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

[AndyPR]

If EC is now insisting that ME is biological but that CBT is capable of changing our biology, why the hell is this miracle cure not being used to cure cancer, MS, Parkinsons and every other serious disease out there because surely if its mind over matter for a biological disease such as ME it must be applicable to every other disease. No more need for expensive medications, chemo and other treatments, it could be saving the NHS a fortune and in fact save the NHS.

It's because she is leaving out the important step in her claims that the person receiving CBT needs to action the changed habits that then make the seeming miraculous happen. And it is miraculous to us because she is studying many 'merely' fatigued, not definite ME sufferers (we all know that constant fatigue can be terrible but there is a difference between ME sufferers and people who only suffer fatigue for some other reason).

This is the selection criteria (she is using the NICE guidance)

I'm sure you can see how 'merely' fatigued kids can enter the study and improve with decent sleep, activity and exercise
habits. However, any kids with genuine ME are in real danger of being adversely affected, although according to Crawley they aren't as the treatment is safe, because she says so...

 

[eafw]

Well is that is true, she can prove it with objective biological measures. So come on Esther Crawley, let's see you pick some convincing biological measures to prove that CBT is changing the biological underpinning of the disease. Else, what you say is not proven.

Exactly, and should be very easy to test too. Her arguments will be very persuasive to the untrained eye (and I've heard similar from assorted "CFS experts" over the years) but are incredibly superficial and easy to challenge with a bit of thought.

 

[snowathlete]

I had not realized the NICE diagnostic guidelines (which are not meant for research, surely) are only 3 months for children. Also, only one other symptom is stupid. I would actually argue that children should be longer, if anything, not shorter in duration than adults, because we get a lot of viruses for the first time in childhood that are known to cause post viral fatigue whereas most adults have been through that gauntlet already.

I'd like to see someone challenge these guidelines in next year's review, they seem to lack basic common sense and I'm not sure there is any good evidence to back them up.

 

[Ysabelle-S]

This study is completely irresponsible. The criteria is likely to pull in many who don't have ME, and if those people improve in any way because they don't actually have a serious biomedical illness, it will be used to say, "See, there is a psychological aspect, we were right all along." The public, the medical profession, and the media are not remotely interested in the details of ME, and they are counting on this ignorance continuing. More money will have been wasted, and kids with real ME quite possibly harmed, since they are being encouraged to raise activity levels. It's a fundamentally abusive therapy because it pretends that patient attitude is an issue, and that changing attitude can change biology. This could serious harm young patients' psychological health, because they are dealing with an illness that is real, and which will not go away with a change in attitude. The money wasted on this self-indulgent careerism could have been spent on real biomedical research. Or it could have been spent on collating international biomedical research and drawing up new health and research policies for the illness. But no, personal hobby horses and careers come first, as always.

 

[Chrisb]

Does the symptom "difficulty in sleeping" in the NICE criteria make any sense to anyone. It may be true for some for some of the time, but for others difficulty staying awake might be an equal problem.

My suspicion is that a capacity to alter ones disturbed sleep would be likely to be an indication of some problem other than ME. The sleep problems associated with ME seem intractable.

I would have much less of a problem with Crawley if she would merely admit that she was studying chronic fatigue in children, although there would remain the issue of the treatment of those who refused to be cured

 

[eafw]

If EC is now insisting that ME is biological but that CBT is capable of changing our biology, why the hell is this miracle cure not being used to cure cancer,

Her argument would be that CBT affects the HPA axis but not proliferation of tumour cells. Therefore CBT can be applied to conditions where the HPA axis is dysregulated ... such as ME. Ta-da, psychology is "as good as a pill" for people with ME.

 

[Marky90]

Just so I understand this properly, is she saying that children can have ME but they will just have different symptoms? Are there any illnesses where this actually happens?

She`s pulling facts out of her hiney..

 

[slysaint]

Does the symptom "difficulty in sleeping" in the NICE criteria make any sense to anyone

Yes. Haven't had a really good nights sleep (like before) in 15 years, also tired but wired is common.

 

[Molly98]

What I also don't understand is how EC is now stressing that ME is a biological condition but then when children have become severely ill with ME it all of a sudden turns into a psychiatric condition of Pervasive refusal disorder?

 

[eafw]

She`s pulling facts out of her hiney..

No, not entirely. This is how a lot of people get taken in, or end up wrong-footed by the BPS. Some of what she says is correct. It is then put together in a plausible enough fashion, with a bit of bait and switch along the way, such that the average layperson will not see through it and the few facts that are scattered about in there can be used to "prove" what they are saying.

 

[Marky90]

No, not entirely. This is how a lot of people get taken in, or end up wrong-footed by the BPS. Some of what she says is correct. It is then put together in a plausible enough fashion, with a bit of bait and switch along the way, such that the average layperson will not see through it and the few facts that are scattered about in there can be used to "prove" what they are saying.

Generally that`s true, but I`m referring to the statements that the symptoms in children present themselves differently, and that most children recover. It`s BS, cause the science to support it does not exist.

 

[Ysabelle-S]

Does the symptom "difficulty in sleeping" in the NICE criteria make any sense to anyone. It may be true for some for some of the time, but for others difficulty staying awake might be an equal problem.

My suspicion is that a capacity to alter ones disturbed sleep would be likely to be an indication of some problem other than ME. The sleep problems associated with ME seem intractable.

I would have much less of a problem with Crawley if she would merely admit that she was studying chronic fatigue in children, although there would remain the issue of the treatment of those who refused to be cured

Sleep is the least of my concerns. It's just not a factor when it comes to listing symptoms.

 

[Marky90]

What I also don't understand is how EC is now stressing that ME is a biological condition but then when children have become severely ill with ME it all of a sudden turns into a psychiatric condition of Pervasive refusal disorder?

She is trying to camouflage her real opinion, so that grants are given without too much difficulty.

 

[Woolie]

So if it is aimed at changing fatigue-related cognitions, why is it recruiting only young people with ME, why is it not also trialling its "Therapy" on children with other diseases which fatigue is a symptom such as children with heart conditions, liver or kidney disease or cancer.

Surely it should be just as successful in any disease where fatigue is an issue to change fatigue-related cognitions and gradually increase activities. Why are ME patients continually singled out for this. Its not just the potential harm of the therapy its the harm the whole media bias and reporting has on every one of us and other peoples perceptions of us and this illness.

Careful what you wish for, @Molly98. BPSers see fatigue as fair game even when it occurs in the context of a confirmed biological disease. MS patients who experience fatigue need CBT. RA patients, yep, CBT. Cancer, well there's a huge literature on how they need CBT because they can be, well so negative and that makes them die quicker (of course, not really, but this research is so loose and free, you can easily get it to show what you want).

So, in a nutshell, any illness without an explanation - its theirs. Any individual symptom even in a recognised disease that can't be linked to a specific biomarker - its theirs too.

 

[Chrisb]

Yes. Haven't had a really good nights sleep (like before) in 15 years, also tired but wired is common.

Yes I understand that., but that was not quite the point I was trying to make.

I suspect that there are many for whom a major symptom is, for some of the time, excessive sleep. This would not appear to fall within the criteria as they are written.

What is not clear to me is whether the criteria are merely poorly drafted or whether those with such symptoms are intended to be excluded. If it be a case of poor drafting, one should not have great confidence in the rest of the document.

 

[Countrygirl]

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.)

 

[Molly98]

Her argument would be that CBT affects the HPA axis but not proliferation of tumour cells. Therefore CBT can be applied to conditions where the HPA axis is dysregulated ... such as ME. Ta-da, psychology is "as good as a pill" for people with ME.

Ah I see, thank you for pointing this out for me.
But then isn't CBT in this regard just a tool as is Restorative yoga, mindfulness, other forms of psychotherapy and counselling all which can help in this regard. I don't know if I am imagining this but I thought I had read something somewhere to say research had shown CBT no more effective than other forms of counselling in ME. 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. 6 sessions of CBT seems to be the NHS answer to everything - put a sticky plaster on, pretend the wounds not there, or in our case put a sticky plaster on and pretend the disease in no longer there. In both cases psychological causes and biological until you address the underlying cause you are going to remain unwell.

 

[Molly98]

Careful what you wish for, @Molly98. BPSers see fatigue as fair game even when it occurs in the context of a confirmed biological disease. MS patients who experience fatigue need CBT. RA patients, yep, CBT. Cancer, well there's a huge literature on how they need CBT because they can be, well so negative and that makes them die quicker (of course, not really, but this research is so loose and free, you can easily get it to show what you want).

So, in a nutshell, any illness without an explanation - its theirs. Any individual symptom even in a recognised disease that can't be linked to a specific biomarker - its theirs too.

scary stuff Woolie!

 

[chipmunk1]

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 don't know. I think the idea that subconscious emotional conflicts cause illness is freudian and has been mostly discredited. Freud made up all of his success stories. They never happened.

I think the only therapy which is said to be based on robust evidence is CBT. Robust evidence in psychology can mean no real placebo control groups, no blinding and subjective measurements.

That being said, the idea that a few sessions of commonsense positive thinking counseling can cure serious mental or physical illness, an idea that the NHS seems to support, is quite delusional but if you view it from an economic point of view it makes sense.

 

[tinacarroll27]

I think the UK is so toxic now with corruption and vested interest that I can't see a way out. We have had this gas lighting for 30 years and I can't see any change coming soon. I think we will have to rely on international research and eventually they will have to except the truth. 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!! At the moment it feels like a bad case of the emperors new clothes in the UK.....They are all completely naked!! History will not view them well!!!!!!!!