Harm from GET and CBT

OverTheHills

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Well big thanks to one of our very own for publishing this excellent scholarly review. What an acheivement!

:balloons::thumbsup::thumbsup::thumbsup::balloons:

I have been really hoping that someone with enough ability and academic writing skill would publish some of the PACE analysis which I admire in the PACE thread, and here is something perhaps even more useful. Is the iacfsme bulletin listed on ?pubmed ?medline so other researchers can see it. I hope so. How does Tom do it? I have very poor memory now and can only admire.

Anyway.I expect he's blushing so I'll stop now. OTH

PS And thanks Andrew for posting it.
 

WillowJ

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yes, indeed! well done to our Tom, who does generously give his time and talents to help our community!
 

justinreilly

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This is so great! Thank you Tom! We really need 'scholarly articles' especially topic review articles on ME. Wessely and co. especially dominate this area and it is critical for us because this is the info that gets transmitted to doctors (and the general public via repetition on Wikipedia). If anyone wants to try this type of thing and try to get it published, please do! It is very helpful for us.
 

LBS

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Nicely done. This is what we need, a piling on of better evidence and analysis as to why the "evidence" supporting these harmful treatments isn't sound.
 

alex3619

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I still haven't read this with the attention it deserves, but my casual reading indicates an important step in this paper is specific recommendations on how to fix the issues raised. There are lots of critical papers or commentaries, but very few that make recommendations on how to fix things. Of course those with vested interests in CBT/GET might not want to read any of it, and will probably ignore the advice, but they are not the primary target audience I wouldnt think. Bye, Alex
 

justinreilly

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I can provide a modest monetary stipend as a small thank you for such work if anyone is studly enuf to draft and get published a good article like this or the Twisk & Maes articles.

This is so great! Thank you Tom! We really need 'scholarly articles' especially topic review articles on ME. Wessely and co. especially dominate this area and it is critical for us because this is the info that gets transmitted to doctors (and the general public via repetition on Wikipedia). If anyone wants to try this type of thing and try to get it published, please do! It is very helpful for us.
 
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A really thoughtful & incisive piece showing why and how harms should be reported on the same basis as any therapeutic gains. If researchers take up these recommendations we'd get much more reliable data on the true safety of treatments like CBT.

I also think it's a really important article with implications for all non-pharmacalogical research, not just CBT/GET for CFS.

Great work by Tom Kindlon.
 

taniaaust1

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Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
thanks. I put that reference at the world wide wikipedia to support under GET "Surveys conducted on behalf of patient organizations commonly report adverse effects."

(at wiki at the end of that quote which are supposed to reference it, I was surprised to noticed there are references which linked to Wessely stuff which I dont understand that he would be actually supporting adverse effects coming from GET. Anything coming from him wouldnt be truely referencing the statement unless he's using it in a negative kind of way).

Shouldnt references at the end of that statement be properly supporting the statement being made but coming from the patient orgs themselves seeing they were the ones being refered to? (another way the wikipedia is being used in a biased way). Maybe someone has the time and energy to check those links and see if they do support properly what they are supposed to be refering.

I wonder if they will think up some reason to remove Tom Kindlon's reference. Im waiting to see.
 

Dolphin

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thanks. I put that reference at the world wide wikipedia to support under GET "Surveys conducted on behalf of patient organizations commonly report adverse effects."

(at wiki at the end of that quote which are supposed to reference it, I was surprised to noticed there are references which linked to Wessely stuff which I dont understand that he would be actually supporting adverse effects coming from GET. Anything coming from him wouldnt be truely referencing the statement unless he's using it in a negative kind of way).

Shouldnt references at the end of that statement be properly supporting the statement being made but coming from the patient orgs themselves seeing they were the ones being refered to? (another way the wikipedia is being used in a biased way). Maybe someone has the time and energy to check those links and see if they do support properly what they are supposed to be refering.

I wonder if they will think up some reason to remove Tom Kindlon's reference. Im waiting to see.
Good.
Probably best to edit it and put the reference with the link i.e.
Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME, Fall 2011;19(2):59-111 http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
 

Sean

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Let's play 'predict the excuses they will use to remove the reference'.

I'll start with:

Author has no track record, and is also a patient and hence is clearly biased beyond all hope.

It is only one paper.

It is not published in a high impact journal.And who the f..k are the IACFS/ME anyway?

We already know that all patients are whinging, delusional, dishonest, and possibly violent nutters.
 

Dolphin

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thanks. I put that reference at the world wide wikipedia to support under GET "Surveys conducted on behalf of patient organizations commonly report adverse effects."

(at wiki at the end of that quote which are supposed to reference it, I was surprised to noticed there are references which linked to Wessely stuff which I dont understand that he would be actually supporting adverse effects coming from GET. Anything coming from him wouldnt be truely referencing the statement unless he's using it in a negative kind of way).

Shouldnt references at the end of that statement be properly supporting the statement being made but coming from the patient orgs themselves seeing they were the ones being refered to? (another way the wikipedia is being used in a biased way). Maybe someone has the time and energy to check those links and see if they do support properly what they are supposed to be refering.

I wonder if they will think up some reason to remove Tom Kindlon's reference. Im waiting to see.
I see it's gone now. :(
Did anyone get a chance to write the full reference before this was done? Was a reason given?
 

Carrigon

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Apparently, the Mayo Clinic has now adopted GET and CBT.
http://chronicfatigue.about.com/b/2...fatigue-syndrome-mayo-clinic-goes-british.htm
I feel like we're being witch hunted. There is no amount of this fake therapy that will ever help my symptoms. Can it fix POTS, IBS, Hashimotos, and the million other things I've got? What about the high white cell count and high viral titers? I'm beyond upset. I'm so physically ill right now that I can't even get my snail mail. And there is no amount of GET that is going to fix that.
 

Sean

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Let's play 'predict the excuses they will use to remove the reference'.

[edit]

It is not published in a high impact journal.And who the f..k are the IACFS/ME anyway?
From the Wikipedia talk page for CFS:

"I had not looked on the website, where it says that "The Bulletin of the IACFS/ME is a peer review [sic] online journal" At the same time, the site does not list an editorial board, and the editorial policies are unclear. Even if it publishes "peer review" articles, it is miles away from a reliable source on medical subjects."
One down, three to go.
 

Dolphin

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"I had not looked on the website, where it says that "The Bulletin of the IACFS/ME is a peer review [sic] online journal" At the same time, the site does not list an editorial board, and the editorial policies are unclear. Even if it publishes "peer review" articles, it is miles away from a reliable source on medical subjects."
The editorial board is at: http://www.iacfs.net/BULLETINFALL2011/tabid/499/Default.aspx

The editor is Fred Friedberg, a psychologist who uses CBT for CFS i.e. this isn't the sort of article he would write.

Articles are peer-reviewed.
 

alex3619

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Tom Kindlon asked me to post this for him.

(May be re-posted/please re-post)

Given all the positive feedback that I have received since Friday, I
would like to acknowledge some more people who gave input at various
stages of my recently published paper* [along with Lily Chu, the
reviewers and Amberlin Wu RIP, all of whom I thanked already in the
paper].

I first started writing it August 2010 and it went through many drafts.
People gave various amounts of input but even reading the paper once
and giving one or two comments (most people did more than this) took
some effort given the length.

So thanks to:
(in alphabetical order by first name)
Alison Deegan Kindlon Andrew Kewley, Clara Valverde, Deborah Waroff, Ellen
Goudsmit, George
Faulkner, Greg & Linda Crowhurst, Jane Colby, Janelle Wiley, Jennie
Spotila, Joan Crawford, Karen M. Campbell, Karl Krysko, Kelly Latta,
Pat Fero, Peter Kemp, Sean**, Simon McGrath & Susanna Agardy.
Also thanks to some other people who gave help but who felt their
input wasn't enough to be mentioned. Thanks too to many other people I
have learned from over the years.

Regards,

Tom Kindlon


* Kindlon T. Reporting of Harms Associated with Graded Exercise
Therapy and Cognitive Behavioural Therapy in Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME,
Fall 2011;19(2):59-111.
Available at: http://bit.ly/rZCSMW i.e.
<http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/t
abid/501/Default.aspx>

** That's all he wanted.