there evidence that EMs produce oxidative stress, because

> > oxidative stress reduces function of the hypothalamus seen in CFS and

> > the status of this gland is the source of much of the lowered hormone

> > output seen in PWCs? I know from my repleting glutathione that my

> > diabetes insipidus cleared and this disorder is primarily a function

> > of lowered AVH output from the hypothalamus.

> >

> > <> Obviously, you haven't been keeping up with the research on

> > this. Of course, this is understandable since there is so much

> > stuff out there that even the experts cannot keep up with it all.

> > However, if you want to make expert comments on the effects of

> > microwave radiation and other EMFs you should read the literature out

> > there in this area. Otherwise, stop poo-pooing on what we have to

> > say.>

> >

> > ***If EMFs are a vicious circle in some cases of CFS, this

> > sensitivity could come about by heavy metals savaging the production

> > of the enzymes for glutathione production within the cells, which

> > mercury especialy is known can do, and EMFs action upon such

> > vulnerable cells may simply cause an added tipping point such that

> > some PWCs notice an effect of increased CFS symptoms from EMF

> > exposure.

> >

> > <> I do believe you are starting to catch on!

> >

> > Peace,

> >

> > paul

>

[Guest guest]

,

Thanks for the Rich's article. I found it very informative. Please

provide links to any articles on SNPs that you feel preclude the fact

that microwaves are a causal factor in CFS and other Neuro Immune

Endocrine Disfunction Syndromes.

***I suggest withholding disagreement until you have brought yourself

more up-to-date on SNPs and perhaps reviewing Rich's 2004 AACFS

poster on CFS,

> http://www.phoenix-cfs.org/GluAACFS04.htm

> which has a lot known science on glutathione, aside the overall

hypothesis, in which you appear to not be aware.

<>

I have read Rich's poster session paper and I just have to say that

this in no way precludes microwave radiation as a causal factor in

glutathione depletion. On the contrary, the hypothesis that

microwaves are a causal factor in CFS fits right in with his theory

of glutathione depleteion. I believe that Rich would concur with this

statement.

Did you actually read the quote I posted by Dr. Gerald Goldberg (not

to be confused with Dr. J. Goldberg or Dr. Jay A. Goldstein),

which you so off-handedly dismissed:

_Consistently in the scientific literature has been noted that

animals and humans subjected to microwave radiation show decreased

levels of SOD, catalase, glutathione, CoQ10 along with evidence of

increased byproducts of oxidative stress to cell membranes, MDA._

Here's more evidence to support this:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=PubMed

_[Effect of electromagnetic field produced by mobile phones on the

activity of superoxide dismutase (SOD-1) and the level of

malonyldialdehyde (MDA)--in vitro study]

[Article in Polish]

Stopczyk D, Gnitecki W, Buczynski A, Markuszewski L, Buczynski J.

Zakladu Medycyny Zapobiegawczej i Promocji Zdrowia, Wojskowej

Akademii Medycznej w Lodzi. darstop@...

The aim of the study was to assess in vitro the effect of

electromagnetic field produced by mobile phones on the activity of

superoxide dismutase (SOD-1) and the level of malonyldialdehyde (MDA)

in human blood platelets. The suspension of blood platelets was

exposed to the electromagnetic field with the frequency of 900 MHz

for 1, 3, 5, and 7 min. Our studies demonstrated that microwaves

produced by mobile phones significantly depleted SOD-1 activity after

1, 5, and 7 min of exposure and increased after 3 min in comparison

with the control test. There was a significant increase in the

concentration of MDA after 1, 5, and 7 min and decrease after 3 min

of exposure as compared with the control test. On the grounds of our

results we conclude that oxidative stress after exposure to

microwaves may be the reason for many adverse changes in cells and

may cause a number of systemic disturbances in the human body.

PMID: 12474410 [PubMed - indexed for MEDLINE]_

To rephrase, Dr. G. Goldberg is saying that human exposure to

MICROWAVES results in DECREASED LEVELS OF GLUTATHIONE - and SOD,

CATALASE, and CoQ10 along with evidence of OXIDATIVE STRESS to cell

membranes as shown by an increase in MDA or malonyldialdehyde.

Another factor concerning microwave radiation that fits into Rich's

theory is that it not only acts as a stressor on the human body but

also causes the adrenals to excrete more cortisol, (which is probably

a factor leading to adrenal exhaustion. This also fits in with the

theory that the adrenal exhaustion plays a major role in this disease

process.)

" ...Test animals appear not to know they are stressed, yet blood

tests show high levels of cortisone, a substance released in the body

under conditions of long-term disease,as opposed to adrenaline, which

is released in a fight -or-flight response. Monkeys exposed too a 200

gauss magnetic field for four hours a day showed a generalized stress

response for six days which then declined, suggesting that animals

had adapted to the exposure. Reseachers who stop the experiment at

that point can reasonably conclude that there has been no long-term

damage. However, in subsequent experiments, it has been found that

when the exposure continues, hormone and immune levels will fall far

below normal and remain there. The immune system becomes exhausted

and unable to rebound, opening the body to infectious diseases and an

inability to fight malignancies. "

From Electromagnetic Fields, pp. 128-129

peace,

paul

[Guest guest]

Hi Jill,

>>>>Sometimes I Feel such a disconnect between this list (which I like so

> much) and lymenet<<<<<

Is that really a surprise? Lymenet is for Lyme and this is for CFS and FM.

About the antibiotics, since the beginning of the " original CFS " , as in

ME/CFS/80s outbreak...

Specialists/Researchers have noted an " exquisite sensitivity " to drugs.

Many of us cannot tolerate/are allergic to many antibiotics, and could never be

on those protocols.

{Not to mention the long term side effects that anyone might experience}

Besides this precluding the extensive use of them...with only a few tolerated,

and several common infections becoming drug-resistent...this is a scary state,

if one gets a vicious pneumonia, for instance.

I had such a gnarly case this year, as my doctor said " we are running out of

antibiotics to use for you, and none are touching it " . I took 2 different ones,

with little effect, and one that put me in the ER. Sulpha intolerance can

accompany CFS, also.

About the Lyme successes, I have heard of them, and a friend had dramatic

relief, but not cure. Some people tell me they are not seeing many people

getting well. Different groups maybe.

JoAnne had an interesting answer.

One of the questions from CFS world, where we test positive for many or most

pathogens tested is...what is it that causes so many titres to appear, rise, and

or remain high in us?

With signs of a chopped up immune system, glutathione malfunction, and low and

erratic blood flow, plus more...just treating bugs will not get us well.

Dr. Cheney told me he spent years chasing bugs (and using pharmaceuticals). Now,

he is focused more on " the terrain " of the body. And Neutraceuticals, which are

powerful, but more gentle.

This is also an age-old question in Science/Medicine

Bugs vs. Terrain.

About the video...have you seen the 2 documentaries on CFS? One is called

" Living Hell " and one is called I Remember ME " . Or read accounts of the 25% most

severe ME/CFS? Sophie, for instance, who died. Her story I think was posted

here. I will post anothers' soon. (I'm toast right now).

Seizure is not uncommon in CFS.

FWIW,

Take care,

Katrina

> > >

> > > ***Well, is there evidence that EMs produce oxidative stress, because

> > > oxidative stress reduces function of the hypothalamus seen in CFS and

> > > the status of this gland is the source of much of the lowered hormone

> > > output seen in PWCs? I know from my repleting glutathione that my

> > > diabetes insipidus cleared and this disorder is primarily a function

> > > of lowered AVH output from the hypothalamus.

> > >

> > > <> Obviously, you haven't been keeping up with the research on

> > > this. Of course, this is understandable since there is so much

> > > stuff out there that even the experts cannot keep up with it all.

> > > However, if you want to make expert comments on the effects of

> > > microwave radiation and other EMFs you should read the literature out

> > > there in this area. Otherwise, stop poo-pooing on what we have to

> > > say.>

> > >

> > > ***If EMFs are a vicious circle in some cases of CFS, this

> > > sensitivity could come about by heavy metals savaging the production

> > > of the enzymes for glutathione production within the cells, which

> > > mercury especialy is known can do, and EMFs action upon such

> > > vulnerable cells may simply cause an added tipping point such that

> > > some PWCs notice an effect of increased CFS symptoms from EMF

> > > exposure.

> > >

> > > <> I do believe you are starting to catch on!

> > >

> > > Peace,

> > >

> > > paul

> >

>

[Guest guest]

> Is that really a surprise? Lymenet is for Lyme and this is for CFS

and FM.

That's a misnomer, as the most common symptoms of chronic lyme ARE CFS

and FM. There's a huge overlap, as you know ,the CFIDS journal last

year put a big tick on their cover. Many on this list have lyme,

so...I just find the disconnect alarming, that over there, its drugs

drugs drugs drugs and over here it's so different. I don't necessarily

think that's a good thing.

> This is also an age-old question in Science/Medicine

> Bugs vs. Terrain.

That's true. But with such isolated viewpoints not coming together,

it's a bit difficult.

>

> About the video...have you seen the 2 documentaries on CFS? One is

called " Living Hell " and one is called I Remember ME " . Or read

accounts of the 25% most severe ME/CFS? Sophie, for instance, who

died. Her story I think was posted here. I will post anothers' soon.

(I'm toast right now).

No, and I don't want to and I recommended to Sue not to re-read

that story. The mind is powerful in more ways than one. Hope is

important in releasing feel-good chemicals in the body and

ameliorating the stress response which is tied in to the immune

response, and hope is key to pursuing strategies that will help.

I suppose these are like two venn diagrams that somewhat overlap. For

those who can tolerate the drugs, eliminating the pathogens may help

restore the system and glutathione. For those who can't, this is the

only way anyway, I guess.

[Guest guest]

Hi Jill,

>>>> the most common symptoms of chronic lyme ARE CFS

> and FM.<<<<<

CFS IS NOT " A SYMPTOM " ! I don't know if you think or mean that, but please don't

say that on a CFS list. It's very misleading, to *newcomers*, and for all,

frankly...diminishing.

While the CDC has watered down the definition to a more encompassing cluster of

(disabling) symptoms,

For those of us who have Myalgic Encephalomyelitis...ME/CFS...the only name we

have at the CDC in the US is still...CFS.

There is no reason for us to buy or perpetuate the obscuring, convoluting that

the CDC has caused.

ME/CFS is a multi-system debilitating Neurological disease. See World Health

Organization Health Code...but especially Canadian Case Definition, or Ramsey's

description for the true picture of the disease we have.

Even they do not say CFS is just a symptom...

I brought up the videos in case you thought that. Tho, they are not at all the

full picture, either.

For anyone new, or wishing to know the history of the CFS epidemic in the US,

the book " Osler's Web " , is the closest to telling us about it's explosion and

mishandling by the Government...in other words, how we got in the mess we are

all in now..

ME/CFS or " CFS-Like " ...(sitting/lying at computers alone, trying to piece it

together ourselves).

>>>>There's a huge overlap, as you know ,the CFIDS journal last

> year put a big tick on their cover.<<<<

Yes (It's called the CFIDS Chronicle, from the CAA).

>>>That's true. But with such isolated viewpoints not coming together,

> it's a bit difficult.<<<<

Many have been frustrated about the Science data not being compiled in one

place. I have the impression this is not unusual in Science. Delving into it a

bit more, I think I see why the Researchers themselves do this, (besides ego).

They need to focus on their own hypothesis to fully develop and test it.

Some Lyme lists I have seen do incorporate non-drug treatment to a certain

extent. Perhaps more will come....have you sought this among the researchers?

I don't know if anyone comes on Lyme lists and tells people they do not really

have Lyme, which is what ME/CFS people deal with constantly, since day one, from

many communities/theories.

Those identifying with ME/CFS seem to find more palatable the idea of over-lap,

but even here, that is individual.

The CFS lists seem to include about every theory around, and drug and non drug

treatments. Some prefer to attach to a sole cause/theory...some prefer to

incorporate them...concurrently, or simultaneously. After 2 decades or more,

some have approached their illness from just about every angle...with widely

varying results. This has made for a rich education...which can be

mind-boggling/numbing, and/or hope-inspiring...always something else to try, or

improve.

>>>> No, and I don't want to and I recommended to Sue not to re-read

> that story.<<<<

That's a personal decision, of course.

I don't remember if you have had severe ME/CFS or Lyme, or had years bedridden.

(I apologise). But what you are saying gives you hope...would only drive the

severe further into a dark, isolated closet. If one, or their family member is

confined to bed 24/7...not knowing there are others or a language to put to the

experience can be a more terrifying and very hopeless state.

ALso, you may not have had this experience, but knowing about the most severe

cases can be scary...but it is so educational...for *survival* tools, for the

language, the reality check, for compassion, for inspiration, for gratitude.

Isolation is often said to be the most tormenting, demoralizing aspect of our

disease.

When I was still pretty severe, and suffering, I had a friend who'd come around

for some support. She then stopped calling, giving no explanation. A few years

later, I found that SHE had come down with ME/CFS, possibly Lyme. She came to

the ME/CFS Support Group I ran, for support. She told me that she stopped

calling, because she did not know what to say to me, and was terrified in the

face of such a serious disease.

So much so, that she took out the highest amount of Disability available at her

job as an Engineer...(I had never had good benefits and she'd seen the results.)

When she began to have to fight to keep it, she was losing everything and became

very suicidal. I had several calls of talking her out of it. She was totally in

the dark about the disease. Now I had become her support system.

Crazy, eh?

As my symptoms and diagnoses progressed, I had many turning points on whether to

learn about more severe cases. THis means of ME/CFS, FM, MCS, Mold, EMFs,

Dysautonomia, Dystonia, Several more. Standing at the precipice...I usually have

investigated...fine-tuning what *I* could handle...and do not regret it. If it

was a place I did end up...I had knowledge,tools, role models and guts to do

it..or at least know where to go for these.. If I did not have to " go there " , it

magnified my gratitude, compassion, passion for living, passion for advocating.

I ran the support group for 10 years, and a phone line, including suicide

prevention.

We had a serious cluster here with minimal treatment, and for 5 years, I lost a

former ME/CFS peer...per year...to suicide. That kept me dedicated to the group

and phone for some time....(tho at times feeling the opposite) which may have

saved my own life. The same being true about other ME/CFS advocacy, and staying

educated, as possible...Knowledge is Power. THese are where I have honed many

survival tools that I've used. And I'm still here. ANd out in my community every

day, even for brief time. I wasn't sure I'd ever see the day.

But, a toll is taken too...in Health itself, and I think I have some kind of

PTSD. Being a witness and surviver has a roller coaster effect.

ALot of other ME/CFS people have done/experienced the same and much, much more.

Living much more quietly,privately now.

For long term, severe cases, there are many profound and personal decisions to

face, to be living as fully and connected as possible. It's all quite

multi-dimensional...amazing at times.. And, to each, her/his own.

Katrina

>

>

> > Is that really a surprise? Lymenet is for Lyme and this is for CFS

> and FM.

>

> That's a misnomer, as the most common symptoms of chronic lyme ARE CFS

> and FM. There's a huge overlap, as you know ,the CFIDS journal last

> year put a big tick on their cover. Many on this list have lyme,

> so...I just find the disconnect alarming, that over there, its drugs

> drugs drugs drugs and over here it's so different. I don't necessarily

> think that's a good thing.

>

>

> > This is also an age-old question in Science/Medicine

> > Bugs vs. Terrain.

>

> That's true. But with such isolated viewpoints not coming together,

> it's a bit difficult.

>

> >

> > About the video...have you seen the 2 documentaries on CFS? One is

> called " Living Hell " and one is called I Remember ME " . Or read

> accounts of the 25% most severe ME/CFS? Sophie, for instance, who

> died. Her story I think was posted here. I will post anothers' soon.

> (I'm toast right now).

>

> No, and I don't want to and I recommended to Sue not to re-read

> that story. The mind is powerful in more ways than one. Hope is

> important in releasing feel-good chemicals in the body and

> ameliorating the stress response which is tied in to the immune

> response, and hope is key to pursuing strategies that will help.

>

> I suppose these are like two venn diagrams that somewhat overlap. For

> those who can tolerate the drugs, eliminating the pathogens may help

> restore the system and glutathione. For those who can't, this is the

> only way anyway, I guess.

>