Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

[Snow Leopard]

How convenient that the comments are disabled. At least the title isn't as much of a travesty as the BBC's.

Well the Dutch study had a null result in terms of "recovery", so I'd say it is just as much of a travesty!

 

[slysaint]

These 700 children and young people are being courageous enough to try something new

How is it NEW?
This publicity seems to also be a recruitment drive.
EC and AYME have clearly been coached to mention 'biology/biological' as much as possible.
Where are the test results to show that CBT altered cortisol levels? (as EC Claims), (mind you a cup of Redbush tea would also lower cortisol and just reading ECs remarks has probably raised mine today).
I would like to see her in a real debate with a genuine scientist.

 

[Hip]

You meant the 8% recovery must be wrong?

No, I meant the "63% recover within six months" must be wrong. There is no way that an website-based therapy is going to produce a 63% recovery rate, unless you are defining "recovery" to mean something other than its normal dictionary meaning (which is what they often do in these psychological studies: you find they redefine the term "recovery" to mean something different to the normal use of that word).

Or unless there are non-ME/CFS patients in the study cohort, due to sloppy inclusion criteria in the study.

 

[Countrygirl]

Please has anyone got the full text of
Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial
Dr Press enter key to Email the author
,
Prof Gijs Bleijenberg, PhD
,
Cuno SPM Uiterwaal, PhD
,
Prof Jan LL Kimpen, PhD
,
Elise M van de Putte, PhD

It is hidden behind a paywall.

Thanks

 

[Cheshire]

Where are the test results to show that CBT altered cortisol levels? (as EC Claims).

Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome.

CONCLUSIONS:
Hypocortisolism in CFS is potentially reversible by CBT. Given previous suggestions that lowered cortisol may be a maintaining factor in CFS, CBT offers a potential way to address this.

https://www.ncbi.nlm.nih.gov/pubmed/18937978

Edit: a few comments here:
http://forums.phoenixrising.me/inde...ring-immune-response.21372/page-3#post-327223

 

[UKmum]

Something has occurred to me. I'm not sure whether anyone has pointed it out. If so, apologies, I'm fast losing track of everything in here.

If the Usual care group are doing so badly compared with the FITNET group, and most of them had clinic based CBT, GET etc, then this is a damning critique of the dire results from these clinics and they should all be closed down immediately.

By contrast, allowing the kids to rest at home and not need to turn up and be harangued at a clinic every week, instead doing a bit of on-line stuff that's probably much less demanding, they improve faster.

Add this to my previous post, showing how useless the British fatigue clinics are, and there's a hugely strong case for closing the lot.

Given NHS funding cuts, I can see that happening anyway, with 'fatigue' coming low on the list of mental health funding priorities, and I predict the'll all be closed within a couple of years.

Now all we have to do is get FITNET abandoned too, and give GP's good guidelines on proper diagnosis and pacing....

I actually think that something like the FITNET approach will bring the end of the fatigue clinics. Although it is called CBT an awful lot of it is also education for parents and children about living with CFS/ME and balancing activity and rest/sleep hygiene. Most of my sons visits to the "specialist" are by SKYPE anyway so this is just one step further away and can be done without appointment- less staffing for NHS

Although I hate the fact that this is all we are spending money on in the UK and I know it will not cure people I do think it might help some families in the early stages of coping with and managing this illness. Referral to the specialist centres takes months after the initial round of GP's Paediatricians and CAHMS waiting lists. Though I guess that would still have to happen. I think a lot of people will take this up because sadly its all we've got and at that crucial educational age of 14-18 any increases in activity levels and therefore access to education is going to be welcomed even if the results level out in the longer term.

Pity the UK parents of children with CFS/ME- we have all been bombarded over the last 24 hours with well meaning friends/family/colleagues telling us the exciting news....

 

[slysaint]

Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome.

CONCLUSIONS:
Hypocortisolism in CFS is potentially reversible by CBT. Given previous suggestions that lowered cortisol may be a maintaining factor in CFS, CBT offers a potential way to address this.

https://www.ncbi.nlm.nih.gov/pubmed/18937978

Edit: a few comments here:
http://forums.phoenixrising.me/inde...ring-immune-response.21372/page-3#post-327223

OK but this testing wasn't done as part of the trial?
Exercise will also increase cortisol production.
Has this CBT approach been tested on other illnesses that have Hypocortisolism ?
Is it reversed permanently?
going to leave it there.

 

[A.B.]

Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome.

CONCLUSIONS:
Hypocortisolism in CFS is potentially reversible by CBT. Given previous suggestions that lowered cortisol may be a maintaining factor in CFS, CBT offers a potential way to address this.

https://www.ncbi.nlm.nih.gov/pubmed/18937978

Edit: a few comments here:
http://forums.phoenixrising.me/inde...ring-immune-response.21372/page-3#post-327223

No control group.

 

[Cheshire]

OK but this testing wasn't done as part of the trial?
Exercise will also increase cortisol production.
Has this CBT approach been tested on other illnesses that have Hypocortisolism ?
Is it reversed permanently?
going to leave it there.

I didn't posted it as a proof that what they claim is true, this paper suffers from the usual flaws (no control group etc...).
But I guess it's what Crawley relies upon.

 

[Large Donner]

AYME and Professor Crawley are very clear on our position: we do think that M.E./CFS is a biological condition and much research needs to be done to determine the exact cause and treatment. We do not support the hypothesis that M.E./CFS is a psychological disorder. However, a complete understanding of M.E./CFS may be decades away - and we cannot allow nothing to be done for children and young people with M.E./CFS in the meantime.

There are no current treatments available so we will push the disproven ones from the PACE study and not only that we hope we can get away with this for decades using up all the research funds that we should be spending on biomedical research cos there's no biomedical research that has provided treatment options cos we keep taking the money for disproven quackery.

CBT actually has a beneficial biological effect; it's a holistic supportive treatment which can aid recovery and is used for a variety of physiological illnesses with good results.

We are keeping the data and the evidence for this safely tucked up inside our backsides whilst we continue to make such claims.

Things like improving sleep habits and pacing daily activities can actually support your body to aid it in recovery from a variety of illnesses.

Despite us supporting the PACE study claims that pacing does not work we are now playing a duplicitous game and saying it does when it suits us. As far as sleep habits goes we will not be defining it just incase anyone realises we are hedging our bets and admitting that pacing and rest are tactics that patients have long used to manage their condition whilst we as the experts have said for decades these strategies don't work.

CBT treatment is not a one-size-fits-all solution.

Correct its a solution that proved zero efficacy in the PACE trial. Therefore its best described as a one size fits zero solution.

What we can offer to children and young people with ME/CFS is help to try and improve their quality of life. For some this is enough

Afteral they dont deserve much more and on top of that "Children want GET".

they see a great result and consider themselves recovered.

We see a great opportunity to declare them recovered.

For others, it can simply help them get to school a little more often or enjoy more time with friends and family.

Failing that we can rediagnose them with Pervasive Refusal Syndrome usually this is enough for them to see a great result and consider themselves recovered.

 

[AndyPR]

Statement from MEAction UK

#MEAction Denounces Use of CBT in Treatment for Chronic Fatigue Syndrome

Patients with ME/CFS Urge NHS to Adopt Scientifically-Sound Approaches to Treatment

Study Finds No Difference in Treatment for ME/CFS Patients At Long-Term Follow-Up

According to reports in The Guardian and BBC yesterday, hundreds of young patients in the UK suffering from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are set to receive online psychological therapy. FITNET will cost £1million, to be funded by British taxpayers — yet the Dutch study on which the trial is based found no difference in patients at long-term follow-up.

#MEAction, an international network of ME patients, along with other patient groups and scientists from around the world, condemn the waste of resources on such inherently flawed studies. Arguing that an intervention that consistently shows null results at long-term follow-up is not worth pursuing further.

The proposed study – known as ‘FITNET’ – shares many flaws with the debunked PACE trial, which was described as “the height of clinical trial amateurism” by Dr. Bruce Levin of Columbia University. It was subsequently discovered that scientists misrepresented the efficacy of cognitive behaviour therapy and graded exercise therapy in ME patients — but only after a protracted battle to obtain the open-sourced data.

http://www.meaction.net/2016/11/02/...bt-in-treatment-for-chronic-fatigue-syndrome/

 

[Effi]

Please has anyone got the full text of

http://dx.doi.org.sci-hub.cc/10.1016/S0140-6736(12)60025-7

@Countrygirl

 

[chipmunk1]

What will the new CBT trial be called?

Let me guess:

STUPID

Somatisation Treatment for Unhappy Patient's Internal Distress

 

[chipmunk1]

No control group.

Who needs control groups when you're out of control?

 

[Snowdrop]

Julia Newton speaking in the Action for ME piece "Nor should the inclusion of a psychological therapy in the trial be taken as evidence that M.E. is psychological in origin. It is not."

Nobody claims that it is psychological in origin. This is a diversion from the real issue of perpetuation and is trotted out again and again.

ETA: after rereading not sure the attribution should go to JN as opposed to whoever wrote the piece.

 

[Molly98]

What will the new CBT trial be called?

Let me guess:

STUPID

Somatisation Treatment for Unhappy Patient's Internal Distress

Brilliant

 

[Snowdrop]

Statement from MEAction UK



http://www.meaction.net/2016/11/02/...bt-in-treatment-for-chronic-fatigue-syndrome/

When responding to the never ending misinformation around CBT/GET I think it would be good to move away from just an explanation of why it's not useful to an explanation that this model and it's supporters while they state that they are presently the only game in town even if other treatments were found effective they will never replace CBT/GET in the UK because the issue is about what is perpetuating the illness and that no research from other countries is being viewed as relevant to UK understanding of the illness.

 

[Esther12]

Julia Newton speaking in the Action for ME piece "Nor should the inclusion of a psychological therapy in the trial be taken as evidence that M.E. is psychological in origin. It is not."

Nobody claims that it is psychological in origin. This is a diversion from the real issue of perpetuation and is trotted out again and again.

Yeah - that was annoying. It's like they're doing all they can to play in to lazy prejudices about patient's concerns.

It seems more like AfME is leading to Newton being worse, rather than Newton getting AfME to be better!

 

[trishrhymes]

Good to see Invest in ME Research taking a much clearer line. From their latest email newsletter:

"However, after the recent orchestrated, biased and misleading headlines relating to the PACE Trial II on children - encouraged by the Science Media Centre and establishment media organisations such as the BBC [2] - then we feel a new approach is required."

They are taking action by trying to meet with the Chief Medical officer.

Details at:
http://www.investinme.org/IIME-Newslet-1611-01.htm

 

[Countrygirl]

Good to see Invest in ME Research taking a much clearer line. From their latest email newsletter:

"However, after the recent orchestrated, biased and misleading headlines relating to the PACE Trial II on children - encouraged by the Science Media Centre and establishment media organisations such as the BBC [2] - then we feel a new approach is required."

They are taking action by trying to meet with the Chief Medical officer.

Details at:
http://www.investinme.org/IIME-Newslet-1611-01.htm

Thank God for IiME. The voice of integrity and reason in the UK.