Is the Media portraying CFS in the best of light?

[livingwithcfids]

First.

http://www.camdennewjournal.com/new...s-laid-low-devastating-form-chronic-fatigue-s
(85 years old, she can have a number of things wrong)


Second.
http://www.wxii12.com/r-video/29647339/detail.html
(I use to like Dr. Oz til I saw this rubbish)



Oh, and here's the cure we've all been waiting for...
http://www.youtube.com/watch?v=yKPo_uVXW7Q

 

[taniaaust1]

oh Dr Oz. I once saw him talking about ME/CFS on TV... it was aweful, he dont have a clue.
..

One of the most upsetting things I saw on TV with it was on a "House" eposide in which he refers to ME/CFS as "lazy persons syndrome" or something like that and then nothing else was really then said about it.. nothing about it being any kind of valid illness.

 

[Tony Mach]

oh Dr Oz. I once saw him talking about ME/CFS on TV... it was aweful, he dont have a clue.
..

One of the most upsetting things I saw on TV with it was on a "House" eposide in which he refers to ME/CFS as "lazy persons syndrome" or something like that and then nothing else was really then said about it.. nothing about it being any kind of valid illness.

My experience with TV (and newspapers): In any area I have knowledge in (due to my work or private interest) I find that TV is somewhat wrong sometimes more and sometimes less. TV brings a cartoon version of reality.

I have never seen Dr. Oz ("wrong" side of the pond), but from what I hear he is more a TV celebrity than a doctor. Some people like to take health advise from TV celebs, who am I to judge

And the "House" episode (I think it was one of the firsts) made angry too, but I guess they just realistically portrayed what most doctors think And the House character just investigates what he likes to investigate and follows his own bias he is an asshole after all. In his favour, I have to say he is interested in saving people who could die soon. But that surely didn't show how to make a proper diagnoses in that case.

 

[Valentijn]

I just downloaded (hey, it's legal here!) and watched the House pilot, and didn't see anything particularly insulting to ME/CFS or FM. It just happened to be the diagnosis that the hypochondriac fixated on. In fact, I think House's response could have been intended to indicate that the hypochondriac had a complete lack of understanding about the diseases.

Patient: I'm tired a lot.
House: Any other reason you think you might have Chronic Fatigue Syndrome?
P: It's kinda the definition, isn't it?
H: It's kinda the definition of getting older.
P: I had a couple headaches last month. Mild fever. Sometimes I can't sleep and I have trouble concentrating.
H: Apparently not while researching this stuff on the internet.
P: I was thinking, it also might be Fibromyalgia.
H: Excellent diagnosis!
P: Is there anything for that?
H: You know, I think there just might be.

Granted, I'd rather see it discussed in the context of ME/CFS being a serious craptastic disease, but I suppose it's a little too mundane for House, in addition to lacking the thrill of imminent death.

Oh, and isn't the coloring trippy in that episode? All dull washed out colors and sepia tones with everyone's face seeming to glow a bit.

 

[Sallysblooms]

The TV media doesn't do a whole lot right in portraying truth, so it doesn't surprise me.

 

[usedtobeperkytina]

An episode of Royal Pains had a case of a young musician with symptoms. The first thought was possibly ME/CFS. As the show developed, it was revealed she was poisoned by, I think anthrax. It treated ME/CFS is genuine and debilitating. (Well, in the conversation, it did. The patient didn't look real sick. But hey, that's true for many of us.)

House is known for being a jerk, that's the schtick. So, it would be appropriate for him to be insensitive. And we can't say that some people who get the symptoms of growing old might look online and see aches, pains, trouble with memory, fatigue and decide they may have ME/CFS. I had the opposite situation. I was developing the symptoms and assumed I was getting older and overworked. But it just kept getting worse and worse and worse. I didn't realize how much I had adjusted my activities to work around these symptoms. Finally, the sharp pains started rotating all over my body. Along with everything else, at that point, I knew something was very wrong.

Like everything else, "the media" is made up of lots of different people and companies. Each one is going to handle things differently. In my local city, I know a reporter who covered CFS. He has a high school friend with the disease. So he brings more knowledge to it. Also, there are a lot of people in LA who have it, but stay in the closet. In the 1980s, it was Hollywood's other secret. So, that generation of movie / TV writers are familiar with it. Golden Girls had an episode on the disease because the writer for the show has it.

But just as there are docs that know a whole lot, docs that recognize it is biological and disabling but don't know much more and docs that are ignorant and biased, the same is true for media.

Tina

 

[Snow Leopard]

The media tends to be totally ignorant about anything they don't have direct experience with. Seriously, the media is 'wrong' about CFS about as often as it is wrong about most things. We often don't notice because we aren't experts in those areas either.

 

[Carrigon]

The media is government controlled and always has been, therefore, we will never be shown in a good light. They never show real severe cases of this disease. They show propagana of someone who either has an incredibly mild thing or really never had this to begin with. And it's always, "I was sick for six months or so, but then I got better and went back to work." Yeah, right. Where are the cases of the bedbound, the housebound, the wheelchair bound? The public is never shown those. They portray the disease as nothing more than a mild case of fatigue that goes away after a few months.

 

[Valentijn]

An episode of Royal Pains had a case of a young musician with symptoms. The first thought was possibly ME/CFS. As the show developed, it was revealed she was poisoned by, I think anthrax. It treated ME/CFS is genuine and debilitating. (Well, in the conversation, it did. The patient didn't look real sick. But hey, that's true for many of us.)

I just ran into this episode while getting caught up on missed episodes, and it was a good portrayal of ME/CFS, though it was of course too dull to be the real disease! The doctor and PA discussed it as fitting the symptoms, EBV turning into it sometimes, and CFS being a career ender.

It's season 2, episode 15 "A History of Violins" if anyone's interested. CFS is mentioned after minute 15 or 16 in a commercial-free version.

 

[Purple]

I also vaguely remember an episode of House where the patient was a soldier diagnosed with CFS who continued to exercise hard despite the pain and exhaustion. House asked why he carried on exercising when it makes him so ill - the soldier said because he was trained to push through pain etc. In this episode, the soldier eventually had something else that almost killed him... and House saved him, as usual... (maybe someone can remember this episode better).

 

[markmc20001]

oh Dr Oz. I once saw him talking about ME/CFS on TV... it was aweful, he dont have a clue.
..

One of the most upsetting things I saw on TV with it was on a "House" eposide in which he refers to ME/CFS as "lazy persons syndrome" or something like that and then nothing else was really then said about it.. nothing about it being any kind of valid illness.

Yep hollywood propaganda.

I saw a house episode once. It was the one where house meets the CFS patient, rolls his eyes. Walks over to the pharmacy get some really good drugs like oxycontin, dumps the oxycontin pills in pocket for later use, goes to the vending machine and gets some small hard candies like lemon drops, and fills the empty oxycontin bottle with the candy then gives it to the patient....

 

[markmc20001]

I know DR oz did a lousy peace on CFS. However, I give Dr oz some credit. Apparently he exposed the bottled apple juice as having really high levels of arsenic even though he got a lot of flack for doing it....

 

[Valentijn]

There's a reality miniseries from 2008 called "Britain's Missing Top Model", featuring (I think) 8 women with various disabilities. It sounds like the ME girl does well but gets flack from the other contestants for not looking disabled enough. I haven't seen it yet, still downloading.

 

[nanonug]

The youtube video is a load of excrement. However, I don't think the other two are actually that bad. In particular, the emphasis on vitamin B12 shots is actually a step in the right direction (my first real treatment for CFS, in early 2000's, was with weekly intravenous Myer's cocktails containing methylcobalamin.)

 

[PhoenixDown]

http://www.dailymail.co.uk/health/a...-exercise-best-hope-recovery-finds-study.html

Hmm...

 

[alex3619]

Hi PhoenixDown, that link appears to be about the PACE trial. Its still being reported as a marvelous breakthrough, whereas I regard it as evidence that CBT/GET is on it way out. The Belgian finding of zero cures and a worsening of symptoms in 862 patients is both real world and larger, and is what we have experienced as a patient community. The writing is on the wall. The "good" results only occur in highly artificial studies where they coach patients to tick the "I feel better" boxes and get small improvements in peak activity when pushing (such as a six minute walking test). They are not concerned with overall functioning, cognitive issues, pain or suffering. They never test more than moderate patients and the ones they test are more likely to be classed as mild (using the ICC ME severity scale). Severe or very severe patients are all excluded. No objective measures of overall physical or cognitive functioning are included. Most of these patients do not have the other characteristic symptoms of ME. There is inadequate long term follow-up, including harm to drop-out patients. In the PACE trial the control groups tested are ludicrous and represent a "how not to run controls" example, par excellence.

I could go on and on and on ... oh, wait, I will be doing just that as I am writing a book on it. Its pseudoscience according to two definitions of pseudoscience, and I am currently testing it against more definitions. It fails three out of four categories of scientific excellence on another scale I am using, but I wont talk about that just yet.

Bye, Alex

 

[Desdinova]

I also vaguely remember an episode of House where the patient was a soldier diagnosed with CFS who continued to exercise hard despite the pain and exhaustion. House asked why he carried on exercising when it makes him so ill - the soldier said because he was trained to push through pain etc. In this episode, the soldier eventually had something else that almost killed him... and House saved him, as usual... (maybe someone can remember this episode better).

The episode was called Top Secret and It aired in the third season. The part I bold is great.

John: Usually it's the worst on my palms and on the bottoms of my feet I get these, black dots all over.

Cameron: I don't see anything.

John: It comes and goes.

Foreman: You sure it's not just scrapes and bruises?

John: I know the difference between a rash and a bruise.

Cameron: Sometimes it's harder than you may realize to distinguish between the two. You obviously exercise.

John: My problems aren't caused by my workouts.

Foreman: But you do work out, and by the look of you pretty strenuously. That's not usually the case with patients whose principle complaint is chronic fatigue and joint pain.

John: I was in the Marines for 12 years. I'm used to doing PT every day. Just because I can push through the pain doesn't mean it's not there.

Chase: We're not saying we don't believe you.

John: The hell you aren't.

Chase: We just need to be specific about what exactly the problems are.

John: I sleep 10 hours at night, but I feel tired all the time. I constantly get coughs, rashes, sore throats. My knees and hips feel like someone poured sand in my joints. I get these weird tingling sensations in my legs sometimes they're cold, other times it feels like my blood is boiling. Specific enough? Look I don't care what you guys call it, Gulf War Syndrome, Iraq fever or just crappy sickness X. I just want someone to figure out what it is so they can cure it.

 

[Valentijn]

I thought there was a longer thread of TV shows mentioning ME/CFS, but can't find it

Anyhow, the "O'Conners" episode of Wanted Down Under (British real estate show on BBC1) features a mother with ME. ME was portrayed very seriously - mom is in a wheelchair, looks pretty sick, talks about being bedbound/housebound between remissions since she was a teenager. They're also on "Wanted Down Under Revisted" which revisits them after a year in Australia, which is the episode I saw - a repeat from February 2016.

They wanted to move to Australia because doctors have told them that she might recover almost completely in a nicer climate (don't tell the aussie ME patients!) Though it does at least seem more suitable with more affordable single-storey houses, nice views when stuck at home, lots of open park space to sit around, etc. And getting away from the UK psychobabblers is probably correlated with improved health

They make a bit of deal about how amazingly active she is for the week they're in Australia ... then she has a severe relapse 2 months later back in England. Bigger delay than expected, but I definitely saw that one coming Though they're probably blaming it on the climate, due to the timing. It sounds like back in Australia she improved to mostly housebound with short trips ("I can usually cook dinner").