Stress and CFS

[Guest guest]

Is it possible that the subset of PWC who suffer from adrenal exhaustion --

which no one disputes results from a high-stress lifestyle -- could be large

enough to create an impression that stress causes CFS?

If doctors are seeing a stream of high-achievers who have exhausted their

adrenals and these doctors are consistently misdiagnosing each and every one of

them with CFS, well, these doctors would form the opinion that high stress

causes CFS.

They wouldn't be wrong, they would just be a little confused.

Jan VanDenBerg

[Guest guest]

Jan,

Adding to this concept:

People with multiple endocrine deficiencies and some with growth hormone

deficiencies (GHD) have symptoms that often result in diagnoses of FMS and

or CFS. In a group I am a member of, of folks with AGHD, many had earlier or

concurrent diagnosis of FMS. Some in this group have CFS, FMS and LYME. It

may be that FMS in particular is overused and misused by doctors who do not

test for other causes of the symptoms. And I think that some of the claims

of cures or total recovery turn out to be people who were treated for

hormones deficiencies and or other conditions that cause some of the same

symptoms.

We do know that many PWC/FMS/Lyme do have these endocrine disorders. But the

true cases pf FMS/CFS/Lyme do not recover from hormone replacement alone.

However these PWC will not likely recover without treating their endocrine

problems as well as other systems that are out of whack or whacked by bugs.

Another group never get the hormone deficiencies diagnosed and thus without

treatment those with replacement hormone needs are not likely to get better,

even if they have concurrent FMS/CFS/Lyme.

Testing one's hormones is usually for see hormones and thyroid. Add Cortisol

that is not tested properly at fasting and early enough in the AM. Then we

have those with normal readings who are not re-up taking properly and thus

are deficient. Neuro-transmitters not signaling release of hormones add to

the issues and again a group of people who are deficient in one or more

hormones.

I am not saying the hormones are the root of the problem but that this

critical area is typically not evaluated well and by doctors who know the

full spectrum of hormone and issues. Heaven forbid, we also get one who is

current with the latest literature - research in the field of hormones and

the cross over areas of medicine.

" Just put all my SOUP in the box when you look at it. Last I checked, I was

just one human being with many parts; not a collection of parts. " That is

what I want a doctor or a team that really coordinates to do.

Shalom, W

* -----Original Message-----

Is it possible that the subset of PWC who suffer from adrenal exhaustion --

which no one disputes results from a high-stress lifestyle -- could be large

enough to create an impression that stress causes CFS?

If doctors are seeing a stream of high-achievers who have exhausted their

adrenals and these doctors are consistently misdiagnosing each and every one

of them with CFS, well, these doctors would form the opinion that high

stress causes CFS.

They wouldn't be wrong, they would just be a little confused.

Jan VanDenBerg

[Guest guest]

Ken,

 

With respect.

 

The reactions of bacteria are only going to be relevant if a person with CFS has

those bacteria. Obviously a problem if one does. However, it may be irrelevant

to some or many - we don't know.

 

The Canadian Guidelines use that quote as part of one of the criteria. Therefore

it is possible to have Canadian ME/CFS without that specific symptom. It also

doesn't specify what " stress " is. Reactions to emotional stress are not listed

as a criteria for CDC CFS or for ME (as per Ramsay). So once again maybe a

subgroup.

 

Dr Bell is an incredible doctor and an acknowledged expert, and he does say

" CAN " - not does or always.

Therefore can one judge from this that there is no science or research that

specifically links psychological/emotional stress with ME/CFS or CFS or CFIDS

(as the original moderator comment). Therefore we cannot always assume that

reducing stress is going to have a positive effect on all patients or what sort

of effect (small, major, worthwhile, not worth the effort) on any.

 

And

 

Anything we say on this topic is either extrapolated from other research or

personal evidence, or the opinion of respected doctors? It may not apply to all

patients and may only be a subgroup?

 

Kindest regards,

Annette

[Guest guest]

stress = cortisol = XMRV activated

[Guest guest]

Seriously Annete and Nat if you keep thinking that stress would not make your

CFS or any other disease worse then I don't expect you to find a minimal relif

from CFS.

Keep your adrenal hormones high and you will see how all your dormant infections

will come to life very aggresively.

There are thousand of scientific papers that talk about the benefits of

mind-body exercises, not just CFS but for practically any disease.

If you keep reasuring yourselves that CBT or any other technique will harm you

it will !! Mind is very powerful.

>

> Ken,

>  

> With respect.

>  

> The reactions of bacteria are only going to be relevant if a person with CFS

has those bacteria. Obviously a problem if one does. However, it may be

irrelevant to some or many - we don't know.

>  

> The Canadian Guidelines use that quote as part of one of the criteria.

Therefore it is possible to have Canadian ME/CFS without that specific symptom.

It also doesn't specify what " stress " is. Reactions to emotional stress are not

listed as a criteria for CDC CFS or for ME (as per Ramsay). So once again maybe

a subgroup.

>  

> Dr Bell is an incredible doctor and an acknowledged expert, and he does say

" CAN " - not does or always.

>

> Therefore can one judge from this that there is no science or research that

specifically links psychological/emotional stress with ME/CFS or CFS or CFIDS

(as the original moderator comment). Therefore we cannot always assume that

reducing stress is going to have a positive effect on all patients or what sort

of effect (small, major, worthwhile, not worth the effort) on any.

>  

> And

>  

> Anything we say on this topic is either extrapolated from other research or

personal evidence, or the opinion of respected doctors? It may not apply to all

patients and may only be a subgroup?

>  

> Kindest regards,

> Annette

>

[Guest guest]

I speak anecdotally

but stress exacerbates my CFS drastically

I also believe it was stress/trauma that kicked it off

Thanks

Steve

On Nov 11, 2009, at 1:09 PM, annette barclay wrote:

> Ken,

>

> With respect.

>

> The reactions of bacteria are only going to be relevant if a person

> with CFS has those bacteria. Obviously a problem if one does.

> However, it may be irrelevant to some or many - we don't know.

>

> The Canadian Guidelines use that quote as part of one of the

> criteria. Therefore it is possible to have Canadian ME/CFS without

> that specific symptom. It also doesn't specify what " stress " is.

> Reactions to emotional stress are not listed as a criteria for CDC

> CFS or for ME (as per Ramsay). So once again maybe a subgroup.

>

> Dr Bell is an incredible doctor and an acknowledged expert, and he

> does say " CAN " - not does or always.

>

> Therefore can one judge from this that there is no science or

> research that specifically links psychological/emotional stress with

> ME/CFS or CFS or CFIDS (as the original moderator comment).

> Therefore we cannot always assume that reducing stress is going to

> have a positive effect on all patients or what sort of effect

> (small, major, worthwhile, not worth the effort) on any.

>

> And

>

> Anything we say on this topic is either extrapolated from other

> research or personal evidence, or the opinion of respected doctors?

> It may not apply to all patients and may only be a subgroup?

>

> Kindest regards,

> Annette

>

>

>

Ideal People are universal and not Clannish,Small Minded People are

Clannish

Confucius 13:23

[Guest guest]

stress = nfkb = XMRV activated.

" Not in the mind of neurasthenic lazybones but in the cell nucleus: patients

with chronic fatigue syndrome have increased production of nuclear factor kappa

beta. "

http://www.ncbi.nlm.nih.gov/pubmed/17693979

" Determinants of the NF-kappaB response to acute psychosocial stress in humans. "

http://www.ncbi.nlm.nih.gov/pubmed/18848620

- Mark

>

[Guest guest]

Hi,

There was a meta analysis study done a few years ago that showed that there was

no statistically significant positive effects on various illnesses, including

cancer, from using mind-body therapies and treatments. They investigated every

research paper that had been published. They concluded that pressurising people

to imagining themselves well or better was not helpful, and could be harmful and

lead to the patients being blamed for not getting better. So basically there is

no scientific evidence for your assertions at all.

BW

[Moderator: CITATION please,also we are not talking about " imagining themselves

well or better " ]

> >

> > Ken,

> >  

> > With respect.

> >  

> > The reactions of bacteria are only going to be relevant if a person with CFS

has those bacteria. Obviously a problem if one does. However, it may be

irrelevant to some or many - we don't know.

> >  

> > The Canadian Guidelines use that quote as part of one of the criteria.

Therefore it is possible to have Canadian ME/CFS without that specific symptom.

It also doesn't specify what " stress " is. Reactions to emotional stress are not

listed as a criteria for CDC CFS or for ME (as per Ramsay). So once again maybe

a subgroup.

> >  

> > Dr Bell is an incredible doctor and an acknowledged expert, and he does say

" CAN " - not does or always.

> >

> > Therefore can one judge from this that there is no science or research that

specifically links psychological/emotional stress with ME/CFS or CFS or CFIDS

(as the original moderator comment). Therefore we cannot always assume that

reducing stress is going to have a positive effect on all patients or what sort

of effect (small, major, worthwhile, not worth the effort) on any.

> >  

> > And

> >  

> > Anything we say on this topic is either extrapolated from other research or

personal evidence, or the opinion of respected doctors? It may not apply to all

patients and may only be a subgroup?

> >  

> > Kindest regards,

> > Annette

> >

>

[Guest guest]

Thanks o,

 

For the reply.

 

There is no evidence that my stress hormones are high. Cortisol measured by both

saliva and blood have both been low.

 

Can you point me in the direction of any research that shows that people with

clearly defined CFS (or CFIDS or ME) have high stress hormones?

 

Can you also point me in the direction of any research that shows that CBT (or

similar) is capable of reducing any harmful hormones in CFS?

 

If people with CFS have low cortisol in your opinion is it always a good idea to

reduce it further? What is your rationale?

 

Kindest regards,

Annette

[Guest guest]

:

We are not talking about " imaging " stuff.

I would love to see that " meta analysis " that you are referring to.

Could you please post the citation?

Thanks

[Moderator: It is interesting to observe the writing style being used on this

topic. Posters 'pro stress being a factor' appear to write is a non-forceful

relaxed style providing links on how this could be in terms of body chemistry.

Those oppose to stress having any influence are writing in a forceful style

using sweeping terms]

[Guest guest]

Hi,

I'm afraid I can't remember now the exact paper. Having ME I have memory

problems. I can, however, assure you that I'm not making it up or imagining

things. It was widely reported in the national press here in the UK a few years

ago. Perhaps using the word " imagining " wasn't the correct word to use. From

memory the meta analysis was of all the research papers ever performed on

mind-body treatments and their effectiveness in promoting improvements in all

sorts of illnesses and conditions. Feel free to believe or not believe me but it

is a fact that this study was done and reached the conclusions that I stated.

Message to Moderator: It's equally interesting to note the language and tone

taken by yourself on this matter and it's also highly obvious where your own

ideas lie. Your interpretation is biased and dismissive of those not supporting

your own ideas and frankly not fair or balanced. You're doing exactly what

you're accusing others of because they don't agree with your views. No doubt

this message will get blocked. I do apologise for being too ill with ME and not

some psychological fatigue condition that is amenable to psyche based therapies

and not being able to remember the exact details of every paper that I've ever

read.

[Moderator: My bias is to definitely get 'academic' discussion on treatment,

part of that is to encourage exploration of possibilities.]

[Guest guest]

o,

I very rarely jump into any of these recurring debates about CFS and

stress and stress-reducing therapies. However, I did want to mention a

few things here.

I agree that stress (including emotional stress, physical stress, and

the stress of any major life change) likely has a physiological (i.e.,

" real " , physical) effect on the body.

Leading from that, *some* people with any chronic illness, including

CFS, may benefit from mind-body types of therapy.

HOWEVER, my impression is that many of people with CFS (at least the

ones that post here), are like myself.

I have extremely low cortisol levels. I have had, all my life, an even

temperment. I have practiced meditation and yoga in the past, and

still use meditation and " positive thinking " tools from time to time.

The psychiatrist who was treating me 5 or 6 years ago (and, by the

way, someone for whom I have great respect), asked me a number of

times if I felt " anxious " . I'm not even sure what that word means, in

relation to myself. I am one of the least anxious, most " centered "

people I know. My psychiatrist asked me to go through a CBT (cognitive

behavioral therapy) workbook, which I did, because he asked me to.

From my point of view (after I looked through it) it was mildly

insulting (although I'm certain he didn't mean it that way), as it was

full of ideas and teaching targets that were BLINDINGLY OBVIOUS and

ideas that I had encountered and worked my way through and

internalized decades ago. It did not have any effect on my illness. I

did not go into that exercise with a negative frame of mind, sure that

it would not work. I was willing to give it a fair try. It was simply

not appropriate for my current state of understanding.

What appears missing in this debate is any quantification of

improvement. I.e., " 20% better " , " slightly better " , " back to 80%

functionality " over a reasonably large group. Clearly some people get

back most of their functionality with mind-body methods. How many

people out of 100 would that be? It seems wrong to accuse people who

don't get better with mind-body methods of " being resistant " or

" negative " . I have tried it when suggested, it didn't work for me. Not

because I was resistant, but because it just wasn't an appropriate

treatment for me.

Okay, I'm running out of brain here. But this whole discussion, every

time it comes up, seems fuzzier than most of the other things

discussed here. How can we put this on a clearer basis, a more

rational basis, and take the fuzziness out of the discussion?

Marcia on

in Salem, Massachusetts

On Nov 12, 2009, at 10:37 AM, robertillo75 wrote:

> :

>

> We are not talking about " imaging " stuff.

>

> I would love to see that " meta analysis " that you are referring to.

>

> Could you please post the citation?

>

> Thanks

>

> [Moderator: It is interesting to observe the writing style being

> used on this topic. Posters 'pro stress being a factor' appear to

> write is a non-forceful relaxed style providing links on how this

> could be in terms of body chemistry. Those oppose to stress having

> any influence are writing in a forceful style using sweeping terms]

>

>

[Guest guest]

o,

Here's a link to a study but I can't be sure if it's " the one " I remember. It is

to do with cancer. I seem to remember that the study I was thinking of examined

EVERY study they could find but that may be my memory playing tricks. I can

assure you though that it really did gain a lot of coverage here in the quality

press.

Here's the link:-

[Moderator: the title is " Does psychosocial intervention improve survival in

cancer? A meta-analysis " so we are not talking about disease in general]

http://pmj.sagepub.com/cgi/content/abstract/18/1/25

[Moderator: " Conclusions: Psychosocial intervention does not prolong survival in

cancer. This meta-analysis can not rule out small effect sizes because of the

small number of trials and small trial sizes. " ]

I'm not saying that stress can't exacerbate ME/CFS symptoms. I know it can from

personal experience. I don't believe it causes ME/CFS though and I don't believe

that CBT etc have as big an effect as some believe in treating ME/CFS.

BW

[Moderator: I believe the discussion has been focused on it being a factor and

not a cure... we seem to have reach effectively the same page.]

[Guest guest]

Hi o,

On 2009-11-11, robertillo75 <roberto_meza75@...> wrote:

> If you keep reasuring yourselves that CBT or any other technique will harm

> you it will !! Mind is very powerful.

Did you catch my post in the " Methodlgy " (or similar) thread? Please

take a look, if you can. It explains some of the context and it

includes a link to a paper.

It's a personal decision whether to try a therapy that only works if

you believe in it. I prefer therapies that work even when the person

seriously trying them thinks they won't. However, I know that a lot

of other people believe in the power of belief, and I will not

interfere with their own attempts to get better.

Here is another paper, which might be of interest, coincidentally

posted recently elsewhere.

===

http://sacfs.asn.au/download/guidelines_psychiatrists.pdf

8.2 Utility of CBT/Graded Exercise in ME/CFS

Although Cognitive Behavior Therapy (CBT) is widely recommended for

patients with ME/CFS, it is far from clear whether cognitive behavior

therapy is helpful for most patients. The rationale for using CBT in

ME/CFS is that inaccurate beliefs (that etiology is physical) and

ineffective coping (activity avoidance) maintain and perpetuate CFS

morbidity (Deale et al, 1997;Sharpe et al, 1996). However, it has

never been proven that these illness beliefs contribute to morbidity

in CFS. Where correlations do exist it is possible, even likely, that

beliefs in physical etiology are correct and that activity avoidance

is necessary for the more severely ill (Lloyd et al, 1993;Ray et al,

1995).

*Of the 6 reported studies using CBT in “ME/CFS”* two selected

patients as defined by the Oxford (Deale et al, 1997;Sharpe et al,

1996) one using the Australian criteria (Lloyd et al, 1993) and one

using the Fukuda criteria “with the exception of the criterion

requiring four of eight additional symptoms to be present” (Prins et

al, 2001). These methods of patient selection allow for considerable

heterogeneity and inclusion of psychiatrically ill patients with

fatigue. Therefore, the results may not be applicable to the average

Fukuda or Canadian defined patient. Of the remaining two studies using

valid

selection criteria, one found no benefit of CBT (Friedberg & Krupp,

1994). The only study reporting benefit (improved functional capacity

and decreased fatigue) was conducted in adolescents (Stulemeijer et

al, 2005).

It is important to note that no CBT study has reported that patients

have been improved enough to return to work nor have they reported

changes in the physical symptoms of CFS eg. muscle pain, fever,

lymphadenopathy, headache or orthostatic intolerance. Furthermore,

clinical experience suggests that trying to convince a patient with

ME/CFS that s/he does not have a physical disorder and should not rest

when tired leads to conflict in the doctor-patient relationship and

poor outcome for the patients. Therefore it would be prudent to await

further research before recommending this CBT approach.

Despite the fact that worsening of symptoms after exercise is a

compulsory criteria for diagnosis of ME/CFS, graded exercise programs

have often prescribed for such patients. Presumably these

recommendations are made on the assumption that exercise will be

accompanied by improved aerobic capacity, increased anaerobic

threshold and improved exercise tolerance. However, in patients with

ME/CFS, neither exercise tolerance nor fitness has been shown to

improve with exercise programs. This may be connected with abnormal

responses to exercise in people with ME/CFS. The resting heart

rate of patients is elevated, and maximum oxygen uptake is reduced

compared with healthy sedentary controls (Riley et al, 1990;Farquhar

et al, 2002;Fulcher & White, 1997;De Becker et al, 2000). SPECT scan

brain analysis indicates worsening of hypoperfusion (Goldstein, 1993)

and decreased cerebral blood flow ( et al, 1994) after

exercise. Decreased cognition (Blackwood et al, 1998a;LaManca et al,

1998), decreased pain threshold (Whiteside et al, 2004a;Whiteside et

al, 2004b) and reduced maximal muscle contraction ( et al, 1999)

are also reported.

According to the recent Cochrane Collaboration metanalysis (Edmonds et

al, 2004) there are *five studies on exercise and ME/CFS* that are

methodologically sound. However three of these studies used the Oxford

criteria for patient selection which requiring only fatigue of 6

months duration for diagnosis. One of these excluded patients with

sleep disrupted sleep (Fulcher & White, 1997) meaning that virtually

all patients seen in clinical

practice would be excluded. There are two studies using valid

diagnostic criteria and both report improved fatigue by self report

(Chalder Fatigue Scale) (Wallman et al, 2004;Moss- et al,

2005). Neither of these report follow-ups past 12 weeks. Neither

report on core physical symptoms of ME/CFS such as pain, unrefreshing

sleep, infective, autonomic, neurological or endocrine symptoms. It is

unclear whether these findings are applicable

to severely ill patients as none of these patients are well enough to

participate in studies. It will require more study on a broader group

of patients, reporting all symptoms to discern if graded exercise

affects the core symptoms of ME/CFS.

===

Remember that most studies and surveys do not use a strict definition.

Also remember that people who tried CBT were almost certainly not

housebound or bedbound. That skews the numbers also.

The medical establishment has beliefs and incentives that guide their

behavior. Please keep in mind, if you can, the possibility that those

beliefs and incentives are incorrect for other sufferers even if they

work for you. Bertrand says:

every man, wherever he goes, is encompassed by a cloud of

comforting convictions, which move with him like flies on a

summer day.

Hope it helps.

--

Q: How many CDC " scientists " does it take to change a lightbulb?

A: You only think it's dark. [CDC has denied ME/CFS for 25 years]

=================================================================

Retrovirus: http://www.wpinstitute.org/xmrv/xmrv_qa.html

[Guest guest]

Dear Nat:

As Ken said there are practically thousand of research peer reviewed articles

that demonstrate how stress can make any disease worse or create non-existent

disease.

This is just one article that I found written by CFS expert Dr.

Natelson. If you haven't read his book I would encourage to do so as he always

back up what he says with scientific evidence and not in quackery.

Just google the side effects of

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

Stress, hormones and disease.

Natelson BH.

War Related Illness and Injury Center, New Jersey VA Health Care System and

Department of Neurosciences, New Jersey Medical School, East Orange, NJ 07018,

USA. bhn@...

My postdoctoral training under Dr. Gerard began me on a lifetime of

investigation on the role of stress, hormones, and disease. The first set of

experiments asked what hormone, if any, best reflected the range of aroused

behaviors. We found that catecholamines performed substantially better than

glucocorticoids did, despite the belief that glucocorticoids were sensitive

indices of stress. But we also learned that hormones themselves were nowhere

near as good in monitoring stress than motor behaviors were. In a second set of

experiments, we tried to understand how stress affected medical disease. We

learned that stress can produce disease in a healthy organism but has its most

profound effects when disease already exists. Finally, in the early 1990s, I

shifted my focus on stress and disease to a broader problem in behavioral

medicine, namely, medically unexplained fatigue and pain. Among the studies we

have done investigating these disorders, we looked specifically at veterans of

the first Gulf War--many of whom developed problems with severe fatigue. A

critical question in the literature asked if unexplained fatigue was simply a

physical component of concurrent posttraumatic stress disorder (PTSD). In a

large epidemiological study, we found that PTSD tracked stressor intensity in a

stepwise fashion, while fatiguing illness increased with stressor intensity only

on the milder side of the intensity spectrum. This result indicated that the two

ailments are both stress sensitive but dissimilar.

PMID: 15234602 [PubMed - indexed for MEDLINE]

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

Annete:

There are no " harmful hormones " in CFS. I'm talking about adrenal hormones

present in every person whether ill or healthy.

I think you misunderstood my previous comment. I NEVER said anything in

particular with CFS, I'm talking about diseases in general includying CFS.

What you are saying about reducing cortisol doesn't makes any sense. I don't

think CBT or any other mind-body exercise can lead to hypocortisolism.

Just do a google search on the side effects of glucocorticoids and you will have

an idea on why these hormones when chronically high (as in physical or

psychological stress, doesn't matter) are very harmful to our bodies.

:

We are not talking about supporting Ken't ideas here. Scientific research are

not his " ideas " .

Regards,

o

>

> " Keep your adrenal hormones high and you will see how all your dormant

infections will come to life very aggresively. "

>

> It seems to be the other way around in my case.

>

> There is no scientific evidence that stress causes disease or makes disease

worse. It is just that- " talk " .

>

>

> Nat

>

> [Moderator: I did a search on http://www.ncbi.nlm.nih.gov/sites/entrez for:

> * stress and disease and found some 64,514 articles.

> * " psychological stress " disease returned 10817 articles

>

> I'm impressed that you have read and done analysis on all of these articles to

justify dismissing their conclusions ...

>

> For example " Higher levels of psychological distress were significantly

related to greater severity of skin disease; more pain and fatigue; "

> Arch Dermatol. 2009 Sep;145(9):1017-22. PMID: 19770441]

>

[Guest guest]

I cant remember if I already asked this before or only meant to -- but where is

the NF-kappaB stuff coming from, I mean the connection with XMRV? I know Cheneys

mentioned it, but is he " the source " ?

I know that NF-kB probably raises cortisol rather indirectly. But I'm not sure

thats a strong effect, and may not be what convinced Cheney. After all, if Maes

is right our NF-kB activity is raised, but in general studies have not found our

cortisol to be elevated in the chronic phase of CFS.

> >

>

[Guest guest]

The cortisol connection continues to baffle me. I was diagnosed with

CFS almost 20 years ago. 10 years later, hypothyroid. 2 years ago I

was diagnosed with 's - a term that is used more loosely than it

used to be.

Marcia, did you have your cortisol levels tested? If so, would you mind

sharing your results? I have become steadily worse (weaker, more tired,

mostly house/recliner/bed bound) since starting replacement Cortef

(steroids) but would I have deteriorated anyway? My ability to handle

stress is abysmal, much much worse than it was before I started

steroids. My endocrinologist warned me about having an adrenal crisis

if I didn't take steroids. But he's an endocrinologist and knows

nothing about CFS. None of my doctors do. They don't know much about

adrenals either.

I don't tolerate the full replacement dose of steroids he prescribes. I

have more diagnoses by now that I have body parts - ok that's an

exaggeration, but this is no way to live. I have written about this

before and most of the time I accept that this is simply the way I have

to live. It's becoming increasingly more difficult. My inability to

handle stress and exhaustion has turned me into a virtual recluse.

Any help appreciated. I don't think there is any.

F.

-----Original Message-----

From:

[mailto: ] On Behalf Of Marcia on

Sent: Thursday, November 12, 2009 10:53 AM

o,

I very rarely jump into any of these recurring debates about CFS and

stress and stress-reducing therapies. However, I did want to mention a

few things here.

I agree that stress (including emotional stress, physical stress, and

the stress of any major life change) likely has a physiological (i.e.,

" real " , physical) effect on the body.

Leading from that, *some* people with any chronic illness, including

CFS, may benefit from mind-body types of therapy.

HOWEVER, my impression is that many of people with CFS (at least the

ones that post here), are like myself.

I have extremely low cortisol levels. I have had, all my life, an even

temperment.

[Guest guest]

Kathyrn,

I had my cortisol levels tested about 2 1/2 years ago. I don't

remember what the numbers were, but they were abysmally low, all the

way throughout the day. I haven't tried to take any replacement

steroids. If I did, I would start off *very* low, and gradually work

up to the recommended dose. I have had moderately low thyroid levels

for a long time. Since starting the Yasko protocol, my thyroid levels

have improved to the point where (due to my dr's recommendation) I

discontinued the low dose of thyroid that I had been taking. At some

point I will test my cortisol levels again, but right now there are

other things higher on the list. Maybe over on the group

" adrenalfatigue " you can find some ideas?

Marcia on

in Salem, Massachusetts

On Nov 14, 2009, at 9:00 PM, Kathry Froese wrote:

> The cortisol connection continues to baffle me. I was diagnosed with

> CFS almost 20 years ago. 10 years later, hypothyroid. 2 years ago I

> was diagnosed with 's - a term that is used more loosely than

> it

> used to be.

>

> Marcia, did you have your cortisol levels tested? If so, would you

> mind

> sharing your results? I have become steadily worse (weaker, more

> tired,

> mostly house/recliner/bed bound) since starting replacement Cortef

> (steroids) but would I have deteriorated anyway? My ability to handle

> stress is abysmal, much much worse than it was before I started

> steroids. My endocrinologist warned me about having an adrenal crisis

> if I didn't take steroids. But he's an endocrinologist and knows

> nothing about CFS. None of my doctors do. They don't know much about

> adrenals either.

>

> I don't tolerate the full replacement dose of steroids he

> prescribes. I

> have more diagnoses by now that I have body parts - ok that's an

> exaggeration, but this is no way to live. I have written about this

> before and most of the time I accept that this is simply the way I

> have

> to live. It's becoming increasingly more difficult. My inability to

> handle stress and exhaustion has turned me into a virtual recluse.

>

> Any help appreciated. I don't think there is any.

>

> F.

>

>

[Guest guest]

Hi Kathyryn,

I just wanted to write to say that many of us do badly with cortisol,

despite the fact that we are in desperate physiological need for it.

This has been the biggest CFS paradox for me for the last 4 years, where

I have struggled with progressively worsening adrenals due to my

Chlamydia pneumoniae infection. I got to the point where I couldn't do

any form of detox because it would debilitate me.

I've read pretty much everything out there on hormones/cortisol, and

believe me when it comes to cortisol & CFS pretty much no one has a

clue.

That all changed last month with the XMRV announcement. Its early days,

but things are suddenly starting to make sense. XMRV loves cortisol, so

could explain a lot of our dysfunction, and why we respond so badly to

cortisol even if apparently in physiological need of it.

You can see my cortisol & Dhea levels here.

<http://i64.photobucket.com/albums/h168/jgarcia3788/Hormones.jpg>

My cortisol levels are low enough that if I take cortisol at night I

sleep much better. However I don't take cortisol because I believe it

lowers immunity and encourages the bugs to reproduce. It took me a long

time to figure that out.

Two things which have helped me (though I'm not saying they will help

you) are:

- seratonin (i.e. 5htp). Raising serotonin helps lower the intensity of

the stress you feel so lowering demand for cortisol. Don't overdo it

though as too high serotonin is not good (may make you angry/irritable

and e.g. interfere with sex hormones).

- Immunomodulation / Modulate your cytokines. Again we know XMRV loves

inflammatory cytokines, but even ignoring XMRV these are very stressful

on the body. I recommend you look into Isoprinosine(=imunovir) and/or

other immunomodulators.

Of course all the above should be discussed with a physician, but IMHO

you might want someone other than an endocrinologist to be your main doc

as in my experience at least there are a subset of us who just don't

respond to hormones as we should (XMRV?). Also if you are going to

change your hormones do it in consultation with a doc and at a very slow

pace.

I'm not a doctor, none of the above is intended as medical advice etc.

garcia.

>

> The cortisol connection continues to baffle me. I was diagnosed with

> CFS almost 20 years ago. 10 years later, hypothyroid. 2 years ago I

> was diagnosed with 's - a term that is used more loosely than

it

> used to be.

>

> Marcia, did you have your cortisol levels tested? If so, would you

mind

> sharing your results? I have become steadily worse (weaker, more

tired,

> mostly house/recliner/bed bound) since starting replacement Cortef

> (steroids) but would I have deteriorated anyway? My ability to handle

> stress is abysmal, much much worse than it was before I started

> steroids. My endocrinologist warned me about having an adrenal crisis

> if I didn't take steroids. But he's an endocrinologist and knows

> nothing about CFS. None of my doctors do. They don't know much about

> adrenals either.

>

> I don't tolerate the full replacement dose of steroids he prescribes.

I

> have more diagnoses by now that I have body parts - ok that's an

> exaggeration, but this is no way to live. I have written about this

> before and most of the time I accept that this is simply the way I

have

> to live. It's becoming increasingly more difficult. My inability to

> handle stress and exhaustion has turned me into a virtual recluse.

>

> Any help appreciated. I don't think there is any.

>

> F.

>

>

> -----Original Message-----

> From:

> [mailto: ] On Behalf Of Marcia

on

> Sent: Thursday, November 12, 2009 10:53 AM

>

>

> o,

>

> I very rarely jump into any of these recurring debates about CFS and

> stress and stress-reducing therapies. However, I did want to mention a

> few things here.

>

> I agree that stress (including emotional stress, physical stress, and

> the stress of any major life change) likely has a physiological (i.e.,

> " real " , physical) effect on the body.

>

> Leading from that, *some* people with any chronic illness, including

> CFS, may benefit from mind-body types of therapy.

>

> HOWEVER, my impression is that many of people with CFS (at least the

> ones that post here), are like myself.

>

> I have extremely low cortisol levels. I have had, all my life, an even

> temperment.

>

>

>