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Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

Cheshire

Senior Member
Messages
1,129
OK, I see. Not quite the same though.


Where was the page you copied? The links in your post take me straight to the NICE guidance home page, which is not ME specific.

https://www.nice.org.uk/guidance

How weird, this link doesn't bring me back to the page I was on... So I googled part of the text that brought me back to that exact same page:http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Diagnosis.aspx whose link doesn't work...

Edit: it works for me now. :confused:
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
One thing that does encourage me about this stuff is that CBT is getting increasingly more computer based and less intrusive, clearly as part of cost cutting measures, which makes it easier to disregard and ignore if it goes wrong.

....actually, my first thought was THESE PEOPLE CAN COME INTO YOUR HOME NOW. Can you imagine being a kid and having this indoctrination happen in your living room a few days a week? There is nowhere you'd feel safe anymore.

What it seems to me is that they're getting into more and more vulnerable patient populations. It's around that CBT and GET are harmful to patients, but if you get them young enough, they won't be able to put up a fight: they're more likely to agree to whatever an authority figure tells them is the case.

Moreover, you've got their parents between a rock and a hard place. A computer program would make GET and CBT so universally available that you as a parent could no longer say you're too far out in the boonies to take your kid to therapy: it can come to you through your computer. And if you refuse, you're clearly an abuser with Munchhausen by Proxy.

Just sick.

I feel that things won't improve until publishers are held to account and can be sued for harm done in papers that they publish that are not adequately checked. Harm could also be money spent on worthless treatments rather than being put to a good use.

My only concern here is that this would make publishers even more reluctant to publish studies that run counter to the current zeitgeist than they already are.


-J
 

worldbackwards

Senior Member
Messages
2,051
....actually, my first thought was THESE PEOPLE CAN COME INTO YOUR HOME NOW. Can you imagine being a kid and having this indoctrination happen in your living room a few days a week? There is nowhere you'd feel safe anymore.

What it seems to me is that they're getting into more and more vulnerable patient populations. It's around that CBT and GET are harmful to patients, but if you get them young enough, they won't be able to put up a fight: they're more likely to agree to whatever an authority figure tells them is the case.

Moreover, you've got their parents between a rock and a hard place. A computer program would make GET and CBT so universally available that you as a parent could no longer say you're too far out in the boonies to take your kid to therapy: it can come to you through your computer. And if you refuse, you're clearly an abuser with Munchhausen by Proxy.
Yes, I can see all that, but...

The way ME "treatment" works in the UK tends to be that you get entangled with actual people, some of whom become distinctly difficult to shake off. I can see the prospect of a computer programme spreading treatment in this way has a distinctly unnerving element, but given the way that things are prescribed in this country, I can see this likely becoming the first thing doctors throw out there to get patients out of the door so as to hopefully never see them again, rather than anything that gets people near a "specialist" team, the likes of which may well start to dwindle given that results are likely to be pretty shabby either way.

This is important. Actual people can put you under pressure (and I can assure you, if they want to get into your home, they will do anyway). If symptoms are getting in the way of undertaking the programme, actual people will argue the point out, usually with accusations and sulks. A computer programme that talks bollocks however can, and will, be turned off.

The key thing about psychiatry, both good and bad, is the relationship with the therapist. Computer CBT is a ridiculous fad because it thinks it can dispense with this and it's already being called out as such. Patients with depression and anxiety who benefited to a large degree from seeing a friendly face are now faced with the ultimate expression of the health system's indifference to them and it doesn't go down well. However, in our sphere, this is a stroke of luck - indifference and neglect is the best we can hope for until something changes. God forbid someone should take an interest.

If the alternative is that, eventually, the likes of White prevail in getting CBT/GET rolled out with practitioners across the country, getting in peoples faces and not taking no for an answer, I say: bring on the computers. At least they have an off switch.
 
Messages
3,263
Did you see the long list of names under co-investigators - that's why
How can all these people possibly be involved in this one small study? Perhaps each person will analyse one data point each, and write one sentence, then it will all be cobbled together into a collage at the end? Exactly how many BPS investigators does it take to change a lightbulb?

Perhaps Crawley will change the lightbulb all on her own, but the rest of the team will be there to praise her and to share in the credit. :confused:
 
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Chrisb

Senior Member
Messages
1,051
The document posted claims to be the "plain English summary". Is there somewhere publically viewable a full document which might explain some of the anomalies which have been noted? The definition of ME/CFS seems bizarre, bearing little relation to any preexisting definition.

One would have to think the funding agency negligent if they provided funding for a study based on no accepted clearly defined group, if the purpose of the study were not to ascertain some such group in a clearly described manner.

How reassuring it is to see that the Public (healthy teenagers) have assisted in the design of the study. I am sure they will have a thorough understanding of the problems imposed by this illness and be able to advise accordingly.
 

A.B.

Senior Member
Messages
3,780
It's striking that, having defined Oxford, even that seems to be no longer good enough for them. What next? A yawn? A bad night? Does everyone have ME?

The next explanation:

Everyone is tired. Everyone has ME. The difference between patients and normal people is that patients are just mismanaging their cognition/childhood difficulties/underlying depression bla bla bla QUACK QUACK QUACK.

This is satire, just to make sure nobody misunderstands.
 

Deepwater

Senior Member
Messages
208
The document posted claims to be the "plain English summary". Is there somewhere publically viewable a full document which might explain some of the anomalies which have been noted? The definition of ME/CFS seems bizarre, bearing little relation to any preexisting definition.

One would have to think the funding agency negligent if they provided funding for a study based on no accepted clearly defined group, if the purpose of the study were not to ascertain some such group in a clearly described manner.

How reassuring it is to see that the Public (healthy teenagers) have assisted in the design of the study. I am sure they will have a thorough understanding of the problems imposed by this illness and be able to advise accordingly.

Could there also be a concern about commercial conflicts of interest? I'm sure I saw when I first looked that a particular games console was to be used - X Box? - but I can't seem to find this now. The first thing that struck me was we need to be really sure there is no funding coming from Sony, even via the back door, because you can just see how they would love their products being approved as medically good for children.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Could there also be a concern about commercial conflicts of interest? I'm sure I saw when I first looked that a particular games console was to be used - X Box? - but I can't seem to find this now. The first thing that struck me was we need to be really sure there is no funding coming from Sony, even via the back door, because you can just see how they would love their products being approved as medically good for children.
You might be thinking of the other ridiculous study that aims to cure CFS with a gaming console?

Active video gaming to increase physical activity in adults with chronic fatigue syndrome
http://forums.phoenixrising.me/inde...rial-of-video-gaming-treatment-for-cfs.44990/
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
FITNET:
Trial Registry said:
Those who get FITNET-NHS (and their parents) will be given information and then work through 21 interactive CBT modules. Children will be asked to do homework (answer questions and complete diaries). CBT-trained therapists will make weekly appointments with children and their parents to review homework and support behaviour change.
The FITNET-NHS intervention delivers specialist cognitive behavioural therapy (CBT) for CFS/ME via the internet. Participants and their parents work through 21 interactive modules and have weekly e-consultations with therapists.

Activity Management Control Group:
Trial Registry said:
Those who get Activity Management will receive information on managing activities and sleep. They will have three Skype calls (one assessment and two follow up) with CFS specialist occupational therapist (OT)s to understand and provide advice on sleep and activity. The specialist OT will hand over care to the local GP or paediatrician but will provide support to them with up to three phone calls.
ACTIVITY MANAGEMENT: Behavioural intervention delivered by specialist occupational therapists who provide 3 Skype calls for participants and then support local providers delivering care (maximum 3 phone calls)

So FITNET participants will receive weekly appointments for e-support from a trained therapist. I'm not sure how long this weekly support continues for. A year?

And the activity management control group will receive a grand total of two appointments for e-support from a trained therapist (plus one initial e-assessment appointment), and otherwise left to muddle through on their own with 'support' (Ha!) from their local GP.

How does this stuff get approval?

(I know this had been mentioned before in this thread. I've just been studying the details.)
 

worldbackwards

Senior Member
Messages
2,051
So FITNET participants will receive weekly appointments for e-support from a trained therapist. I'm not sure how long this weekly support continues for. A year?
That won't happen in the real world. They can't get funding to string things out for more than a month or two usually.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@tinacarroll27

Perhaps you might want to create a new thread to highlight your petition. And as always--I'm not sure--can this be signed by anyone or is it just for UK residents?

To whom is the petition to be presented? Sorry if it's in the text--I did look it over but didn't see anything as answer.