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

[Woolie]

It strikes me as CBT is just the latest fad and is infiltrating everything everywhere but is often regarded as ineffective and like putting a sticky plaster over a wound in therapy circles of people who work with both children and adults with emotional difficulties as 95% of our behaviour is unconscious.

I tend to agree with @Molly98. A great deal of CBT focuses on "cognitions" (I suspect because of course the emotions that are really driving the problem are often inaccessible). So fear and anxiety are reframed as "worrying thoughts" and negative mood as "rumination on negative themes". Then you can train the person to divert the negative thoughts.

I don't buy it. I think anxiety is driven by emotion, pure and simple. Worrying thoughts may add a little to the picture, but they are not the way to a cure. Ditto for depression. Its emotion, not "unhelpful cognitions". They may add to the all round negative experience, but stopping them won't fix the problem.

 

[trishrhymes]

Not sure where to post this, but useful to see that Prof Crawley has authored an assessment of the effectiveness of the fatigue clinics with Prof Peter White.

Note they conclude that CBT and GET at the clinics is about as effective as PACE, although reduction in physical functioning is less. (In other words then the clinics have failed to help patients.)

This came out in 2013: http://qjmed.oxfordjournals.org/content/qjmed/106/6/555.full.pdf

It's a pretty damning study of the NHS clinics, which is probably why they don't shout about it.

 

[BurnA]

When other countries find a bio marker and get treatment, will the UK still be in denial? How will they be able to keep this up in the face of the truth? Can you imagine a day when the USA and other international countries have drug treatment and the UK is still getting CBT/GET!! They would look like idiots or monsters!!

This is what I wonder too. Hopefully we will have a breakthrough announcement within a year or two. Then what happens to all these CBT and GET studies and quacks - they will look so stupid but so doubt they will never stop. They will just spin it another way.

It makes AfMEs statement so awful, if they really cared they would be supporting only biomedical research. In fact what about the CMRC - how can they support this and MEGA at the same time ?

 

[chipmunk1]

I tend to agree with @Molly98. A great deal of CBT focuses on "cognitions" (I suspect because of course the emotions that are really driving the problem are often inaccessible). So fear and anxiety are reframed as "worrying thoughts" and negative mood as "rumination on negative themes". Then you can train the person to divert the negative thoughts.

I don't buy it. I think anxiety is driven by emotion, pure and simple. Worrying thoughts may add a little to the picture, but they are not the way to a cure. Ditto for depression. Its emotion, not "unhelpful cognitions". They may add to the all round negative experience, but stopping them won't fix the problem.

I think it can go in both directions. Distressing thoughts can trigger emotions and emotions can lead to distressing thoughts.

I think the idea that only thoughts matter highlights the self-serving agenda of the CBT promoters.

 

[slysaint]

It makes AfMEs statement so awful, if they really cared they would be supporting only biomedical research. In fact what about the CMRC - how can they support this and MEGA at the same time ?

The money spent on MAGENTA and proposed FITNET could have funded, what, 2,000 patients to have Naviaux's tests.

 

[trishrhymes]

It is interesting to note the types of standard medical care that were used in the FITNET trial.

Of the 67 who formed the comparison group, 38 were receiving two or more therapies.

About half were undertaking GET and half face-to-face CBT,

So the improvement scores of the internet group, who were home resting were compared with the improvement rate of those attempting GET or/and travelling to the clinic for CBT. Not surprisingly, perhaps, those who were home, did better that those on an exercise regime. Even PACE didn't do that.

“Usual Care” Therapy Number of subjects receiving therapy
Cognitive Behavioral Therapy (face-to-face) 44
Graded Exercise Therapy 33
Alternative Therapy (not described) 16
Individual or group rehab (no described) 15
No therapy 7

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....

 

[AndyPR]

I think anxiety is driven by emotion, pure and simple.

My own little pet theory to add to this is that POTS can be a cause of people thinking they are anxious and/or sufferers become anxious on standing due to the symptoms. I at least attribute this to be the cause of what I previously believed to be anxiety.

 

[AndyPR]

Action for ME tries to avoid giving an opinion in this opinion piece on FITNET

https://www.actionforme.org.uk/news/action-for-m.e.-responds-to-fitnet-nhs-trial/

also posted on their Facebook page https://www.facebook.com/actionforme/posts/10154637819488209

 

[Countrygirl]

http://www.bmj.com/content/330/7481/14

The FITNET idea probably stems from this trial which was published in the BMJ and was authored by the same researcher as the Dutch 2011 trial which is being used by EC to promote the UK version. Much of the language is the same.

It says this:

Patients with chronic fatigue syndrome have debilitating unexplained severe fatigue that is not the result of an organic disease or ongoing exertion and is not alleviated by rest.

Several randomised controlled trials have shown that cognitive behaviour therapy is effective in adults

For passive patients we started a systematic programme of activity building as soon as possible. To assure adherence, we first addressed and challenged their beliefs that activity would aggravate symptoms. In such patients it is thought to be counterproductive to reduce activity levels any further or reinforce the patient's need to respect limitations.11

In adolescents with chronic fatigue, cognitive behaviour therapy was more effective than remaining on a waiting list in reducing severity of fatigue, improving physical functioning, and increasing school attendance. Furthermore, treatment resulted in a greater proportion of patients with clinically significant change in these variables, more self reported improvement, and a significant reduction in several additional symptoms. These results endorse the findings of previous studies on the efficacy of cognitive behaviour therapy for adults with chronic fatigue syndrome.

19% of the patients dropped out of the (small) treatment arm. The reasons are not reported, but the author says this about those who couldn't complete the course:

Six patients (19%) withdrew from therapy, which is higher than in most adult studies on cognitive behaviour therapy in patients with chronic fatigue syndrome.5 Most withdrawals occurred in the first half of the study, suggesting that therapists became more experienced in meeting the specific need for enhancing motivation of adolescent patients.

They obviously did not consider that their treatment caused deterioration in the patients. If they were UK patients, they would potentially have been rediagnosed with PRS.

How much of the above is accepted by the UK FITNET proponents? Are they prepared to distance themselves from the views expressed in this and the Dutch FITNET paper?

 

[Countrygirl]

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.

@trishrhymes This is my point too. They have scored something of an home-goal.

 

[Molly98]

There is one way of possibly stopping the BPS model mid spin.
Given that the latest research findings from Fluge and Mella and Ron Davies seem to show "it is in the blood"

ask EC, PW and other BPS believers and those who may care to judge us as having a psychological illness if they would be prepared to prove their theories by accepting an ME sufferers blood via blood transfusion.

 

[trishrhymes]

Action for ME tries to avoid giving an opinion in this opinion piece on FITNET

https://www.actionforme.org.uk/news/action-for-m.e.-responds-to-fitnet-nhs-trial/

also posted on their Facebook page https://www.facebook.com/actionforme/posts/10154637819488209

Just tried both links, Andy. Both unavailable.

 

[AndyPR]

Just tried both links, Andy. Both unavailable.

They changed them, these should work now
https://www.actionforme.org.uk/news/new-fitnet-trial-announced-for-young-people-with-me

https://www.facebook.com/actionforme/posts/10154637905553209

 

[worldbackwards]

Action for ME tries to avoid giving an opinion in this opinion piece on FITNET

https://www.actionforme.org.uk/news/action-for-m.e.-responds-to-fitnet-nhs-trial/

also posted on their Facebook page https://www.facebook.com/actionforme/posts/10154637819488209

Better than I expected. Part of the fun with AfME is that, whilst with everyone else you know what they're going to say, with them you what they aren't going to say.

 

[Cheesus]

There is one way of possibly stopping the BPS model mid spin.
Given that the latest research findings from Fluge and Mella and Ron Davies seem to show "it is in the blood"

ask EC, PW and other BPS believers and those who may care to judge us as having a psychological illness if they would be prepared to prove their theories by accepting an ME sufferers blood via blood transfusion.

There's a good chance it wouldn't do much to them. It may that you need a genetic predisposition for ME, also if it is an autoimmune disease then they would likely be unaffected by a brief uptick in auto-antibodes (although this hypothesis has not been thoroughly tested).

Having said that, I wouldn't be overly enthusiastic about receiving blood from an ME patient if I were healthy. Better opt for someone without any disease. Should keep the vampires away at least

 

[eafw]

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.

That in and of itself will be a big factor - did they control for this ? (haven't read the paper but not betting on it)

ask EC, PW and other BPS believers and those who may care to judge us as having a psychological illness if they would be prepared to prove their theories by accepting an ME sufferers blood via blood transfusion.

shades of Gummer and BSE. Is it a real risk, I'm not sure, but there are plenty other risks to transfusion anyway.

http://www.medscape.org/viewarticle/567848

 

[worldbackwards]

Wouldn't fancy their blood.

 

[AndyPR]

A BBC News article on ME from 2011
http://www.bbc.co.uk/news/health-14883651?SThisFB

Prof Stephen Holgate, chair of the Medical Research Council group on CFS/ME, told the BBC: "I think the problem with it [CFS/ME] is the term is used as a bit of a dustbin."

And as we can see, Crawley is doing her bit to avoid that and help refine the term.... oh, wait, hang on. /s

Dr Ester(sic) Crawley, who specialises in children with the illness, said: "The prognosis for adults is poor, but for children it is really good, up to 94% get better."

 

[Cinders66]

I'm afraid this organised media blitz and the unsurprisingly unhelpful media has solidified my opinion against the uk medical establishment including CMRC. No point holding yearly medical conferences and lamenting there's no take up of MRC highlights on neuroinflammation in more severe ME and then organising this with the SMC framing it as they did and the media asking "can kids with CFS be treated without even setting foot in a drs office" .
The only good thing to come out of it was it got Jane Dolby on tv who managed to voice her concern regarding the rehabilitation narrative, pressure to perform and get the reality for severely affected kids mentioned, which I think shocked the presenter (Victoria Derbyshire)

 

[slysaint]

Jane Dolby

Think you mean Jane Colby

This was her reply to my email;
"
As you will know, the STOP GET movement began when Tymes Trust put a
poll on Twitter during August, about suspending MAGENTA pending
independent analysis of the PACE data when released.

The vote was 100% to suspend. (It is still our pinned tweet, and can
still be read.) We had 223 people respond during the week (which is the
longest that a Twitter poll can run for) so this was clearly
representative of how people felt.

We were then planning to broaden this out to include all forms of GET
research on people with ME, and were planning to set up a parliamentary
petition. I was saved the trouble when a group of patients set it up, so
of course I signed immediately and publicised it through Twitter and
Facebook. The Millions Missing people (Jen Brea) then broadened it out
yet further, to include the world, since only UK people can sign the
parliamentary petition.

It is good when initiatives are taken up worldwide - it's not the first
time we've started something and I'm sure it won't be the last!

All best wishes and thanks for getting in contact.

Jane

Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust

Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups

PO Box 4347
Stock
Essex
CM4 9TE
Tel 0845 003 9002
www.tymestrust.org
"