Interviewed by local paper for article on CFS/FM

[LaurelW]

Dr. Bateman and I were both interviewed for this article:

http://www.deseretnews.com/article/...bone-crushing-fatigue-pain-for-many.html?pg=1

 

[illsince1977]

I found many of Dr. Bateman's statements disappointing. I never know what to make of these kinds of articles. Do they reflect the reporter's bias that causes them to misinterpret what the doctor/researcher said, or does the quoted doctor/researcher believe what the reporter quoted, or was the doctor/researcher outright misquoted? Specifically this:

"Every bit of research out there shows that this disorder responds somewhat to cognitive behavioral therapy and exercise," Bateman said.

Am I the only one who finds this borders on the outrageous?

 

[LaurelW]

I'm pretty sure that the comments were taken out of context or misquoted. The reporter basically knew nothing about CFS when she started, so I imagine that there's a gap there. Most of what she said about me was a direct quote from an e-mail, so it's kind of hard to mess that up. And I know Dr. Bateman doesn't subscribe to CBT/GET.

 

[illsince1977]

That would reflect badly on the reporter and editor. My father was once interviewed for a newspaper article, and the article read to him like a pack of lies, so I was raised to be very dubious of what is in the media. I am relieved to hear you say that Dr. Bateman does not subscribe to CBT/GET. Hopefully she will correct any misrepresentations herself.

 

[heapsreal]

i didnt think the article was too bad, as for the CBT therapy i dont think it gave the impression of it being a cure but maybe a copeing strategy. It did correctly give the impression that there is no cure yet. Dr Bateman treatments were mentioned as symptom treatment, maybe anti-infection agents could have been mentioned which would then have given more of a viral cause of cfs, but i think it would take an entire encyclodepia to explain cfs properly, hopefully the article inspires a few more people and docs to further research cfs.

cheers!!!

 

[LaurelW]

Thanks for your responses. The surprising thing to me as that the pictures showed me getting my first Ampligen treatment, but they didn't say anything about it in the story.

The reason I did the story was to try to raise awareness, so I think that it will do that. It did end up on the front page of the paper (I was a bit shocked as I thought it would be five sections back in Health), but good publicity for us.

 

[Navid]

wow...that's really weird that they had bateman talking abt cbt/get and there are pics of you getting ampligen....something that HAS actually helped me/cfs ppl regain their health....weird.

are you willing to keep us posted on how you progress. i am exploring ampligen as a treatment too; but it involves big life changes and lots of money, so I'd like to hear how other patients do b/f making the decision.

all my thoughts are with you for a recovery!!!!

take good care

 

[caledonia]

I could tell the reporter was clueless. I thought you came off better than the lady with FM.

I have some experience with reporters and being quoted too. They sort of get it in the ballpark, but things can get twisted.

I think it will help with publicity. Normals can't imagine being bedridden with no cure. I think it will shock them.

 

[Hope123]

I am having issues with logging into that particular site but I do hope that more people will register and put in some balanced comments. A lot of readers of that paper seem to think that ME/CFS and FM are nothing more than depression and/or unwillingness to get up and go. If you can comment, link it to the Stanford CFS video and the recent NIH State of the Knowledge Workshop so people can see that this is a biological illness.

 

[ixchelkali]

Laurel, thank you for your efforts at educating both the reporter and the public. I'm sure it must have used a lot of your precious energy. I hope you don't let the ignorant comments in response bother you...they're just the same old stuff and you're doing your part to do something about it.

 

[Tulip]

I thought the article was ok, it is the reader comments that are disgusting, especially the one from a "doctor".

 

[LaurelW]

Yeah....my fiance told me in no uncertain terms that it would be a bad idea to read the comments, so I think I will follow that advice. Pretty crashed from the whole thing, so I don't need any of that!

 

[taniaaust1]

Im discusted with that doctors comment too.. and its been recommended more then the other good comments

Great Job laurel..
...

A bit sad thou Bateman didnt come across like I thought she would of done being an ME/CFS expert (she came across more like a CBT supporter). She used words I didnt like and what we as a community dont need more pushed.

"Bateman prescribes medications or various therapies and helps provide a source of motivation to patients so they can do what they need to do"

umm "motivation".. I didnt like the way that was put as mention her helping to provide motivation and people think lazy or depressed. By that people are probably thinking she's giving everyone antidepressants.

I also didnt like " Symptoms vary greatly and can be a combination of genetic and behavioral components"

"Behavioural components".. I dont know what she meant by that, it could of meant we over push ourselves causing us to crash more but people probably will again take this comment that we need behavoural aspects worked on due to being unmotivated or being lazy

""Every bit of research out there shows that this disorder responds somewhat to cognitive behavioral therapy and exercise," Bateman said"

.. for many it doesnt do much at all and some cant do it and this article or Dr Bateman should of been more clear on that

"Now, with increased understanding of the condition, Bateman said people are coming out of the woodwork. But it's OK, as more doctors, even locally, know how to address it and how to help those who need it."

WHAT!!! I found that very very misleading thing to publically say.. "but it's OK" .. well its NOT OK!!! as most doctors do not address it well at all and dont know how to help people.

Something seems very wrong here.. I thought she was a ME/CFS expert.. so why is that article reading like it does in so many places. If the one who wrote the article changed things to imply differently.. there should be corrections done..
.........

Laurel so glad you were able to email your quotes.

 

[LaurelW]

Thanks for those points, Tania. I sent a rather strongly-worded e-mail to the reporter about the CBT/GET thing.

 

[justinreilly]

Brava to Laurel! I posted that this was a great article showing how devastating ME is. I was also disgusted with all the talk of exercise, motivation, behavior, CBT, "many causes of fatigue" etc. I remember Bateman as communicating some troubling things like this in the past, but more on the level of Nancy Klimas, not to this extent.

I think some of these doctors like Bateman and Klimas need to be VERY EXPLICIT and CAREFUL about controlling the message they send out. Never saying this kind of stuff and only being quoted by email (off the record for phone conversations). It is a pain, but look at the results of being sloppy; it looks like a CAA press release. Like Klimas, Bateman calls her org a 'fatigue' org and her clinic a "fatigue" clinic, not an ME or even "CFS" clinic/org. I think this sends a VERY bad message and should change (I think it also indicates that she may in fact say these kinds of quotes about 'fatigue' and exercise etc when we're not looking). How can we expect a newspaper or anyone else to not call our disease "fatigue" or "CF" if our doctors can't even be f**ked to do it!!

I realize that Dr. Bateman's sister died of NHLymphoma sequela to ME and she has devoted herself to helping us. But I wish that she and Klimas would keep quiet if what they are going to say is these kind of harmful statements! It's just not acceptable!

I've sent her an email on all this and also asking her about the CBT and GET quote specifically. clinic email: fcclinic@xmission.com

 

[justinreilly]

Here's another outlet for this piece. The headline is "Fibromyalgia to cause bone-crushing fatigue." Funny, I didn't know it was a scheduled event!
KSL newsradio website (Utah):
http://www.ksl.com/?nid=960&sid=15534055

 

[LaurelW]

The headline is "Fibromyalgia to cause bone-crushing fatigue." Funny, I didn't know it was a scheduled event!

Justin, you are an absolute hoot!

 

[*GG*]

I found many of Dr. Bateman's statements disappointing. I never know what to make of these kinds of articles. Do they reflect the reporter's bias that causes them to misinterpret what the doctor/researcher said, or does the quoted doctor/researcher believe what the reporter quoted, or was the doctor/researcher outright misquoted? Specifically this:

Am I the only one who finds this borders on the outrageous?

Perhaps she was just speaking in generalities. CBT is supposed to be usefull in any long term illness. Not every patient is bedbound, so perhaps the exercise is for people who are still relatively functional, and should/could be helpful to patients so they do not become to deconditioned.

GG

 

[invisible ME]

Thanks for this, Laurel.

I thought your quotes were great - informative and relevant. Overall actually, I thought the article was quite good. I could see that Dr. Bateman's comments might have been taken out of context. I read her as saying that there's a big difference between a slight improvement (i.e. CBT/GET) and a real cure/treatment.

The more awareness, the better. Even though the article wasn't perfect, it does seem an improvement from what we've seen in years past.

 

[justinreilly]

Thanks for this, Laurel.

I thought your quotes were great - informative and relevant. Overall actually, I thought the article was quite good. I could see that Dr. Bateman's comments might have been taken out of context. I read her as saying that there's a big difference between a slight improvement (i.e. CBT/GET) and a real cure/treatment.

The more awareness, the better. Even though the article wasn't perfect, it does seem an improvement from what we've seen in years past.

"Every bit of research out there shows that this disorder responds somewhat to cognitive behavioral therapy and exercise," Bateman said.

Her statement is harmful and not true. The Spanish study showed they're harmful. Every single survey that's been done have showed they're the most unhelpful and harmful "therapies." The Twisk and Maes paper shows they're "harmful and unethical". The CBT in "CBT/GET" is telling patients they do not have a physical disease and have a phobia of movement and they must do graded exercise because it's the only therapy proven to work.

As i remember it, Bateman and Klimas were authors on CAA's CME and there was talk in there of GET and phobia of movement.

I support the form of CBT for ME which is like that given in other diseases, where the patient is encouraged to examine unhelpful beliefs like that they must keep up their premorbid level of activity or that they are less of a person because they are ill. This is NOT the CBT used in CBT/GET.