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Mayo Clinic "goes British"

Messages
30
I've searched the Forums for a thread about this topic, but haven't found one (please let me know if I missed it).

I saw this article/post:

Conflicting Approaches to Chronic Fatigue Syndrome: Mayo Clinic "Goes British"
http://chronicfatigue.about.com/b/2...fatigue-syndrome-mayo-clinic-goes-british.htm

And then checked the Mayo Clinic website, which among other things state:
Therapy
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines psychological counseling with a gentle exercise program.
http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=treatments-and-drugs

How bad a blow is this, would you say, US-based friends?
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
There is a thread about this. Can't remember the name. I just hope the mayo clinic will just be ignored if this is what they think. I only get my medical advice from a knowledgeable integrative MD. I ignore stupid advice.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Mayo Clinic is a major source of reliable health information (for most topics that are not ME/CFS, or FM).

Mayo going over to the dark side is not new (they have been there as long as I have known anything about what the dark side was, about 2-3 years... my sense of time is not so good).
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I'm sick of this amateur Adrienne Dellwo pretending to be an expert on "chronic fatigue." for example:

My Personal View

So who do I think is right? If I have to choose one side, I'll go with the viral. In my opinion, the research is stronger there. I don't think this treatment approach will help everyone, though.

By the same token, I do need to acknowledge that some people are greatly helped by the biopsychosocial regimen.

Here's what I think: because we've got different definitions and different views of ME/CFS, I believe we're incorrectly labeling different conditions as the same thing...

I think different groups of researchers are studying different conditions altogether.

Her blog reminds me of Jean's Fashion Bug column in the Onion. And I am definitely not a Jeanketeer!
http://www.theonion.com/articles/the-tycoon-of-1567-blossom-meadows-drive,16215/

This site is owned by the NY Times. You'd think they'd get someone who knows what they're doing.

I have pointed out to her many times that calling her blog "Chronic Fatigue" (and this type of 'gee wiz' fluff) only helps those who intentionally abuse us, but she doesn't respond.

I have emailed her about her calling her blog "CF". I'd love it if you did too!

chronicfatigue.guide@about.com
 

Enid

Senior Member
Messages
3,309
Location
UK
Oh dear - take from me - avoid most Brits with anything to say about ME - fact is they are hopeless in the UK. Surely the Mayo Clinic can do better than failures here. You have much more science and research findings there yourselves to understand ME. Come on Mayo - catch up - far more advanced on your own doorstep.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Why would you think that? I think the paper should be used to line a bird cage for the most part, to liberal for me and biased!

GG

There is no "Liberal Media Conspiracy" (not saying you think that, merely a general point)
The vast majority of the media in the USA is owned by just FIVE groups/individuals.
They play whatever side they wish to bamboozle, to keep ignorant and not a threat to the Elite, and get money out of folk.

Please see the current "Hacking Scandal" in the UK, only reason that hasn't happened in US is the older draconian laws/oversight in USA on phone tapping etc...and (seriously) the NSA doesn't like folk stepping on its toes ;)

Regarding the so-called "press/news" etc, it's ALL a load of baloney, it's only by good fortune/incomplete control-ala-Kafka than any decent articles are published.
The term "yellow press" didn't come about without reason, media barons dragged our nations into war in times past (fact, please check for yourself).

ME is being "blocked" by The Powers That Be (for whatever reason), ergo, the media has major hand in it though without even realizing it.
The journalists aren't ME patients, they rely on what they are told, and what they are allowed to publish.
So they go to the "approved" outlets...folk like...the Science Media Centre in the UK, US has similar groups.
So you get a "pipelining" of info to the Public, and that pipeline is the MUSHROOM TREATMENT! :/
"Keep 'em in the dark, and feed 'em full of s***!"

If wish I can go get you stuff on how bad the media has become.
If it was truly liberal OR truly conservative, but honest, it wouldn't be anything like as bad/dangerous as it is now.
The probity of the "Fourth Estate" is a major lynchpin in the "health" of governance, and interaction between State and Populace of a Democracy
which is why it has been deliberately corrupted since Ceasar's time for gain, and co-opted and thus part of why our Democracies are in such deep crap.

What, you think only the Soviets did such stuff? :p

[video=youtube;Y3aKOQyoNAA]http://www.youtube.com/watch?v=Y3aKOQyoNAA&feature=related[/video]


ie, whole point of my post is: if any major media outlet has a journalist who actually, honestly cares about ME patients, or any group or ANY issue, AND can get that message published, it's by mere good fortune that they or their superior who lets them/hired them, has such scruples
I don't give a monkey's if they are are liberal or conservative, jsut honest, caring and willing to dig.

If anyone thinks I'm joking or crazy or stupid, go see the web of links between all of those in power: only a couple of steps of seperation seperate those who control your media, your power, your food etc.
One I loved was seeing the Murdoch Empire expsoed as having, iirc, $300 million worth of shares in a major vaccine manufacturer....oh, think they'll speak the truth on Wakefield etc?
WHy the hell then trust them?

so yes, only good thing for newspapers is indded, as you say...well, Poppy doesn't need that anymore, though ;)
But still useful if I ever get back to painting (to protect the table)
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
There are some good newspapers that are not liberal and thankfully one news channel! But the rest are awful. Fox News.com had the story about FDA and the stupid draft guidance, endangering supplements. Very good!!!
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Why would you think that? I think the paper should be used to line a bird cage for the most part, to liberal for me and biased!

GG

I think they are pretty accurate. For example, could you see Tuller's pieces being published anywhere else. Maybe I'm biased and don't see it because I am liberal.

I think our only hope for ME in the media will be liberal outlets since conservative ones are more prone, in my view, to label people like us who want government money spent on research for something as frivolous sounding as "CFS", as being leeches looking for a handout.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
I think they are pretty accurate. For example, could you see Tuller's pieces being published anywhere else. Maybe I'm biased and don't see it because I am liberal.

I think our only hope for ME in the media will be liberal outlets since conservative ones are more prone, in my view, to label people like us who want government money spent on research for something as frivolous sounding as "CFS", as being leeches looking for a handout.

Although media sources can go too far to the right, or to the left, ultimately I would agree that corporate conservative media is typically not our friend. They are most often a major part of the problem. I will be delighted anytime they behave differently.
 

Battery Muncher

Senior Member
Messages
620
I agree with Silverblade, Justin and Tristen. Whatever your politics are, you have to admit that the vast majority of anti-ME crap comes from conservative news outlets. It was them that started the "yuppie flu" tag, it is them that characterise us as wasters and malingerers, and it is them that continue to brand us as benefits-cheats and leaches on the social security system.

By contrast, the 'liberal' (USA-usage) media outlets are far more willing to believe us and defend us. The vast majority of positive articles on ME come from the 'liberal' media.
 

JayS

Senior Member
Messages
195
I have to disagree with this. ME/CFS denialism is non-partisan.

Yes, the attitude on the 'right' could reasonably be characterized as coming from a military/'Patton' sort of mindset. 'Pick up your bootstraps' and all that sort of thing. But 'yuppie flu' came from Newsweek, if I remember correctly. They're not exactly right-wing.

Likewise, the New York Times may not be as liberal as those on the right claim they are, but I think it would be a mistake to not acknowledge that, if anything, their politics do tend to lean towards the left, as a whole. Their coverage of CFS, to my understanding, was guided for years by a writer friendly to those at the NIH who saw this as a psychiatric illness, and not very serious.

I am not interested in arguing partisan politics. But I have seen some of the most vicious denialism in far more liberal publications--Salon, Huffington Post, Slate. There are reasons for this that go beyond the relatively simple anti-entitlement view on the right.

One is a variation of something that drives ME denialism in Europe: that their healthcare systems run very well, or, at least, they would, if not for these lazy/malingering/hypochondriacs with these 'bogus' conditions that drive up costs for everyone else. The vision of universal healthcare for the US, in general, incorporates a little bit of this.

Another is a 'feminist' sort of point of view where people like Elaine Showalter have wide influence. I've seen a few blogs where 'feminists' adopt a stance that I suppose is supposed to be iconoclastic somehow. It's kind of a mirror image of the stereotypical right-wing view on CFS and also Fibromyalgia.

Then there's the 'skeptic' community. Like the others it may be something of a misnomer to consider them specifically 'liberal.' But as people battling creationists, their views are, with a couple of exceptions, usually far from right-wing.

I would think most have noticed that the majority of the mainstream media, regardless of perceptions as to political leanings, leave the 'syndrome' off 'CFS' more often than not.

It may not be exactly true, but scientists and academics are typically considered to be mostly 'liberal.' I'm not sure it's accurate to ascribe the high percentages used in stories about this--90% or thereabouts--but I think there's something to the idea that a majority of people in these fields are not particularly conservative (as well as journalism). And I don't see many people in these fields standing up for us; they usually swallow whole whatever the 'experts' say, and the 'experts' are Wessely, Reeves, Heim, etc. When Nancy Klimas makes her statement comparing ME/CFS to AIDS in the NY Times, she's pretty much ignored.

Now we have the Affordable Care Act. It's a reasonable thought that 'liberals' are somehow more compassionate; this just doesn't apply to ME/CFS, however. I wonder if any ME/CFS patients who thought universal health care was a great thing thought much about how it would affect us. Of course, it's hard to have a problem with something that will benefit a great many people. But the way things are now is not acceptable, and that's been the case for decades, and if there's a way that this could improve the situation, I don't see it.

Did anyone see this?

http://www.npr.org/templates/story/story.php?storyId=144318154

The "Patient-Centered Outcomes Research Institute?" Sorry, I'm not optimistic. Treatment for CFS is CBT & GET, period. That's what the literature says. And that's what most people are going to agree with, regardless of what their 'politics' are.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Jay S, you make some great points. I certainly agree that almost all media, no matter what the politics, has done an inexcusably horrible job on reporting ME. I didn't follow ny times reporting on ME prior to 2009 when they started to have good coverage, imo. There was very little written up to that point in the Times as I understand, which is itself bad. So, yes the Times did a bad job, imo, up to 2009. I also sometimes find the writing style of the Times in their human interest and non-news stories to be very annoying, precious and out of touch. I agree NY Times is liberal.

What I meant is that compared to other media, the NY Times does a very good job of fact-checking and accurately reporting in general (not on ME specifically) imo. I guess that's not saying much since the general standard is low.

I am not a news- junkie type so I can't really comment more, but what you say makes sense to me.