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RES,NOT: Supplements and CFS

| Source: The Quarterly Journal of Medicine (QJM)

| Vol 95, #10, p 677-683

| Date: October 2002

| URL: http://qjmed.oupjournals.org/contents-by-date.0.shtml

| http://qjmed.oupjournals.org/cgi/content/full/95/10/677

|

|

| The effect of a polynutrient supplement on fatigue and physical activity

| of patients with chronic fatigue syndrome: a double-blind randomized

| controlled trial

| ------------------------------------------------------------------------

| F.M. BROUWERS1, S. VAN DER WERF2, G. BLEIJENBERG2, L. VAN DER ZEE3 and

| J.W.M. VAN DER MEER1,

|

| >From the Departments of 1 General Internal Medicine and 2 Medical

Psychology,

| University Medical Center Nijmegen, The Netherlands, and 3 Numico

Research,

| Wageningen, The Netherlands

|

| Address correspondence to Dr J.W.M. van der Meer, University Medical

Center

| Nijmegen, Department of General Internal Medicine (541), P.O. Box 9101,

6500

| HB Nijmegen, The Netherlands. e-mail: J.vanderMeer@...

|

| Received 29 August 2001 and in revised form 28 May 2002

|

| --------------------------------------------------------------------------

--

|

| Summary

|

| Background: The efficacy of dietary supplements in chronic fatigue

syndrome

| (CFS) is uncertain, with conflicting evidence.

|

| Aim: To assess the effect of a polynutrient supplement on fatigue and

| physical activity of patients with CFS.

|

| Design: Prospective randomized placebo-controlled, double-blind trial.

|

| Methods: Fifty-three patients (16 males, 37 females) fulfilling the CDC

| criteria of CFS. The entry criteria were a score on the Checklist

Individual

| Strength subscale fatigue severity (CIS fatigue) >= 40 and a weighted sum

| score of >= 750 for the eight subscales of the Sickness Impact Profile

| (SIP8) and no use of nutritional supplements in the 4 weeks prior to

entry.

| The exclusion criteria were pregnancy and lactose intolerance. The

| intervention -a polynutrient supplement containing several vitamins,

minerals

| and (co)enzymes, or placebo, twice daily for 10 weeks- was preceded by 2

| weeks of baseline measurements. Outcome measurements took place in week 9

| and 10 of the intervention. Five participants dropped out (4 supplement, 1

| placebo). The main outcome measures were CIS fatigue score, number of CDC

| symptoms and SIP8 score. Efficacy analyses were performed on an

| intention-to-treat basis.

|

| Results: No significant differences were found between the placebo and the

| treated group on any of the outcome measures: CIS fatigue +2.16

(95%CI -4.3

| to +4.39, p=0.984); CDC symptoms +0.42 (95%CI -0.61 to +1.46, p=0.417);

SIP8

| +182 (95%CI -165 to +529, p=0.297). No patient reported full recovery.

|

| Discussion: The findings do not support the use of a broad-spectrum

| nutritional supplement in treating CFS-related symptoms.

|

| --------------------------------------------------------------------------

--

|

| Introduction

|

| Chronic Fatigue Syndrome (CFS) is a clinically defined condition

| characterized by long-lasting (at least 6 months) severe disabling fatigue

| and associated symptoms such as memory and concentration difficulties,

| muscle aches, sleep disturbances, and headache. The symptoms are not

caused

| by another medical condition.2

|

| According to the literature,3 and in our own clinical experience, many CFS

| patients use dietary supplements during their illness. Grant et al. found

| that 89% of 28 consecutive female patients reported daily use of 100-200%

of

| the Recommended Daily Allowance (RDA) for vitamin and mineral supplements.

| in contrast to 40% of 10 controls.3 Similarly, in another study only 17

| (16%) of 101 CFS patients reported not to have taken any vitamin

preparation

| during the course of their illness.4

|

| A number of studies have investigated whether nutritional deficiencies

might

| be involved in the pathophysiology of CFS. Some studies found CFS patients

| to be deficient in magnesium,5 phosphate,6 B-vitamins4 or

| (acyl)carnitine.7,8 However, these findings have been disputed in other

| studies, on the basis of methodological limitations or conflicting

| results.3,4,9-12

|

| It has been hypothesized that a reduced cellular energy status, caused by

an

| increase in oxidative stress resulting in cellular damage, could be a

| contributing factor to the fatigue in CFS,13,14 which would suggest that

CFS

| patients might benefit from antioxidant supplements. Consequently, several

| studies have evaluated the effects of dietary supplements, such as

vitamins,

| minerals and enzymes, upon the general well-being and functional status of

| CFS patients.5,9,11,15-20 Most of these clinical trials evaluated single

| components, and again their results varied considerably. The

inconsistencies

| between the studies could be explained by differences in the selection of

| the patients, the design (e.g. randomization, blind assessment of outcome)

| and the methods used for assessing outcome (lack of validated

test-scores).

| In a recent review, it was concluded that the efficacy of dietary

| supplements in CFS is still unknown.1

|

| Taking into account the frequent use of supplements by CFS patients and

the

| lack of controlled studies, the aim of the present study was to assess the

| effect of a polynutrient dietary supplement in a well-defined CFS

population

| using validated outcome measures and a randomized double-blind placebo

| controlled design.

|

|

| Methods

|

| The study was approved by the medical ethical committee of the University

| Medical Center Nijmegen. Written informed consent was obtained from all

| patients prior to enrollment. All procedures were in accordance with

| institutional and international guidelines.

|

|

| Patients

|

| All patients were recruited from a database of the department of General

| Internal Medicine of the University Medical Center Nijmegen in the

| Netherlands. The database consisted of clinically diagnosed CFS patients

who

| at the time of diagnosis indicate that they were interested in

participating

| in research projects. Patients had to fulfill the 1994 CDC criteria for

| chronic fatigue syndrome.2 Fatigue severity and disability were rated with

| the subscale subjective fatigue of the Checklist Individual Strength

| (CIS-fatigue) and the summed scores of eight subscales of the Sickness

| Impact Profile (SIP8).21-24 Patients were included in this study when they

| had both high fatigue severity scores (CIS-fatigue >= 40) and high

| disability scores (SIP8-total >= 750). Similar inclusion criteria have

| been used in previous studies of our research group.25 The minimum age for

| participation was 18 years.

|

| Pregnant or lactating women and patients with intolerance for lactose were

| excluded, as were patients who used experimental medication. During the

| trial, patients were not allowed to take vitamins and minerals (other than

| the trial supplements) and the use of vitamins and other supplements had

to

| be discontinued 4 weeks prior to entry into the study.

|

|

| Trial design and randomization procedure

|

| This study was designed as a randomized, double-blind, placebo-controlled

| study with a total duration per participant of 12 weeks. Following the

| measurement of baseline parameters in the first two weeks (weeks 1 and 2),

| patients were randomly allocated to receive the nutritional supplement or

| placebo in a 50:50 ratio. All patients were required to take the

nutritional

| supplement or placebo twice a day for 10 weeks (weeks 3-12). In the last

two

| weeks (weeks 11 and 12), baseline measurements were repeated. To maintain

| balance over time, the randomization was in blocks of two. All patients

| enrolled in 1999. Randomization and allocation to treatment or placebo

group

| was based on a patient's study number. At entry, a patient received the

| lowest study number available (1-53). The investigators were blind to the

| treatment condition, as the randomization list that correlated the study

| number with treatment group was held by an independent organization in

| charge of the distribution of the trial product.

|

|

| Nutritional supplement and placebo

|

| The nutritional supplement, provided by Numico Research BV, contained

| several vitamins, minerals and (co)enzymes and was specifically developed

to

| have a high antioxidative capacity. The composition is shown in Table 1.

| Placebo and supplement were identical in appearance (125 ml packages).

|

|

| Primary outcome measures

|

| Fatigue severity

| The subscale fatigue severity of the Checklist Individual Strength was

used

| (CIS-fatigue). The score on this eight-item scale ranges from 8 (no

fatigue

| at all) to 56 (maximally fatigued).23

|

| CDC checklist

| The patient was asked to indicate which of the following symptoms were

| present in the previous 6 months: impaired memory or concentration, sore

| throat, tender cervical or axillary nodes, muscle pain, multi-joint pain,

| new headaches, unrefreshing sleep, and post-exertion malaise. Thus the

| number of CDC symptoms varied between 0 and 8.2

|

| Functional impairment

| Eight subscales of the Sickness Impact Scale (SIP8) were used to rate both

| physical and psychosocial disability. The physical subscales included

were:

| mobility, walking, home-making and recreation and pastimes. The

psychosocial

| subscales were social interactions, concentration difficulties, and

| sleep/rest problems.

|

|

| Secondary outcome measures

|

| Physical activity levels

| Physical activity levels were measured using actigraphic assessment. A

| motion sensing device (actometer) was worn around the ankle day and night

| for a two-week period. The actometer continuously sampled accelerations

| every second and stored data at 5-min intervals. Consequently, the maximum

| number of movements (activity) reached per 5-min interval was 300

| (accelerations). A procedure, described in detail elsewhere, was used to

| distinguish active (day) and inactive (night) periods. Subsequently, the

| average scores over the 12 day periods were computed.24

|

| Daily fatigue levels

| Patients rated the intensity of their fatigue during a two-week period in

a

| complaint diary. They rated the Daily Observed Fatigue (DOF) four times a

| day on a scale of 0 (no fatigue) to 4 (severely fatigued). The DOF score

| thus ranged between 0 and 16.23 The mean of 12 consecutive DOF scores was

| used.

|

| Self-reported improvement at follow up

| Patients were also asked to indicate whether any changes had occurred in

the

| severity of their complaints since the start of the trial. There were four

| response categories: recovered, improved, unchanged and worse.

|

|

| Statistical analysis

|

| All statistical analyses used the Statistical Package for Social Sciences

| (SPSS 9.0). Prior to the start of the study, a power analysis to estimate

| the number of patients minimally required to detect a difference of at

least

| 1 SD on any of the primary outcome measures indicated that to detect such

a

| difference with 90% certainty, using a double-sided significance level of

| 5%, a sample size of 48 subjects was required. Anticipating a drop-out

rate

| of 10% at least 53 patients had to be approached.

|

| All analyses were performed on an intention to treat basis. Follow-up data

| were also collected from patients who discontinued treatment. Whenever

this

| was not possible, the missing data at follow-up assessment were

substituted

| by available baseline data.

|

| Independent-sample t-tests were done, with the difference between baseline

| and end of treatment outcome measures as dependent variables, and group

| membership (i.e. placebo vs. supplement) as the independent variable.

|

| Differences between both groups on the categorical secondary outcome

| measures were tested by Fisher-Z or chi^2 tests.

|

|

| Results

|

| A total of 53 patients entered the study. Figure 1 illustrates the

| participant flow. Forty-eight patients completed the study and five

dropped

| out. Of these five patients, three stopped because they did not tolerate

the

| study treatment (nausea, all three in supplement group). The remaining two

| patients gave personal problems and the time burden of participation as

| reasons. Follow-up data were collected for three of these five patients;

in

| the remaining two, missing values at follow-up assessment were replaced by

| baseline measures.

|

|

| Demographics and illness duration of the groups

|

| Table 2 shows baseline characteristics for the placebo and

| treatments groups. The groups did not differ significantly with respect to

| gender, age, illness duration and educational levels.

|

|

| Outcome

|

| Table 3 shows baseline measurements and follow-up data for the

| primary and secondary outcome measures. The results of the independent

| sample t-tests on baseline-follow-up change scores are reported in Table

4.

|

| None of the primary outcome measures and none of the secondary outcome

| measures showed significant differences between supplement and placebo.

The

| majority of patients in both groups reported that there had been no change

| in complaints, and no patient reported complete recovery at follow-up

| assessment (chi^2=2.0, df(1,2), p=0.36).

|

|

| Discussion

|

| This study is one of the first to evaluate the effects of a

polynutritional

| dietary supplement in a well-defined CFS population with the design of a

| randomized controlled trial. No significant treatment effects were found

on

| either self-report measures or a behavioural measure. The polynutritional

| supplement used in this study resembled the multivitamin use reported by

CFS

| patients and was compatible with the advice regarding supplement use in

CFS

| found on CFS information pages on the Internet.

|

| Two previous studies also assessed the effect of a polynutritional

| supplement on fatigue.19,20 In the first, which used a placebo-controlled

| double-blind cross-over design, the drop out was high, with only 19/42

| enrolled patients completing the 6-month trial.19 This study reported

| similar findings to our results. The other, sponsored by Pharmaton

Capsules,

| reported beneficial effects of supplementation on the complaints of

patients

| with functional fatigue for over 15 years on a self-report

questionnaire.20

| This study also used a randomized double-blind design.

|

| Many different measurement methods have been used in other trials to

assess

| the effects of supplement use. It is probable that this methodological

| diversity accounted for some of the conflicting results in these

| studies.5,11,15-20 Since our study not only used validated measures but

| also assessed various dimensions of fatigue, the lack of significant

| differences on any of these measures strengthens our overall finding.

|

| We did not assess the nutritional status of the patients in details prior

to

| treatment, especially with respect to possible nutritional deficiencies.

No

| overt signs of malnutrition were encountered. Since a strict randomization

| procedure was used, it is unlikely that both groups would differ in the

| proportion of patients suffering certain subtle deficiencies.

|

| One could hypothesize that some components of the polynutrient mixture

might

| have opposing effects, and that one should study a single component at a

| time rather than assessing a polynutrient preparation. However, such

effects

| are not described in the literature, and it seems also unlikely that the

| combination would render all individual components ineffective.

|

| In the supplement sample, the median illness duration showed a trend to be

| longer. One could theorize that a longer duration of illness might be

| associated with a further decrease in anti-oxidative capacity. To check

| whether a patient's response to therapy was perhaps influenced by illness

| duration, post hoc analyses of variance were done, with illness duration

as

| a covariate. These analyses again showed no significant differences

between

| both groups on any of the outcome measures.

|

| In most trials that reported beneficial effects of treatment with a

| nutritional supplement (vitamin, mineral or enzyme), the effect was seen

| within 4 to 6 weeks after initiation of the therapy.5,17,18,20 In the

| present study, patients received the supplement for a total duration of 10

| weeks. It thus seems unlikely that the lack of effect in our study is

| attributable to inadequate duration of treatment.

|

| Although nutritional supplements have been widely used by CFS patients,

and

| are claimed to be beneficial for alleviating CFS complaints by many of

them,

| this could not be substantiated in the present study. Such effects might

be

| due to the expectations patients have about controlling their symptoms.

Thus

| the results of this study do not support the general prescription of

| polynutritional supplements for CFS-related symptoms.

|

|

| Figure caption

|

| Figure 1. Patient recruitment flow chart

|

|

| Tables

|

| Table 1 Composition of the nutritional supplement (per 100 ml)

| --------------------------------------------------------------------------

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

| Category Component Amount Category Component

Amount

| --------------------------------------------------------------------------

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

| Protein Casein 3.0 g Minerals Na

43 mg

| Whey 3.0 g K

300 mg

| Cysteine 0.1 g Cl

81 mg

| Carbohydrates Sugars 6.7 g Ca

126 mg

| Lactose 0.61 g P

73 mg

| Sacharose 6.1 g Mg

8 mg

| Organic acids 0.3 g Vitamins Vitamin A

267 mug RE

| Other 0.1 g Vitamin D

2.0 mug

| Fat Saturates 0.5 g Vitamin E

215 mg alpha-TE

| Monounsaturates 1.8 g Thiamin

10 mg

| Polyunsaturates 0.8 g Riboflavin

1.2 mg

| Linoleic acid 0.69 g Niacin

8.0 mg NE

| Linolenic acid 0.15 g Pantothenate

1.6 mg

| Trace elements Fe 0.40 mg Vitamin B6

2.4 mg

| Zn 6.0 mg Folate

240 mug

| Cu 0.60 mg Vitamin B12

1.2 mug

| Mn 1.2 mg Biotin

40 mug

| F 0.40 mg Vitamin C

100 mg

| Mo 20 mug Other Carnitine

1200 mg

| Se 20 mug Choline

40 mg

| Cr 13 mug Creatine

1200 mg

| I 40 mug Taurine

1200 mg

| Fe 0.40 mg Coenzyme Q10

60 mg

| --------------------------------------------------------------------------

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

|

|

| Table 2 Sociodemographic data and drop out rate of the total sample

| --------------------------------------------------------------------------

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

| Total (n=53) Supplement (n=27) Placebo (n=26)

Significance

| --------------------------------------------------------------------------

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

| Mean (SD) Age (years) 39.3 (10.3) 40.0 (9.9) 38.9 (10.9)

t=0.51, p=0.61 a

| Female (%) 69.8 74.1 65.4

chi^2=0.15, p = 0.70 b

| Mean (SD) education rating 4.3 (1.5) 4.3 (1.4) 4.4 (1.6)

t=0.31, p=0.76 a

| Dropped out n=5 (9.2%) n=4 (14.8%) n=1 (3.8%)

chi^2=1.86, p=0.35 b

| Median (IRQ) illness 5.0 (2-12) 8.0 (2 15) 4 .5 (2 10)

Z=1.33, p=0.19 c

| duration (years)

| --------------------------------------------------------------------------

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

| a t-test;

| b chi^2-test;

| c Mann-Whitney.

| IRQ, interquartile range.

|

|

| Table 3 Baseline and follow up scores of the primary and

| secondary outcome measures

| --------------------------------------------------------------------------

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

| Supplement (n=27) Placebo (n=26)

| --------------------------------------------------------------------------

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

| CIS fatigue score at baseline 51.4 p/m 4.2 51.3 p/m 3.6

| CIS fatigue score at follow-up 48.6 p/m 7.4 48.2 p/m 7.6

| CIS fatigue -40 at follow-up (%) 15% 16%

| Number of CDC symptoms baseline 6.7 p/m 2.1 7.0 p/m 2.0

| Number of CDC symptoms follow-up 6.7 p/m 1.8 7.5 p/m 1.5

| Functional impairment (SIP8) 1911 p/m 666 1811 p/m 683

| score at baseline

| Functional impairment 1650 " 543 1710 " 644

| (SIP8) score at follow-up

| SIP8 -750 at follow-up (%) 4% 12%

| Actometer baseline score* 62.9 p/m 17.9 65.8 p/m 19.4

| Actometer follow-up score* 57.2 p/m 14.6 65.6 p/m 22.4

| Daily fatigue baseline score 8.1 p/m 2.2 7.8 p/m 2.7

| Daily fatigue follow-up score 7.7 p/m 2.4 7.2 p/m 2.3

| Self-reported improvement

| at follow-up

| Completely recovered (%) 0% 0%

| Improved (%) 20% 16%

| Similar (%) 76% 68%

| Worse (%) 4% 1%

| --------------------------------------------------------------------------

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

| * Higher actoscores reflect higher levels of physical activity. All data

are means

| p/m SD, unless otherwise stated.

|

|

| Table 4 Estimated differences (ED) between supplement and placebo groups:

| for changes from baseline scores

| --------------------------------------------------------------------------

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

| ED SE p df 95% CI

| CIS fatigue 2.16 4.30 0.984 51 -4.30 to + 4.39

| Number of CDC symptoms 0.42 0.52 0.417 51 -0.61 to + 1.46

| Impairment (SIP8) 182 173 0.297 51 -165 to + 529

| Actoscore 5.55 4.06 0.179 47 -2.63 to + 13.72

| Daily Observed Fatigue 0.74 0.51 0.885 48 -1.10 to + 0.95

| --------------------------------------------------------------------------

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

|

|

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|

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|

| --------

| © 2002 Association of Physicians / Oxford University Press

|

[Guest guest]

Hi All,

It is interesting that a study like this was done. The

question is,

how valid is it?

The amount of vitamin C indicated is 100mg, which I feel is a small

amount. I have heard that one should take 100-200 mg of CoQ10.

I have heard that the molybdenum is an important metal for

detoxification

and it was not indicated that it was given.

The study does make me ask myself whether supplements help.

In many cases that could be hard to know. Someone once said

that the worst that would happen by taking supplements is that

you will have expensive urine.

I seem to have found that certain supplements help me. Could it

be a plecibo effect???.

I feel that the B vitamins seem to help my mind work better.

I have found that zinc lozenges have helped me with sore throats.

I believe that when I have candida symptoms that capryllic acid

has helped.

Having an activity measurement device is interesting. If

I was doing a test like this, I would also do studies of

viral and bacterial loads before and after, as I would for

various types of immune function testing. I would also

do challenge tests on the various detoxification pathways

to determine if they were helped or effected otherwise.

I would also do psychological testing to determine

various levels of mental / intellectual functionality.

Mike

[Guest guest]

I remember when I first became ill and became acquainted with the cfids

chronical. They did a survey of cfs people. What helps and what doesn't and

what makes you worse. It was very interesting. Just basic stuff like c and b,

etc. And it was almost half and half. Half the people were helped by c and

half felt worse, It was like that with each item.

It definitely seems to be an idividual thing.

My personal experience is that all commerical usp type vitamins make me worse.

Naturally occuring vitamins like in bee pollen and chlorella, etc. seem to work

quite well at increasing energy. But certainly have not been a cure.

Colostrum

Coral Calcium

Magnesium orotate

and probiotics

have made the biggest difference for me in recent years.

Also did blood electrification to kill cooties. Helped alot, but didn't cure.

Now doing ozonated water. It is helping, but hasn't cured me yet. Only did it

six times. Smile.

Things that helped enormously in past:

chlorella

barley juice powder

bee pollen

royal jelly

co-q-10

I-X by natures sunshine (herbal organic iron)

And probably alot minor things I have forgotten.

Blessings

Donna

p.s. I became ill about 14 years ago. Totally bedfast for a year, mostly bed

fast for many years after that. Now mostly up but not totally well.

[Guest guest]

Hi Donna!

Thanks for very well prepared info.I was actually thinking that we needed

this kind of info. I wished we had a data base so that everyone could enter

the supplements they take,how long they have been ill,their activity

level.etc so one could easily access the info and get help if in need. It

seems that only we can help to each other. May be some day we can at least

gather this info on an excel sheet.

Do things like Vitamin C or Magnesium also make you worse?

One thing I noticed about the supplements is that I feel better when I start

taking them. Than improvement stabilizes and if I decrease the dosage or

stop the supplement thinking that it does not help anymore,I start feeling

worse .I can not stop taking them.This way the supplements I have to take

are increasing in time with not much improvement in the long term.

I don't know how we can explain this. Maybe the body is adapting itself to

the supplements in long term usage..Don't know.

Thanks.

Nil

Re: Ýlt: RES,NOT: Supplements and CFS

| I remember when I first became ill and became acquainted with the cfids

chronical. They did a survey of cfs people. What helps and what doesn't

and what makes you worse. It was very interesting. Just basic stuff like c

and b, etc. And it was almost half and half. Half the people were helped

by c and half felt worse, It was like that with each item.

|

| It definitely seems to be an idividual thing.

|

| My personal experience is that all commerical usp type vitamins make me

worse. Naturally occuring vitamins like in bee pollen and chlorella, etc.

seem to work quite well at increasing energy. But certainly have not been a

cure.

|

| Colostrum

| Coral Calcium

| Magnesium orotate

| and probiotics

| have made the biggest difference for me in recent years.

|

| Also did blood electrification to kill cooties. Helped alot, but didn't

cure.

|

| Now doing ozonated water. It is helping, but hasn't cured me yet. Only

did it six times. Smile.

|

| Things that helped enormously in past:

| chlorella

| barley juice powder

| bee pollen

| royal jelly

| co-q-10

| I-X by natures sunshine (herbal organic iron)

| And probably alot minor things I have forgotten.

|

| Blessings

| Donna

| p.s. I became ill about 14 years ago. Totally bedfast for a year, mostly

bed fast for many years after that. Now mostly up but not totally well.

|

|

|

|

[Guest guest]

Nil,

I agree with the others who have said that the doses were too low for

many of the supplements used. For example, magnesium and vitamin B12

are probably the supplements found most helpful in CFS, and the doses

used in this study for these nutrients were orders of magnitude lower

than the amounts that have been found helpful. I think it's

unfortunate that they did all this work and then used doses that were

too low.

Rich

[Guest guest]

Thanks Rich!

You are right. The study was apparently done by people who don't know much

about the illness..

By the way,I have stopped taking B12.My brain fog was increasing after I was

exposed to mercury. The only form of B12 I can find is cyanocobalamin.

Almost all B-50 and B-100 supplements also contain cyanocobalamin form.I

read that B12 dosages above 20 mcg is risky for mercury poisoned people as

B12 forms methyl mercury which crosses the BBB.This sounded logical

tome.Specific form was not given at the article,so I am not sure if he meant

cyanocobalamin or all forms of B12. I don't think I am doing so well without

B12 but my brain fog seems to be decreased.So,little confused at this point.

What do you think about that?

Nil

Re: Ýlt: RES,NOT: Supplements and CFS

| Nil,

|

| I agree with the others who have said that the doses were too low for

| many of the supplements used. For example, magnesium and vitamin B12

| are probably the supplements found most helpful in CFS, and the doses

| used in this study for these nutrients were orders of magnitude lower

| than the amounts that have been found helpful. I think it's

| unfortunate that they did all this work and then used doses that were

| too low.

|

| Rich

|

|

|

|

|

| 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]

Nil, your statement below is especially true for myself and some

others who started taking whey, specifically ImmumePro. What I wonder

is that since I don't notice any benefit from taking it, should I

discontinue or is possible still helping? I was off IPro for about

a month, and I don't recall ever feeling any worse, then when I

started taking it again I didn't feel any better either.

Mike C.

> One thing I noticed about the supplements is that I feel better

when I start

> taking them. Than improvement stabilizes and if I decrease the

dosage or

> stop the supplement thinking that it does not help anymore,I start

feeling

> worse .I can not stop taking them.This way the supplements I have

to take

> are increasing in time with not much improvement in the long term.

> I don't know how we can explain this. Maybe the body is adapting

itself to

> the supplements in long term usage..Don't know.

[Guest guest]

Hi and All,

, I was wondering if you started the

Immunocal

on the high dose first. If so, why not start off with a small amount

and

work up.

As far as getting tested for glutathione, it would be interesting to

find out what your level is. I think that test results of anything can

serve as guidelines, but medical science is far from understanding

CFS and many diseases. It's not the same as bringing in your car

for computerized analysis and getting an exact diagnosis.

There are many issues that I think about. What if the glutathione

level is normal, but your body needs a higher level? Maybe some

of what these whey proteins do is modify the immune system.

Maybe that's good for some people and not others.

I feel that as part of my CFS, I have an autoimmune condition.

I feel that the Immunocal might have kicked up that condition in

addition to helping the rest of my system. It's hard to know.

We are mostly flying blind. If I had lots of money, I could do

lots of tests very often so I could " see " something of what is

happening to my system from moment to moment. Maybe that

could help guide me, but who knows. How one feels might

be the ultimate test.

Take Care,

Mike

[Guest guest]

Hi Nil. I appologize to all for not cutting this post down, but I don't want to

have to repeat what I take, so I am leaving my original post at the bottom.

Vitamin C does make me feel worse, unless it is from natural sources, like food,

or Juice Plus, which is concentrated fruit and veges in caps. That kind of

thing doesn't bother me, but the man made stuff does.

magnesium orotate has been a huge help to me. Stopped insomnia and greatly

reduced and eventually eleminated the vibration I felt in nervous system when

resting. Just strengthened me overall.

I also have found, over the years that the things that make me feel better, do

so when they are in my system and when I stop, I feel bad, BUT, those things

have helped me to heal, overtime, and after being on a product for so many years

it will suddenly go south on me and not work and actually make me feel worse and

then I know I don'[t need it anymore and it is not helping and I quit. But I

don't stop taking stuff just because it hasn't healed me.

I am very close to total wellness because I have persevered. And I know people

who have progressively gotten better and better by taking the same approach.

The people who I see who do not make progress are the people who try a

supplement like barley juice and if it doesn't cure them, they take it for a few

months and quit. They are always looking for an instant cure. The people who I

see who make great progress are the people who take a product for years and

years, and take multiple products for years on end, instead of trying one for

two months and another for two months and on and on. It takes years sometimes

for the body to repair and when you give it what it needs to do the repairs, it

has wisdom beyond what any man has and will do what needs to be done.

And, of course, I cheat by praying and God helps me to find the things that work

for me and avoid the stuff that doesn't. Smile.

Blessings.

Donna

Re: Ýlt: RES,NOT: Supplements and CFS

| I remember when I first became ill and became acquainted with the cfids

chronical. They did a survey of cfs people. What helps and what doesn't

and what makes you worse. It was very interesting. Just basic stuff like c

and b, etc. And it was almost half and half. Half the people were helped

by c and half felt worse, It was like that with each item.

|

| It definitely seems to be an idividual thing.

|

| My personal experience is that all commerical usp type vitamins make me

worse. Naturally occuring vitamins like in bee pollen and chlorella, etc.

seem to work quite well at increasing energy. But certainly have not been a

cure.

|

| Colostrum

| Coral Calcium

| Magnesium orotate

| and probiotics

| have made the biggest difference for me in recent years.

|

| Also did blood electrification to kill cooties. Helped alot, but didn't

cure.

|

| Now doing ozonated water. It is helping, but hasn't cured me yet. Only

did it six times. Smile.

|

| Things that helped enormously in past:

| chlorella

| barley juice powder

| bee pollen

| royal jelly

| co-q-10

| I-X by natures sunshine (herbal organic iron)

| And probably alot minor things I have forgotten.

|

| Blessings

| Donna

| p.s. I became ill about 14 years ago. Totally bedfast for a year, mostly

bed fast for many years after that. Now mostly up but not totally well.

|

|

|

|