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FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review
Simin Ghatineh and Mark Vink

Abstract
The Dutch Fatigue In Teenagers on the interNET (FITNET) study claimed that after 6 months, internet based cognitive behaviour therapy in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), led to a 63% recovery rate compared to 8% after usual care, and that this was maintained at long term follow up (LTFU). Our reanalysis shows that their post-hoc definition of recovery included the severely ill, the unblinded trial had no adequate control group and it used lax selection criteria as well as outcomes assessed via questionnaires rather than objective outcomes, further contributing to exaggerated recovery figures. Their decision not to publish the actometer results might suggest that these did not back their recovery claims.

Despite these bias creating methodological faults, the trial still found no significant difference in recovery rates (“~60%”) at LTFU, the trial’s primary goal. This is similar to or worse than the documented 54–94% spontaneous recovery rates within 3–4 years, suggesting that both FITNET and usual care (consisting of cognitive behaviour and graded exercise therapies) are ineffective and might even impede natural recovery in adolescents with ME/CFS. This has implications for the upcoming costly NHS FITNET trial which is a blueprint of the Dutch study, exposing it to similar biases.
Full text available at http://www.mdpi.com/2076-328X/7/3/52
 
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2,158
Excellent. Thank you @Mark Vink .

@charles shepherd can this be pointed out to NICE? And to the NHS who are funding the British trial on the basis of a false claim that the Dutch study was a success. It would be brilliant if the Crawley trial could be halted on the basis of this paper, but I guess that's too much to hope.

Edit to add. Thanks also to @docsimsim . I apologise for not realising you were also a member of PR, so could be thanked here.
 
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Messages
71
Location
London, UK
Excellent. Thank you @Mark Vink .

@charles shepherd can this be pointed out to NICE? And to the NHS who are funding the British trial on the basis of a false claim that the Dutch study was a success. It would be brilliant if the Crawley trial could be halted on the basis of this paper, but I guess that's too much to hope.
Erm and me, I am co author. Thank you!
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
I had not picked up where the 63% and 8% actually came from when Dr Crawley quoted these as what the trial she was about to do was bound to confirm.

The whole sham business of these adolescent studies is totally unethical. I have not written that down before but I do now.

It also highlights the arrogance of people like Macleod who ridicule patient researchers.
 
Messages
71
Location
London, UK
No need to apologise. I'm often too unwell to post on here but very grateful to see this review shared here. As you know, as we speak £1 million of NHS funds is being spent to replicate a trial which has so many flaws it should never have gone ahead, let alone be replicated. It's just easy money for a group of anti science psychs :(
Regards
Sincere and humble apologies, @docsimsim . I only mentioned Mark Vink because I recognised his name as a member of PR. I did not realise you were a member too. Thank you for your brilliant work on this paper.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
As a mother of an adolescent with ME I sincerely thank you both for your dedicated hard work. Unfortunately this age group tends to have an inordinate focus on it being " in your head". CBT seems to be deployed in much the same way as UK continues to have French as the main second language taught at school - not because it is of any particular use, but because we have a lot if teachers trained to teach it.
 

Dolphin

Senior Member
Messages
17,567
I'm reading this now. It makes a lot of good points. Thanks to the authors for the effort that they put in.

One small correction I have just come across:
“Physical functioning (Child Health Questionnaire) score <85” (out of 100) [11] (p. 3).

A score of 83 (out of 100) denotes a “good outcome, as it represents the ability to carry out moderate activities (e.g., carrying purchases, moving furniture)” [47] (p. 2039), so that patients with scores of 80 to 85, were already well on the way to recovery and only mildly affected, yet they were still ill enough to enter the FITNET trial.

As noted above, a score of 83 (out of 100) “represents the ability to carry out moderate activities (e.g., carrying purchases, moving furniture)” [47] (p. 2039)

47. Deale, A.; Husain, K.; Chalder, T.; Wessely, S. Long-term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: A 5-year follow-up study. Am. J. Psychiatry 2001,158, 2038–2042. [CrossRef] [PubMed]

Reference 47 refers to the SF-36 physical functioning subscale. That is not the same as the Physical functioning (Child Health Questionnaire).



The former has 10 questions, the latter nine:
https://www.healthactchq.com/survey/chq


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?
 
Messages
2,391
Location
UK
There are those who take the view that belief in one’s improvement is as good/same as actual improvement.
Hmm, I wonder who they might be then. Belief in one's improvement at best means supportive CBT may have helped. "Same as actual improvement" ... !!!