Re: Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous or endogenous?

[Guest guest]

Hi ,

Your link below to your earlier post which I must have missed at the

time is excellent - my feelings exactly. I have been fortunate to have

only had one episode of depression in my (now 37 year) history of the

illness, but it was very bad and I'm sure the result of toxic overload,

(and not helped by the further toxic overload of the rubbish your given

to treat it). I have had panicky symptoms with my ME over the years as

well but unquestionably endogenous and in no way connected to my

mind-set. Indeed times of greater stress such as degree finals, etc,

have found me most capable and not at all stressed by them, whereas in

relapse the smallest thing can seem like an uphill battle. Your link

expresses it very well.

Rosie

http://health.

</message/59692>

/group//message/59692

So there!

-

[Guest guest]

Thank you Rosy for your testimony. Wow, 37 years are really a lot, how are you

today? Have you found anything that could help you and that made the difference

among all other things we usually are given?

And also, what did you do in those depression/anxiety few moments you had, you

took something or simply waited for them to go away alone?

Massimo

RE: Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous

or endogenous?

Hi ,

Your link below to your earlier post which I must have missed at the

time is excellent - my feelings exactly. I have been fortunate to have

only had one episode of depression in my (now 37 year) history of the

illness, but it was very bad and I'm sure the result of toxic overload,

(and not helped by the further toxic overload of the rubbish your given

to treat it). I have had panicky symptoms with my ME over the years as

well but unquestionably endogenous and in no way connected to my

mind-set. Indeed times of greater stress such as degree finals, etc,

have found me most capable and not at all stressed by them, whereas in

relapse the smallest thing can seem like an uphill battle. Your link

expresses it very well.

Rosie

http://health.

</message/59692>

/group//message/59692

So there!

-

[Guest guest]

Hi Massimo,

Fortunately (I suppose) I was cycling with ME between 1970 and 1994 -

ie; I would have a few years in relapse and then a few in relative

remission (though never 100%). In 1994 I crashed badly and have not

been out of relapse since then, though I have had years which weren't so

truly awful as others. In 2004 I had the crash of all crashes and this

is when I had the depression. As I intimated, the drugs given to try to

address this depression made me 100 times worse and I went from moderate

endogenous depression to suicidal. Anyway to cut a long story short; I

was eventually given a tiny amount of dothiepin (tricyclic

antidepressant) , a dose which many will say is non-therapeutic, but

given my hyper-resonsiveness to meds I think had some bearing and

certainly helped me through the dreadful withdrawal process made

necessary by the drugs I had been given improperly. I soon left the

depression behind and am now thinking about trying to get off this small

amount of the tricyclic, and have been able to access a syrup version of

it which will enable me to titrate downwards very slowly and carefully.

Re the panicky type symptoms - they would come and go, but I really just

learned to grit my teeth and live with them - not easy when your

endocrine system is feeling like you have just had a near miss with a

juggernaut 24/7 (ie; even while asleep). During 1994-1996 this

sensation was with me all the time - it was very tiring and not very

pleasant, but I have suffered worse symptoms in this illness. TBH, once

the penny had dropped and I realised that how I felt had nothing to do

with my psyche and everything to do with my physiology of the illness it

was easier to cope with. That's not to say the sensations then went

away, they didn't (not until I moved into a different phase of the

illness or went into remission) but I just no longer felt I was going

loopy. Latterly I found that taking the Concentrace drops really helped

to calm my cns, though trying to up the magnesium element of this I have

found impossible as I just cannot tolerate anything other than the

tiniest, and bio-available sources of supplements generally. One thing

I would stress is that the feeling of nerviness/panickyness was just

that. it was not anxiety, there were no anxious thought processes - just

the physiological sensation independent of how I thought. This is why I

am very, very sceptical about procedures such as Lightning Therapy and

Reverse Therapy as I don't think they are at all relevant to people with

authentic ME. As pointed out, if you have endogenous depression,

no amount of happy thinking is going to change it.

Re. trying other things - I have tried so many over the years but can

tolerate practically nothing. The only things I use at the moment are

Concentrace (from time to time) and Acupuncture, which while by no means

being curative at all, gives me a little lift now and again.

Hope this answers your query,

BW

Rosie

Thank you Rosy for your testimony. Wow, 37 years are really a lot, how

are you today? Have you found anything that could help you and that made

the difference among all other things we usually are given?

And also, what did you do in those depression/anxiety few moments you

had, you took something or simply waited for them to go away alone?

Massimo

RE: Re: [CFS-ME-Fibro] Anxiety attacks?

Esogenous or endogenous?

Hi ,

Your link below to your earlier post which I must have missed at the

time is excellent - my feelings exactly. I have been fortunate to have

only had one episode of depression in my (now 37 year) history of the

illness, but it was very bad and I'm sure the result of toxic overload,

(and not helped by the further toxic overload of the rubbish your given

to treat it). I have had panicky symptoms with my ME over the years as

well but unquestionably endogenous and in no way connected to my

mind-set. Indeed times of greater stress such as degree finals, etc,

have found me most capable and not at all stressed by them, whereas in

relapse the smallest thing can seem like an uphill battle. Your link

expresses it very well.

Rosie

http://health.

<http://health.

</message/59692>

/group//message/59692>

/group//message/59692

So there!

-

[Guest guest]

I find that my anxiety is more of a response from my physiological symptoms than

the actual scariness of the situation. For instance, I don't like going to the

dentist. It's not THAT bad, but not fun either, so I become hyperreactive to the

minute stress and my heart rate speeds up really bad and starts pounding which

escalates to stomach ache which causes panic. I think I actually react to the

symptoms that my body creates rather than the actual situation. What I've found

is that if I take one of my propranolol tabs right before one of these issues

(meeting w/boss, dumb m.d. appt, anything minutely stressful) I don't get as

stressed because my hearts not going through the roof. A 1/2 tab of Xanax add to

the mix in VERY stressful situations helps also, but I try to avoid when

possible. I think this correlates to Rosie's story.

-Wendi

RE: Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous

or endogenous?

Hi Massimo,

Fortunately (I suppose) I was cycling with ME between 1970 and 1994 -

ie; I would have a few years in relapse and then a few in relative

remission (though never 100%). In 1994 I crashed badly and have not

been out of relapse since then, though I have had years which weren't so

truly awful as others. In 2004 I had the crash of all crashes and this

is when I had the depression. As I intimated, the drugs given to try to

address this depression made me 100 times worse and I went from moderate

endogenous depression to suicidal. Anyway to cut a long story short; I

was eventually given a tiny amount of dothiepin (tricyclic

antidepressant) , a dose which many will say is non-therapeutic, but

given my hyper-resonsiveness to meds I think had some bearing and

certainly helped me through the dreadful withdrawal process made

necessary by the drugs I had been given improperly. I soon left the

depression behind and am now thinking about trying to get off this small

amount of the tricyclic, and have been able to access a syrup version of

it which will enable me to titrate downwards very slowly and carefully.

Re the panicky type symptoms - they would come and go, but I really just

learned to grit my teeth and live with them - not easy when your

endocrine system is feeling like you have just had a near miss with a

juggernaut 24/7 (ie; even while asleep). During 1994-1996 this

sensation was with me all the time - it was very tiring and not very

pleasant, but I have suffered worse symptoms in this illness. TBH, once

the penny had dropped and I realised that how I felt had nothing to do

with my psyche and everything to do with my physiology of the illness it

was easier to cope with. That's not to say the sensations then went

away, they didn't (not until I moved into a different phase of the

illness or went into remission) but I just no longer felt I was going

loopy. Latterly I found that taking the Concentrace drops really helped

to calm my cns, though trying to up the magnesium element of this I have

found impossible as I just cannot tolerate anything other than the

tiniest, and bio-available sources of supplements generally. One thing

I would stress is that the feeling of nerviness/panickyne ss was just

that. it was not anxiety, there were no anxious thought processes - just

the physiological sensation independent of how I thought. This is why I

am very, very sceptical about procedures such as Lightning Therapy and

Reverse Therapy as I don't think they are at all relevant to people with

authentic ME. As pointed out, if you have endogenous depression,

no amount of happy thinking is going to change it.

Re. trying other things - I have tried so many over the years but can

tolerate practically nothing. The only things I use at the moment are

Concentrace (from time to time) and Acupuncture, which while by no means

being curative at all, gives me a little lift now and again.

Hope this answers your query,

BW

Rosie

Recent Activity

8New Members

Visit Your Group

[Guest guest]

Have you noticed intolerance to waiting for something.I get extremely

nervous if I have an appointment or if I wait for someone or something no

matter how little importance it has.

bw

Nil

Re: Re: [CFS-ME-Fibro] Anxiety attacks?

Esogenous or endogenous?

>I find that my anxiety is more of a response from my physiological symptoms

>than the actual scariness of the situation. For instance, I don't like

>going to the dentist. It's not THAT bad, but not fun either, so I become

>hyperreactive to the minute stress and my heart rate speeds up really bad

>and starts pounding which escalates to stomach ache which causes panic. I

>think I actually react to the symptoms that my body creates rather than the

>actual situation. What I've found is that if I take one of my propranolol

>tabs right before one of these issues (meeting w/boss, dumb m.d. appt,

>anything minutely stressful) I don't get as stressed because my hearts not

>going through the roof. A 1/2 tab of Xanax add to the mix in VERY stressful

>situations helps also, but I try to avoid when possible. I think this

>correlates to Rosie's story.

>

> -Wendi

>

[Guest guest]

Nil/Per - I have the same!!!!!!!! I didn't want to say that initially because I

thought it was just my nature to be " uptight " when having to wait, but waiting

will literally send me into a panic, sweat and all. HMmm, very interesting. and

good to know I'm not alone. Normally, I'm one of the most patient good natured

people you know.

Good connection also, Per.

-Wendi

Re: Re: [CFS-ME-Fibro] Anxiety attacks?

> Esogenous or endogenous?

>

>

> >I find that my anxiety is more of a response from my physiological

symptoms

> >than the actual scariness of the situation. For instance, I don't like

> >going to the dentist. It's not THAT bad, but not fun either, so I

become

> >hyperreactive to the minute stress and my heart rate speeds up

really bad

> >and starts pounding which escalates to stomach ache which causes

panic. I

> >think I actually react to the symptoms that my body creates rather

than the

> >actual situation. What I've found is that if I take one of my

propranolol

> >tabs right before one of these issues (meeting w/boss, dumb m.d. appt,

> >anything minutely stressful) I don't get as stressed because my

hearts not

> >going through the roof. A 1/2 tab of Xanax add to the mix in VERY

stressful

> >situations helps also, but I try to avoid when possible. I think this

> >correlates to Rosie's story.

> >

> > -Wendi

> >

>

________________________________________________________________________________\

____

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

Hi Wendi/Nil/Per,

Can I ask you all: do you find that something that may cause panicky

symptoms when in relapse will just fade away and be no bother in

(relative) remission? I find this to be so, and it proves my earlier

point I think. We are not phobic or anxious, we have some endogenous

problem which actually has very little relevance to a stressor per se,

but when in that fragile state we will over-react to things which in

remission we will take in our stride. I think the really telling thing

is, that unlike people who do have some reactive, neurotic mental

disorder, we, in remission, will lose all of these panicky symptoms

*without the need for any psychotherapy, or psychotropic medication*: it

just spontaneously corrects itself. This would not be the case for a

primary mental illness/aberration. Ie, our response to stress follows

the illness and does not cause it, and this is where so many people -

most of the medical establishment here in the UK - get it wrong: they

put the cart before the horse.

Rosie

Nil/Per - I have the same!!!!!!!! I didn't want to say that initially

because I thought it was just my nature to be " uptight " when having to

wait, but waiting will literally send me into a panic, sweat and all.

HMmm, very interesting. and good to know I'm not alone. Normally, I'm

one of the most patient good natured people you know.

Good connection also, Per.

-Wendi

Re: Re: [CFS-ME-Fibro] Anxiety attacks?

> Esogenous or endogenous?

>

>

> >I find that my anxiety is more of a response from my physiological

symptoms

> >than the actual scariness of the situation. For instance, I don't

like

> >going to the dentist. It's not THAT bad, but not fun either, so I

become

> >hyperreactive to the minute stress and my heart rate speeds up

really bad

> >and starts pounding which escalates to stomach ache which causes

panic. I

> >think I actually react to the symptoms that my body creates rather

than the

> >actual situation. What I've found is that if I take one of my

propranolol

> >tabs right before one of these issues (meeting w/boss, dumb m.d.

appt,

> >anything minutely stressful) I don't get as stressed because my

hearts not

> >going through the roof. A 1/2 tab of Xanax add to the mix in VERY

stressful

> >situations helps also, but I try to avoid when possible. I think this

> >correlates to Rosie's story.

> >

> > -Wendi

> >

>

__________________________________________________________

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

Per - Do you know of any herb or supplement that might calm down the release of

the norepinephrine besides chemicals or like my propranolol?

In my case, if I could solve this issue, I would feel 50% better. I take sea

salt water upon awakening and 1/4 tsp of solid licorice extract to support

adrenals and cortisol. I took the 24 hr cortisol test and although my levels are

slightly lower than normal, they're not that bad. The problem was that I was

highest at midnight and lowest at 8a.m..

Cheers - Wendi

Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous or

endogenous?

I believe some of the substances, messengers, neurotransmitters or

whatever causes anxiety and depression in CFS/ME also causes

cardiovascular, hormonal and inflammatory issues like for example

chronically elevated norepinephrine and low cortisol could do.

And yet in normal anxiety and depressive disorders there are other

messengers that are not so active in CFS.

For example in manic depression there may be a specific nerve growth

factor issue and in anxiety disorders low gaba and low serotonin.

This concept seem very hard to grasp for some professionals.

Ofcourse as you mention, in addition it is also just logical that

brain insults due to metabolic issues leading to oxidative stress

would harm the brain, and we can imagine the results would be mental

symptoms of various kinds and not more happiness.

Per

> Dear friends,

>

> I was wondering if the anxiety attacks and depression in CFS/ME

could be considered primary at times instead of secondary. Or, put it

in other words, is anxiety and depression always related to the fact

that a prolonged illness lowers moods and gives anxiety or there could

be different endogenous reasons like bacterias, fungi, toxins and

viruses crossing the brain barrier?

>

> Cheers,

>

> Massimo

>

>

[Guest guest]

Rosie - I completely agree with your findings. However, in the last three years

I have had total remission for one week and that was last September.. You'd

thought I had won the lotto. I could have taken on the world. Ahhh..

Oh well. To dream, to dream.

-Wendi

Re: Re: [CFS-ME-Fibro] Anxiety attacks?

> Esogenous or endogenous?

>

>

> >I find that my anxiety is more of a response from my physiological

symptoms

> >than the actual scariness of the situation. For instance, I don't

like

> >going to the dentist. It's not THAT bad, but not fun either, so I

become

> >hyperreactive to the minute stress and my heart rate speeds up

really bad

> >and starts pounding which escalates to stomach ache which causes

panic. I

> >think I actually react to the symptoms that my body creates rather

than the

> >actual situation. What I've found is that if I take one of my

propranolol

> >tabs right before one of these issues (meeting w/boss, dumb m.d.

appt,

> >anything minutely stressful) I don't get as stressed because my

hearts not

> >going through the roof. A 1/2 tab of Xanax add to the mix in VERY

stressful

> >situations helps also, but I try to avoid when possible. I think this

> >correlates to Rosie's story.

> >

> > -Wendi

> >

>

____________ _________ _________ _________ _________ _________ _

Have a burning question?

Go to www.Answers. and get answers from real people who know.

[Guest guest]

Hi Wendi,

Apologies for butting in, but I did mention Concentrace as part of this

thread. You may already use it, but I have found it very helpful in

calming the cns. Having said that I did once try a beta blocker and was

very hyper-sensitive to it, so it may be a case of 'horses for courses'

and that you wouldn't necessarily get the same benefit from Concentrace

as I did - we all being different.

Rosie

Per - Do you know of any herb or supplement that might calm down the

release of the norepinephrine besides chemicals or like my propranolol?

In my case, if I could solve this issue, I would feel 50% better. I take

sea salt water upon awakening and 1/4 tsp of solid licorice extract to

support adrenals and cortisol. I took the 24 hr cortisol test and

although my levels are slightly lower than normal, they're not that bad.

The problem was that I was highest at midnight and lowest at 8a.m..

Cheers - Wendi

[Guest guest]

Hi Wendi,

That's interesting, and shows that a)it is possible to feel well so

don't think it will never happen, and b)you're completely sane :-)

Rosie

Rosie - I completely agree with your findings. However, in the last

three years I have had total remission for one week and that was last

September.. You'd thought I had won the lotto. I could have taken on the

world. Ahhh..

Oh well. To dream, to dream.

-Wendi

[Guest guest]

Thanks Per for explaining this so beautifully.

What do you think will help this norephinephrine problem. Some adaptogens

help me with that but it is hard to decide on dosage. Rhodiola helps me with

that. Do you have any other solutions?I have also found couple of energy

medicine methods that helps this.If anyone interested you may write me off

line.

bw

nil

Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous

or endogenous?

>

> Hi, I have the same.

> I would think it could be directly linked to a buildup of

> norepinephrine and high ratio of norepinephrine to epinephrine and

> cortisol.

>

> It is very problematic and one can wonder about the negative effects

> on the brain and immune system over time.

>

[Guest guest]

Hi Wendi

I was also one of the `most patient and good natured` person.Not any

more...

Nil

Re: Re: [CFS-ME-Fibro] Anxiety attacks?

Esogenous or endogenous?

> Nil/Per - I have the same!!!!!!!! I didn't want to say that initially

> because I thought it was just my nature to be " uptight " when having to

> wait, but waiting will literally send me into a panic, sweat and all.

> HMmm, very interesting. and good to know I'm not alone. Normally, I'm one

> of the most patient good natured people you know.

>

> Good connection also, Per.

> -Wendi

>

[Guest guest]

,

I don't understand the end of the last part of your message. You write " No

ampligen. No CFS " . What do you mean by saying that?

I can tell you that Dr. De Meirleir is among the few testing Ampligen in Europe,

but he does not use Ampligen on all CFS patients, but only on a certain

subgroup.

Therefore, there are various CFS identities, and many of them luckily are not

candidates for Ampligen treatment.

Have I misunderstood what you wrote ?

Massimo

Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous or

endogenous?

>

> Unfortunately many, both patients and professionals are unable to

adopt a healthy discussion on the concept of the stress-system and

the autonomic nervous system in CFS, but which also is somewhat

understandable due to the trivialisation of psychologisation and the

direct experience by patients that CFS is so much more than just

mental symptoms. It is also ofcourse possible that these experiences

are by one particular subgroup of cfs.

>

I agree with the latter proposal: the " psychologicals " are

a " subroup " who managed to include themselves by virtue of identifying

themselves with CFS by using a few of the loose descriptive terms of

the CFS definition even though they lack the distinctive immunological

abnormalities uncovered by extensive testing.

The UK has a number of depressed people who call themselves ME and

similarly undermine the credibility of ME - even despite a more

stringent definition for the illness.

The protocols for ampligen does a good job of screening out these

depressed/idiopathic fatigue cases:

No low SED, activated Rnase-L, 37kDa TH2 shift, high IL2, low Nuclear

antigen, Low NK.... No ampligen. No CFS.

-

[Guest guest]

Pam; whoa! Let me say; I am also a survivor of massive abuse, and I have done

all the good spiritual and psychological stuff- and it has benefited me

enormously, emotionally, spiritually, and has left me with more resources to

cope with my physical life- but it didn't cure my physical disease. (Maybe it

did contribute to greatly improved digestion; my gut IS sensitive to my

emotions.)

As is often remarked here we are all so individual. Congratulations on changing

the direction of your life, on having the courage to do that. And I know it does

take courage. More power to you if dealing with your abuse results in a cure.

Maybe you are young enough that all the organic damage that comes from the

stress of trauma has not accumulated too greatly in your body. I certainly will

be interested to see how far you get. Be careful, and don't think that lots of

energy is all there is to it.

But you don't need to look down, as you are doing in this post, on others and

blaming them for their still being sick. We don't need that. It is neat to want

to help others, and share what has worked, but it is too easy to go too far.

If there is anyone who has done their abuse homework adequately, it is me, and I

am still sick.

Adrienne

Re: [CFS-ME-Fibro] Anxiety attacks? Esogenous or

endogenous?

>

>

>

> It is very problematic and one can wonder about the negative

effects

> on the brain and immune system over time.

>

> Unfortunately many, both patients and professionals are unable to

> adopt a healthy discussion on the concept of the stress-system and

> the autonomic nervous system in CFS, but which also is somewhat

> understandable due to the trivialisation of psychologisation and the

> direct experience by patients that CFS is so much more than just

> mental symptoms. It is also ofcourse possible that these experiences

> are by one particular subgroup of cfs.

>

>> Whether something injures the autonomic nervous system or we are

born

> with particular deficits here are yet to be known.

>

>

> Per

>

>

>Hi Per

Well I am about to break my New Year resolution which was to stop

following all the stuff about CFS and actually get on with a life. I

have succeeded so well in this past week to do this and my energy is

coming back in quite a brilliant way.

And why is this - because at last I have begun to come to terms with

my resistance to the fact that psychological factors are keeping me

stuck and sick.

I have had to acknowledge all the stuff from the past that has caused

me massive pain and got hidden away somewhere in my subconscious. I

have had to acknowledge that I have allowed myself to be a victim of

massive abuse by my father who set up a pattern which leads to low

self-esteem which then allows the pattern to continue with family and

friends.

Having written out part of my history for my son to try and begin to

see what massive problems I have been carrying around and denying it

was very cathartic though hugely painful.

I know of some others who are also stuck with CFS and present with

the same problems as most of us, ie toxic metals, viruses,

underfunctioning HPA axis etc. It is an absolute fact that they too

have massive abuse in their lives and a very sick way of relating to

others. Can this just be a coincidence?

The fact that so many on this list and others have such MASSIVE

RESISTANCE to psychological factors shows me that indeed it has to be

an issue that will need to be addressed if that person is to move

forward.

One week ago I was in the depths, I could go no lower all caused by

something I had witnessed and which my conscious wouldn't allow me to

ignore. It has caused huge repercussions which I knew it would and I

have had to face the fact that I am almost alone without any support

from my family and several of my so called friends.

But its ok, when one is at the bottom there is only one way to go. I

won't let them finish me off and so just over a week ago the path to

wellness started. I asked for professional help but I knew it was up

to me to make a new life and in this past week I have booked up

several day long self-improvement classes where I am sure I will find

the necessary support to move forward and change patterns of a

lifetime.

I am going to make it to this courses nothing is going to stop me,

even if I feel sick and have a migraine I am going to attend.

Resistance is massive because that is the way we have learned to

function. But it is hugely damaging. In order for this to work

though one has to have AWARENESS.

The one thing that has brought my energy back was to STOP FIGHTING.

That means trying to persuade others about this and that. Most of

them aren't listening anyway because I don't know how many times I

wasted my energy trying to tell others of the benefits of helping

ones hormones but very few obviously tried it. I would have done far

better to have saved that energy for going for a walk and meeting

other people who are out there and comparatively healthy.

In this past week I have been able to come off the hormones apart

from the odd 1/2 grain Armour. I have been able to swim on 2

separate afternoons, the first one only managing 10 minutes but 3

days later managed 25 minutes and really enjoyed it. I have walked

every day and for nearly an hour at a time, something I have been

unable to do since 2000.

In order to do this I have had to basically ignore my family and

husband. Its like I have had to separate so that they cannot put

their problems and sickness onto me. My body is responding

magnificently and now I don't spend time reading what's causing this

and that but instead I look for things that are beneficial to me,

like today. That means using my sauna, doing yoga, walking, having a

massage, speaking with a counsellor and taking the necessary

supplements to support my body as it sorts itself out. Reading books

that open one's mind is also essential.

All very selfish some people would no doubt think but that is exactly

what we need. To be selfish and for once put ourselves first and sod

everybody else. Its the pattern of looking after others before our

needs that has got us sick and is keeping us that way.

Anybody with CFS needs to ask themself, what is keeping me sick, ie

what am I hidding to myself?

Pam

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

No it shows nothing of the sort. We resist the psychologization of

disease becuase it is *false*.

On 1/11/07, doggy532001 <doggy532001@...> wrote:

>

> >

> >

> >

>

> The fact that so many on this list and others have such MASSIVE

> RESISTANCE to psychological factors shows me that indeed it has to be

> an issue that will need to be addressed if that person is to move

> forward.

>

[Guest guest]

I too endorse Bob and s experience/attitude 100%.

Rosie

hi

I absolutely agree with you there Bob!

I was not at all resistant to the psychological causes theory in the

early years, but if it was in any way psychological I would have been

cured years ago.

I have been sick for over ten years, and although I have never

suffered from any type of depression, still, I was so desperate to

try anything that might help me to get well, that I underwent lengthy

psychotherapy.

I also practised relaxation techniques for months on end to no avail;

and I even underwent the training to became a full Reiki master

myself (this means I became a fully qualified 'hands on healer'); I

also took on board the (highly questionable) beliefs of Carolyn Myss

and Louise Hay- although I now realise they are just another way of

blaming the patient for their illness- and although I do find the

Reiki quite helpful to reduce pain, so far it doesnt cure me.

am I better now?

of course not.

I have pulled myself right up 'by my bootstraps' at least half a

dozen times and fought like mad to get my life back-each time I have

made myself very ill and ended up bedridden and set myself back for

months, this because of post-exertional illness-which persists in

occurring no matter what tranquil state of mind or depth of

relaxation I achieve.

My specialist actually wrote on my notes that I have

continuously 'striven for normality' and 'set myself back by fighting

against the disease'.

I certainly dont believe I have 'cfs' which I believe is probably

only temporary -perhaps CFS really is a fatigue/depression state

- but I have neither of those symptoms, I just pay with a dreadful

flu like illness every single time I try to do anything 'fun'; and

suffer from a whole list of life-destroying symptoms that accurately

comply with the Canadian guidelines criteria for M.E..

Unfortunately I am in the UK, and because I am too sick to work, have

become poor enough to have to totally rely on the nhs- who have

diagnosed 'CFS' and can only supply me with painkillers to reduce the

level of my multi-joint and muscle pain.

what bugs me is that everybody knows that there is now physical proof

that M.E. is a biological illness- yet the psychologists stubbornly

insist on ignoring these facts.

so- am I resistant to pyschological factors?

- yes, in the end, after years of attempting to correct my

imaginary 'psychological problems', I would say that I have become

extremely resistant to wasting any more time and effort chasing that

particular wild goose!

best wishes

@ <mailto:%40>

, " bob niederman " <bobn1955@...>

wrote:

>

> No it shows nothing of the sort. We resist the psychologization of

> disease becuase it is *false*.

>

> On 1/11/07, doggy532001 <doggy532001@...> wrote:

> >

> > >

> > >

> > >

> >

> > The fact that so many on this list and others have such MASSIVE

> > RESISTANCE to psychological factors shows me that indeed it has

to be

> > an issue that will need to be addressed if that person is to move

> > forward.

> >

>

[Guest guest]

Hi ,

I get your point. I have only so far, got ½ way through Oslers Web

(you’re right it is rather dry – but fascinating nevertheless). However

I DO think the whole definition thing is different here in the UK. From

what I remember in Oslers Web, at no time was ME used to describe what

was going on at Incline and other places. In the UK though the term ME

had been coined in 1955 by Ramsay as a result of the Royal Free

outbreak.. You are right that the CFS named in the US is probably the

same as authentic ME, but unequivocally, with the input of the Wessely

school here in the UK, the term CFS has been adopted to widen and muddy

the waters of the definition. Consequently in the UK (and that is the

perspective that has) it is quite clear that the descriptions

used here are 2 very different entities, and *in this country* ME and

CFS are not the same at all.

Rosie

Yvonee, Osler's Web is a long " dry " sort of book that describes how

CFS came into existence. Not many people read it.

It seems easier to just accept the version of truth that is handed

out by the very people who were intent on ignoring the illness at all

costs, called it CFS at the very time ME experts were saying " You are

dooming the patients " .

But the deed was done, and this horrible illness was indeed

called " CFS " alone for many years.

Byron Hyde, who knows full well that CFS is ME ( " Definitions are not

diseases " ) adopted the expedient of describing ME/CFS to show it was

the same. Now we are in the situation where those who have alway

fought patients have retreated to a position where they attempt to

STILL say they were right - and that CFS is distinct from ME/CFS, and

that this was somehow their intention all along.

A lot of CFSers are amenable to this distortion, because, well, they

blame the name and wish to be rid of it - even at the price

of " giving in " to denialists and proffering an admittence of " Ok, you

were right all along about CFS " .

But that's not how CFS happened. We have overwhelming documentation

for all these years that shows the truth about what CFS is - and how

we have been mistreated.

This latest " ME/CFS is not CFS " is just the last-ditch effort by

denialists to whitewash their years of abuse.

Let Byron Hyde tell you what CFS is from a time when he was using

ME/CFS to show that he was referring to the same illness:

-

Osler's Web " Inside the Labyrinth of The Chronic Fatigue Syndrome

Epidemic "

by Hillary

" Roll Call " page 686

Chronic fatigue syndrome, or myalgic encephalomyelitis, is a disease

from which few people recover completely, though many improve over

the course of yeasrs.

Even among those who claim recovery or substantial improvement, the

transforming nature of the disease remains manifest; these patients

inevitably describe a series of adjustments or realignments of goals

and expectations that would have been unthinkable prior to the onset

of their illness.

In the Clinical and Scientific Basis of ME/CFS (Canada: Nightingale

Research Foundation, 1992, Byron Hyde, Sheila Bastien, and Anil Jain

describe the phases of the disease in broad strokes. In the " early

chronic stage, " lasting from one to six years, they write, " the

physical and medical aspects start to merge with the psychosocial

aspects of the disease... During this period, many patients.... show

a very slow and uneven period of recovery and readaptation to their

altered state of central nervous system, muscle , and social

function.

Recovery should not be confused with adaptation. " Any degree

of " rehabilitation " in these early years will depend on many things,

including the social supports available to the patients--helpful

spouses and families in particular--their degree of brain injury, and

their intellectual assets and levels of education prior to falling

ill.

" Many patients in this stage of illness will not recover

sufficiently to enjoy either work or social activities, " the authors

continue. " (This stage) is marked by major changes in their life

pattern. Unstable marriages will become increasingly destabilized,

and marriage breakdown and divorce will occur. Money reserves will

have been liquidated...the social confines of poverty may have set

in, and the patients, most of whom will have had life and social

expectations set at a higher level, will now see those hopes and

expectations destroyed.

It is difficult for a physician, in a fifteen minute visit, to relate

to this change....It is the period when students and youths and some

adults will be most prone to suicide. "

According to these authors, the " late chronic stage " --beginning

after the sixth year of illness-- is a period about which the least

was known medically and socially. Nevertheless, they write: " These

patients tend to be forgotten. They have adjusted to their altered

abilities...Despite their previously relatively high earning ability,

many of these ME/CFS patients will have become poor, long out of the

work force, with no appreciable disability insurance. They....can

become street people. They tend to no longer be recognized as having

a post-infectious disease process... It is our opinion that far from

ME/CFS simply being a disease of the upper middle class, many of

those who fall ill as children, adolescents, and young adults become

a significant proportion of the chronic poor " (pp. 25-37).

[Guest guest]

Hi ,

You're right and it's a very sad situation. As patients we all need to

try to do our bit I suppose - energy permitting. I'm rather hoping that

my own GP will wish to attend the upcoming Conference in the UK

sponsored by Invest in ME (a UK charity which is doing sterling work to

bring the bio-medical model to the general medical population;

www.investinme.org <http://www.investinme.org/> ) . This conference

includes many respected individuals - see the link for the line up- and

will probably produce a DVD as it did last year - absolutely essential

viewing.

BW

Rosie

Dr Cheney and Dr were the only local doctors I know of who

responded to the evidence instead of " herd mentality " .

Most doctors will even tell you that they have no intention of

changing their mind, no matter how many patients they see, and only

will only follow along when " some higher medical authority " tells

them it's OK to open their eyes.

-