Re: Phil - are you recovered?

[Guest guest]

I seriously feel that you never FULLY recover from it-I have found that some

people if they really rest at the beginning and vitamins etc can get over it to

a degree but it is always lurking there. When major stress comes or you get

really run down it rears its ugly head. I have had it for 25 yrs but then I

have never learnt to pace myself sigh

Regards Nerida

[Guest guest]

Hi all,

This understanding which Nerida has is precisely what I've understood

all along. My doctor has never promised complete recovery forever. Only

remission is possible; and, as I have stated before, I do know people

who have that!! BUT, as Nerida states, stress (especially something

major be it physical or emotional) can send us right back to being ill

again.

I've read on other boards from people who CLAIM complete recovery, but

the also state that they had to utterly change everything about their

diet, vitamins, exercise, lifestyle and in some cases where they lived

(i.e. those who had sensetivity to mold and also were suffering from

those toxins).

I KNOW that somehow as soon as I am 'better' enough (really bad grammer

here!!)I will HAVE to make some major life style changes and changes in

what I do for a living. I am MORE than happy to do this; looking

forward to it!!

It is just having the patience to wait til I'm 'there.'

Jane

>> I seriously feel that you never FULLY recover from it-I have

>found that some people if they really rest at the beginning and

>vitamins etc can get over it to a degree but it is always lurking

>there. When major stress comes or you get really run down it rears

>its ugly head. I have had it for 25 yrs but then I have never learnt

>to pace myself sigh

> Regards Nerida

>

[Guest guest]

--- no thank fully no i have not had this but have researched this

quite a bit

andf ound quite a few common principles to employ

philIn CFAlliance , Jane Luft wrote:

>

> Good Morning Phil,

> I was just curious - are you fully recovered from cfids? You

have an enormous amount of info and I was wondering if this is what

has worked for you.

> Thanks a ton,

> STL Jane

>

> pjb12345uk wrote:

> ---hi maraly i know where i would start and that is by

ensuring

> every waste was on the outside of my body not inside

>

> colonics enemas swaet baths massage special diets water intake etc

> etc

>

> having done that and you may feel worse for a while as you are ding

> this

>

[Guest guest]

---yes jane big lifestlye changes you mentioned quite a few

and 2 big principles to employ

what we think and eat make us what we are to a large degree

p

In CFAlliance , " ferynnghee " wrote:

>

> Hi all,

> This understanding which Nerida has is precisely what I've

understood

> all along. My doctor has never promised complete recovery forever.

Only

> remission is possible; and, as I have stated before, I do know

people

> who have that!! BUT, as Nerida states, stress (especially

something

> major be it physical or emotional) can send us right back to being

ill

> again.

[Guest guest]

Hi Jane,

I had a few comments and questions for him also but for some reason it

was not passed on to this forum. It's one thing to come on and state

something specific that helped a person suffering from this illness or

other like diseases even, but to come here and posting like the

ultimate authority when not even asked is quite another. To learn he

doesn't even have this inferiates me...sorry if that offends anyone but

only us living with this knows what we fight to do daily in trying to

gain some ground back. Phil, it's just not as easy as you state. I

would not attempt to try a couple things you mentioned but sure wish

there were answers in treating ourselves without killing ourselves off.

One cannot just take these suppliments with no thought as to the

mixtures, tolerances, reactions etc as we know before the chemical

based meds came into play....we did use herbs and such. To be

responsible, there has to be an authority ..Doctor (white coats you

call them) or another but with some " authority " not just opinion.

> Phil

> I don't want this to come out wrong, but what would make you

research CFIDS? Are you a student? Or do you know someone affected?

> STL Jane

>

> pjb12345uk wrote:

> --- no thank fully no i have not had this but have

researched this

> quite a bit

> andf ound quite a few common principles to employ

> philIn CFAlliance , Jane Luft <janel450@> wrote:

>

[Guest guest]

Well , that's kinda how I was looking at it. All this time, when he

posts with such authority,I thought he had cured himself, I thought he spoke

from personal experience. I was absolutely shocked to find he has not had this

disease, but maybe he knows someone who does and this is working for them, he

didnt' really clarify. Sometimes, his posts are so long, I have to save and

read them in small portions, it's too much to take at once.

I agree you must clean out your system, I think that is good for everyone, but

I know it hasn't cured me personally yet. I watch my food intake, I try to get

up and move around, at bare minimum to bathroom and kitchen,but to try to

exercise would kill me. And I get the impression I'm not alone when saying

finances are not optimal for buying all types of pillows, mattresses, etc. I'm

struggling just to pay the bills and feed my family. If these ideas were

absolutely proven to cure me, I would find the money to do it,but I've already

spent enough on " natural " remedies, vitamins, minerals, etc which havent'

helped. I can't keep throwing good money after bad.

I appreciate the fact he is researching and offering information, but I don't

know the source other than Edgar Cayce. I'm a little confused on his

motivation...... Maybe he's the next great CFIDS researcher ?............that

would be awesome, but ... I just don't know. Help us to understand, would you

please Phil? Thanks

STL Jane

[Guest guest]

hey Jane,

Just one more point, I encourage anyone that reads, hears or even just

suggests something might help us with this illness. My biggest

objection is the statements made to those talking about Doctors and

Medicine that he has to use words like " I'm amazed at the ignorance "

to those still seeing doctors or taking meds. Nobody needs to be told

what they are doing for themselves is wrong. We are not all clones of

each other and my point to him basically was to show some respect and

kindness in his long winded, put me to sleep posts.

God Bless,

/Dutchie

[Guest guest]

Yes - I agree...we are all just muddling along, trying to do the best we

can with all the info out there. Unfortunately, we are not all blessed with

great doctors, who understand. Ignorance is such a strong word. I haven't met

anyone with the answers yet! But I continue to search...................

Bless you,

STL Jane

[Guest guest]

Jane and ,

I responded to him directly about his posts being too long and too

judgemental. He stated that people should know what to do and he is only

helping. I agree with you both. He is very sure of his answers but doesn't even

have a clue about what it's like to be one of us. I personally don't even make

enough to cover my rent, let alone pay for expensive treatments that may or may

not even work for me, so I have to go to doctors that my Medicare will pay for.

Sometimes Medicare doesn't even cover drugs if they are too expensive. I just

skip his responses because they are novels and I can't even read them because I

start to loose track of what his point even his. I am more likely to listen to

the patient, compassionate persons that have this disease for most of my

information outside of a doctors office. Thanks to all of you and God Bless you

for being here.

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Thanks -

But how would people know what to do? There is SO MUCH info out there to weed

thru, and personally, anymore, I don't have the energy or concentration level

needed to decipher and try EVERYTHING, much less the financial resources, like

you said.

STL Jane

Howton wrote:

Jane and ,

I responded to him directly about his posts being too long and too judgemental.

He stated that people should know what to do and he is only helping. I agree

with you both. He is very sure of his answers but doesn't even have a clue about

what it's like to be one of us. I personally don't even make enough to cover my

rent, let alone pay for expensive treatments that may or may not even work for

me, so I have to go to doctors that my Medicare will pay for.

[Guest guest]

Thankyou very much . With all that we deal with daily, it's nice

to have our feelings supported in a realistic way. I am always double

thinking myself anymore on all things before I act upon them (wise but

hasn't been my way in the past lol) I am hoping Phil is trying

genuinely to help others here but needs to hear himself. This too is

stress producing and certainly not the reason I come here and is a good

reason not to hang around if it persists. I really don't like to be

sensored as I was by this forum when I used no bad language but

explained how I felt about his posts to two different people that were

desperate for help. If his condescending and rude comments are allowed

but others cannot address them equally...this is not a forum for me. We

arn't in elementary school and should be able to be honest with one

another. After all, like many of you....I considered you my friends

and the only ones I can be honest with and know I will recieve the same

back.

God Bless and thankyou loads!!

(Dutchie)

> Howton wrote:

> Jane and ,

> I responded to him directly about his posts being too long and too

judgemental. He stated that people should know what to do and he is

only helping. I agree with you both. He is very sure of his answers but

doesn't even have a clue about what it's like to be one of us. I

personally don't even make enough to cover my rent, let alone pay for

expensive treatments that may or may not even work for me, so I have to

go to doctors that my Medicare will pay for.

>

[Guest guest]

Amen to all that! Vickie

wrote: Thankyou very much . With

all that we deal with daily, it's nice

to have our feelings supported in a realistic way. I am always double

thinking myself anymore on all things before I act upon them (wise but

hasn't been my way in the past lol) I am hoping Phil is trying

genuinely to help others here but needs to hear himself. This too is

stress producing and certainly not the reason I come here and is a good

reason not to hang around if it persists. I really don't like to be

sensored as I was by this forum when I used no bad language but

explained how I felt about his posts to two different people that were

desperate for help. If his condescending and rude comments are allowed

but others cannot address them equally...this is not a forum for me. We

arn't in elementary school and should be able to be honest with one

another. After all, like many of you....I considered you my friends

and the only ones I can be honest with and know I will recieve the same

back.

God Bless and thankyou loads!!

(Dutchie)

> Howton wrote:

> Jane and ,

> I responded to him directly about his posts being too long and too

judgemental. He stated that people should know what to do and he is

only helping. I agree with you both. He is very sure of his answers but

doesn't even have a clue about what it's like to be one of us. I

personally don't even make enough to cover my rent, let alone pay for

expensive treatments that may or may not even work for me, so I have to

go to doctors that my Medicare will pay for.

>

[Guest guest]

Hi and Jane,

I'm glad to see someone brought this up... When Phil posted, on ore

than one occaion I am almost certain I posted in reply that for many of

us on this board we are dealing with a different can of worms in terms

of a medical system; that is to say, Medicarein the US rather than a

socialized medical system such as in the UK. (He seemed to be coming

from there; meaning, his experience is with a different sort of medical

system and doctor-patient relation than wha we have). I was never TOLD

this, it wasjust strongly implied by his wording. To get frustrated

with our medical systems is pretty universal, I guess. BUT I DO object

to all the damn Edgar Cayce hippy trippy stuff. Please. I know you take

him seriousl, Phil, and there MUST have been some good points (or else

in my youth I wouldn't have read his stuff forty or something years ago

back when I was a hippy) but to me that stuff is pretty null and void

here. While I consider myself to be open minded and do consider alot of

different approaches, his (Cayce's) stuff isn't something I 'do.' The

guy practiced during his lifetime in a variety of ways meaning

prognosticating and so on, but I do not think there is any medical

stuff of value to bring out of it HERE for us. Someone WANTS to, fine,

but that whole subject really got to me. I do not mean or intend to be

insulting; I just tend to speak my mind which sometimes can offend;

this is not my intention, but when you are feeling as I am phsically

(weather is quite humid and NOT fun at the moment)I get kind of cranky.

Jane, one with the hound

>> Well , that's kinda how I was looking at it. All this

time, >when he posts with such authority,I thought he had cured

himself, I >thought he spoke from personal experience. I was absolutely

shocked to >find he has not had this disease, but maybe he knows

someone who does >and this is working for them, he didnt' really

clarify. Sometimes, >his posts are so long, I have to save and read

them in small portions, >it's too much to take at once.

--Note;I did not quote the above post in it's entirety.--

[Guest guest]

Thank you, .

I also responded some time ago to Phil and never read my response. I don't know

if it was censored or if it was published and I was too foggy to notice it.

This isn't a forum for anyone to push their own ideas/ideologies. We share info.

that's been helpful to us or that we've read about, as well as our personal

expreriences and questions.

Also, over-long posts should be edited or sent back to the sender for editing.

I can't plow through pages of this stuff.

Also, maybe we should each make clear what country we're writing from. Some

things may be paid for or supported by the health care system in the UK for

example, that aren't paid for in the U.S.

All the best,

Theresa

Re: Phil - are you recovered?

Thankyou very much . With all that we deal with daily, it's nice

to have our feelings supported in a realistic way. I am always double

thinking myself anymore on all things before I act upon them (wise but

hasn't been my way in the past lol) I am hoping Phil is trying

genuinely to help others here but needs to hear himself.

[Guest guest]

---mmn interest --i am interested and there are a lot of common

principles bordering on the treatment of depression to some extent.

particularly in terms of energy .

p

In CFAlliance , Jane Luft wrote:

>

> Phil

> I don't want this to come out wrong, but what would make you

research CFIDS? Are you a student? Or do you know someone affected?

> STL Jane

>

> pjb12345uk wrote:

> --- no thank fully no i have not had this but have

researched this

> quite a bit

> andf ound quite a few common principles to employ

> philIn CFAlliance , Jane Luft <janel450@> wrote:

>

[Guest guest]

---mmn interest --i am interested and there are a lot of common

principles bordering on the treatment of depression to some extent.

particularly in terms of energy .

p

In CFAlliance , Jane Luft wrote:

>

> Phil

> I don't want this to come out wrong, but what would make you

research CFIDS? Are you a student? Or do you know someone affected?

> STL Jane

>

> pjb12345uk wrote:

> --- no thank fully no i have not had this but have

researched this

> quite a bit

> andf ound quite a few common principles to employ

> philIn CFAlliance , Jane Luft <janel450@> wrote:

>

[Guest guest]

---hi jane

mmn to some extent i am speaking from very personnel experience

because there are some principles which overlap from the treatment

of depression which i have had for years ,and that does overlap with

energy .or a lack of it .

you question my motivation mmn , well i will put it like this if

having had a probelem and knowing the battle the suffering and the

pain you have undergone ,,if this has not moved you in as much as

having more empathy with people ,more compassion and built in a

willingness to share with others i ask you --what have you learned

problems come sometimes to teach us things and build qualities which

we need ----like compassion ,empathy, tolerance, understanding etc

there is alot you can try ,,tackling this from a physical,mental

psychological, spiritual point of view.

all of these thigs can be massive in there influence on us literlay

knocking us off our very feet

you see unless you know the cause you can treat it directly with

perhaps utilising just one of these things or a small combination

however many do not know the cause ,of course perhaps a good

psychic would be able to tune in and tell us or i wonder about a

good kineisologist could they tell us .and it might be different for

each of us too--that needs understanding .

so where do we go from here ....i suppose you have to have people

who are willing to try a few things and be guided a little, who ask

for evidence to support claims .

or perhaps you could ask people to go within themselves to ask for

the answers , or you could also try prayer for answers too.

that might be controversial and sometimes that is needed .

p

[Guest guest]

Phil,

This is all very nebulous. Foggy.

I'm sorry you've suffered from depression--it's good that you've learned so much

from the awful experience.

Many years ago, before I had CFIDS, I was also depressed for a time. I went to a

psychiatrist who diagnosed me--I had no idea what depression was or that there

was treatment for it. Through meds and cognitive therapy I made an amazing (to

me) recovery. I vowed never to allow myself to become/stay depressed again. I

have kept that vow. Whenever I feel myself sinking, I see the therapist.

Then I became ill with CFIDS. I learned the difference between the depression

I'd had before, which was " endogenous " --probably mostly genetic in origin. And

the depression that comes from having a chronic illness which has few

treatments, no known cause and no cure. Very, very different.

I've had thousands of days when will power would not get me out of bed. A loving

companion at times was helpful emotionally. But nothing really helped the

physical symptoms of this illness.

I also believe in spiritual approaches, etc. We are all composed of

mind/spirit/body. So of course our mental state affects our health. But this is

not a psychologically based illness.

Sorry to ramble on. I just can't figure out where you're coming from. Your

intentions are good, I'm sure, but you don't have CFIDS.

With blessings,

Theresa

[Guest guest]

Hello, --

Thank you for the compliment! I really appreciate it. So often I feel foggy and

don't know if what I'm writing really makes sense. And I needed a pat on the

back today--it's been a rough week physically and emotionally.

I'm lucky to be able to see a therapist--she's not a psychiatrist but an LCSW.

Her usual patients are the very elderly--I tell her that I fit right in because

I usually feel about 90 :>) She works for a non-profit so can see me on a

sliding scale and if I can't pay that week, well I can't pay.

She's helped me stay on track and not beat myself up for what I can't do. She

knows this illness is real and helps me be realistic. And I feel free to tell

her what I can and can't do. But sometimes she sees that I'm " wallowing " a bit

more or longer than necessary and helps me to see that. I've learned to

" re-frame " a lot of things, but it doesn't always work :>) And I've learned

that's okay..this is all a process.

Although I'd had the illness since 1976, it went in cycles until 1987 when it

hit me like a ton of bricks. Before that, I'd be " normal " between bouts. Since

1987, nothing's been normal :>) But there's improvement..

Yesterday I had an anxiety attack. Not panic, really, just a lot of anxiety. I

looked at it to see where it was coming from, instead of " running " from it. I

realized that I had a lot of good reasons to feel anxious!! After that, I made a

" to do " list for the week--just doing that helped make me feel less overwhelmed.

Right now I don't take any medication specifically for anxiety but I'm going to

ask my therapist about it on Wed. I'd rather use meditation, etc., but it's not

worth the suffering if there's a med that might help without too many

side-effects.

You're right about saying good-bye to what we once were, but not giving up hope

for the future. I realize as I get older and see my " normal " friends get older,

that we all have to give up some of what we once were...life just keeps

changing.

Thanks again for writing!

God bless you, too! (As they say here in the South-- " God bless your heart! " )

Theresa

[Guest guest]

Thank you Phil - I appreciate your response. I also appreciate the fact you are

trying to help us out, but I know that depression and CFIDS are two very

different animals. The great thing about this group is everyone can identify -

we are all in the same boat: some symptoms vary, but generally we all know how

the others feel. We share our ideas, things that have worked for us and will

hopefully help someone else out. This disease is SO MUCH MORE than the

depression aspect.

I agree to cleaning your system, EVERYONE should do that with all the garbage

our systems get clogged up with. But so far, nothing I've tried has cured me,

nor anyone else I know of that has been afflicted with CFIDS/ME.

One of the problems we have is memory and concentration. It is very difficult

to sift thru a long, choppy post. Again, I know you are trying to help, but

most have been battling this disease for years and to get advice from someone

who doesn't really understand what we are going thru, and to be told in such a

vehement fashion that we are not in tune with our bodies and we should know

better is painful and incorrect.

I have never been more in tune with my body - I have been forced to listen

Very carefully, and maybe that was part of my problem before being stricken, I

don't know, and unfortunately, no one really has that answer. No one knows why

we are hit, what caused it or the answer to a cure. Until then, we all fumble

about, trying just about everything out there just to make it thru another

painful, confused day.

So I believe you may have good info for the depression, but for the rest of

it, I think we would appreciate your understanding in why we may feel that the

tone of some of your posts feel a little degrading and authoritative.

I have a strong faith and rely on it to get me thru - I'm with you 100% on

that one!

STL Jane

[Guest guest]

AMEN!!!,

Theresa, I'm in the same boat as you and you conveyed my feelings exactly. I'm

sure he (phil) is well intentioned, but as much as he would like to think he's

like us, his medical problems are not created by the same by the same things as

far as I've heard. He sounds very authoratative, yet I feel anything he's said

as fact.

Thanks for all of you here, it helps me deal with things at home knowing

someone else can relate to what I go through daily. Phil, please be a little

more open minded about the fact that clinical depression and the depression felt

by chronically ill patients are two different things. I think it is great that

you share your research findings, but know that these options aren't always

helpful to everyone.

God Bless All,