Yuppie flu campaigners fight 'mental illness' label

[Guest guest]

Source: Daily MailDate: November 15, 2007URL:

http://www.dailymail.co.uk/pages/live/articles/news/news.html?

in_article_id=494200 & in_page_id=1770 Yuppie flu campaigners

fight 'mental illness' label

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

'Yuppie flu' campaigners are going to court to try to force the

Government'shealth watchdog to stop defining it as a psychiatric

illness. The National Institute for Health and Clinical Excellence

(Nice) could have to rewrite its new guidelines on chronic fatigue

syndrome, also known as ME. A pressure group is taking High Court

action in what is understood to be the first case of its kind. The

One Click Group, which has 8,000 online supporters worldwide, is

challenging Nice's treatment advice on the groundsthat it labels

sufferers as mentally ill. Nice told doctors in August this year

that they should prescribe psychologicaltherapy and " graded "

exercise for ME patients. But Jane , director ofOne Click,

said Nice ignored studies that show ME is a recognised

medicalcondition and not a psychiatric illness. Ms 's son Ben,

13, wasdiagnosed with a form of ME six years ago. The former public

relations manager from London said: " This is going to be a

against Goliath case. The guidelines have excluded the majority of

the medical evidence which proves that ME is a physical not a

psychological illness. They (Nice) haven't listened to the

patients. " ME is estimated to affect a quarter of a million people

in Britain, especially children. Symptoms include poor quality

sleep, headaches and bouts of infections. The Medical Research

Council (MRC) is carrying out two large clinical trails into the

effectiveness of treatments at a cost of 2.5 million pounds. The

medical profession is fiercely divided over the exact cause.

Someexperts are sceptical that ME is a specific illness and say the

symptoms are caused by mental health problems. Others say that it is

caused by a virus and that the type of exercise recommended by Nice

can even make the illness worse. It is understood to be the first

time that Nice has faced court action over its own health guidance.

Earlier this year, drug companies lost a case against Nice over its

refusal to fund lifesaving dementia drugs. The One Click Group is

being represented by Saunders solicitors which is expected to lodge

court papers next Wednesday for the judicial review. Dr

Sheppard of the ME Association said: " The Nice guideline is

seriously flawed because they take a 'one size fits all' approach to

an illness which manifests itself in many different ways. There is

no evidence that sufferers do benefit from psychological therapies. "

Dr Neil Abbot from ME Research UK said: 'There is undue emphasis in

the final Nice guideline on psycho-social strategies.'

[Guest guest]

Well I think this is very exciting, as, at this point, the only way things

are going to change is through the courts I think. I’d also love to see a

juicy class action suit by Americans against the CDC! YAY Brits for leading

the way! Aylwin

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of cfpenpal

Sent: Friday, November 16, 2007 5:10 AM

To: CFAlliance

Subject: Yuppie flu campaigners fight 'mental illness' label

Source: Daily MailDate: November 15, 2007URL:

HYPERLINK

" http://www.dailymail.co.uk/pages/live/articles/news/news.html? " http://www.d

ailymai-l.co.uk/pages/-live/articles/-news/news.-html?

in_article_id=-494200 & in_-page_id=1770 Yuppie flu campaigners

fight 'mental illness' label

[Guest guest]

…although I can’t believe that the headline uses the term “yuppie flu” (have

we still not rid ourselves of that old slur???), and lists symptoms that are

secondary and not necessarily disabling <sigh>. Aylwin

[Guest guest]

During my last drs visit I had a depression discussion with my dr. His

explanation for the fact that sleep meds don't do much for me is that there must

be something psychological going on. I explained that when I first got sick it

was after having severe hypothermia. At that point I was scared to go to sleep

at night so i ended up snoozing during the day with the tv on. I think that's

the root of the problem. I'm not afraid anymore to go to sleep or have any

tension about not getting to sleep. The conversation then turned to taking

antidepressants.? I said that a) those had been tried early on and I never felt

one bit of difference again early on, I saw 2 psychologists and both said I

was not depressed and c)while I have my ups and downs I am not depressed. So he

asked stuff like what do I do for fun? Do I have anytime short term and longterm

goals? By the end of it he said I seemed like the most well-balanced person with

cfs/fms that he's seen. I'm still not sure he doesn't think all of problems come

from inside my head. It makes me very resistant to go in and see him at all, but

the closest specialist is 45 min away. There is no way I could make the drive on

a bad day and there's no one to take me. I feel stuck with a dr who 'doesn't get

it'.

-Alia

[Guest guest]

Hi,

I'm new here but with my CFS they found I also have Idiopathic

Hypersomnolence (Fancy words for " unknown daytime sleepiness " which is not

unknown to me because it started after my bout with strep, Mono, and

secondary Hepatitis) found through a sleep test. They also found lesions

from an unknown source in my brain.

Can you find another Doctor, not meaning to be rude here, but it sounds like

he is a wanna-be Psychiatrist. :-)

[Guest guest]

Alia,

I guess I am a bit confused. It sounds like after your conversation

with your doctor he felt that you were quite well balanced

psychologically. So why do you think he still think that he thinks your

inability to sleep is psychological? As an aside, if you are not

depressed but not sleeping, there are some anti-depressants that are

used in low doses for insomnia as their side effect is causing

sleepiness. My very first psychiatrist explained that to me. She said

that in general sleeping pills have many side effects and can be

addictive, whereas anti-depressants are not addictive. (they do,

however have side effects, but I guess not the dangerous ones she was

thinking of) In any event, she said that with insomnia, it is an idea

to try low dose anti-depressants that cause drowsiness to see if they

will help with sleep before moving on to sleeping pills if the

antidepressants don't work for you. At the time it turned out they did

help me with the insomnia. At this point and 25 or more years later, my

insomnia is such that I use antidepressants and sleeping pills and still

have trouble sleeping and I do have depression so use antidepressants

for that as well. So, you might consider trying anti-depressants in

low dose to see if they will help. The dose for sleep is much less than

that used when the same med is used for an anti-depressant effect.

Sandrea

[Guest guest]

Hi ,

Many times when folks are first experiencing CFS they tend to sleep

endlessly. That pattern seems to change over time to where you can't

sleep. Where are you in terms of your CFS?

Sandrea

[Guest guest]

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of

Sent: Monday, November 19, 2007 10:30 AM

To: CFAlliance

Subject: Re: Yuppie flu campaigners fight 'mental illness'

label

Hi,

I'm new here but with my CFS they found I also have Idiopathic

Hypersomnolence (Fancy words for " unknown daytime sleepiness " which is not

unknown to me because it started after my bout with strep, Mono, and

secondary Hepatitis) found through a sleep test. They also found lesions

from an unknown source in my brain.

Can you find another Doctor, not meaning to be rude here, but it sounds like

he is a wanna-be Psychiatrist. :-)

[Guest guest]

Hi , well, both “idiopathic” Hypersomnolence and brain lesions are

classic findings in ME. I put quotes around idiopathic, because it means of

unknown origin…well the origin is not unknown, if you have ME (the proper

medical term for the neurological disease at the core of the looser

diagnosis of “CFS”). All this is in the literature/research, it makes me so

mad that a doc would say idiopathic anything when it is an intrinsic part of

early ME. Of course, if you are in the US you will never get a proper Dx,

but try at least to get to someone who understands the neurological

component of this disease. Good Luck, Aylwin xox

[Guest guest]

Hi Sandrea and Alia, I agree with what Sandrea said, but want to add a

couple of things…first, many folks (myself included) are totally sensitive

to antidepressants and cannot take them at any dose. Second, they bleedin’

are addictive! Prozac and Paxic are particularly evil this way from what

I’ve heard. As I can’t take them this has not been a personal issue, but

there is LOTS of documentation around this fact. That’s really why one has

to wean off them so carefully…just like any habituated drug. That having

been said, they do help some folks sleep at a low dose. Sadly, like Sandrea,

I started on a low dose Benzo but now, even the 15 mg Imovane does not get

me more than about 5 hrs good sleep…about ½ of what I need! Sleep is sooooo

important. Also, the natural things like Valerian, Melatonin, Passion flower

and Hops, give many folks good results, but they all whack me out totally

the next day. But, worth a try as well. TC, Aylwin xox

[Guest guest]

Hi,

I can still sleep forever! I had to fight it for around 15 years but I can

no longer do it and not get ill. The Neurologist gave me Ritalin and I

LOVED it but I ended up with swollen lymph nodes and sick one week and two

weeks later with strep throat. I also ended up with severe stomach problems

so out went the Ritalin. It was GREAT while it lasted. I can't take

Provigil as I have Mitral Valve Prolapse.

[Guest guest]

Sandrea,

?Yeah, I've been on those antidepressants that have the side effect of

sleepiness before (they had no effect). Maybe I'm just sensitive when it comes

to gp doctors, but it seems like for every problem I have this doctor's first

answer is antidepressants. Not sleeping--antidepressants.

Tired---antidepressants. Pain---antidepressants. The only thing he hasn't

suggested them for is my allergies.

-Alia

[Guest guest]

Aylwin,

 Well I definitely have had worse drs. It's just an impression I get from him.

I think I've tried every sleep med, natural and non, some several times over. My

brother has suggested I try medical marijuana...not sure about that one.

-Alia

[Guest guest]

Well, I'm thinking about moving to Portland, in part because I would have

better access to doctors. Right now I'm in a small town about an hour and a half

south of there, so my dr options are limited. I've never heard of Idiopathic

Hypersomnolence, but one dr i saw a couple years ago (when I lived in

Sacramento) diagnosed me with something called delayed sleep phase

syndrome...basically my internal clock releases seratonin and melatonin at the

wrong times. My acupuncturist said maybe I was a nocturnal animal in a past life

-Alia

[Guest guest]

Hi,

Thank you so much for your insight. I do have an Internist who understands

CFS but the Neurologist doesn't. I never thought of looking for a

Neurologist who does understand it, but I will now. He thinks I may have

MS.

Yes, everything here in the US that Physicians cannot explain is likely to

be put in the " psychiatric " category unfortunately. It put me through 17

long years of groping for the truth.

Thanks,

[Guest guest]

Hi Alia, well I do use the mm as an adjunct sleep aid, anti-inflammatory

etc. in sparing amounts, I don’t really like being more spaced then I

already am LOL, still I suppose it’s no more “stoning” than many pain meds.

It does seem to be a therapeutic agent in some neurological disease…PWMS

find it very helpful. If you go that route start out with very small doses.

TC, Aylwin xo

[Guest guest]

, well the disease of psychiatrizing everything has spread now and it’s

not just the US disease anymore LOL, 20 years ago I could get Dx & treatment

for ME in Canada…now they won’t even put it on my chart though I was Dx’ed

by a top immunologist…these fashions in medicine are going to kill us all.

Because I have not received any treatment for many years, I’m now in the

“progressed” category and praying that the neuro I’m seeing this week (at

last) doesn’t have “The American disease”)! Aylwin xox

[Guest guest]

Alia,

Are you in Oregon? Or are you talking about Portland, Maine? I am in Central

Oregon, and I have heard of a good dr in Portland, OR.

[Guest guest]

Yup, I'd be upset with that answer to everything too.

Sandrea

[Guest guest]

Hi Alia,

My mother tried pot for extreme MS pain. She said it didn't help enough

to be worth the trouble of trying to get hold of it. But she didn't get

it from a doctor, a friend of hers found someone selling it and they got

it that way.

Sandrea

[Guest guest]

,

Yep, I'm in Oregon. In Corvallis.

Alia

[Guest guest]

OK - I will have to ask my husband where he wrote the Portland dr's name down

(he is out of town right now). This dr was recommended to me by someone else

who lives in Bend. He has helped her, she said (I know this is all second

hand). You might at least call this dr if you are thinking about going to

Portland anyway. I believe he has fibro himself or some other personal

connection.

And congratulations on your Beavers winning the Civil War yesterday ... I am not

a football fan myself, but my husband and two sons were very bummed by the

Ducks' loss.

Take care,

T.