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1990 Newsweek cover story "Chronic Fatigue Syndrome"

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2,565
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US
I was reading the comments on the Canary film facebook page. This interested me, a user saying that we did not see much change after the Newsweek feature on CFS: https://www.facebook.com/claudia.goodell/posts/10201895784749040

The full Newsweek article from 1990: http://www.newsweek.com/chronic-fatigue-syndrome-205712 (or pdf format at http://www.ncf-net.org/inthenews/NewsweekFeb10.pdf ). I wish they had pictures and tables from the original article included.

I'm very surprised at how sympathetic the article is to us. They covered so many areas, some I had no idea about.

But not much came of it? Does anyone remember this magazine (cover) coming out? It must have helped us in small ways, but did it have a real effect? I am shocked that this was the best selling magazine of the year for Newsweek.

It's depressing, because that article is nearly 25 years old, and current day articles would be about the same. That immune abnormalities have been found, that they are looking into possible retroviruses, that it's hard to get a proper diagnosis, etc.
 

heapsreal

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10,089
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Its sad, scary, makes u mad as one could easily think this article was published recently. We arent really any further along now then when that article was published in the 1990s.

The article mentions it wont kill u as quickly as AIDS but just leave one demented, fatigued and up the creek without a paddle. I think this has probably been our problem all along and why we arent taken seriously, because we dont die from it just permanently disabled by it and its easy to flick us over to the dam psychs with there CBT bull then to find the real answers to our problems. Maybe many of the good researchers in the day were drawn into the aids/hiv stuff and left very little in the way of experts for cfs/me. Because it hasnt been taken seriously for so long, many good researchers avoid cfs/me.

We do have a small handful of dedicated doctors and researchers who have plodded along thru all this with little help or support from govt. Hopefully one of them can strike gold soon.

cheers!!
 

Iquitos

Senior Member
Messages
513
Location
Colorado
I was reading the comments on the Canary film facebook page. This interested me, a user saying that we did not see much change after the Newsweek feature on CFS: https://www.facebook.com/claudia.goodell/posts/10201895784749040

The full Newsweek article from 1990: http://www.newsweek.com/chronic-fatigue-syndrome-205712 (or pdf format at http://www.ncf-net.org/inthenews/NewsweekFeb10.pdf ). I wish they had pictures and tables from the original article included.

I'm very surprised at how sympathetic the article is to us. They covered so many areas, some I had no idea about.

But not much came of it? Does anyone remember this magazine (cover) coming out? It must have helped us in small ways, but did it have a real effect? I am shocked that this was the best selling magazine of the year for Newsweek.

It's depressing, because that article is nearly 25 years old, and current day articles would be about the same. That immune abnormalities have been found, that they are looking into possible retroviruses, that it's hard to get a proper diagnosis, etc.

This is why the CDC spent $5million around that time, with the help of the CAA, to "rebrand" the illness into something no one should take seriously, not medical schools, not doctors, not friends and family of patients, not patients themselves. The CDC, and NIH, had to counter the affect of public information like the Newsweek article.

And Osler's Web by Hillary Johnson.

Then came the Primetime Live broadcast in 1996:

So the government has to periodically step up the cover-up. That's basically what it going on now with the IOM contract to redefine the physical illness out of existance. There is too much real biomedical information coming out now so the unseen hand that wants to disappear this illness and these patients has to now make a new assault on the reality of anyone who cares about these sufferers.
 

Elph68

Senior Member
Messages
598
Its sad, scary, makes u mad as one could easily think this article was published recently. We arent really any further along now then when that article was published in the 1990s.

The article mentions it wont kill u as quickly as AIDS but just leave one demented, fatigued and up the creek without a paddle. I think this has probably been our problem all along and why we arent taken seriously, because we dont die from it just permanently disabled by it and its easy to flick us over to the dam psychs with there CBT bull then to find the real answers to our problems. Maybe many of the good researchers in the day were drawn into the aids/hiv stuff and left very little in the way of experts for cfs/me. Because it hasnt been taken seriously for so long, many good researchers avoid cfs/me.

We do have a small handful of dedicated doctors and researchers who have plodded along thru all this with little help or support from govt. Hopefully one of them can strike gold soon.

cheers!!
G'day mate .... we have the 2 best research facilities in the world here .... that being the Melbourne University and the University up your way ..... I get the feeling they have already figured it out .... They are just struggling for the rest of the world to listen to them ....
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Blimey! Ampligen was on the cards back in 1990'ish. And they still can't get it working well enough to be approved! I never knew it had been worked on for so long :wide-eyed:

Epidemiology is still a major concern. You chaps are still working off of the same figures as back in those days. We are the same really. About time someone got to grips with this as holding out for a biomarker doesn't seem to have worked.

Still, no one is quite sure what it is. "Something is going on," says Dr. Walter Gunn, the CDC investigator in charge of a four-city survey of the phenomenon. "But whether it's one disease or several, one cause or more, is not clear." The CDC defines chronic fatigue syndrome as a distinctive array of unexplained symptoms that cause 50 percent reduction in activity for at least six months. Diagnosis is largely a matter of ruling out other diseases - AIDS, cancer, multiple sclerosis and so on. Treatment proceeds by trial and error.
Ground-hog day or what?!

How much money has been raised since this time? How much false hope? Personally, I wouldn't place my trust on 'experts' having any more of an idea either.

Though I guess - grudgingly - perhaps we are seeing the search narrowed as things get ruled out.

Sometimes it is very hard remaining hopeful or convincing myself that anything will ever change - and I can't lay the lack of progress completely at the door of government. Though I do think there has been a lack of coordination and of someone taking charge.

I think we have been bothered by too many 'experts' claiming to know what was what, dabbling at the fringes, by small underpowered studies, false hopes, 'remedies', etc.

I think the infrastructure has been very slow to be put in place - still hasn't in many respects - but perhaps (perhaps) things are changing.

Trouble is, in all this time, what was once thought to be ME, or CFIDS, the triggers, the disease, the patients caught up by it - has all broadened and become all-inclusive and now I worry that we have less of a hope of finding anything in such a large cohort.

A biomarker(s) might sort the 'wheat from the chaff' but that would potentially leave a lot with the 'diagnosis' isolated - including me perhaps but I think it's the only way to proceed even if we are now talking about 'sub-groups' in Politically-Correct/Medically-Correct/Concerned-about-the-patient terms.

I put a lot of faith in science but I have seen a lot of dodgy science and a lot of dodgy headline-grabbing interpretations of dodgy science by people who should be ashamed and/or know better.
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
G'day mate .... we have the 2 best research facilities in the world here .... that being the Melbourne University and the University up your way ..... I get the feeling they have already figured it out .... They are just struggling for the rest of the world to listen to them ....
Also a new research lab In adelaide has been on the news but not specific to ME probably cancer etc but who knows down the track.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I remember when the Newsweek article came out. May even have a copy at my Mother's house. Will post it here if I do.

1990 was a strange time for me. It was the time of the last great "hope" before we were all buried alive by the Psych lobby and entered the long dark age.

At that time I simply didn't realise how bad things would be within a few years ... and for how long.