Re: Scientific evidence that exercise causes harm in ME?

[Guest guest]

Hi, Phil.

I suggest using this paper by Rich Van Konynenburg, Ph.D. to support the case

against

GET for CFS:

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

It's comprehensive in looking at ME/CFS and shows in at least two sections the

problems

exercise can create in this illness. One points out that strenous excercise

depletes

glutathione and that glutathione is quite often depleted in PWCs, with a large

body of

evidence demonstrating glutathione status in general may be the root mechanism

into this

illness.

Another section shows that one of the physical stressors commonly noted prior to

ME/CFS

onset is extended periods of physical exertion(long periods of exercise). It's

an

impressive paper referencing over 82 published and clinical reports supporting

this so far

unshakeable hypothesis for CFS pathogenesis.

I don't think any paper at this point can lead you to win a debate in the UK

regarding the

use of GET or CBT for treatment of CFS, but if you effectively approach

relatively just

minds in positions of authority using this paper, I suggest they can be

persuaded to not

dismiss such a strong alternative view outrightly, and if genuinely truth

seeking, they will

see it has merit requiring acknowledgement and by virtue of its merit does call

into

question the credibility of the hypothesis that exclusively promotes GET and CBT

for CFS

treatment.

" Phil " <fi11ip@...> wrote:

>

> Hi All,

>

> As some of you may know, the National Institute of Clinical

> Excellence here in the UK has published a set of draft

> recommendations for doctors about how to treat ME/CFS. For

> reference, they are available here: http://www.nice.org.uk/page.aspx?

> o=368978

>

> They heavily promote Graded Exercise therapy (GET) and CBT, and

> little else - there is absolutely no mention of the sort of stuff

> that gets discussed here. I am looking at ways to object to the

> guidelines before they are released, because it's my belief that

> over-activity, which these " treatments " promote, generally makes

> people worse.

>

> Therefore I am trying to find any scientific papers that back this

> up - prefereably something that explicitly says " exercise is bad " ! I

> already have the following articles, which talk about cardio

> problems:

>

> Abnormal Impedance Cardiography Predicts

> Symptom Severity in Chronic Fatigue

> Syndrome

> ARNOLD PECKERMAN et al

>

> Standing up for ME

> Vance Spence and n

>

> Does anyone know of anything else that may be useful?

>

> Thanks,

>

> Phil

>

[Guest guest]

I am sure I have seen such things coming from Co-Cure, and they do keep an

archive, but I cannot remember any specifics.

Adrienne

Scientific evidence that exercise causes harm in

ME?

Hi All,

As some of you may know, the National Institute of Clinical

Excellence here in the UK has published a set of draft

recommendations for doctors about how to treat ME/CFS. For

reference, they are available here: http://www.nice.org.uk/page.aspx?

o=368978

They heavily promote Graded Exercise therapy (GET) and CBT, and

little else - there is absolutely no mention of the sort of stuff

that gets discussed here. I am looking at ways to object to the

guidelines before they are released, because it's my belief that

over-activity, which these " treatments " promote, generally makes

people worse.

Therefore I am trying to find any scientific papers that back this

up - prefereably something that explicitly says " exercise is bad " ! I

already have the following articles, which talk about cardio

problems:

Abnormal Impedance Cardiography Predicts

Symptom Severity in Chronic Fatigue

Syndrome

ARNOLD PECKERMAN et al

Standing up for ME

Vance Spence and n

Does anyone know of anything else that may be useful?

Thanks,

Phil

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]

here is a link to some more articles about the heart and CFS:

http://www.cfids-cab.org/MESA/Lerner.html

you might want to also include some articles on chronic infections

and CFS. i know there is one by Dr Chia that talks about patients

recovering with his treatment, but then relapsing after rigorous

exercise.

thanks

bill

>

> Hi All,

>

> As some of you may know, the National Institute of Clinical

> Excellence here in the UK has published a set of draft

> recommendations for doctors about how to treat ME/CFS. For

> reference, they are available here:

http://www.nice.org.uk/page.aspx?

> o=368978

>

> They heavily promote Graded Exercise therapy (GET) and CBT, and

> little else - there is absolutely no mention of the sort of stuff

> that gets discussed here. I am looking at ways to object to the

> guidelines before they are released, because it's my belief that

> over-activity, which these " treatments " promote, generally makes

> people worse.

>

> Therefore I am trying to find any scientific papers that back this

> up - prefereably something that explicitly says " exercise is bad " !

I

> already have the following articles, which talk about cardio

> problems:

>

> Abnormal Impedance Cardiography Predicts

> Symptom Severity in Chronic Fatigue

> Syndrome

> ARNOLD PECKERMAN et al

>

> Standing up for ME

> Vance Spence and n

>

> Does anyone know of anything else that may be useful?

>

> Thanks,

>

> Phil

>

[Guest guest]

Yes, I do have two more references of interest.

(1)Physical activity for secondary prevention of disease

- systematic reviews of randomised clinical trials, by Karmisholt,

K. and Gotzsche P.C. I believe this is from Copenhagen University

(Kobenhavn O. with a Danish email address for the authors). It lists

a number of conditions for which physical activity had positive

effects, and then says, " An effect was not shown in stroke, asthma,

rheumatoid arthritis, acute or chronic low back pain, chronic fatigue

syndrome, depression, cystic fibrosis or HIV/AIDS. " I didn't keep the

reference, so Google the authors for a full abstract.

(2) Time course of exercise induced alterations in daily activity in

chronic fatigue syndrome by Black, C.D. and McCully, K.K.,

http://www.dynamic-med.com/content/4/1/10 This article

acknowledges a previous study by the authors which showed that people

with CFS were able to increase daily activity via a daily walking

program over 4-10 days. They then followed them for the remainder of

the 28-day period, during which controls were able to maintain their

level of activity and found that among CFS patients " walking and

total activity counts decreased. . . . Unlike our previous

interpretation of the data, we feel this new analysis suggests that

CFS patients may develop exercise intolerance as demonstrate by

reduced total activity after 4-10 days. The inability to sustain

target activity levels, associated with pronounced worsening of

symtomology, suggests the subjects with CFS had reached their

activity limit. " This is a " well, duh " conclusion for all of us with

the hallmark post-exertional malaise, but it is stated in a

peer-reviewed publication in 2005. It sounds to me like these

authors, in the Department of Kinesiology at the University of

Georgia, probably had an initial hypothesis that they could help

everyone by increasing their level of activity and were genuinely

shocked out of their complacency by their conclusion that, dang,

there is something to this push-crash phenomenon!

[Guest guest]

Hi Phil, and all,

The research that referred to (1) is at:

http://www.danmedbul.dk/DMB_2005/0205/0205-artikler/DMB3728.htm

Danish Medical Bulletin - No. 2. June 2005. Vol. 52 Pages 90-94.

original article

Physical activity for secondary prevention of disease

Systematic reviews of randomised clinical trials

Katrine Karmisholt & C. Gøtzsche

There are a couple of things that I try to keep in mind re exercise.

What is the objective and what is the rationale?

I have joint hypermobility syndrome and when I was severely ill at

the beginning I could not maintain any muscle tone which led to my

knees getting frequently dislocated.

I started doing a Yoga class. It exhausted me but my knees never

dislocated again. My objective was to stop getting dislocated knees

and my rationale was that my muscles were shortened so that in

certain positions they pulled my knees out of joint. It worked.

Doctors work with a sort of built in rationale for everything they do

with their patients. They must work with their patients wellbeing

and safety in mind, therefore their objectives and rationale must

take this into account.

I don't know what the objectives or rationale is for GET.

Best Wishes,

[Guest guest]

> I don't know what the objectives or rationale is for GET.

>

> Best Wishes,

>

As you recall the paper by Klimas et.al.? showed a measurable IQ drop

the day following over-exercise.

I don't GET it either, but then again maybe i need CBT ;-)

[Guest guest]

Hi Phil,

I thought of several areas, but don't know specific papers to cite.

One is Immune Response/Cytokines. I recall from earlier work that they were

suspected to be activated at high and toxic level, resulting in pain and

mental/physical fatigue. I think this is escalated by exertion. Probably

Klimas's work would address this.

And I think that Dr. 's Bicycle...(I also want to say Ergonomics...don't

know correct word) gasses?... results are used for evidence of disability.

Another area would be anyone's work on CFS/Mitochondria malfunction. Non-CFS

Persons who have full on Mitochondria Disease can die from exercise.

Another area might be ? Bruno's work on Post Polio Syndrome and his

connecting it and ME. (He is leading PPS expert, who also speaks at ME/CFS

Conferences).

In his book the Polio Paradox, he emphacises, for ME/CFS patients the same

" conserve to preserve " approach to exercise that is recommended for PPS

patients. In PPS patients, exercise can actually fry their limited remaining

neurons.

Look for muscle biopsy results in ME/CFS patients showing other enterovirus.

sackie B?

{Dr. Cheney told me something like I probably have burned out neurons}

I have suspected this in muscle and brain for some time.

I would think that work of Ramsey, Dowsett, Hooper, , would be good

resources for what you seek.

Some places to look for any of this might be: CoCure archives, Ralphs

website, Hummingbird website and others.

Would there be any resources contained in Canadian Case Definition?

Maybe you could contact Dr. Hyde or Carruthers.

You could use a whole research team for this project...finding the

documentation.

Best of luck in the endeavor!

Katrina

>

> Hi All,

>

> As some of you may know, the National Institute of Clinical

> Excellence here in the UK has published a set of draft

> recommendations for doctors about how to treat ME/CFS. For

> reference, they are available here: http://www.nice.org.uk/page.aspx?

> o=368978

>

> They heavily promote Graded Exercise therapy (GET) and CBT, and

> little else - there is absolutely no mention of the sort of stuff

> that gets discussed here. I am looking at ways to object to the

> guidelines before they are released, because it's my belief that

> over-activity, which these " treatments " promote, generally makes

> people worse.

>

> Therefore I am trying to find any scientific papers that back this

> up - prefereably something that explicitly says " exercise is bad " ! I

> already have the following articles, which talk about cardio

> problems:

>

> Abnormal Impedance Cardiography Predicts

> Symptom Severity in Chronic Fatigue

> Syndrome

> ARNOLD PECKERMAN et al

>

> Standing up for ME

> Vance Spence and n

>

> Does anyone know of anything else that may be useful?

>

> Thanks,

>

> Phil

>

[Guest guest]

Hi Phil,

This research paper showed problems with exercise for some pwme (it

did for me, I was one of the original participants) It shows raised

lactic acid levels after gentle exercise.

You can download it at:

http://jnnp.bmjjournals.com/cgi/reprint/74/10/1382.pdf

Also:

Conclusions. The response of CFS patients to incremental exercise

associates a lengthened and accentuated oxidative stress together with

marked alterations of the muscle membrane excitability. These two

objective signs of muscle dysfunction are sufficient to explain

muscle pain and postexertional malaise reported by our patients.

Journal: J Intern Med. 2005 Mar;257(3):299-310.

Authors: Jammes Y, Steinberg JG, Mambrini O, Bregeon F, Delliaux S.

" Lactic Acid " might be a productive search term on Co-Cure.

Best Wishes,

[Guest guest]

What about Cheney's mitochondrial deficit heart theory? Heart can't

support the body well enough to exercise.

Helen

>

>

>

> Hi Phil,

>

> I thought of several areas, but don't know specific papers to cite.

>

> One is Immune Response/Cytokines. I recall from earlier work that

they were suspected to be activated at high and toxic level,

resulting in pain and mental/physical fatigue. I think this is

escalated by exertion. Probably Klimas's work would address

this.

>

> And I think that Dr. 's Bicycle...(I also want to say

Ergonomics...don't know correct word) gasses?... results are used for

evidence of disability.

>

> Another area would be anyone's work on CFS/Mitochondria

malfunction. Non-CFS Persons who have full on Mitochondria Disease

can die from exercise.

>

> Another area might be ? Bruno's work on Post Polio Syndrome

and his connecting it and ME. (He is leading PPS expert, who also

speaks at ME/CFS Conferences).

>

> In his book the Polio Paradox, he emphacises, for ME/CFS patients

the same " conserve to preserve " approach to exercise that is

recommended for PPS patients. In PPS patients, exercise can actually

fry their limited remaining neurons.

> Look for muscle biopsy results in ME/CFS patients showing other

enterovirus. sackie B?

> {Dr. Cheney told me something like I probably have burned out

neurons}

> I have suspected this in muscle and brain for some time.

>

> I would think that work of Ramsey, Dowsett, Hooper, , would

be good resources for what you seek.

>

>

[Guest guest]

Helen,

A theory is not a proof.

Adrienne

Re: Scientific evidence that exercise causes harm

in ME?

What about Cheney's mitochondrial deficit heart theory? Heart can't

support the body well enough to exercise.

Helen

>

>

>

> Hi Phil,

>

> I thought of several areas, but don't know specific papers to cite.

>

> One is Immune Response/Cytokines. I recall from earlier work that

they were suspected to be activated at high and toxic level,

resulting in pain and mental/physical fatigue. I think this is

escalated by exertion. Probably Klimas's work would address

this.

>

> And I think that Dr. 's Bicycle...(I also want to say

Ergonomics...don't know correct word) gasses?... results are used for

evidence of disability.

>

> Another area would be anyone's work on CFS/Mitochondria

malfunction. Non-CFS Persons who have full on Mitochondria Disease

can die from exercise.

>

> Another area might be ? Bruno's work on Post Polio Syndrome

and his connecting it and ME. (He is leading PPS expert, who also

speaks at ME/CFS Conferences).

>

> In his book the Polio Paradox, he emphacises, for ME/CFS patients

the same " conserve to preserve " approach to exercise that is

recommended for PPS patients. In PPS patients, exercise can actually

fry their limited remaining neurons.

> Look for muscle biopsy results in ME/CFS patients showing other

enterovirus. sackie B?

> {Dr. Cheney told me something like I probably have burned out

neurons}

> I have suspected this in muscle and brain for some time.

>

> I would think that work of Ramsey, Dowsett, Hooper, , would

be good resources for what you seek.

>

>

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]

> I don't know what the objectives or rationale is for GET.

Hmmm...!

I could give you a few suggestions, but they wouldn't be appropriate

for this group!

Phil

[Guest guest]

>

> > I don't know what the objectives or rationale is for GET.

>

Another study at the Univ. of Georgia (Black CD and McCully KK, Dynamic

Medicine 2005 Oct 28; 4:10) examined how people with CFS were initially

able to meet target goals in a prescribed daily walking program (for 4

to 10 days), but then these individuals developed exercise intolerance

and worsening of symptoms. Dr. Klimas feels exercise is beneficial, but

it is usually is best tolerated in short intervals (even 5 minutes at a

time) with many rest breaks in between.

from talk by klimas: 4/06

sorry phil, can't find the article showing the IQ drop i was thinking

about...

www.masscfids.org/html/news.htm (some may find this highly interesting

stuff)

haven't been to this site in awhile and the News section is

interesting...

[Guest guest]

>

W. Lapp, MD Provides a Response to the " Exercise May Help

Those with CFS " Study

In Dr. Lapp's words:

This Cochrane review study is a sore subject!

I obtained a copy of the entire review, and it is just horrible. The

author examined 9 studies, accepted only 5, and none were from the

USA. Here are some of the problems:

1. Fatigue was the main outcome measured; depression and quality of

life were secondary outcome measurements.

2. Fukuda international criteria for Chronic Fatigue Syndrome (CFS)

were used in only two studies, and it appears that the subjects were

not terribly ill.

3. In two of the studies (Fulcher and Appleby), 80-92% of subjects

were working at the time of the study; in 's study 35% were

working. The others did not report. Obviously this was not a very

sick cohort.

4. Of the 5 studies, the Appleby study was the only one with a

rigorous exercise plan (70-75% of aerobic capacity for 30 minutes).

This study did NOT show any improvement in subjects, and had the

highest dropout rate. The 4 other studies used a low level of

exercise (40% of aerobic capacity).

5. The so-called " experts' [plural] that were listed were Dr.

White [only], whom I believe works closely with Wessley and Sharpe.

Read biased.

6. Even though the authors concluded " patients with CFS who are

similar to those in the trials should be offered exercise therapy, "

the press did not make it clear that these CFS patients were rather

high functioning, and that most CFS patients could not tolerate such

exercise.

7. The authors also concluded from this same cohort that " exercise

therapy may not worsen outcomes on average. " This is very misleading

since it is part of the Fukuda definition that exercise causes post-

exertional malaise, and all Persons with Chronic Fatigue Syndrome

(PWCs) may trigger prolonged relapses if they overexert.

Sadly, this Cochrane review study once again sends the incorrect

message to primary physicians -- that they should exercise all PWCs

and not worry about post-exertional sequelae.

W. Lapp, MD

HUNTER-HOPKINS CENTER, P.A.

phil- try this doc for info and refs? apparently he feels as

strongly as you do. mike (all ck. above post link) ;-)

drlapp@...