Re: is AIDS multifactorial?/

[Guest guest]

Bravo, , I totally agree.

Katrina

> Yeh

>

> The result of all the Drs etc saying that stress causes CFS is that people

> feel guilty that they have somehow bought this illness on themselves through

> poor stress handling or poor lifestyle choice . Blaming themselves makes

> them less likely to ask what is the real cause of this illness or to press

> Drs and decision makers to find out what is the real cause of this illness.

> I don't think people with multiple sclerosis, rheumatoid arthritis, ALS and

> other more well recognised immune/neurological diseases waste much time

> thinking how stress caused them to be ill.

>

> No they spend their time setting up good, effective and politically savvy

> support groups which raise money for research and press government to

> finance and conduct research.

>

>

[Guest guest]

Alas, to me the original post here also sounds demeaning and disrespectful,

and judging of our patient community.

If I am not a lazy yuppie, then I am an incompetent, ineffective, time-wasting,

guilt-ridden...what?

Thanks for the support.

Adrienne

PS Could it be that none of those other communities have as much trouble with

cognition as we do?

Re: is AIDS multifactorial?/

Bravo, , I totally agree.

Katrina

> Yeh

>

> The result of all the Drs etc saying that stress causes CFS is that people

> feel guilty that they have somehow bought this illness on themselves through

> poor stress handling or poor lifestyle choice . Blaming themselves makes

> them less likely to ask what is the real cause of this illness or to press

> Drs and decision makers to find out what is the real cause of this illness.

> I don't think people with multiple sclerosis, rheumatoid arthritis, ALS and

> other more well recognised immune/neurological diseases waste much time

> thinking how stress caused them to be ill.

>

> No they spend their time setting up good, effective and politically savvy

> support groups which raise money for research and press government to

> finance and conduct research.

>

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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[Guest guest]

,

NOOOO...do not sit down and do not shut up...ever!!! In this message you have

identified something that frustrates the H out of me. These so called " CFS

discussions " that go on and on, seemingly with no one minding, along the same

lines of what you have told us about that day at the support group.

I have carpal tunnel in wrist and shoulder on top of arthritis in wrist and

have had wrist in a splint, so have not been able to type much. I have wanted to

jump in numerous times in recent threads. But the posts are so all over the

map...a combination of history we all should know, research we are teaching each

other, personal experience, and ....as you say, HORSESHIT...where is a

cognitively impaired, wrist-splinted, PWC/ME even to begin???

I have wanted to say for awhile that I really appreciate you relating to us

what happened in Lake Tahoe, which is a ground zero for this epidemic for a

number of reasons...sudden outbreak itself, paralleling and followed by

continued outbreaks elsewhere,Cheney, , CDC's response and

abuse,community response and abuse.

It is a perfect model of the disease, the patients, Doctors who " got it " , and

the INSANE and abusive response of the rest of the

planet...Government,communities,family and friends,medical profession. A

discussion of " mental illness " might be more useful if it were directed at

NON- " CFS " persons, rather than at us.

You have an excellent way with words describing these absurdities and you

should most definitely continue.

" We " have a history. There is a history of the epidemic of a disease that

exploded in the 80s and the cast of characters who set the pace of its

handling/mishandling that has kept EVERY ONE of us, dreadfully ill and disabled

for years,or to this day. Including many who have other illnesses that have been

labeled " CFS " . Even if all do not agree on every detail, that history is given

in " Osler's Web " . I cannot imagine anyone with " CFS " not having a copy of it.

I did get confused when (I think ) you said you got well by avoiding

mycotoxins. I did not take the time to dissect this, but a post you sent re:

holiday visit w/family did not sound like someone well...but exactly like a

CFIDS/ME person visiting family!

I imagine there are many others who observe these threads, both instructed

and mind-boggled, maybe even horrified, but cannot find the ability to jump in

either.

I think that even those who are severely ill and can only crank out a line or

two have valuable comments,but may not feel they do or can.

I have plenty of other comments, after a rest and if I can pull it off...

Take care,

Katrina

Re: is AIDS multifactorial?

>

>

> > Passed out until another day.

> > Yeah, we call it " mental masturbation " .

> > But the point of this exercise isn't winning the debate.

> > Ever debated a " Christian Scientist " ?

> > No, this was a test.

> >

> > Remember my story about the support group in Incline Village where a

> > doctor came to address us?

> > He told everybody that we were all just burned out yuppie whiners that

> > brought this on ourselves by our bad diet and attitude and just needed

> > to pull ourselves up by the bootstraps and get on with life.

> > And remember I thought that the audience full of sick people would rip

> > this moron off the podium and beat him even more senseless than he

> > already was? (If that was possible)

> > And nothing happened. Or should I say, almost nothing.

> > I stood up to protest and the people around me got mad at ME and told

> > me to sit down and shut up. Can you believe this. We are sick beyond

> > belief and our lives are being stolen from us and they tell ME to shut

> > up and not contradict Herr Doctor Scheisskopf!

> > For brevity, I didn't talk about another guy a few table in front of

> > me doing the same thing. We were both talking at the same time so I

> > didn't hear what he said, but I could see that people around him were

> > looking up at him and speaking. They were tugging at his sleeves until

> > he saw that he wasn't scoring any points with the audience or getting

> > any support from those around him. We both gave up and sat down at

> > the same time, and I'll never forget the one word that wafted back

> > from his table as he sat down.

> > " Horseshit. "

> > Now I see people getting on these lists and doing the same thing as

> > that doctor and the people on these list say NOTHING.

> > " Stress " , " Diet " , " Mental Illness " , " Multifactorial " ,

> > " Just falling apart from an accumulation of normal stressors " .

> > If a person who doesn't even understand what " fatigue " is to a person

> > with CFS and describes it as " extreme tiredness " can come on a board

> > and tell people that it is perfectly normal for you to be burned out

> > and tired from " too many stressors " and can speak with perfect

> > impunity here, then I see that nothing has changed from that early

> > support group meeting and people still refuse to speak up for

> > themselves and will even try to silence those of us who do.

> > It is not the doctors fault that CFS isn't taken seriously.

> > How can they know any different if they haven't experienced it.

> > And if the people who claim to have it actively SILENCE those who

> > speak out against these theories, these doctors have all the support

> > they need to conclude that CFSers themselves consider this to be a

> > minor condition of burnout from stress and bad diet.

> > This debate has been another test to see how the audience will

> > respond. Maybe I'll sit down again and shut up if that's what you

> > people want, but I'll end it with one word.

> > " HORSESHIT " .

> > -

[Guest guest]

Adrienne

I'm not blaming those with CFS. Its so easy for us to fall into blaming

ourselves when so little is known about the illness and all we get shoved

down our throat is how we bought the illness on ourselves with stress or

even worse, as Wessely says, our own faulty illness beliefs. After

hearing all the stuff about stress for a long time I questioned if it was my

fault in some way and that made me feel depressed and full of inertia. I

think this happens to a lot of us especially in the early stages of our

illness and it is a distraction from asking what is really wrong with us and

pressing our Drs and governments to do something about what really is the

physical cause. I believe that the stress thing is a real 'red herring'

that just causes confusion about the real issues at stake and that is that

there is some real pysical cause to this illness. There's no way I'd call

anyone with CFS lazy or feckless. No - infact those with CFS are brave and

resourceful just to get through the days with this illness when they often

have to diagnose, nurse and treat themselves and try to hold the fragments

of their old life together

Re: is AIDS multifactorial?/

>

>

>

> Bravo, , I totally agree.

>

> Katrina

>

>

> > Yeh

> >

> > The result of all the Drs etc saying that stress causes CFS is that

people

> > feel guilty that they have somehow bought this illness on themselves

through

> > poor stress handling or poor lifestyle choice . Blaming themselves

makes

> > them less likely to ask what is the real cause of this illness or to

press

> > Drs and decision makers to find out what is the real cause of this

illness.

> > I don't think people with multiple sclerosis, rheumatoid arthritis,

ALS and

> > other more well recognised immune/neurological diseases waste much

time

> > thinking how stress caused them to be ill.

> >

> > No they spend their time setting up good, effective and politically

savvy

> > support groups which raise money for research and press government to

> > finance and conduct research.

> >

> >

>

>

>

>

> This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

>

>

>

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

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>