Lancet Editorial - Peter White & Trudie Chalder CFS: treatment without a cause

[SilverbladeTE]

Controls?
Methodical, unbiased trials, for CBT and ME?
My dear sir, Alex, old chap, what world do you come from to even suggest such a thing?!
Tsk tsk!
One shouldn't question prostitut...er, professionals!
These Dutch ass...er, caring, wonderful psychologists, know that the End Justifies The Means, and so will go to any length to achieve it!
Yes indeedy!!


(yes indeedy, is my code phrase for "A huge dose of bloody sarcasm, there, folks!!" )

 

[Enid]

I wonder why we waste our time Dolphin in trying to show the utter ignorance these people and their "numbers" - Myalgic Encephalo Myelitis and all the pathologies found have moved too far beyond them.

I will no longer look into the absolute crap produced by something calling itself a profession (my own family all basic Docs who know better) - I collapsed in A & E with elderly around (vague) fought them off and will always do so. But look through this on PR - over 5 thousand members - nothing I've not experienced.

Dolphin this bunch will try every means in the book to hold onto/and their "reputations" - a little bit of common sense, psychology (my degree), all recent biomedical findings of all the pathologies should confine them to the dustbin.

Er - permanently as the equivalent of (gosh it's thats old historical thing - ignorance). Next time burned at the stake ?).

 

[anniekim]

Hi Snow Leopard, I would like to add, in my case, I tried exercise including Tai Chi many many times over something like 15 years. How many times did it help? Zero. Several times I did get short term gains which then turned into long term problems. Each step from my moving from a very mild ME patient to a borderline severe ME patient was associated with an attempt at exercise. In my view exercise turns many of us from mild patients to severe patients. Drugs that do this in even one percent of cases are yanked off the market. My best guess is that exercise does this to at least half of us. If this were a drug it would be illegal to make it, distribute it, or prescribe it. Somehow CBT/GET for ME is immune from the strict controls that apply to drugs. Bye, Alex

Couldn't agree more with all you said

 

[Bob]

Here's the CAA's webpage about the FITNET study:
http://www.research1st.com/2012/03/04/fitnet/

It looks like quite a lengthy analysis, but I haven't read it yet.

 

[Firestormm]

01 March 2012: http://www.sciencemediacentre.org/pages/press_releases/12-03-01_cfs_internet_cbt.htm

Expert reaction to internet-based cognitive behavioural treatments for adolescents with CFS

The Lancet published research into the the effectiveness of a web-based program of cognitive behavioural therapy that appeared to reduce symptoms of chronic fatigue syndrome.

Professor Anthony Cleare, Consultant Psychiatrist, Institute of Psychiatry, Kings College London, said:

"Although the effectiveness of cognitive behavioural therapy for chronic fatigue syndrome is now beyond doubt, the lack of suitably trained therapists can limit the number of patients that can benefit.

"That an internet based therapy is so effective is very good news for patients who either cannot access a therapist, or who prefer therapy delivered over the internet. Indeed, the internet may be a particularly attractive medium for adolescents who have grown up accustomed to using it regularly.

"No one would suggest that the internet can replace face to face therapy, but this study suggests that it can certainly be a highly effective alternative in some patients.

"It is especially pleasing that such a large proportion of patients were able to return to full time schooling, since prolonged school absence can have profound long term effects on an individual."

Dr Esther Crawley, Clinical lead, Bath specialist paediatric CFS/ME service, and Senior Lecturer, University of Bristol, said:

"CFS/ME in adolescents is an important, disabling and relatively common condition, but few affected teenagers in the UK have access to specialist support or help. Providing treatment and support via the internet is an attractive option for those treating adolescents, as it has the potential to improve access using a medium that is familiar to young people.

"Results from this well-conducted trial show a substantial improvement in school attendance, fatigue and physical function in those that accessed the FITNET internet-based intervention, compared to those that received usual care. A higher proportion of children in the FITNET arm described themselves as completely recovered. However, it is not entirely clear what treatment was given to adolescents randomized to the usual care arm, and how this compares to treatment offered in the UK. Participants in the FITNET arm probably received much more input from therapists than is currently available in the NHS: adolescents and their parents logged in 255 times on average, and the therapists provided an average 28 e-consults. Internet-based treatment may not be the right approach for all adolescents and, if implemented in the UK, should probably be one of several approaches available."

Simon Wessely, Professor of Psychological Medicine, Institute of Psychiatry, Kings College London, said:

"This trial adds to the existing body of evidence that confirms that, as things stand today, CBT is the current best and safest treatment option for people with CFS. It's not perfect, but not many things in medicine are. The next challenge is to ensure that every CFS sufferer in Britain can obtain the treatment, should they want it."

Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial by Nijhof, S. et al., published in The Lancet on Thursday 1st March.

To contact the above please contact the Science Media Centre on 020 7670 2980

Note for editors

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For more details see our website www.sciencemediacentre.org, please e-mail the Science Media Centre with your comments

 

[Marco]

01 March 2012: http://www.sciencemediacentre.org/pages/press_releases/12-03-01_cfs_internet_cbt.htm

Expert reaction to internet-based cognitive behavioural treatments for adolescents with CFS


Professor Anthony Cleare, Consultant Psychiatrist, Institute of Psychiatry, Kings College London

Dr Esther Crawley, Clinical lead, Bath specialist paediatric CFS/ME service, and Senior Lecturer, University of Bristol

Simon Wessely, Professor of Psychological Medicine, Institute of Psychiatry, Kings College London, said:


To contact the above please contact the Science Media Centre on 020 7670 2980

Is there a smiley for 'pissing myself laughing'?

 

[Sam Carter]

...

Professor Anthony Cleare, Consultant Psychiatrist, Institute of Psychiatry, Kings College London, said:

"Although the effectiveness of cognitive behavioural therapy for chronic fatigue syndrome is now beyond doubt, the lack of suitably trained therapists can limit the number of patients that can benefit.

"That an internet based therapy is so effective is very good news for patients who either cannot access a therapist, or who prefer therapy delivered over the internet. ...

"No one would suggest that the internet can replace face to face therapy, but this study suggests that it can certainly be a highly effective alternative in some patients.

...

Dr Esther Crawley, Clinical lead, Bath specialist paediatric CFS/ME service, and Senior Lecturer, University of Bristol, said:

...

"Results from this well-conducted trial show a substantial improvement in school attendance, fatigue and physical function in those that accessed the FITNET internet-based intervention, compared to those that received usual care. ..."

Simon Wessely, Professor of Psychological Medicine, Institute of Psychiatry, Kings College London, said:

"This trial adds to the existing body of evidence that confirms that, as things stand today, CBT is the current best and safest treatment option for people with CFS. ..."

The implication of this study for those in CBT-land is that internet-based therapy is actually better -- far, far better -- than face-to-face therapy, and better than GET to boot, a fact which won't please PDW at all.

They can't have it both ways; if they accept that the results of the study are valid then they, and the army of therapists they want to create, are out of jobs.

If worklessness and poverty leaves them depressed (and a little bit fatigued, perhaps) at least they'll know where to turn to for help: internet-based CBT.

 

[Firestormm]

I agree Sam.

I'm also going to be a little circumspect about Wessley's contribution:

'Simon Wessely, Professor of Psychological Medicine, Institute of Psychiatry, Kings College London, said:

"This trial adds to the existing body of evidence that confirms that, as things stand today, CBT is the current best and safest treatment option for people with CFS. It's not perfect, but not many things in medicine are. The next challenge is to ensure that every CFS sufferer in Britain can obtain the treatment, should they want it."'

My 'take' on things psychological offered as therapies/treatments is that those selling them believe they truly are the 'only' things that are effective. So until the picture changes (in their minds) they'll keep trumpeting them.

Given all the things I have read from Wessely in the past, this snippet was 'better' than I expected. Although I don't concur with it and certainly not with the 'next challenge'.

Things are so 'woolly' in ME-land that claims like those above will ever be accepted. I mean we can't even get the bloody prevalence figures sorted out let alone a suitable criteria or even definition.

The gate is still wide open for anyone to claim 'recovery' or even 'cure' and worse than that countless authoritative opinions that keep patients confused and disorientated.

Snake oil anyone? Though how do you tell snake oil from anything else that gets passed around? Only by sucking on it and seeing for yourself. What a way to exist!

 

[Valentijn]

They can't have it both ways; if they accept that the results of the study are valid then they, and the army of therapists they want to create, are out of jobs.

It's quite funny to see one of the psych groups using their spin techniques against another psych group With any luck, it'll lead to the UK and Nijmegen groups being less supportive of each others' BS.

 

[Dolphin]

Letters in reply to Lancet papers have to be submitted within the next week or so

http://www.lancet.com/lancet-information-for-authors/article-types-manuscript-requirements

"Letters for publication in the print journal must reach us within 2 weeks of publication of the original item and should be no longer than
250 words"

and

"Only one table or figure is permitted, and there should be no more than five references and five authors"

Hopefully a few people will submit one.

 

[Cort]

The issue here is a matter of understanding to whom these study results might apply. Using the CDC's "emperical criteria" - Reeves, 2005 (apparently something even Suzanne Vernon - a co-author and long time defender of the CDC's "Reeves criteria" - is no longer willing to do - a recent post by Cort stated that the CAA is finally limiting all the research they fund to only those studies using patients meeting the Canadian Consensus Dx criteria) -.

I have to correct this..I made a mistake....in the Pdf's one of the studies stated the participants had to meet the Canadian criteria. The others didn't state what criteria they used. Some used biobank samples which require that the participants meet the Fukuda criteria and experience post-exertional malaise and cognitive issues.

 

[Hope123]

Ok, I'm too tired to read beyond the first few pages of this post but if no one has mentioned it:

The patients in this study differ from patients in other ME/CFS studies in the following respects, other than just being children:

- they're fairly early on in their course of the illness -- average time sick was less than 2 years
- the majority in treatment and control arms had gradual onset of the illness; about 30% had onset post-infection and
another 10% or so with "acute" onset; it is unclear what the authors mean by acute since it seems to mutually exclusive
of post-infection
[no subgroup analysis is done for the post-infection group]

Thus, the results of this study may not apply to cases of children who have been sick longer or who had post-infection/ acute onset (unless subgroup analysis shows this to be the case).

Further, people keep saying kids have a better prognosis but that may not be true per Dr. David Bell's 25-year follow-up of kids with CFS from Lyndonville. In fact, he was concerned that people took his 13-year study and assumed the recovery rate was 80%. The issue came down to the fact that people so wanted to get well that they will say they've recovered despite, if you question them deeply, the fact many aren't able to do things close to how their same-aged healthy peers act. Hence, the need for objective measures of outcome rather than questionnaires.

From: http://www.masscfids.org/resource-library/3/311

Dr. Bell previously published a paper on how well his pediatric-onset patients fared after 13 years, vs. the present timeline of 25 years. At the time of the earlier study, he reported that 80% of patients were "doing okay," with the other 20% remaining disabled. That conclusion was misleading, he now says, because the 80/20 figure created the impression that most patients had overcome the illness. "Doing okay," however, was not synonymous with being well.

About half of those in the "okay" group (or 40% of the total) were truly well. The other 40% still had significant symptoms and should therefore have been differentiated from the completely well and the completely disabled. Many thought they were "fine, thanks"; but they had not recovered.

 

[Firestormm]

9 March 2012: Well at least they didn't put 'cure' in the headline: http://www.reportingonhealth.org/bl...rome-well-least-they-didn’t-put-cure-headline

 

[Jarod]

Professor Anthony Cleare, Consultant Psychiatrist, Institute of Psychiatry, Kings College London

Dr Esther Crawley, Clinical lead, Bath specialist paediatric CFS/ME service, and Senior Lecturer, University of Bristol

Simon Wessely, Professor of Psychological Medicine, Institute of Psychiatry, Kings College London, said:

To contact the above please contact the Science Media Centre on 020 7670 2980

Does anybody know Crawley's, Cleare's, and Wessley's Phoenix Rising user names? I don't like to make phone calls and prefer just to send them a private message.

Is there a smiley for 'pissing myself laughing'?

Calling the Science Media Centre no doubt leads to more psychological abuse. Probably get put on hold for 20 minutes before getting disconnected.

 

[taniaaust1]

I doubt CBT on its own is really going to harm anyone significantly.

I personally think that CBT on its own could actually do a great amount of harm depending on what the people are being told. eg if one gets someone who has only recently developed ME and who dont know much about it... and if that CBT was telling that person to get over the illness they needed to push throu it and try to do the activities they did previously, to convince themselves doing activity couldnt harm them.. In this case much harm may be done. Even an online CBT course in that case could be very harmful.

I wish we all know what the kids in that study were actually being told during their CBT. Seeing so many improved, I doubt very much they were being told something like that in this case.

Unfortunately there are no clear guidelines on what is good and what are bad things to be doing during CBT, it would all depend on the therapist and they would be all be working on their ME/CFS patients beliefs in all kinds of ways according to whatever the therapists own illness beliefs were.

 

[taniaaust1]

I have to correct this..I made a mistake....in the Pdf's one of the studies stated the participants had to meet the Canadian criteria. The others didn't state what criteria they used. Some used biobank samples which require that the participants meet the Fukuda criteria and experience post-exertional malaise and cognitive issues.

ohh thanks for the correction.. I'd been quoting to people what you said as I'd taken it for a fact and had believed from it that ALL their studies now were using the CC CFS defination.

***feeling sad.. as I'd been so happy thinking they'd really shifted **

 

[taniaaust1]

Further, people keep saying kids have a better prognosis but that may not be true per Dr. David Bell's 25-year follow-up of kids with CFS from Lyndonville. In fact, he was concerned that people took his 13-year study and assumed the recovery rate was 80%. The issue came down to the fact that people so wanted to get well that they will say they've recovered despite, if you question them deeply, the fact many aren't able to do things close to how their same-aged healthy peers act. Hence, the need for objective measures of outcome rather than questionnaires.

From: http://www.masscfids.org/resource-library/3/311

Dr. Bell previously published a paper on how well his pediatric-onset patients fared after 13 years, vs. the present timeline of 25 years. At the time of the earlier study, he reported that 80% of patients were "doing okay," with the other 20% remaining disabled. That conclusion was misleading, he now says, because the 80/20 figure created the impression that most patients had overcome the illness. "Doing okay," however, was not synonymous with being well.

About half of those in the "okay" group (or 40% of the total) were truly well. The other 40% still had significant symptoms and should therefore have been differentiated from the completely well and the completely disabled. Many thought they were "fine, thanks"; but they had not recovered.

Thanks for sharing that Hope123. I think its so important that objective measures start being used.

My sister who Im going to say probably has CFS... she will often tell me she's now well. The other day she told me she is so well she can even go to a gym classes again... on questioning her further.. I said "oh that's so great, what dance? class are you doing".. she then informed me it was an "Laying down" exercise class. It was only then I found out that there is no way she could do a normal gym class.

Then yesterday I found out she was so ill the other day that her kids missed a day from school as she couldnt get out of bed to get them there..

umm "she's well". She's been told so many times by others to push herself throu her illness that she's falsely now convincing herself at times she's recovered and telling people that.

I wouldnt be surprised that this same thing is often happening CBT studies.

My own old ME/CFS specialist thought I was all better cause I'd told him I was doing well. By that I meant Im not bedridden anymore like I used to be and as long as I arent.. I see myself as doing well even if housebound thou I do basically nothing Unfortuately this positive thinking ends up misleading others into thinking that someone is well or recovered.

 

[Esther12]

I personally think that CBT on its own could actually do a great amount of harm depending on what the people are being told.

I think that all misleading information is innately harmful, and particularly when a CBT programme involves placing a therapist in a position of authority over a patient's cognitions and behaviours. If a therapist inaccurately reassures a patient, or provides misleading claims about the efficacy of treatments or the extent to which recovery is under the personal control of the patient, then this is harmful. That the approach to CFS taken by so many CBT therapists fails to recognise this is a serious problem, and imo the main reason that there is so much anger and hatred amongst CFS patients for those adopting a psychosocial approach to the condition.

 

[Lou]

If internet-based CBT could potentially cure me, I'd be glad to give it a try. The brain & mind can definitely impact the body and immune system. It's not far fetched at all to think CBT might help in some cases, imo. Maybe there are important differences in internet-based therapy over f2f therapy that make all the difference. Haven't read the study yet, plan to get to it soon.

Yep, CBT might help in some cases, if you've got depression and come to believe you've got ME/cfs then the mind/body connection might be modulated in a helpful way. It's ALL about the cohart. What I have can't be helped by CBT.

 

[PhoenixDown]

Yep, CBT might help in some cases, if you've got depression and come to believe you've got ME/cfs then the mind/body connection might be modulated in a helpful way. It's ALL about the cohart. What I have can't be helped by CBT.

They are playing a numbers game and gambling with our health. Some may turn out to have depression alone, but then there's not one shred of accountability for the false and damaging claims they make against patients who don't have depression alone. It's careless and irresponsible, and they don't care because they get paid one way or the other, and perhaps, perhaps they delude themselves into thinking they have "done the best thing" or acted "fairly", in order to let their conscience rests in peace.

What we need is a law that prevents them from doing this and makes them think twice before jumping to conclusions without necessary objective evidence.

EDIT: Then again some of them might be stupid enough to believe that 100% of the CFS co-hort are suffering from faulty illness beliefs, despite known cases of misdiagnosis.