Joint Flexibility May Offer Insight Into CFS

[Guest guest]

Joint Flexibility May Offer Insight Into Chronic Fatigue Syndrome

Painful condition affects four in 1,000 adults, researchers say

http://www.healthcentral.com/newsdetail/408/534241.html

[Guest guest]

This is interesting to me as I've always been very " bendy " . Even now at 55 I

can still touch my knees with my forhead standing or on the floor. Also can

bend my finger into those angles. Many docs have commented on this.

poodiejoe <poodiejoe@...> wrote: Joint Flexibility May Offer

Insight Into Chronic Fatigue Syndrome

Painful condition affects four in 1,000 adults, researchers say

http://www.healthcentral.com/newsdetail/408/534241.html

[Guest guest]

Edy>>This is interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

When I read your post about wingspan I immedietly jumped up and measured mine.

I'm 68 " tall and wingspan is 64 " . Is that close enough. I'm also very small in

the ribcage. Been teased about not enough room for the organs in there. Of

course I also weigh 115 so am somewhat of a beanpole.

Kurt R <kurt@...> wrote: Edy>>This is interesting to me as I've

always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Edy,

Do you have those numbers reversed? Wingspan is wider than height with

this sub-Marfan type condition, usually by several inches. Long arms

are the marker. However, perhaps the reverse could also happen, maybe

there are variations in the connective tissue disorder. That would be

consistent with the other genetic issues we are learning about.

--Kurt

RE: Joint Flexibility May Offer Insight

Into CFS

When I read your post about wingspan I immedietly jumped up and measured

mine. I'm 68 " tall and wingspan is 64 " . Is that close enough. I'm also

very small in the ribcage. Been teased about not enough room for the

organs in there. Of course I also weigh 115 so am somewhat of a

beanpole.

Kurt R <kurt@... <mailto:kurt%40isrd.com> > wrote: Edy>>This is

interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Hi Kurt,

Nope. Did it twice. Maybe I'm just bendy and long. I once had a root canal

and the dentist had to get a tool he hadn't ever used because he said I had the

longest, skinniest teeth roots he'd seen. Probably I was made out of pipe

cleaners by a 5 year old!

Kurt R <kurt@...> wrote:

Edy,

Do you have those numbers reversed? Wingspan is wider than height with

this sub-Marfan type condition, usually by several inches. Long arms

are the marker. However, perhaps the reverse could also happen, maybe

there are variations in the connective tissue disorder. That would be

consistent with the other genetic issues we are learning about.

--Kurt

RE: Joint Flexibility May Offer Insight

Into CFS

When I read your post about wingspan I immedietly jumped up and measured

mine. I'm 68 " tall and wingspan is 64 " . Is that close enough. I'm also

very small in the ribcage. Been teased about not enough room for the

organs in there. Of course I also weigh 115 so am somewhat of a

beanpole.

Kurt R <kurt@... <mailto:kurt%40isrd.com> > wrote: Edy>>This is

interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Edy,

Sure does sound related to Marfan, but very odd that you do not have

long arms. Still, the hypermobility is impressive. I believe there is

a definite connective tissue link with CFS. You clearly have something

going on there. Incidentally, my CFS daughter does not have the

wingspan issue like I do, but she has all types of joint issues, and her

ankles creak when she walks. She is only 22 so it is not age-related.

I suspect the issue has to do with porous connective tissue, and that

this allows those tissues to become infection hosts, almost like a type

of cavitation. Maybe if we could find a type of abx that got into those

tissues we could make some headway.

--Kurt

RE: Joint Flexibility May Offer Insight

Into CFS

When I read your post about wingspan I immedietly jumped up and measured

mine. I'm 68 " tall and wingspan is 64 " . Is that close enough. I'm also

very small in the ribcage. Been teased about not enough room for the

organs in there. Of course I also weigh 115 so am somewhat of a

beanpole.

Kurt R <kurt@... <mailto:kurt%40isrd.com> <mailto:kurt%40isrd.com>

> wrote: Edy>>This is

interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Don't steroids take their toll on connective tissue; so that a lot of stress

would tend to degrade such tissue? Just a thought.

Adrienne

RE: Joint Flexibility May Offer Insight

Into CFS

When I read your post about wingspan I immedietly jumped up and measured

mine. I'm 68 " tall and wingspan is 64 " . Is that close enough. I'm also

very small in the ribcage. Been teased about not enough room for the

organs in there. Of course I also weigh 115 so am somewhat of a

beanpole.

Kurt R <kurt@... <mailto:kurt%40isrd.com> <mailto:kurt%40isrd.com>

> wrote: Edy>>This is

interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Oh my.....every joint in my body creaks and pops. My feet especially, so does my

sister's and she has brittle diabetes now for 25 years. Been in many comas.

" Adrienne G. " <duckblossm@...> wrote: Don't steroids take their

toll on connective tissue; so that a lot of stress would tend to degrade such

tissue? Just a thought.

Adrienne

RE: Joint Flexibility May Offer Insight

Into CFS

When I read your post about wingspan I immedietly jumped up and measured

mine. I'm 68 " tall and wingspan is 64 " . Is that close enough. I'm also

very small in the ribcage. Been teased about not enough room for the

organs in there. Of course I also weigh 115 so am somewhat of a

beanpole.

Kurt R <kurt@... <mailto:kurt%40isrd.com> <mailto:kurt%40isrd.com>

> wrote: Edy>>This is

interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Hi Kurt, Edy,

I have been watching the DVD of the UK ME Conference and DR Byron Hyde's

talk. He mentions hyper-mobility of the joints, though his conclusions

are a little confusing. He is referring to a particular case study,

where the patient has this, but then says if you are hyper-mobile you

don't have ME! I'm a bit confused. If anyone knows of this element of

his work I would love to have some clarification. I am not hyper

mobile, but could do the splits etc when younger and can still get my

foot to my neck, but cannot touch my nose with my tongue, my forearm

with my thumb etc. MY daughter, however is extremely mobile in these

regards and so I wonder what (if anything) this means in terms of her

likelihood of one day getting ME?

Rosie

Edy>>This is interesting to me as I've always been very " bendy " . Even

now at 55 I can still touch my knees with my forhead standing or on the

floor. Also can bend my finger into those angles. Many docs have

commented on this.

This is consistent with my connective tissue disorder hypothesis for

CFS. Shoemaker observes that we have longer 'wingspan' and are often

hypermobile, which are markers for Marfan. I believe about 80% of PWC

have this, per Shoemaker, a subclinical form of Marfan (we do not all

seem to have all the signs of Marfan) . Anyway, the hypothesis is that

if your connective tissues are 'spongy' and more flexible, they are more

porous, and therefore can harbor sequestered, chronic infections, such

as Bb, and probably also mycoplasmas. This is a safe place for those

infections, out of reach of the blood supply and much of the immune

system. Then I believe the infections there produce a steady stream of

biotoxins. An interested adjunct to this is that physical exertion will

squeeze more biotoxins from those spongy and infected connective

tissues. And of course, if a person has poor GSH status, then they

will feel more of the effects of that biotoxin load.

So I believe that the joint flexibility offers a profound insight, but

one must connect these dots.

--Kurt

[Guest guest]

Hi Rosie

Many with ME/CFS seem to have some degree of hypermobility. I have

it, so do many in my family including one sibling who's the worst

affected, and my son. So far only two of us have had ME or a similar

illness, my son and I. We also have a history of problems with

infections, chemicals, etc and were the only ones to have adverse

reactions to vaccines. The sibling whose most severely affected does

suffer from fatigue so maybe that's why Prof Hooper excludes it from

ME.

Hypermobility was discussed on another board some time ago; one

theory was that hypermobility syndromes lead to numerous injuries so

the body is constantly going into repair mode that often invovled

inflammation.

My son's phlebitis has returned yet again (only in his 20s), varicose

veins and similar weaknesses are not uncommon in hypermobility

syndromes, his father sufferes from varicose veins but no

hypermobility; so I guess he was unlucky genetically.

There's an organisation for PWHS in the UK; their web site features a

symptom list for more generalised hypermobility syndromes at

http://www.hypermobility.org/diagnosis.php

TC, Tansy

There's a good

>

> Hi Kurt, Edy,

>

>

> I have been watching the DVD of the UK ME Conference and DR Byron

Hyde's

> talk. He mentions hyper-mobility of the joints, though his

conclusions

> are a little confusing. He is referring to a particular case study,

> where the patient has this, but then says if you are hyper-mobile

you

> don't have ME! I'm a bit confused. If anyone knows of this

element of

> his work I would love to have some clarification. I am not hyper

> mobile, but could do the splits etc when younger and can still get

my

> foot to my neck, but cannot touch my nose with my tongue, my forearm

> with my thumb etc. MY daughter, however is extremely mobile in

these

> regards and so I wonder what (if anything) this means in terms of

her

> likelihood of one day getting ME?

>

> Rosie

>

[Guest guest]

Hi, all.

Those of you interested in hyperextensibility or hypermobility of

the joints in CFS or FM might want to consider Ehlers-Danlos

syndrome. This is a collection of genetically based syndromes that

involve abnormalities in the connective tissue, including ligaments

and skin as well. This has been reported in the literature in

connection with both CFS and FM. I met a woman several years ago at

a seminar on these disorders once who had been a dancer and gymnast

and had been able to do amazing things with her body as a younger

person, but at the time was suffering from fibromyalgia. I think

she was one of the first people to tell me about Ehlers-Danlos

syndrome.

Rich

>

> Hi Kurt, Edy,

>

>

> I have been watching the DVD of the UK ME Conference and DR Byron

Hyde's

> talk. He mentions hyper-mobility of the joints, though his

conclusions

> are a little confusing. He is referring to a particular case

study,

> where the patient has this, but then says if you are hyper-mobile

you

> don't have ME! I'm a bit confused. If anyone knows of this

element of

> his work I would love to have some clarification. I am not hyper

> mobile, but could do the splits etc when younger and can still get

my

> foot to my neck, but cannot touch my nose with my tongue, my

forearm

> with my thumb etc. MY daughter, however is extremely mobile in

these

> regards and so I wonder what (if anything) this means in terms of

her

> likelihood of one day getting ME?

>

> Rosie

>

> Edy>>This is interesting to me as I've always been very " bendy " .

Even

> now at 55 I can still touch my knees with my forhead standing or

on the

> floor. Also can bend my finger into those angles. Many docs have

> commented on this.

>

> This is consistent with my connective tissue disorder hypothesis

for

> CFS. Shoemaker observes that we have longer 'wingspan' and are

often

> hypermobile, which are markers for Marfan. I believe about 80% of

PWC

> have this, per Shoemaker, a subclinical form of Marfan (we do not

all

> seem to have all the signs of Marfan) . Anyway, the hypothesis is

that

> if your connective tissues are 'spongy' and more flexible, they

are more

> porous, and therefore can harbor sequestered, chronic infections,

such

> as Bb, and probably also mycoplasmas. This is a safe place for

those

> infections, out of reach of the blood supply and much of the immune

> system. Then I believe the infections there produce a steady

stream of

> biotoxins. An interested adjunct to this is that physical exertion

will

> squeeze more biotoxins from those spongy and infected connective

> tissues. And of course, if a person has poor GSH status, then they

> will feel more of the effects of that biotoxin load.

>

> So I believe that the joint flexibility offers a profound insight,

but

> one must connect these dots.

>

> --Kurt

>

>

>

>

[Guest guest]

There are only believed to be 50,000 cases of Ehlers-Danlos in the US

per About.com, so this probably it not all that common even among PWC.

However, maybe there are some cross-over genes, as some of the features

do seem familiar.

This may be easy to test. If you think you have Ehlers-Danlos, can you

do this?

http://adam.about.com/encyclopedia/2409.htm

--Kurt

Re: Joint Flexibility May Offer Insight

Into CFS

Hi, all.

Those of you interested in hyperextensibility or hypermobility of

the joints in CFS or FM might want to consider Ehlers-Danlos

syndrome. This is a collection of genetically based syndromes that

involve abnormalities in the connective tissue, including ligaments

and skin as well. This has been reported in the literature in

connection with both CFS and FM. I met a woman several years ago at

a seminar on these disorders once who had been a dancer and gymnast

and had been able to do amazing things with her body as a younger

person, but at the time was suffering from fibromyalgia. I think

she was one of the first people to tell me about Ehlers-Danlos

syndrome.

Rich

[Guest guest]

None of this would come as any surprise to Dr. Shoemaker, either. I

wonder if he's been in touch with these people. If he hasn't, maybe

he should be.

Sara

On Aug 12, 2006, at 8:45 AM, rvankonynen wrote:

> Hi, all.

>

> Those of you interested in hyperextensibility or hypermobility of

> the joints in CFS or FM might want to consider Ehlers-Danlos

> syndrome. This is a collection of genetically based syndromes that

> involve abnormalities in the connective tissue, including ligaments

> and skin as well. This has been reported in the literature in

> connection with both CFS and FM. I met a woman several years ago at

> a seminar on these disorders once who had been a dancer and gymnast

> and had been able to do amazing things with her body as a younger

> person, but at the time was suffering from fibromyalgia. I think

> she was one of the first people to tell me about Ehlers-Danlos

> syndrome.

>

> Rich

>

>

>>

>> Hi Kurt, Edy,

>>

>>

>> I have been watching the DVD of the UK ME Conference and DR Byron

> Hyde's

>> talk. He mentions hyper-mobility of the joints, though his

> conclusions

>> are a little confusing. He is referring to a particular case

> study,

>> where the patient has this, but then says if you are hyper-mobile

> you

>> don't have ME! I'm a bit confused. If anyone knows of this

> element of

>> his work I would love to have some clarification. I am not hyper

>> mobile, but could do the splits etc when younger and can still get

> my

>> foot to my neck, but cannot touch my nose with my tongue, my

> forearm

>> with my thumb etc. MY daughter, however is extremely mobile in

> these

>> regards and so I wonder what (if anything) this means in terms of

> her

>> likelihood of one day getting ME?

>>

>> Rosie

>>

>> Edy>>This is interesting to me as I've always been very " bendy " .

> Even

>> now at 55 I can still touch my knees with my forhead standing or

> on the

>> floor. Also can bend my finger into those angles. Many docs have

>> commented on this.

>>

>> This is consistent with my connective tissue disorder hypothesis

> for

>> CFS. Shoemaker observes that we have longer 'wingspan' and are

> often

>> hypermobile, which are markers for Marfan. I believe about 80% of

> PWC

>> have this, per Shoemaker, a subclinical form of Marfan (we do not

> all

>> seem to have all the signs of Marfan) . Anyway, the hypothesis is

> that

>> if your connective tissues are 'spongy' and more flexible, they

> are more

>> porous, and therefore can harbor sequestered, chronic infections,

> such

>> as Bb, and probably also mycoplasmas. This is a safe place for

> those

>> infections, out of reach of the blood supply and much of the immune

>> system. Then I believe the infections there produce a steady

> stream of

>> biotoxins. An interested adjunct to this is that physical exertion

> will

>> squeeze more biotoxins from those spongy and infected connective

>> tissues. And of course, if a person has poor GSH status, then they

>> will feel more of the effects of that biotoxin load.

>>

>> So I believe that the joint flexibility offers a profound insight,

> but

>> one must connect these dots.

>>

>> --Kurt

>>

>>

>>

>>

[Guest guest]

Long term excess cortisol causes loose ligaments thus causing joint hyper

mobility.I read this at couple of places.

Nil

Re: Re: Joint Flexibility May Offer Insight

Into CFS

> None of this would come as any surprise to Dr. Shoemaker, either. I

> wonder if he's been in touch with these people. If he hasn't, maybe

> he should be.

>

[Guest guest]

Hi Tansy,

many thanks for reply and link. My daughter really is astoundingly

mobile, but as yet seems to be in perfect health. I am very cautious

about vaccines etc, and whilst they have had their childhood vaccines

without incident I am not letting them have Hep B (they have evening

jobs cleaning in the local hospital whilst studying for A levels). I

think Hep B would be a step too far, the risks of the vaccine

outweigh, in my opinion, the occupational hazard.

Rosie

> >

> > Hi Kurt, Edy,

> >

> >

> > I have been watching the DVD of the UK ME Conference and DR Byron

> Hyde's

> > talk. He mentions hyper-mobility of the joints, though his

> conclusions

> > are a little confusing. He is referring to a particular case

study,

> > where the patient has this, but then says if you are hyper-mobile

> you

> > don't have ME! I'm a bit confused. If anyone knows of this

> element of

> > his work I would love to have some clarification. I am not hyper

> > mobile, but could do the splits etc when younger and can still

get

> my

> > foot to my neck, but cannot touch my nose with my tongue, my

forearm

> > with my thumb etc. MY daughter, however is extremely mobile in

> these

> > regards and so I wonder what (if anything) this means in terms of

> her

> > likelihood of one day getting ME?

> >

> > Rosie

> >

>