does this group address M.E. or normally CFS?

[Guest guest]

Hi,

I have been dropping in and out for a while,

and assuming that supplements and research mentioned on this site

were related to M.E.: now I think I perhaps got it wrong and most

information given here actually relates to CFS?

Of course I dont mean to disparage anyone or anything, all of these

type of illnesses are equally valid and I personally do not think

that any of them are psychological; (thats a political myth yes?)

but I am confused because I thought that with CFS chronic fatigue

was the most significant symptom-I also hear a lot about people with

CFS 'getting better'; particularly, that they sometimes improve with

exercise programmes.

Whilst on the other hand I thought that with M.E. chronic fatigue is

quite often not a symptom at all, whilst exercise intolerance is a

significant symptom and exercise programmes will cause a major

setback,

and whilst people with M.E. can have remissions if they are lucky,

they will relapse again when they then try to push their limits too

hard; you dont hear of people with M.E. getting better, either.

I know there are different diagnostic criteria being used all over

the place which mixes things up, I got the impression this mixing up

is deliberate for political reasons?

I have cognitive difficulties so I am easily confused at the best of

times- does anyone here have any helpful advice to clear things up

for me so I know what I am looking at at least on this site?

- should I ignore all information here that relates to chronic

fatigue or CFS to be on the safe side, because on occasion people

dont always know the difference between these two different things

-let alone the major differences between M.E. and CFS- and the CFS

information may be totally inappropriate for M.E.?

my brain hurts!

[Guest guest]

Interesting,

I uderstand that they are basically one and the same.  Just different names for

the illness.  With ME being more European and CFS more American.  Could be

wrong though.

Your cognitive issues you mention, I totally remember them being so awful.  I

train with my dogs in competition level events of Rally O.  WHen I got sick, I

couldnt do it any longer.  Not only are there symbols on little signs at every

station " telling " you what to do (like back up three steps and turn around to

your left) but there is a certain smoothness to your performance that is

expected.  So my standing there like a drooling idiot, staring at each sign

until I could figure out what it meant was so humiliating.  But having my dog

tell ME what to do was even weirder.  I dont know what miniscule signs of mine

he was reading at the stations, but he would be able to lead ME through the

course. 

I also couldnt read for pleasure anymore.  And driving was scary at times.  It

is amazing and terrifying how deeply this illness can impact your life.

I have gotten quite a bit better in the 5-6 yrs I have been sick.  I would say

I am at about a 80% recovery. 

I NEVER excersized once I became ill.  The post exertional Malaise was a great

teacher.  I was very muscular prior to becoming ill.  I Worked with my body my

entire life.  I can only assume it was that " prexisting " muscle that saw me

through until now.  I have lost mass and definition, but am able to rebuild it

finally.  I can suggest trying some LIGHT TaiChi or yoga for balance issues. 

That helped me.  I had a great personal trainer who showed me breathing

excersizes and balance work.  (If any Chgo folks want a name of someone who

" gets " your limitations now, it is Harold Rose.  Really nice man.)

I have been on massive amounts of hypoallergenic suppliments for years now.  I

think they are very important, but obviously not the cure for the illness. 

Magnesium being the most important for me to date. 

I know this is going to cause a stir- but phenalalinine sp? an amino acid in

Aspertame actually halped me quite a bit as well.  I had never had diet sodas

til I got sick.  WHen I found myself out working and wanting a drink,  I got

a Diet coke and within 20 minutes I felt SO much better.  I kept experimenting

with it (it wasnt the caffiene and it wasnt the brand) and finally found that

this one amino acid in the sweetener was what was helping me.  So I drank a

diet soda a day (about 80 mgs of phenalainine) when Id felt myself dragging. 

One mans poison is another's cure I guess.

However I havent had a need for that since the Sinatra Protocol.  So I have

happily cut it out of my diet.  I dont like the taste ayway.

You just have to keep trying things out ONE at a time, cant stress that

enough.  If you try two things at once, you wont know what did what.  Journal

your progress if there is any. See allergists.  Nutritionists. Read books

on CFS ME etc etc...

And there IS a psychological thread to the illness.  Unfortunately many Drs

just see the weariness and depression- so assume it is a mental illness.  I

remember Pappernick asking me if I was depressed and I must have given him the

most exasperated look.   He sat back and laughed a little, " Oh.... ok, you

arent sick because you are depressed, you are depressed because you are sick. "  

He already knew the answer, but it was good to hear HIM say it.

The antidepressants so many Drs want to give you arent for the depression

anyway, but for the seratonin production.  They arent trying to treat

depression behind your back (well, maybe some are), but use the medicine's side

effects to help with things like incontinance and sleep.  Imipramine helped me

with those things.  at 12 mg!  Not the adult dosage of 80-150 mgs. 

I was on that for only a short time til  my body was retrained about peeing.

ANyway- Dont excersize if it hurts you.

Connie

 Sassafras Valley Farm

does this group address M.E. or normally CFS?

Hi,

I have been dropping in and out for a while,

and assuming that supplements and research mentioned on this site

were related to M.E.: now I think I perhaps got it wrong and most

information given here actually relates to CFS?

Of course I dont mean to disparage anyone or anything, all of these

type of illnesses are equally valid and I personally do not think

that any of them are psychological; (thats a political myth yes?)

but I am confused because I thought that with CFS chronic fatigue

was the most significant symptom-I also hear a lot about people with

CFS 'getting better'; particularly, that they sometimes improve with

exercise programmes.

Whilst on the other hand I thought that with M.E. chronic fatigue is

quite often not a symptom at all, whilst exercise intolerance is a

significant symptom and exercise programmes will cause a major

setback,

and whilst people with M.E. can have remissions if they are lucky,

they will relapse again when they then try to push their limits too

hard; you dont hear of people with M.E. getting better, either.

I know there are different diagnostic criteria being used all over

the place which mixes things up, I got the impression this mixing up

is deliberate for political reasons?

I have cognitive difficulties so I am easily confused at the best of

times- does anyone here have any helpful advice to clear things up

for me so I know what I am looking at at least on this site?

- should I ignore all information here that relates to chronic

fatigue or CFS to be on the safe side, because on occasion people

dont always know the difference between these two different things

-let alone the major differences between M.E. and CFS- and the CFS

information may be totally inappropriate for M.E.?

my brain hurts!

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

" s1mplicity099 " <simplicity46@...> wrote:

>

> Hi,

>

> I have been dropping in and out for a while,

> and assuming that supplements and research mentioned on this site

> were related to M.E.: now I think I perhaps got it wrong and most

> information given here actually relates to CFS?

>

CFS has been totally infiltrated by people refuse to agree that their

illness is the same CFS described by Dr and Cheney.

They keep pointing to the watered down CFS definitions and insisting

that as long as they have those, that this is real CFS.

If someone REFUSES to acknowledge that their CFS is ME/CFS and is

primarily fatigue, well, you've got your answer as to what type of CFS

they are discussing.

-

[Guest guest]

Hi there

I realise that your post wasnt a reply to the questions I asked,

rather you were discussing other questions, but I will try to

respond to you as best I can

first of all I must say, many thanks for your thoughts, I do

understand that you dotn mean any harm, you are not a bad person and

you do mean well

But this definitely quite a side issue to what I was asking for,

and it is a massive can of worms to be opening up!

I have had M.E. for more than eleven years.

I understand there is a great deal of heated controversy and very

likely some serious political shennanigans regarding the (apparently

totally deliberate) confusion of 'chronic fatigue' with 'neurological

M.E.'

in particular some psychiatrists (who IMHO are operating entirely

out of their area of expertise here) do try very hard indeed to

pretend that 'exercise intolerance' is the same thing

as 'deconditioning';

but there is a great deal of scientific evidence such as brain

scanning etc which actually proves that these psychiatrists are

extremely deceitful.

With the neurological disorder M.E., exercise does not 'hurt' me any

more than it would anyone else.

Of course that wouldnt be a problem, how silly would one have to be,

to be seriously ill for eleven years and have your life completely

ruined just because of a little muscle or joint pain after exercise-

which everyone is familiar with and knows is normal lol.

-although I do have neuropathic pain- not actually related to

exercise- which is another large subject that I cant go into right

now because my computer time is limted.-

On the contrary to exercise hurting-I have exercise intolerance-which

is quite another thing entirely.

this exercise intolerance means that 'overdoing things' (normal and

very gentle activities to healthy people) not only causes me to

become bedridden with payback

-debilitating flu like illness that usually hits about 24 hours after

an activity and can last for days or sometimes weeks

-and in addition the consequences of repeatedly pushing your limits

this way can be more serious.

- my M.E.CFS specialist carefully explained this to me

(on a recorded tape; so I can listen to it and make sure I have got

it right)

that with M.E.; he believes that exercise causes an overproduction

of cytokines: that in turn causes brain damage

- which said brain damage may or may not be reversable-

and it will make the illness much worse

- in fact greatly reduce the chances of any improvement

- and increases already serious cognitive difficulties-

(in my case these cognitive losses are considerable, as it happens

luckily writing is my best form of communication, because I would not

be able to relate this information to you verbally, just one single

example is that I cannot drive because it is not safe for me to do

so; purely because of the loss of spatial judgement and

concentration).

These are the important reasons why M.E. specialists

(who ARE working in their own area of expertise) emphatically do not

advocate exercise in any way shape or form-

but instead advise patients to follow very careful pacing techniques

and activity management, just to get as much as they can out of life

without causing a serious setback..

every little thing has to be counted- from brushing your teeth to

watching the weather forecast, having a conversation is a biggie.

ie for the person who is bedridden with M.E.; sitting up in bed is a

major activity- I am one of the relatively lucky ones there are

people much worse off than I am-watch out because the 'psychiatric

lobby' do try very hard to trivialise this serious neurological

disorder as much as possible

everything is an activity, especially things like sitting at this

machine trying to explain things with my damaged brain, so I am

taking my poor aching head off for a 30 minute rest after this as

prescribed.

meanwhile, if anyone can answer the original questions I asked-

about what the information on this site actually refers to-

without opening any nasty cans of worms or causing any upset

in order to help me to discriminate between what might be useful for

me here and what could be harmful please?

- In , acermay@... wrote:

>

>

> Interesting,

>

>

>

> I uderstand that they are basically one and the same.  Just

different names for the illness.  With ME being more European and

CFS more American.  Could be wrong though.

>

>

>

> Your cognitive issues you mention, I totally remember them being

so awful.  I train with my dogs in competition level events of Rally

O.  WHen I got sick, I couldnt do it any longer.  Not only are

there symbols on little signs at every station " telling " you what to

do (like back up three steps and turn around to your left) but there

is a certain smoothness to your performance that is expected.  So my

standing there like a drooling idiot, staring at each sign until I

could figure out what it meant was so humiliating.  But having my

dog tell ME what to do was even weirder.  I dont know what miniscule

signs of mine he was reading at the stations, but he would be able to

lead ME through the course. 

>

> I also couldnt read for pleasure anymore.  And driving was scary

at times.  It is amazing and terrifying how deeply this illness can

impact your life.

>

> I have gotten quite a bit better in the 5-6 yrs I have been sick. 

I would say I am at about a 80% recovery. 

>

> I NEVER excersized once I became ill.  The post exertional Malaise

was a great teacher.  I was very muscular prior to becoming ill.  I

Worked with my body my entire life.  I can only assume it was

that " prexisting " muscle that saw me through until now.  I have lost

mass and definition, but am able to rebuild it finally.  I can

suggest trying some LIGHT TaiChi or yoga for balance issues.  That

helped me.  I had a great personal trainer who showed me breathing

excersizes and balance work.  (If any Chgo folks want a name of

someone who " gets " your limitations now, it is Harold Rose.  Really

nice man.)

>

> I have been on massive amounts of hypoallergenic suppliments for

years now.  I think they are very important, but obviously not the

cure for the illness.  Magnesium being the most important for me to

date. 

>

> I know this is going to cause a stir- but phenalalinine sp? an

amino acid in Aspertame actually halped me quite a bit as well.  I

had never had diet sodas til I got sick.  WHen I found myself out

working and wanting a drink,  I got a Diet coke and within 20

minutes I felt SO much better.  I kept experimenting with it (it

wasnt the caffiene and it wasnt the brand) and finally found that

this one amino acid in the sweetener was what was helping me.  So I

drank a diet soda a day (about 80 mgs of phenalainine) when Id felt

myself dragging.  One mans poison is another's cure I guess.

>

> However I havent had a need for that since the Sinatra Protocol. 

So I have happily cut it out of my diet.  I dont like the taste

ayway.

>

> You just have to keep trying things out ONE at a time, cant stress

that enough.  If you try two things at once, you wont know what did

what.  Journal your progress if there is any. See allergists. 

Nutritionists. Read books on CFS ME etc etc...

>

> And there IS a psychological thread to the illness. 

Unfortunately many Drs just see the weariness and depression- so

assume it is a mental illness.  I remember Pappernick asking me if I

was depressed and I must have given him the most exasperated

look.   He sat back and laughed a little, " Oh.... ok, you arent

sick because you are depressed, you are depressed because you are

sick. "   He already knew the answer, but it was good to hear HIM say

it.

>

> The antidepressants so many Drs want to give you arent for the

depression anyway, but for the seratonin production.  They arent

trying to treat depression behind your back (well, maybe some are),

but use the medicine's side effects to help with things like

incontinance and sleep.  Imipramine helped me with those things. 

at 12 mg!  Not the adult dosage of 80-150 mgs. 

>

> I was on that for only a short time til  my body was retrained

about peeing.

>

> ANyway- Dont excersize if it hurts you.

>

> Connie

>

>

>

>

>  Sassafras Valley Farm

>

>

> does this group address M.E. or

normally CFS?

>

>

>

>

>

>

> Hi,

>

> I have been dropping in and out for a while,

> and assuming that supplements and research mentioned on this site

> were related to M.E.: now I think I perhaps got it wrong and most

> information given here actually relates to CFS?

>

> Of course I dont mean to disparage anyone or anything, all of these

> type of illnesses are equally valid and I personally do not think

> that any of them are psychological; (thats a political myth yes?)

>

> but I am confused because I thought that with CFS chronic fatigue

> was the most significant symptom-I also hear a lot about people

with

> CFS 'getting better'; particularly, that they sometimes improve

with

> exercise programmes.

>

> Whilst on the other hand I thought that with M.E. chronic fatigue

is

> quite often not a symptom at all, whilst exercise intolerance is a

> significant symptom and exercise programmes will cause a major

> setback,

> and whilst people with M.E. can have remissions if they are lucky,

> they will relapse again when they then try to push their limits too

> hard; you dont hear of people with M.E. getting better, either.

>

> I know there are different diagnostic criteria being used all over

> the place which mixes things up, I got the impression this mixing

up

> is deliberate for political reasons?

>

> I have cognitive difficulties so I am easily confused at the best

of

> times- does anyone here have any helpful advice to clear things up

> for me so I know what I am looking at at least on this site?

>

> - should I ignore all information here that relates to chronic

> fatigue or CFS to be on the safe side, because on occasion people

> dont always know the difference between these two different things

>

> -let alone the major differences between M.E. and CFS- and the CFS

> information may be totally inappropriate for M.E.?

>

> my brain hurts!

>

>

>

>

>

>

______________________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

[Guest guest]

Are you responding to me? Did I say you should excersize?  I don't think so. 

Theres been a misunderstanding.  Sorry about that.  Hope you get the

information you need.

Connie

 Sassafras Valley Farm

does this group address M.E. or

normally CFS?

>

>

>

>

>

>

> Hi,

>

> I have been dropping in and out for a while,

> and assuming that supplements and research mentioned on this site

> were related to M.E.: now I think I perhaps got it wrong and most

> information given here actually relates to CFS?

>

> Of course I dont mean to disparage anyone or anything, all of these

> type of illnesses are equally valid and I personally do not think

> that any of them are psychological; (thats a political myth yes?)

>

> but I am confused because I thought that with CFS chronic fatigue

> was the most significant symptom-I also hear a lot about people

with

> CFS 'getting better'; particularly, that they sometimes improve

with

> exercise programmes.

>

> Whilst on the other hand I thought that with M.E. chronic fatigue

is

> quite often not a symptom at all, whilst exercise intolerance is a

> significant symptom and exercise programmes will cause a major

> setback,

> and whilst people with M.E. can have remissions if they are lucky,

> they will relapse again when they then try to push their limits too

> hard; you dont hear of people with M.E. getting better, either.

>

> I know there are different diagnostic criteria being used all over

> the place which mixes things up, I got the impression this mixing

up

> is deliberate for political reasons?

>

> I have cognitive difficulties so I am easily confused at the best

of

> times- does anyone here have any helpful advice to clear things up

> for me so I know what I am looking at at least on this site?

>

> - should I ignore all information here that relates to chronic

> fatigue or CFS to be on the safe side, because on occasion people

> dont always know the difference between these two different things

>

> -let alone the major differences between M.E. and CFS- and the CFS

> information may be totally inappropriate for M.E.?

>

> my brain hurts!

>

>

>

>

>

>

__________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

[Guest guest]

There are two different definitions for CFS. One is by doctors, and

one is by laypeople. But sometimes even doctors incorrectly use the

lay term.

CFS comes in two forms. Sudden onset, which is the same as ME, and

gradual onset, which is not the same as ME, but shares many of the

symptoms. The chronic fatigue described in the medical definition of

CFS actually refers to exercise intolerance, whether it is from

sudden or gradual onset CFS. So yes, you are in the right place.

And yes, there is a confusion between 'chronic fatigue', which might

be psychological, and Chronic Fatigue Syndrome, which is what is

being discussed here.

So I take it if you were diagnosed with ME, you had a sudden onset?

If so, there is a very promising treatment for those with ME/sudden

onset CFS(same thing) with an antiviral drug called Valcyte.

Here are some links.

http://vicd.info/

http://med.stanford.edu/patient_care/spotlight/archive/chronic-

fatigue.html

http://www.fileden.com/files/2007/2/6/741817/MontoyaRevised.pdf

> >

> >

> > Interesting,

> >

> >

> >

> > I uderstand that they are basically one and the same.  Just

> different names for the illness.  With ME being more European and

> CFS more American.  Could be wrong though.

> >

> >

> >

> > Your cognitive issues you mention, I totally remember them being

> so awful.  I train with my dogs in competition level events of

Rally

> O.  WHen I got sick, I couldnt do it any longer.  Not only are

> there symbols on little signs at every station " telling " you what

to

> do (like back up three steps and turn around to your left) but

there

> is a certain smoothness to your performance that is expected.  So

my

> standing there like a drooling idiot, staring at each sign until I

> could figure out what it meant was so humiliating.  But having my

> dog tell ME what to do was even weirder.  I dont know what

miniscule

> signs of mine he was reading at the stations, but he would be able

to

> lead ME through the course. 

> >

> > I also couldnt read for pleasure anymore.  And driving was scary

> at times.  It is amazing and terrifying how deeply this illness

can

> impact your life.

> >

> > I have gotten quite a bit better in the 5-6 yrs I have been

sick. 

> I would say I am at about a 80% recovery. 

> >

> > I NEVER excersized once I became ill.  The post exertional

Malaise

> was a great teacher.  I was very muscular prior to becoming ill. 

I

> Worked with my body my entire life.  I can only assume it was

> that " prexisting " muscle that saw me through until now.  I have

lost

> mass and definition, but am able to rebuild it finally.  I can

> suggest trying some LIGHT TaiChi or yoga for balance issues.  That

> helped me.  I had a great personal trainer who showed me breathing

> excersizes and balance work.  (If any Chgo folks want a name of

> someone who " gets " your limitations now, it is Harold Rose. 

Really

> nice man.)

> >

> > I have been on massive amounts of hypoallergenic suppliments for

> years now.  I think they are very important, but obviously not the

> cure for the illness.  Magnesium being the most important for me

to

> date. 

> >

> > I know this is going to cause a stir- but phenalalinine sp? an

> amino acid in Aspertame actually halped me quite a bit as well.  I

> had never had diet sodas til I got sick.  WHen I found myself out

> working and wanting a drink,  I got a Diet coke and within 20

> minutes I felt SO much better.  I kept experimenting with it (it

> wasnt the caffiene and it wasnt the brand) and finally found that

> this one amino acid in the sweetener was what was helping me.  So

I

> drank a diet soda a day (about 80 mgs of phenalainine) when Id felt

> myself dragging.  One mans poison is another's cure I guess.

> >

> > However I havent had a need for that since the Sinatra

Protocol. 

> So I have happily cut it out of my diet.  I dont like the taste

> ayway.

> >

> > You just have to keep trying things out ONE at a time, cant

stress

> that enough.  If you try two things at once, you wont know what

did

> what.  Journal your progress if there is any. See allergists. 

> Nutritionists. Read books on CFS ME etc etc...

> >

> > And there IS a psychological thread to the illness. 

> Unfortunately many Drs just see the weariness and depression- so

> assume it is a mental illness.  I remember Pappernick asking me if

I

> was depressed and I must have given him the most exasperated

> look.   He sat back and laughed a little, " Oh.... ok, you arent

> sick because you are depressed, you are depressed because you are

> sick. "   He already knew the answer, but it was good to hear HIM

say

> it.

> >

> > The antidepressants so many Drs want to give you arent for the

> depression anyway, but for the seratonin production.  They arent

> trying to treat depression behind your back (well, maybe some are),

> but use the medicine's side effects to help with things like

> incontinance and sleep.  Imipramine helped me with those things. 

> at 12 mg!  Not the adult dosage of 80-150 mgs. 

> >

> > I was on that for only a short time til  my body was retrained

> about peeing.

> >

> > ANyway- Dont excersize if it hurts you.

> >

> > Connie

> >

> >

> >

> >

> >  Sassafras Valley Farm

> >

> >

> > does this group address M.E. or

> normally CFS?

> >

> >

> >

> >

> >

> >

> > Hi,

> >

> > I have been dropping in and out for a while,

> > and assuming that supplements and research mentioned on this site

> > were related to M.E.: now I think I perhaps got it wrong and most

> > information given here actually relates to CFS?

> >

> > Of course I dont mean to disparage anyone or anything, all of

these

> > type of illnesses are equally valid and I personally do not think

> > that any of them are psychological; (thats a political myth yes?)

> >

> > but I am confused because I thought that with CFS chronic fatigue

> > was the most significant symptom-I also hear a lot about people

> with

> > CFS 'getting better'; particularly, that they sometimes improve

> with

> > exercise programmes.

> >

> > Whilst on the other hand I thought that with M.E. chronic fatigue

> is

> > quite often not a symptom at all, whilst exercise intolerance is

a

> > significant symptom and exercise programmes will cause a major

> > setback,

> > and whilst people with M.E. can have remissions if they are

lucky,

> > they will relapse again when they then try to push their limits

too

> > hard; you dont hear of people with M.E. getting better, either.

> >

> > I know there are different diagnostic criteria being used all

over

> > the place which mixes things up, I got the impression this mixing

> up

> > is deliberate for political reasons?

> >

> > I have cognitive difficulties so I am easily confused at the best

> of

> > times- does anyone here have any helpful advice to clear things

up

> > for me so I know what I am looking at at least on this site?

> >

> > - should I ignore all information here that relates to chronic

> > fatigue or CFS to be on the safe side, because on occasion people

> > dont always know the difference between these two different things

> >

> > -let alone the major differences between M.E. and CFS- and the

CFS

> > information may be totally inappropriate for M.E.?

> >

> > my brain hurts!

> >

> >

> >

> >

> >

> >

>

______________________________________________________________________

> __

> > AOL now offers free email to everyone. Find out more about

what's

> free from AOL at AOL.com.

> >

> >

> >

[Guest guest]

M.E. = CFS and CFS = M.E. A rose by another name is as sweet

<simplicity46@...> wrote:

>

> Hi,

>

> I have been dropping in and out for a while,

> and assuming that supplements and research mentioned on this site

> were related to M.E.: now I think I perhaps got it wrong and most

> information given here actually relates to CFS?

>

> Of course I dont mean to disparage anyone or anything, all of these

> type of illnesses are equally valid and I personally do not think

> that any of them are psychological; (thats a political myth yes?)

>

> but I am confused because I thought that with CFS chronic fatigue

> was the most significant symptom-I also hear a lot about people with

> CFS 'getting better'; particularly, that they sometimes improve with

> exercise programmes.

>

> Whilst on the other hand I thought that with M.E. chronic fatigue is

> quite often not a symptom at all, whilst exercise intolerance is a

> significant symptom and exercise programmes will cause a major

> setback,

> and whilst people with M.E. can have remissions if they are lucky,

> they will relapse again when they then try to push their limits too

> hard; you dont hear of people with M.E. getting better, either.

>

> I know there are different diagnostic criteria being used all over

> the place which mixes things up, I got the impression this mixing up

> is deliberate for political reasons?

>

> I have cognitive difficulties so I am easily confused at the best of

> times- does anyone here have any helpful advice to clear things up

> for me so I know what I am looking at at least on this site?

>

> - should I ignore all information here that relates to chronic

> fatigue or CFS to be on the safe side, because on occasion people

> dont always know the difference between these two different things

>

> -let alone the major differences between M.E. and CFS- and the CFS

> information may be totally inappropriate for M.E.?

>

> my brain hurts!

>

[Guest guest]

'Post exertional malaise' i.e. the ability of exercise to kick off all sorts of

negative symptoms that usually take an unconsionably long time to recover from

is (with concentration problems) probably the hallmark of chronic fatigue

syndrome. It's in most of the definitions including the Canadian Consensus one.

It is certainly not the same as deconditioning. Most knowledgeable CFS

physicians that I read about encourage their patients to exercise or rather be

active to below the point at which their symptoms begin just as yours do. This

is a way to slowly increase activity levels. None that I know of advocate

'exercise' as well all used to know.

Of course there is a great deal of variability in CFS and 'ME'. I can walk for

30 minutes a day for instance 4 or 5 times a week.

Deconditioning is a whole different ball of wax. It is not synonymous with CFS

but it can and will occur if you are not active enough and it will add to your

symptoms and complicate your recovery. This is why an activity program is

important.

I'll bet most knowledgeable practitioners do not differentiate between 'ME "

(post-infectious illness) and CFS probably because it doesnt matter with regards

to treatment. Please note there have been almost no research studies on 'M.E'

and there have been over a 1000 on CFS and the consensus regarding the problems

in CFS looks very much like physicians propose is happening in ME; central

nervous system problems, vascular problems, increased rates of central nervous

system pathogens some endocrine problems, etc.

CFS looks like 'ME' to me.

Over time as CFS is broken up into subsets it may be that the post-infectious

subset or ME will emergy.

s1mplicity099 <simplicity46@...> wrote:

Hi there

I realise that your post wasnt a reply to the questions I asked,

rather you were discussing other questions, but I will try to

respond to you as best I can

first of all I must say, many thanks for your thoughts, I do

understand that you dotn mean any harm, you are not a bad person and

you do mean well

But this definitely quite a side issue to what I was asking for,

and it is a massive can of worms to be opening up!

I have had M.E. for more than eleven years.

I understand there is a great deal of heated controversy and very

likely some serious political shennanigans regarding the (apparently

totally deliberate) confusion of 'chronic fatigue' with 'neurological

M.E.'

in particular some psychiatrists (who IMHO are operating entirely

out of their area of expertise here) do try very hard indeed to

pretend that 'exercise intolerance' is the same thing

as 'deconditioning';

but there is a great deal of scientific evidence such as brain

scanning etc which actually proves that these psychiatrists are

extremely deceitful.

With the neurological disorder M.E., exercise does not 'hurt' me any

more than it would anyone else.

Of course that wouldnt be a problem, how silly would one have to be,

to be seriously ill for eleven years and have your life completely

ruined just because of a little muscle or joint pain after exercise-

which everyone is familiar with and knows is normal lol.

-although I do have neuropathic pain- not actually related to

exercise- which is another large subject that I cant go into right

now because my computer time is limted.-

On the contrary to exercise hurting-I have exercise intolerance-which

is quite another thing entirely.

this exercise intolerance means that 'overdoing things' (normal and

very gentle activities to healthy people) not only causes me to

become bedridden with payback

-debilitating flu like illness that usually hits about 24 hours after

an activity and can last for days or sometimes weeks

-and in addition the consequences of repeatedly pushing your limits

this way can be more serious.

- my M.E.CFS specialist carefully explained this to me

(on a recorded tape; so I can listen to it and make sure I have got

it right)

that with M.E.; he believes that exercise causes an overproduction

of cytokines: that in turn causes brain damage

- which said brain damage may or may not be reversable-

and it will make the illness much worse

- in fact greatly reduce the chances of any improvement

- and increases already serious cognitive difficulties-

(in my case these cognitive losses are considerable, as it happens

luckily writing is my best form of communication, because I would not

be able to relate this information to you verbally, just one single

example is that I cannot drive because it is not safe for me to do

so; purely because of the loss of spatial judgement and

concentration).

These are the important reasons why M.E. specialists

(who ARE working in their own area of expertise) emphatically do not

advocate exercise in any way shape or form-

but instead advise patients to follow very careful pacing techniques

and activity management, just to get as much as they can out of life

without causing a serious setback..

every little thing has to be counted- from brushing your teeth to

watching the weather forecast, having a conversation is a biggie.

ie for the person who is bedridden with M.E.; sitting up in bed is a

major activity- I am one of the relatively lucky ones there are

people much worse off than I am-watch out because the 'psychiatric

lobby' do try very hard to trivialise this serious neurological

disorder as much as possible

everything is an activity, especially things like sitting at this

machine trying to explain things with my damaged brain, so I am

taking my poor aching head off for a 30 minute rest after this as

prescribed.

meanwhile, if anyone can answer the original questions I asked-

about what the information on this site actually refers to-

without opening any nasty cans of worms or causing any upset

in order to help me to discriminate between what might be useful for

me here and what could be harmful please?

- In , acermay@... wrote:

>

>

> Interesting,

>

>

>

> I uderstand that they are basically one and the same. Just

different names for the illness. With ME being more European and

CFS more American. Could be wrong though.

>

>

>

> Your cognitive issues you mention, I totally remember them being

so awful. I train with my dogs in competition level events of Rally

O. WHen I got sick, I couldnt do it any longer. Not only are

there symbols on little signs at every station " telling " you what to

do (like back up three steps and turn around to your left) but there

is a certain smoothness to your performance that is expected. So my

standing there like a drooling idiot, staring at each sign until I

could figure out what it meant was so humiliating. But having my

dog tell ME what to do was even weirder. I dont know what miniscule

signs of mine he was reading at the stations, but he would be able to

lead ME through the course.Â

>

> I also couldnt read for pleasure anymore. And driving was scary

at times. It is amazing and terrifying how deeply this illness can

impact your life.

>

> I have gotten quite a bit better in the 5-6 yrs I have been sick.Â

I would say I am at about a 80% recovery.Â

>

> I NEVER excersized once I became ill. The post exertional Malaise

was a great teacher. I was very muscular prior to becoming ill. I

Worked with my body my entire life. I can only assume it was

that " prexisting " muscle that saw me through until now. I have lost

mass and definition, but am able to rebuild it finally. I can

suggest trying some LIGHT TaiChi or yoga for balance issues. That

helped me. I had a great personal trainer who showed me breathing

excersizes and balance work. (If any Chgo folks want a name of

someone who " gets " your limitations now, it is Harold Rose. Really

nice man.)

>

> I have been on massive amounts of hypoallergenic suppliments for

years now. I think they are very important, but obviously not the

cure for the illness. Magnesium being the most important for me to

date.Â

>

> I know this is going to cause a stir- but phenalalinine sp? an

amino acid in Aspertame actually halped me quite a bit as well. I

had never had diet sodas til I got sick. WHen I found myself out

working and wanting a drink, Â I got a Diet coke and within 20

minutes I felt SO much better. I kept experimenting with it (it

wasnt the caffiene and it wasnt the brand) and finally found that

this one amino acid in the sweetener was what was helping me. So I

drank a diet soda a day (about 80 mgs of phenalainine) when Id felt

myself dragging. One mans poison is another's cure I guess.

>

> However I havent had a need for that since the Sinatra Protocol.Â

So I have happily cut it out of my diet. I dont like the taste

ayway.

>

> You just have to keep trying things out ONE at a time, cant stress

that enough. If you try two things at once, you wont know what did

what. Journal your progress if there is any. See allergists.Â

Nutritionists. Read books on CFS ME etc etc...

>

> And there IS a psychological thread to the illness.Â

Unfortunately many Drs just see the weariness and depression- so

assume it is a mental illness. I remember Pappernick asking me if I

was depressed and I must have given him the most exasperated

look.  He sat back and laughed a little, " Oh.... ok, you arent

sick because you are depressed, you are depressed because you are

sick. " Â He already knew the answer, but it was good to hear HIM say

it.

>

> The antidepressants so many Drs want to give you arent for the

depression anyway, but for the seratonin production. They arent

trying to treat depression behind your back (well, maybe some are),

but use the medicine's side effects to help with things like

incontinance and sleep. Imipramine helped me with those things.Â

at 12 mg! Not the adult dosage of 80-150 mgs.Â

>

> I was on that for only a short time til my body was retrained

about peeing.

>

> ANyway- Dont excersize if it hurts you.

>

> Connie

>

>

>

>

> Â Sassafras Valley Farm

>

>

> does this group address M.E. or

normally CFS?

>

>

>

>

>

>

> Hi,

>

> I have been dropping in and out for a while,

> and assuming that supplements and research mentioned on this site

> were related to M.E.: now I think I perhaps got it wrong and most

> information given here actually relates to CFS?

>

> Of course I dont mean to disparage anyone or anything, all of these

> type of illnesses are equally valid and I personally do not think

> that any of them are psychological; (thats a political myth yes?)

>

> but I am confused because I thought that with CFS chronic fatigue

> was the most significant symptom-I also hear a lot about people

with

> CFS 'getting better'; particularly, that they sometimes improve

with

> exercise programmes.

>

> Whilst on the other hand I thought that with M.E. chronic fatigue

is

> quite often not a symptom at all, whilst exercise intolerance is a

> significant symptom and exercise programmes will cause a major

> setback,

> and whilst people with M.E. can have remissions if they are lucky,

> they will relapse again when they then try to push their limits too

> hard; you dont hear of people with M.E. getting better, either.

>

> I know there are different diagnostic criteria being used all over

> the place which mixes things up, I got the impression this mixing

up

> is deliberate for political reasons?

>

> I have cognitive difficulties so I am easily confused at the best

of

> times- does anyone here have any helpful advice to clear things up

> for me so I know what I am looking at at least on this site?

>

> - should I ignore all information here that relates to chronic

> fatigue or CFS to be on the safe side, because on occasion people

> dont always know the difference between these two different things

>

> -let alone the major differences between M.E. and CFS- and the CFS

> information may be totally inappropriate for M.E.?

>

> my brain hurts!

>

>

>

>

>

>

__________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

[Guest guest]

Do you have any data to back up your statement that 'chronic fatigue' patients

do better with exercise? Are you referring to chronic fatigue vs chronic fatigue

syndrome patients? CFS patients have much more difficulty with exercise than FM

patients for instance.

Post exertional 'malaise' is a medical term; it means an significant

exacerbation of symptoms - it does not have the same connotation in a medical

sense that it does the public sense; ie someone just laying around and feeling

bad.

I guess you're in the UK? - Not a great place to be. This list doesnt talk

about exercise anyway. So long as you monitor yourself theres nothing here that

can really hurt. There are alot of 'ME' ie post-infectious illness patients

here and patients who'se CFS starts with another trigger.

s1mplicity099 <simplicity46@...> wrote:

thanks ,

I think I get you, the specialist I saw also said that FMS and ME

were also the same pathology (probably the wrong word I hope you get

my meaning?),

but regarding what is suitable treatment for one thing or the other

you have me more confused than ever, because I know there ARE

differences, ie: many of those with chronic fatigue can respond well

to exercis and improve; whilst for those with ME its a big no-no- and

will cause damage.

excuse brainfog here of course, but did you say something similar to

that in one of your recent posts re chronic mononeucleousis (sp)?

('post exertional malaise' is also a misnomer because 'malaise'

means 'feeling vaguely under par'-it doesnt indicate that one is

bedridden for days at a time with flu and excruciating pain-)

In my impoverished state I dont want to go bankrupting myself to try

to follow one of the 'cfs' protocols, when it may well be unsuitable

and could make me worse!

I have no way of finding out if I have 'chronic mononeucleiousis',

or: ME as well as FMS (which was my conclusion so far); or 'sudden

onset CFS', or lyme disease- or something else entirely for that

matter.

I had come to believe that what ails me is an ongoing infection that

my body cant get rid of (such as lyme or mono?) combined with a

reaction to prolonged exposure to mercury (years as a dental

assistant) with a genetic predisposition (my aunt has FMS and there

is a history of 'fybromyalgia' in the family);

I believe for me it has been made worse by following the advice of

the first GP I saw! -years ago after only six weeks of sudden onset

prolonged debilitating 'flu'- this GP said 'looks like ME, but I thnk

ME is depression so I recommend vigorous exercise';

but after two weeks of desperately attempting two short bouts of

vigorous exercise per day with the debilitating infection still

present, then left me bedridden for nearly 2 years.

with my finances dire because of chronic illness I cant afford a

private doctor and the british NHS approach is in ruins (apparently

due to the interference of pschiatrists working outside their field

rumoured to be looking to make the bucks)

ie when I asked my GP for a referral to an ME specialist I was sent

to one of these 'chronic fatigue centres' as devised by a well known

psychiatrist (these chronci fatigue centres have a very bad rep as

purely advocating GET and CBT.)

luckily the ME/CFS specialist was much better informed than that,

but he was still unable to test for lyme etc under the rules of the

centre

I am sorry I ramble on and on, but I am very concerned indeed about

attempting self-treatment;

its very confusing as it is, and more especially with my cognitive

failure

-but I want to try to get well again any way that I can.

> >

> > Hi,

> >

> > I have been dropping in and out for a while,

> > and assuming that supplements and research mentioned on this

site

> > were related to M.E.: now I think I perhaps got it wrong and most

> > information given here actually relates to CFS?

> >

> > Of course I dont mean to disparage anyone or anything, all of

these

> > type of illnesses are equally valid and I personally do not think

> > that any of them are psychological; (thats a political myth yes?)

> >

> > but I am confused because I thought that with CFS chronic

fatigue

> > was the most significant symptom-I also hear a lot about people

with

> > CFS 'getting better'; particularly, that they sometimes improve

with

> > exercise programmes.

> >

> > Whilst on the other hand I thought that with M.E. chronic fatigue

is

> > quite often not a symptom at all, whilst exercise intolerance is

a

> > significant symptom and exercise programmes will cause a major

> > setback,

> > and whilst people with M.E. can have remissions if they are

lucky,

> > they will relapse again when they then try to push their limits

too

> > hard; you dont hear of people with M.E. getting better, either.

> >

> > I know there are different diagnostic criteria being used all

over

> > the place which mixes things up, I got the impression this mixing

up

> > is deliberate for political reasons?

> >

> > I have cognitive difficulties so I am easily confused at the best

of

> > times- does anyone here have any helpful advice to clear things

up

> > for me so I know what I am looking at at least on this site?

> >

> > - should I ignore all information here that relates to chronic

> > fatigue or CFS to be on the safe side, because on occasion people

> > dont always know the difference between these two different things

> >

> > -let alone the major differences between M.E. and CFS- and the

CFS

> > information may be totally inappropriate for M.E.?

> >

> > my brain hurts!

> >

>

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

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

thanks cort

sorry- cant do 'data' at all here due to cognitive difficulties, and

so also not into debate for same reason

genuinely many thanks for your helpful and sensible comments though,

very much appreciated, I think you have answered my concerns nicely

> > >

> > > Hi,

> > >

> > > I have been dropping in and out for a while,

> > > and assuming that supplements and research mentioned on this

> site

> > > were related to M.E.: now I think I perhaps got it wrong and

most

> > > information given here actually relates to CFS?

> > >

> > > Of course I dont mean to disparage anyone or anything, all of

> these

> > > type of illnesses are equally valid and I personally do not

think

> > > that any of them are psychological; (thats a political myth

yes?)

> > >

> > > but I am confused because I thought that with CFS chronic

> fatigue

> > > was the most significant symptom-I also hear a lot about people

> with

> > > CFS 'getting better'; particularly, that they sometimes improve

> with

> > > exercise programmes.

> > >

> > > Whilst on the other hand I thought that with M.E. chronic

fatigue

> is

> > > quite often not a symptom at all, whilst exercise intolerance

is

> a

> > > significant symptom and exercise programmes will cause a major

> > > setback,

> > > and whilst people with M.E. can have remissions if they are

> lucky,

> > > they will relapse again when they then try to push their limits

> too

> > > hard; you dont hear of people with M.E. getting better, either.

> > >

> > > I know there are different diagnostic criteria being used all

> over

> > > the place which mixes things up, I got the impression this

mixing

> up

> > > is deliberate for political reasons?

> > >

> > > I have cognitive difficulties so I am easily confused at the

best

> of

> > > times- does anyone here have any helpful advice to clear things

> up

> > > for me so I know what I am looking at at least on this site?

> > >

> > > - should I ignore all information here that relates to chronic

> > > fatigue or CFS to be on the safe side, because on occasion

people

> > > dont always know the difference between these two different

things

> > >

> > > -let alone the major differences between M.E. and CFS- and the

> CFS

> > > information may be totally inappropriate for M.E.?

> > >

> > > my brain hurts!

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> Moody friends. Drama queens. Your life? Nope! - their life, your

story.

> Play Sims Stories at Games.

>

>

[Guest guest]

ME and sudden onset CFS are exactly the same thing. In England, there

is a big misinterpretation on the definition of CFS to include

psychological disorders.

http://www.fileden.com/files/2007/2/6/741817/MontoyaRevised.pdf

http://med.stanford.edu/news_releases/2007/january/montoya.html

http://vicd.info/

The last link refers to VICD because that is what he is calling it.

It is a new name for sudden onset CFS/ME.

> > >

> > > Hi,

> > >

> > > I have been dropping in and out for a while,

> > > and assuming that supplements and research mentioned on this

> site

> > > were related to M.E.: now I think I perhaps got it wrong and

most

> > > information given here actually relates to CFS?

> > >

> > > Of course I dont mean to disparage anyone or anything, all of

> these

> > > type of illnesses are equally valid and I personally do not

think

> > > that any of them are psychological; (thats a political myth

yes?)

> > >

> > > but I am confused because I thought that with CFS chronic

> fatigue

> > > was the most significant symptom-I also hear a lot about people

> with

> > > CFS 'getting better'; particularly, that they sometimes improve

> with

> > > exercise programmes.

> > >

> > > Whilst on the other hand I thought that with M.E. chronic

fatigue

> is

> > > quite often not a symptom at all, whilst exercise intolerance

is

> a

> > > significant symptom and exercise programmes will cause a major

> > > setback,

> > > and whilst people with M.E. can have remissions if they are

> lucky,

> > > they will relapse again when they then try to push their limits

> too

> > > hard; you dont hear of people with M.E. getting better, either.

> > >

> > > I know there are different diagnostic criteria being used all

> over

> > > the place which mixes things up, I got the impression this

mixing

> up

> > > is deliberate for political reasons?

> > >

> > > I have cognitive difficulties so I am easily confused at the

best

> of

> > > times- does anyone here have any helpful advice to clear things

> up

> > > for me so I know what I am looking at at least on this site?

> > >

> > > - should I ignore all information here that relates to chronic

> > > fatigue or CFS to be on the safe side, because on occasion

people

> > > dont always know the difference between these two different

things

> > >

> > > -let alone the major differences between M.E. and CFS- and the

> CFS

> > > information may be totally inappropriate for M.E.?

> > >

> > > my brain hurts!

> > >

> >

>

[Guest guest]

You sound like you're having a hard time with brain-fog, here is

something I found that helps me with mine. I used to have brain-fog

really bad, and kept reading about trans-fats in the papers, etc. so

I decided to quit eating them. Within a day or so, I noticed a marked

decrease in my brain-fog and headaches. I was not expecting this. So

one thing you might try is to not eat trans-fats(partially or fully

hydrogenated vegetable oils) for a couple days and see if it helps

you. It sounds kooky, but it works for me. Also, when I do eat them

accidently, I notice within hours a very noticable increase in brain-

fog and headache.

Also, you might try to avoid any food intolerances, which can be a co-

factor that comes with ME/CFS. It is due to an immune shift from Th1

to Th2, or the other way around. You can look it up on pubmed if you

wish, but a lot of people notice a sensitivity to certain foods that

cause rapid heartbeat, joint pain, etc. Some common ones that I

notice are corn, oats, pecans/nuts, peanuts, soybean products such as

oil, etc, potato skins and possibly others. Corn includes corn syrup,

corn starch, etc. Dairy also increases brain-fog for me, and makes me

more sensitive to allergens as well.

Take care

> > > >

> > > > Hi,

> > > >

> > > > I have been dropping in and out for a while,

> > > > and assuming that supplements and research mentioned on this

> > site

> > > > were related to M.E.: now I think I perhaps got it wrong and

> most

> > > > information given here actually relates to CFS?

> > > >

> > > > Of course I dont mean to disparage anyone or anything, all of

> > these

> > > > type of illnesses are equally valid and I personally do not

> think

> > > > that any of them are psychological; (thats a political myth

> yes?)

> > > >

> > > > but I am confused because I thought that with CFS chronic

> > fatigue

> > > > was the most significant symptom-I also hear a lot about

people

> > with

> > > > CFS 'getting better'; particularly, that they sometimes

improve

> > with

> > > > exercise programmes.

> > > >

> > > > Whilst on the other hand I thought that with M.E. chronic

> fatigue

> > is

> > > > quite often not a symptom at all, whilst exercise intolerance

> is

> > a

> > > > significant symptom and exercise programmes will cause a

major

> > > > setback,

> > > > and whilst people with M.E. can have remissions if they are

> > lucky,

> > > > they will relapse again when they then try to push their

limits

> > too

> > > > hard; you dont hear of people with M.E. getting better,

either.

> > > >

> > > > I know there are different diagnostic criteria being used all

> > over

> > > > the place which mixes things up, I got the impression this

> mixing

> > up

> > > > is deliberate for political reasons?

> > > >

> > > > I have cognitive difficulties so I am easily confused at the

> best

> > of

> > > > times- does anyone here have any helpful advice to clear

things

> > up

> > > > for me so I know what I am looking at at least on this site?

> > > >

> > > > - should I ignore all information here that relates to

chronic

> > > > fatigue or CFS to be on the safe side, because on occasion

> people

> > > > dont always know the difference between these two different

> things

> > > >

> > > > -let alone the major differences between M.E. and CFS- and

the

> > CFS

> > > > information may be totally inappropriate for M.E.?

> > > >

> > > > my brain hurts!

> > > >

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Moody friends. Drama queens. Your life? Nope! - their life, your

> story.

> > Play Sims Stories at Games.

> >

> >

[Guest guest]

Simplicity & all,

I think your description of M. E. is right on target,

and it's also on target for most with CFS, though the CDC

criteria has brought in another group of people who have other

problems according to Dr. Byron Hyde. This becomes a problem

not only and treatment situations but also for clear research cohorts.

It would be good to restore the historical line of M. E. so that

research

could be more beneficial. It's not a good argument by the CDC

that going back to the name M. E. is impractical because of research on

CFS since a lot of the research groups were not clearly delineated.

We try to clear up some of that confusion here at this website:

http://www.name-us.org/MECFSExplainPages/MECFS%20Explained.htm

Also, Dr. Hyde explains:

http://www.nightingale.ca/index.php?target=whatis

Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

Posted by: " s1mplicity099 " simplicity46@... s1mplicity099

Thu May 31, 2007 11:10 am (PST)

Hi there

I realise that your post wasnt a reply to the questions I asked,

rather you were discussing other questions, but I will try to

respond to you as best I can

first of all I must say, many thanks for your thoughts, I do

understand that you dotn mean any harm, you are not a bad person and

you do mean well

But this definitely quite a side issue to what I was asking for,

and it is a massive can of worms to be opening up!

I have had M.E. for more than eleven years.

I understand there is a great deal of heated controversy and very

likely some serious political shennanigans regarding the (apparently

totally deliberate) confusion of 'chronic fatigue' with 'neurological

M.E.'

in particular some psychiatrists (who IMHO are operating entirely

out of their area of expertise here) do try very hard indeed to

pretend that 'exercise intolerance' is the same thing

as 'deconditioning';

but there is a great deal of scientific evidence such as brain

scanning etc which actually proves that these psychiatrists are

extremely deceitful.

With the neurological disorder M.E., exercise does not 'hurt' me any

more than it would anyone else.

Of course that wouldnt be a problem, how silly would one have to be,

to be seriously ill for eleven years and have your life completely

ruined just because of a little muscle or joint pain after exercise-

which everyone is familiar with and knows is normal lol.

-although I do have neuropathic pain- not actually related to

exercise- which is another large subject that I cant go into right

now because my computer time is limted.-

On the contrary to exercise hurting-I have exercise intolerance-which

is quite another thing entirely.

this exercise intolerance means that 'overdoing things' (normal and

very gentle activities to healthy people) not only causes me to

become bedridden with payback

-debilitating flu like illness that usually hits about 24 hours after

an activity and can last for days or sometimes weeks

-and in addition the consequences of repeatedly pushing your limits

this way can be more serious.

- my M.E.CFS specialist carefully explained this to me

(on a recorded tape; so I can listen to it and make sure I have got

it right)

that with M.E.; he believes that exercise causes an overproduction

of cytokines: that in turn causes brain damage

- which said brain damage may or may not be reversable-

and it will make the illness much worse

- in fact greatly reduce the chances of any improvement

- and increases already serious cognitive difficulties-

(in my case these cognitive losses are considerable, as it happens

luckily writing is my best form of communication, because I would not

be able to relate this information to you verbally, just one single

example is that I cannot drive because it is not safe for me to do

so; purely because of the loss of spatial judgement and

concentration).

These are the important reasons why M.E. specialists

(who ARE working in their own area of expertise) emphatically do not

advocate exercise in any way shape or form-

but instead advise patients to follow very careful pacing techniques

and activity management, just to get as much as they can out of life

without causing a serious setback..

every little thing has to be counted- from brushing your teeth to

watching the weather forecast, having a conversation is a biggie.

ie for the person who is bedridden with M.E.; sitting up in bed is a

major activity- I am one of the relatively lucky ones there are

people much worse off than I am-watch out because the 'psychiatric

lobby' do try very hard to trivialise this serious neurological

disorder as much as possible

everything is an activity, especially things like sitting at this

machine trying to explain things with my damaged brain, so I am

taking my poor aching head off for a 30 minute rest after this as

prescribed.

meanwhile, if anyone can answer the original questions I asked-

about what the information on this site actually refers to-

without opening any nasty cans of worms or causing any upset

in order to help me to discriminate between what might be useful for

me here and what could be harmful please?

[Guest guest]

>

>

> I have had M.E. for more than eleven years.

> I understand there is a great deal of heated controversy and very

> likely some serious political shennanigans regarding the (apparently

> totally deliberate) confusion of 'chronic fatigue' with 'neurological

> M.E.'

>

***There is a huge difference between " Chronic Fatigue " and " Chronic

Fatigue SYNDROME " . The first is a symptom of many different illnesses,

whereas the second is an actual illness. In North America I think for

the most part, CFS and ME are considered the same illness. So to answer

your question, this group is for CFS/ME. However, for a person with

general chronic fatigue only, then this wouldn't be the right place for

information.

Take care.

Bernie