Re: The War on ME / class action law suit?

[Guest guest]

Is possible for those of use that have suffered for so many years to bring a

class action law suit against these agencies that have inflicted so much

suffering because of their inaptness?

[Guest guest]

that might be tricky until there is scientific proof that ME is a

real disease. it would be interesting to see what happend with

people with MS as that was once considered a disease that was 'in

your head'.

even doctors that beleive in CFS, (at least mine) don't really seem

to know alot about it

I asked her if I should put it on my list of diagnoses (I am

preparing for a hospital stay) and she said:

" CSF is a diagnosis of exclusion - so difficult to say at this point

whether what you have is that or not. Seizures aren't a usual

component of it. "

but I do think that if we could look to see if people with MS sued

back in the day, that would be a good example to go off of for our

situation

>

> Is possible for those of use that have suffered for so many years

to bring a

> class action law suit against these agencies that have inflicted

so much

> suffering because of their inaptness?

>

>

>

[Guest guest]

I believe there is ALL TYPES of evidence that ME is a disease, and has been for

many, many years. I think a lot of the confusion lies whether ME and CFS are

the same, and from what I have read,they are not! Very similar,but not exactly

the same. Sounds to me like it all comes down to a particular type of brain

scan, much more precise than the standard brain MRI, but I can't remember what

it's called right now (big surprise to all of you, right? )

Just my two cents worth...........

STL Jane

michele wrote: that

might be tricky until there is scientific proof that ME is a

real disease. it would be interesting to see what happend with

people with MS as that was once considered a disease that was 'in

your head'.

even doctors that beleive in CFS, (at least mine) don't really seem

to know alot about it

I asked her if I should put it on my list of diagnoses (I am

preparing for a hospital stay) and she said:

[Guest guest]

I believe there is ALL TYPES of evidence that ME is a disease, and has been for

many, many years. I think a lot of the confusion lies whether ME and CFS are

the same, and from what I have read,they are not! Very similar,but not exactly

the same. Sounds to me like it all comes down to a particular type of brain

scan, much more precise than the standard brain MRI, but I can't remember what

it's called right now (big surprise to all of you, right? )

Just my two cents worth...........

STL Jane

michele wrote: that

might be tricky until there is scientific proof that ME is a

real disease. it would be interesting to see what happend with

people with MS as that was once considered a disease that was 'in

your head'.

[Guest guest]

if you remember what the precise test is called, let me know. i'd be

curious to see how it works. (I've done MRI's - 3 times already -

and ... is it just me or are the supposed open mri's still

clausterphobic?)

>

> I believe there is ALL TYPES of evidence that ME is a disease, and

has been for many, many years. I think a lot of the confusion lies

whether ME and CFS are the same, and from what I have read,they are

not! Very similar,but not exactly the same. Sounds to me like it

all comes down to a particular type of brain scan, much more precise

than the standard brain MRI, but I can't remember what it's called

right now (big surprise to all of you, right? )

[Guest guest]

We need a reposting of a thread that was intitled the facts about

ME. IT was determined to be a real disease but then the name was

changed to CFS. It has been the fight every since as to weather CFS

is real or not. There was money appropriated tward ME but was used

for something else by smokescreening the name change of ME to CFS.

I wish I could find it..perhaps someone that posted it can post it

again. ME and CFS are two different animuls or seems to be because

many have claimed they have CFS and not ME.

I think if we could collectively get a few brain cells

together ...flaring off at the same time, we could find these

historical truths and maybe some action could be taken from there.

[Guest guest]

" hummingbirds guide " website has a very clear analysis of the ME vs. CFS

issue. I'm with her! Aylwin

[Guest guest]

I know! I did the open-SIDED MRI twice now, and I still don't like that closed

in feeling, can that thing be ANY closer to your face...........freaks me right

out!

If I come across it again, the name of the test that is, I will re post it

Michele.

STL Jane

michele wrote: if you

remember what the precise test is called, let me know. i'd be

curious to see how it works. (I've done MRI's - 3 times already -

and ... is it just me or are the supposed open mri's still

clausterphobic?)

>

[Guest guest]

hello! thank you! I am glad someone else feels that way! everyone

else I know was like what's the big deal, but I hate it

>

> I know! I did the open-SIDED MRI twice now, and I still don't

like that closed in feeling, can that thing be ANY closer to your

face...........freaks me right out!

> If I come across it again, the name of the test that is, I will re

post it Michele.

[Guest guest]

,

I'm number three on this subject! I never knew I was closterphobic

until I was put in a MRI. My last one was done in open and it was

just as bad! It is the space above your face, not beside you. There

was no flow of air and I asked for it and she just shrugged it off

doing nothing. I had to have a wet cold cloth over my eyes as the

light gave me a migrain and I was really stressed out bigtime~!

No sweetie...it's not just you!

> hello! thank you! I am glad someone else feels that way! everyone

> else I know was like what's the big deal, but I hate it

>

>

> >

> > I know! I did the open-SIDED MRI twice now, and I still don't

> like that closed in feeling, can that thing be ANY closer to your

> face...........freaks me right out!

> > If I come across it again, the name of the test that is, I will re

> post it Michele.

>

[Guest guest]

,

I'm number three on this subject! I never knew I was closterphobic

until I was put in a MRI. My last one was done in open and it was

just as bad! It is the space above your face, not beside you. There

was no flow of air and I asked for it and she just shrugged it off

doing nothing. I had to have a wet cold cloth over my eyes as the

light gave me a migrain and I was really stressed out bigtime~!

No sweetie...it's not just you!

> hello! thank you! I am glad someone else feels that way! everyone

> else I know was like what's the big deal, but I hate it

>

>

> >

> > I know! I did the open-SIDED MRI twice now, and I still don't

> like that closed in feeling, can that thing be ANY closer to your

> face...........freaks me right out!

> > If I come across it again, the name of the test that is, I will re

> post it Michele.

>