FITNET Trial: Effectiveness of internet-based CBT for CFS: an RCT (Nijhof et al, '12)

Dolphin

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Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial

The Lancet, Early Online Publication, 1 March 2012 doi:10.1016/S0140-6736(12)60025-7

Dr Sanne L Nijhof MD a , Prof Gijs Bleijenberg PhD c, Cuno SPM Uiterwaal PhD b, Prof Jan LL Kimpen PhD a, Elise M van de Putte PhD a

Summary*

Background

Chronic fatigue syndrome is characterised by persistent fatigue and severe disability.

Cognitive behavioural therapy seems to be a promising treatment, but its availability is restricted.

We developed Fatigue In Teenagers on the interNET (FITNET), the first dedicated internet-based therapeutic program for adolescents with this disorder, and compared its effectiveness with that of usual care.

Methods

Adolescents aged 1218 years with chronic fatigue syndrome were assigned to FITNET or usual care in a 1:1 ratio at one tertiary treatment centre in the Netherlands by use of a computer-generated blocked randomisation allocation schedule.

The study was open label.

Primary outcomes were school attendance, fatigue severity, and physical functioning, and were assessed at 6 months with computerised questionnaires.

Analysis was by intention to treat.

Thereafter, all patients were offered FITNET if needed. This trial is registered, number ISRCTN59878666.

Findings

68 of 135 adolescents were assigned to FITNET and 67 to usual care, and 67 and 64, respectively, were analysed.

FITNET was significantly more effective than was usual care for all dichotomised primary outcomes at 6 monthsfull school attendance (50 [75%] vs 10 [16%], relative risk 48, 95% CI 2789; p<00001), absence of severe fatigue (57 [85%] vs 17 [27%], 32, 2149; p<00001), and normal physical functioning (52 [78%] vs 13 [20%], 38, 2363; p<00001).

No serious adverse events were reported.

Interpretation

FITNET offers a readily accessible and highly effective treatment for adolescents with chronic fatigue syndrome.

The results of this study justify implementation on a broader scale.

Funding

Netherlands Organisation for Health Research and Development.

http://www.lancet.com/journals/lancet/article/PIIS0140-6736(12)60025-7/fulltext
* I gave each sentence its own paragraph.

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Study protocol - free full text: http://www.biomedcentral.com/1471-2377/11/23

Fatigue In Teenagers on the interNET - The FITNET Trial. A randomized clinical trial of web-based cognitive behavioural therapy for adolescents with chronic fatigue syndrome: study protocol. [ISRCTN59878666]

Sanne L Nijhof1*, Gijs Bleijenberg2, Cuno SPM Uiterwaal3, Jan LL Kimpen1 and Elise M van de Putte1

* Corresponding author: Sanne L Nijhof s.l.nijhof@umcutrecht.nl

Author Affiliations
1 Department of Pediatrics, Wilhelmina Children's Hospital, University Medical Centre Utrecht, The Netherlands
2 Expert Centre for Chronic Fatigue, Radboud University Nijmegen Medical Centre, The Netherlands
3 Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, The Netherlands

BMC Neurology 2011, 11:23 doi:10.1186/1471-2377-11-23

The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1471-2377/11/23

Received: 28 January 2011
Accepted: 19 February 2011
Published: 19 February 2011

Abstract

Background

Chronic Fatigue Syndrome (CFS) is increasingly recognized as a cause of disability and inactivity in adolescents in the Netherlands.

CFS is characterized by unexplained fatigue lasting more than 6 months.

Cognitive Behavioural Therapy (CBT) has proven to be effective.

However, CBT availability for adolescents with CFS is limited and requires special therapeutic skills not always readily available.

An alternative to the face-to-face CBT is FITNET, a web-based therapeutic program designed specifically for adolescents diagnosed with CFS, and their parents.

This new CBT approach appeals to the modern youth, who grow up with internet as their main source of information.

A web-based program offers the opportunity to lower thresholds for the acceptance and realization of healthcare.

This treatment can be activated at any chosen time.

The communication between patient and therapist can elapse asynchronously.

If effective, this web-based program would greatly increase the therapeutic accessibility.

Methods/Design

A randomized clinical trial is currently conducted.

One-hundred-forty adolescents aged 12-18 years diagnosed with CFS will be recruited and randomized to one of two groups: FITNET or usual care.

After 6 months, the usual care group will have access to the FITNET program.

Outcomes will be assessed at baseline, post intervention, and at 6 months follow-up.

Primary outcome measures are school presence, fatigue severity, and physical functioning.

Discussion

The FITNET study is the first randomized clinical trial which evaluates the effect of web-based CBT versus usual care in adolescents with CFS.

The intervention is based on a theoretical existing model of CBT for patients with CFS.

The results of this study will provide information about the possibility and efficacy of web-based CBT for adolescents with CFS and will reveal predictors of efficacy.

Trial registration
ISRCTN: ISRCTN59878666 and ClinicalTrials.gov: NCT00893438
* I gave each sentence its own paragraph.
 
No ME patients participated in this study.

I know this because I was among those asked to comment on the project proposal, several years ago. All our criticism was ignored and the project still received funding.

But this outcome makes you wonder how horribly wrong the treatment named 'usual care' must have been...
 

Esther12

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EDIT: New paper shows that at follow up there was no difference between intervention and control groups: http://forums.phoenixrising.me/inde...-rct-nijhof-et-al-12.14931/page-8#post-354752


Isn't the criteria for adolescent CFS often really weak (I'm not sure which they used for this), and with a high rate of natural improvement? It wouldn't surprise me if 'normal care' made things worse, or if those collected within this 'CFS' wastebasket were more likely to find on-line chatting helpful.

Looks like another media blitz on 'positive thinking'.

Teenagers with chronic fatigue syndrome can now cure themselves by using the internet.

Two-thirds who did the pioneering online positive thinking course got the all-clear in six months.

That was eight times more effective than the standard care of seeing a therapist.

The ailment, also called ME, hits one in 100 adolescents and is a common reason for missing school.

It leads to lethargy, muscle and joint pain and poor concentration.

The Fitnet treatment fatigue in teenagers on the internet also uses cognitive behaviour techniques.

It teaches the kids to isolate problems and think about them differently. A therapist is on hand via email.

A trial of 135 patients in Holland revealed 63% recovered in six months on Fitnet, the first web-based treatment for adolescents, 85% were no longer over-tired, 78% got better phy-sically and 75% returned to school.

Researchers at University Medical Centre Utrecht say the internet medical aid is available any time and avoids costly travel, having to fix appointments and missing school or work.

ME specialist Dr Esther Crawley of Bristol University said: This is an attractive option with the potential to improve access using a medium that is familiar to young people.
http://www.mirror.co.uk/news/techno...ger-with-chronic-fatigue-cure-yourself-748127

Online Program Helps Teens with Chronic Fatigue
By Crystal Phend, Senior Staff Writer, MedPage Today

Published: February 29, 2012

Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco.

Action Points

A web-based therapy program appeared to improve symptoms of chronic fatigue syndrome for teens.
Point out that school attendance also improved substantially with the interactive cognitive behavioral therapy (CBT) in the program compared with usual care, and the results appeared durable through one year.

A web-based therapy program appeared to improve symptoms of chronic fatigue syndrome for teens, according to the results of an open-label trial.

The program, dubbed FITNET, more than tripled the number of adolescents who reported absence of severe fatigue and normal physical functioning (both P<0.0001), Sanne L. Nijhof, MD, of the University Medical Center Utrecht, the Netherlands, and colleagues found.

School attendance also improved substantially with the interactive cognitive behavioral therapy (CBT) in the program compared with usual care, and the results appeared durable through one year, the group reported online in The Lancet.

"FITNET offers a readily accessible and highly effective treatment for adolescents with chronic fatigue syndrome," they wrote. "The results of this study justify implementation on a broader scale."

The effect size was impressive, with 63% of patients reporting full recovery compared with just 8% with usual care, noted Peter D. White, MD, of St. Bartholomew's Hospital in London, and Trudie Chalder, PhD, of King's College London, in an accompanying commentary.

They said that advantages of FITNET were its systemic approach and complex and frequent interventions. However, they pointed out that the researchers used a liberal definition of recovery, and that some individuals in the study were already attending school fairly frequently.

However, they said that "with chronic fatigue syndrome now identified as a common cause of long-term school absence, an accessible and flexible treatment for adolescents is most welcome."

The study included 135 adolescents, age 12 to 18, with chronic fatigue syndrome who were randomized at one center in the Netherlands to open-label treatment with either:

The online FITNET program (Fatigue in Teenagers on the Internet), which included education, interactive cognitive behavioral units, and email consults with trained psychotherapists

Usual care, which included CBT in person (66%), individual or group rehabilitation programs (22%), or graded exercise therapy (49%)

At six months, when the FITNET program was nearly finished for the average participant, the primary outcomes all favored the intervention.

Missing less than 10% of school days was 4.8-fold more likely with the intervention than with usual care (75% versus 16%, P<0.0001).

Absence of severe fatigue at six months reached 85% with the online cognitive behavioral program compared with 27% with usual care, a 3.2-fold difference (P<0.0001).

Self-reported normal physical function rates were 3.8-times higher with the intervention as well (78% versus 20%, P<0.0001).

Teens were nearly three times more likely to report an improvement in their condition, both in fatigue and disability, with FITNET as well (78% versus 27%, P<0.0001).

Numbers needed to treat for all the outcomes were in the 1.7 to 2 range.

In the intervention group at 12 months, school attendance had improved further along with sustained effects among those who reached the criteria for recovery.

After six months, the control group could crossover to the interactive CBT group. Those who did showed similar treatment results at 12 months.

While many of those adolescents had been receiving CBT as part of usual care, the Internet-based intervention may have yielded further improvements by being readily accessible around the clock and by offering professional feedback by a trained psychotherapist, the researchers suggested.

Another explanation may simply be the high volume of care delivered with the intervention, the commentary noted.

"Participants logged on a mean of 255 times to the program modules of cognitive behavioral therapy, emailed the therapists a mean of 90 times, and received 49 replies from the therapist," White and Chalder wrote.

Also, the usual care group did "surprisingly poor," perhaps because they knew that they would be offered the intervention after six months, they added.

The results might not be generalizable to adults, whereas Internet-based treatments appeal to adolescents, the commentators noted.

Other limitations were the post hoc definition of recovery and self-rated results for several outcomes.
http://www.medpagetoday.com/PainManagement/PainManagement/31423

Chronic fatigue syndrome: Web therapy 'can help'


Web-based treatment may be better at helping teenagers with chronic fatigue syndrome, according to a study by scientists.

Dutch researchers writing in The Lancet journal said 63% of those given psychotherapy online had reported making a recovery.

This is almost eight times better than those given standard care.

UK experts said the difference was "impressive", and showed that therapy given this way could be effective.

The reasons why people suffer chronic fatigue are not well understood, but in recent years it has been suggested that cognitive behavioural therapy - a form of psychotherapy - can have a positive effect in some cases.

However, even if this became an established therapy, the relatively small number of therapists available in some areas would be an obstacle to reaching everyone affected.
Support by email

The Dutch study, organised by the University Medical Centre in Utrecht, looked at the potential of Fitnet, a web-based psychotherapy programme.

Fitnet tries to replicate face-to-face cognitive behavioural therapy online, with a skilled therapist on hand to provide support via email.

A total of 135 adolescents with chronic fatigue were involved in the study - half were given standard treatment, normally individual or group psychotherapy and exercise therapy, while the remainder were enrolled into Fitnet.

After six months, 85% of the Fitnet group said they had no severe fatigue, compared with 27% in the standard treatment group.

Three-quarters of the Fitnet adolescents were attending school fully, compared with just 16% of those receiving standard treatment.

After a year, similar results were seen, even among those who swapped from standard to Fitnet at the six-month mark.

Fitnet was more intensive than standard treatment, with participants logging on to the software an average of 255 times, and emailing the therapists on average 90 times.

Professors Peter White, from Barts and the London School of Medicine, and Trudie Chalder, from King's College London, both psychologists, said that the Dutch researchers should be congratulated for carrying out the research.

"They have added to an increasing evidence base which shows that therapist-aided, internet-based cognitive behavioural therapy is an effective treatment for many similar disorders."

However, they said that the response to conventional psychotherapy seemed unusually poor, and that there was no guarantee that similar results would be achieved among adult patients.
http://www.bbc.co.uk/news/health-17209795

Online treatment reaps rewards for teenagers with chronic fatigue


Author Justin Norrie


A web-based therapeutic programme for adolescents with chronic fatigue syndrome is at least three times more effective in reducing symptoms of the disorder than regular treatment, one study has found.

Researchers who studied the impact of the Fatigue In Teenagers on the interNET (FITNET) program on a group of adolescents found that the web-based treatment dramatically reduced fatigue, school absence, and physical dysfunction in just six months.

Under the FITNET program, patients can log in and send e-mails to trained cognitive behavioural psychotherapists at any time. Therapists respond to the e-consultations on set days, but also reply immediately to emergency emails.

The patients are expected to keep diaries, answer questionnaires, and take part in reviews of each step in their treatment.

For the study, researchers from The Netherlands recruited 135 adolescents who had suffered from chronic fatigue syndrome for almost 2 years; 68 were randomly assigned to FITNET and 67 to usual care, which consisted mainly of individual and group cognitive behavioural therapy or graded exercise therapy.

After six months, 85% of adolescents in FITNET group reported that they no longer suffered from severe fatigue, compared with 27% in the second group; 78% reported normal physical functioning, compared with 20%; while full school attendance was attained by 75% of students, compared with just 16%.

The results of the study are published online today in the journal The Lancet.

It is estimated that between 40,000 and 140,000 Australians suffer from chronic fatigue syndrome, a mysterious illness of unknown cause that may be linked to a virus. Patients complain they are routinely humiliated and ostracised by people who do not take their physical suffering seriously, because they regard the condition as a psychological, rather than a biological, one.

Sanne Nijhof from the University Medical Centre Utrecht in The Netherlands, and lead author of the research, said that with e-consultations, effective treatment is within reach for any adolescent with [chronic fatigue syndrome]. These findings stress the need for proper and rapid diagnosis and making medical professionals aware of adolescent chronic fatigue and the treatment options.

Web-based treatment has general advantages: it is available at any time, avoids face-to-face treatment barriers [such as] treatment delay due to poor accessibility, inconvenience of scheduling appointments, missing school or work, travelling to or from a clinicians office and reduces treatment time and costs.

The report concluded that it was unclear which aspect of the FITNET program such as being readily accessible soon after diagnosis, 24-hour availability, anonymity, or professional feedback by a trained psychotherapist, is the reason for this increased effectiveness.

Rosanne Coutts, an Accredited Exercise Physiologist and Lecturer in Sport and Exercise Psychology at Southern Cross University, said the results demonstrated the importance of the psychological aspects within treatment processes.

By using the internet, which adolescents are very familiar with, they have met them "where they live, Dr Coutts said. "The patients also seemed fairly involved in what they did, it was quite self-driven, putting patients back in charge of their own recovery. Further detail about the actual physical activity conducted in both groups would be of interest and would assist with understanding any physiological changes that had also occurred.

The study also relied on self-report, however even with consideration for some self-reporting bias the school attendance is a clear indicator of levels of recovery. Previous studies report a good prognosis for adolescents and this study again supports this.

Professor Anthony Cleare, a consultant psychiatrist at the Institute of Psychiatry, Kings College London, said that although the effectiveness of cognitive behavioural therapy for chronic fatigue syndrome was beyond doubt, the lack of suitably trained therapists could limit benefits for patients.

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, Professor Cleare said. "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."
http://theconversation.edu.au/online-treatment-reaps-rewards-for-teenagers-with-chronic-fatigue-5652
 

Dolphin

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Isn't the criteria for adolescent CFS often really weak (I'm not sure which they used for this), and with a high rate of natural improvement?
Criteria can vary. Maybe you are thinking of the Esther Crawley study where she used NICE criteria which are weak (which are probably a significant reason for the high prevalence she found). However, this is a Dutch study so don't think they used those criteria. Haven't checked the details yet.
ETA: criteria for children can require a shorter duration of the symptoms before it's counted as being CFS, so it is a bit broader in that way.

There is certainly a high rate of natural improvement in adolescent CFS (can be seen from mono studies, for example). It seems possible to me that people in the control group could be cautious and might be able to do a bit more. However, that's not to complain about them - sometimes with this illness "discretion is the better part of valour".
 

Firestormm

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No ME patients participated in this study.

I know this because I was among those asked to comment on the project proposal, several years ago. All our criticism was ignored and the project still received funding.

But this outcome makes you wonder how horribly wrong the treatment named 'usual care' must have been...
Interesting, Guido. And I couldn't agree more with your final sentence. It does make one wonder about the effectiveness of 'conventional' therapy when the internet can seemingly prove so much more effective. Maybe it's just teenagers? Who knows?

Still, it seems to have prompted some concern among those practising in the 'traditional' manner. Imagine PACE was delivered via the internet? I wonder how adults would have responded?

I did note from the BBC article that graded exercise was a feature too but seemingly only with the standard care package which seems 'odd':

'A total of 135 adolescents with chronic fatigue were involved in the study - half were given standard treatment, normally individual or group psychotherapy and exercise therapy, while the remainder were enrolled into Fitnet.'

You'd think 'Fitnet' would involve graded exercise too. Perhaps I haven't read it through well enough yet. I will get the full papers hopefully later and give them a whirl...

Hmm... Fatigue In Teenagers reminded me of that muppet take-off Pigs In Space for some strange reason. Like you could compare Star Trek (the real deal) to anything else pretending to be it without laughing out loud. Still if it helped these undefined teenagers get back to school and to a better level of health - then so be it. But do stop messing and try this approach on some properly defined cohorts please :rolleyes:
 

alex3619

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Hmmm, first create a therapy that is designed to fail, a strawman. THEN compare your favourite therapy to it.

For the PACE trial they created Adaptive Pacing, which is their own highly dubious technique with a similar name to pacing.

Here they used standard medical care, which was therapy and exercise. Say what? This is the usual care you would pick if you wanted to make them WORSE.

I wonder if my interpretation is wrong? This would clearly make this study a breach of ethics, which means the ethics review failed amongst other things. However the same argument could be made against the PACE trial and almost nobody cares.

I am getting a distinct impression, which may be wrong as I don't know all the facts, that they know exercise fails. This is a step back to CBT. I wonder if this is what is happening generally?

A quote from one of the articles (medpage today):"Usual care, which included CBT in person (66%), individual or group rehabilitation programs (22%), or graded exercise therapy (49%)"

I would like to see a breakdown of responses from patients with every combination of treatments used.
 

Firestormm

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http://www.medpagetoday.com/PainManagement/PainManagement/31423

'...Peter D. White, MD, of St. Bartholomew's Hospital in London, and Trudie Chalder, PhD, of King's College London, in an accompanying commentary...

They said that advantages of FITNET were its systemic approach and complex and frequent interventions. However, they pointed out that the researchers used a liberal definition of recovery, and that some individuals in the study were already attending school fairly frequently.'

Lol. Lol. Lol. Lol. Pigs in Spaaaaccccceeeee!! :D
 

snowathlete

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Also what treatment did these kids have first before the trial were they doing GET - which as we know would hold them back from recovery. Maybe the improvement was a result of dropping GET. Who knows but even those commenting on the study say that some of the results look odd. If part of the results look odd then the rest come into question. Ignoring the fact it's CBT for a minute, the stats look way way too good to be true. As someone who works heavily in statistics, it looks well dodgy to me...
 
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I haven't been able to access the full text, but here are a few comments:

First off, the results appear to be exceptionally good, certainly compared with PACE:

- Self-reported normal physical function rates were 3.8-times higher with the intervention as well 78% versus 20%, P<0.0001

- Full-time school attendance (missing less than 10% of school days): 75% versus 16%, P<0.0001.

- Numbers needed to treat for all the outcomes were in the 1.7 to 2 range (PACE 7-8)

- 63% of patients reporting full recovery compared with just 8% with usual care

They used Fukuda for case definition.[1]
http://www.biomedcentral.com/1471-2377/11/23

Second, the results for the control group seem exceptionally poor, for a group of adolescents (who usually have a better prognosis than adults) who had been ill for only 2 years (think that's right, can't remember where I read that).

Particularly as the control group used CBT/GET (medpage today) "Usual care, which included CBT in person (66%), individual or group rehabilitation programs (22%), or graded exercise therapy (49%)". And as the authors state "Cognitive Behavioural Therapy (CBT) has proven to be effective".Professor Anthony Cleare, a consultant psychiatrist at the Institute of Psychiatry, Kings College London, said that although the effectiveness of cognitive behavioural therapy for chronic fatigue syndrome was beyond doubt. So why such poor results?

Also:

Medpage: Peter White and Trudie Chalder... pointed out that the researchers used a liberal definition of recovery, and that some individuals in the study were already attending school fairly frequently.'
So were the therapy group attending school more frequently than controls at baseline?

Rosanne Coutts, an Accredited Exercise Physiologist and Lecturer in Sport and Exercise Psychology at Southern Cross University, said...The study also relied on self-report, however even with consideration for some self-reporting bias the school attendance is a clear indicator of levels of recovery. Previous studies report a good prognosis for adolescents and this study again supports this.
Nice to see recognition of the problems of self-report, and the need for more objective measures such as school attendance. However, the poor results for contols fail to fit with the good prognosis for adolescents reported in other studies.
 

Firestormm

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Here's the Lancet's Press Statement: http://www.meassociation.org.uk/?p=10606

Just for additional material. Some of it/much of it is repeated elsewhere of course.

Dr Shepherd is equally astounded by the claimed results:

Dr Charles Shepherd, honorary medical adviser to the ME Association, says:

I find it hard to believe that an internet-delivered cognitive behaviour therapy (CBT) programme can produce a 63% recovery rate over a six month period even if those involved were very carefully selected.

The success rate is far in excess of any other published clinical trial involving the use of any form of CBT in ME/CFS and is not consistent with the results from several large patient surveys carried out in the UK, the largest of which* found that only 2.8% were greatly improved whereas 54.6% reported no change in their condition. (19.5% reported being slightly worse or much worse total number = 997).

It should also be noted that a wide variety of clinical presentations and pathologies come under the ME/CFS umbrella and that while CBT may be of help to some people with this diagnosis it is not an appropriate or effective form of treatment for others.

http://www.meassociation.org.uk/?p=10608
 

Firestormm

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Web MD have just put something up too: http://www.webmd.com/chronic-fatigu...apy-helps-teens-with-chronic-fatigue-syndrome

'...researcher Sanne L. Nijhof, MD, of the University Medical Center Utrecht in the Netherlands, says teens may be particularly responsive to web-based behavioral treatments because they have grown up using the Internet.

Most teens eat, sleep, and breathe the Internet, so it is not terribly surprising that they would embrace a therapy delivered in this way, she says.
Shortage of Trained CFS Therapists

Chronic fatigue syndrome is a complex condition characterized by intense, unrelenting fatigue, combined with other symptoms that can include muscle or joint pain, lymph node tenderness, and headache.

The condition is much less common in teens than adults, but by some estimates as many as 1 in 100 adolescents suffers from it.

While the cause of CFS is not known, talk therapy has been shown to be effective for relieving symptoms in both adults and teens.

But a shortage of specialized behavioral therapists qualified to deliver the treatment has limited its use...

'...What is exciting about this trial is that these researchers have made the delivery of an effective treatment for CFS more convenient, more accessible, and possibly more cost-effective, says longtime chronic fatigue researcher Peter D. White, MD, of St. Bartholomews and the London School of Medicine and Dentistry.

White tells WebMD that the greater accessibility and more frequent interaction with therapists may explain the better results for Internet-delivered treatment.

Patients sent their therapists an average of 66 emails over the course of treatment, and therapists sent an average 29 email consults per patient.

He adds that if greater accessibility improves outcomes, an Internet-based treatment strategy may be as effective in adults as it is in teens.

It is important to repeat this study in adults, he says.'

Oh joy! :thumbsup:
 

Firestormm

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Action for ME comment: http://www.actionforme.org.uk/get-informed/news/our-news/action-for-me-comment-on-new-cbt-study

'Sir Peter Spencer, Chief Executive, Action for M.E., says: "FITNET appears to have shown up well in this trial but we would not agree that it puts effective treatment within reach of any adolescent as is claimed. It is good news for some but should not be exaggerated. CBT is not a miracle cure even when delivered online.

"We do strongly agree with the emphasis on the need for proper and rapid diagnosis in adolescents. The teenagers who took part in this study had to rate themselves as being completely recovered or as feeling much better. Action for M.E. welcomes research that values patient-reported outcomes alongside fatigue severity and physical functioning scores.

"Empirical research into therapies has merit but it is no substitute for the more fundamental research that is urgently needed into the biology of M.E. Only this will establish the cause of the condition and help us to find much more effective treatments."'

Errr... I appreciate this is becoming (due in part to moi) more media than research thread. Shall I request a split into two threads perhaps?
 

Holmsey

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Is it only the 1st of March, I thought it must be April, what a fool I am.

As per usual we have the controversey of selection, were they or wern't they ill in the same sense we hold ourselves to be, strikes me we'll continue to go around in circles with this until one or more difnitive tests, at a price the NHS are willing to pay, come in to play. Until then the Psyc's are always going to muddy the watters and self reporting will be the rule.

But, just to cheer you all up, back in the early days of my involvement with this site, as some may recall, I was direcly mailing Mr. Wesseley, that began when I along with countless others were prompted to mail him directly to critisize his immediate dismissal of the XMRV resutls from WP.

During that chain of mails I asked him directly why, in the absence of contrary evidence he would immediatly critisize the results, to which he replied, the results were to astounding, that any good scientist would treat with sceptisism such dramatic statistics. The statistic in question was that 67% of ME/CFS patients were testing positive for XMRV.

Well, I'm with Simon on this one, that 'recovery' rate is just way to high to be taken seriously but then Simon is probably saying the same thing because if it's right then we can sack all the Psyc's and therapists and tell GP's just to send their patients down to PC World with an NHS chitty.

Health services accross the world should be oppening their own studies to see if talking by internet can cure all manner or expesive illnesses.

What a load of tosh, I can't get my head around why anyone of any scientific integrity would even entertain this!

I did 13 sessions of CBT under my empolyers health scheme, during session 2 we went over my illness history then I was asked what I wanted to get out of the sessions, to set my goals as it were, straight faced I just looked at the therapist and said, 'I want to be cured'. I then picked her up off the floor and used smelling salts to get her back in the room, once conscious she in no uncertain terms told me that she wouldn't be able to do that.

All credit to her, money or no money she wasn't going to be miss sold and made out a liar, she really did help with some very usefull advice on coping and never for a moment pretended she'd be able to do more. She'd been a therapist for over 25 years and came highly recommended by my employer, and you'll like this, a leading US based, international Health Insurer.
 
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Did they report baseline school attendance? In previous trials, there have been significant variance in school attendance or employment status in each group and so the change must be compared, rather than merely one group vs the other.

Also consider self-selection bias for participation in the trial in the first place.
 
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Thanks to user 9876 for the link to full text

Physical activity was measured by the Child Health Questionnaire (CHQ-CF87 subscale physical functioning):

Has it been difficult for you to do the following activities due to health problems:

- doing things that take a lot of energy, such as playing soccer or running;
- doing things that take some energy such as riding a bike or skating;
- walk several blocks or climb several flights of stairs;
- ability (physically) to get around the neighborhood, playground, or school;
- walk one block or climbing one flight of stairs; do your tasks around the house;
- bend, lift or stoop; eat,
- dress, bathe or go to the toilet by yourself;
- get in/out of bed?
This broadly similar to the SF-36 Physical Functioning sub-scale, though it merges walking/stairclimbing, and has the extra questions in italics. This is all I could find on scoring: "Response options also vary from 4-6 levels for the scales"
 

user9876

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Did they report baseline school attendance? In previous trials, there have been significant variance in school attendance or employment status in each group and so the change must be compared, rather than merely one group vs the other.

Also consider self-selection bias for participation in the trial in the first place.

School attendance
[table="width: 500"]
[tr]
[td] [/td]
[td]FITNES n=68[/td]
[td]Usual Care n=67[/td]
[/tr]
[tr]
[td] Continious [/td]
[td] 395% (294)[/td]
[td] 451% (326) [/td]
[/tr]
[tr]
[td]?85% [/td]
[td]4 (6%) [/td]
[td]9 (13%)[/td]
[/tr]
[tr]
[td]<85% [/td]
[td]64 (94%) [/td]
[td]58 (87%)[/td]
[/tr]
[/table]
I would read this as the first row suggesting the % of time spend at school with the standard deviation. The next are those greater or less than 85%. What they don't seem to give is how many were not able to attend school (it may be buried in the text).

In terms of there and the control groups results after 12 monts 10 from the control group attend >90% of school (hard to compare with the 9 at >95%). However for their FITNET treatment group they claim 50 of the 67 attended school full time. Some of the figures particularly in table 4 seem inconsistant the table caption says 12 months but some of the headings say 6 months.
 

taniaaust1

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I'd love to see clear figures of how many of each group and if they were going to school full time in the first place.

The one good thing (probably only good thing lol) I saw about this study was the fact they judged improvement based on something the participants actually started doing eg full time school rather then it just being subjective.

Usual care, which included CBT in person (66%), individual or group rehabilitation programs (22%), or graded exercise therapy (49%)

At six months, when the FITNET program was nearly finished for the average participant, the primary outcomes all favored the intervention.

Missing less than 10% of school days was 4.8-fold more likely with the intervention than with usual care (75% versus 16%, P<0.0001).
As was said and others mentioned.. the usual care.. 50% of those in the usual care group were doing GET, so is it surprising that this group who got their therapy from home and not doing GET improved more then the other group? (even if bad diagnostic criteria were used). Most of us are aware GET isnt good for many.

My other thought is on why maybe this group CBT only group improved???.

I think that probably these ones were previously doing GET (normal care) before this study started.... and hence with the stoppage of "normal care" and GET.. well yeah.. many improved esp since they were early CFS cases (of just under 2 years and still having a fair chance of recovery). Previous GET was probably holding some back from improving. (that's going to be my theory till I know otherwise).

CBT I personally think could be good if they knew how to teach it right.. (in not over doing it.. eg you arent lazy and need to look after your body and energy etc etc). Id love to know what these children were actually being told in this CBT were they taught to be kind to theirselves and pace well so not in that constant push crash cycle so much which ends up affecting many of us and making us worst early ME/CFS??
 

user9876

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taniaaust1
Id love to know what these children were actually being told in this CBT were they taught to be kind to theirselves and pace well so not in that constant push crash cycle so much which ends up affecting many of us and making us worst early ME/CFS??
Not really an answer but these are the CBT module titles

Cognitive Behavioural Treatment Modules
1. To introduce myself
2. How does this treatment work?
3. Assessing my present possibilities
4. My parents
5. My goals
6. My sleep routine
7. My thoughts
8. Changing my attention to fatigue
9. Step up my physical activities (passive patients)
10. Balance between activity and rest (relative active
patients)
11. Step up my physical activities (relative active
patients)
12. Recognizable problems with the treatment
13. Step up my mental activities
14. My schedule for school
15. My social activities
16. To reach goals
17. My schedule for work
18. To have a night out
19. Do I still see myself as a patient with CFS?
20. My evaluation
21. Follow-up