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

[Esther12]

AYME are so bad that they're nearly funny, despite all of the very real harm that they do.

 

[Marky90]

AYME - Nice try, but i swipe left.

 

[PhoenixDown]

...But her figures just aren't right, from one in 50 children ger 'chronic fatigue' (I think this is from her own research last year based on parents filling out forms on how tired their kids were)...

I too doubt those statistics, if one in fifty teenagers have ME (that's 2%), applying those figures to adults too, there's 64.1 million people in the UK, and 2% leaves 1,282,000 people with ME. Sounds like a very diluted inclusion criteria.

EDIT: According to the MEAssociation 250,000 people in the UK have ME so Esther Crawley thinks teenagers are affected at 5 times the rate of adults.

 

[rosie26]

"Why is there such hostility around trials in children from some patient groups?"

Because you don't understand this illness and shouldn't be involved in treating or trying to 'fix' children with ME. "Intense therapy"!!! Not what a very ill ME patient should have to be subject to. Stay away from our sick children with ME.

I feel very angry about this too. In my severe years I was too sick to talk, concentrate or sit up. And I still am very affected. This "intense therapy" is harmful and useless and will just make children with ME sicker.

Sorry, I cannot read this whole thread, because of my ME!

 

[alex3619]

I think we need an ME science Media centre, any takers on setting one up?

I have been suggesting this for years. Its overdue.

 

[alex3619]

The Guardian Australian Edition regurgitated their UK piece:

Young people to get ME treatment in trial after success in Netherlands

This appears to be blatant churnalism from a biased source.

 

[Kati]

They are branding ME for children as a child who has 3 months of fatigue. This is criminal. Of course there will be some recoveries if they are not discriminating depression from ME to idiopathic fatigue. They have learned nothing from PACE trial, they are simply trucking along convincing governments and other doctors that fatigue is ME and it's nothing serious, simply need CBT. This is criminal.

 

[Sean]

"It's important that you enter the treatment with a positive mindset: I can fully recover from CFS by working with the tips and tools of FITNET."

Straight fraud.

 

[Art Vandelay]

How to make a complaint to the Guardian:

https://www.theguardian.com/info/20...-complaint-about-guardian-or-observer-content

How do I complain?
Please read the Guardian News & Media Editorial Code first to understand whether the readers’ editor can look into your complaint. You can then email the readers’ editor’s office directly on guardian.readers@theguardian.com or write to The readers’ editor, The Guardian, Kings Place, 90 York Way, London, N1 9GU outlining the following points:

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guardian.readers@theguardian.com

 

[suseq]

Very often, before some orthodoxy collapses, it puts up a last big fight. And it can appear to get a lot of airtime and defeating them at that point can sometimes seem like it's impossible. I think the media blitz here is a furious fightback against inevitable defeat. Between PACE and what's coming out internationally, their position is hugely under threat. Patient voices have been ignored. Increasing disability after questionable 'treatments' has been ignored. That is a scandal in itself, because they can't say they weren't warned about the effects of their 'treatments'. The BPS school are desperate to control the narrative.

The biggest issue is the welfare of the children in this particular trial, and the need to get as much information to parents of young ME sufferers. Some parents will be taken in by the BPS crowd, because they trust authority, don't understand the politics of ME, know nothing about the PACE trial sham or the international research, and also probably prefer to believe it's behavioural rather than a serious illness from which their child might not recover.

Beyond that, these 'researchers' will not have careers in this field for much longer. I can't see them being around in ten years, but even five years or less might see them kicked out, or, at the very least, much more marginalised. The science is against them. ME will be solved by researchers outside the UK, and that's as it should be, since that's where most of the good science is happening. I think one of the things that's most infuriating is the way real experts are ignored. They are doing the hard work on solving this, and people with cult beliefs about illness delusion and deconditioning are taking all the bows, while a clueless and unquestioning media helps them on. The UK media is beyond useless, but that should not come as much of a shock to anyone who lives here.

When the time comes, there should be no holding back re: the investigation on what happened to ME sufferers at the hands of psychology and psychiatry. This is a bandwagon that will be looking for other patient groups to target. The wheels need to come off and the wagon dismantled for good. Easier said than done of course. I also think the Science Media Centre needs to be investigated. It has done nothing but mislead on this illness, and has worked contrary to the interests of science. It is now at the centre of a huge medical scandal. Continuing to misrepresent the illness, the patients, and the science is hopefully going to reverberate on them like a boomerang.

Ysabelle, Thank you for expressing so perfectly everything I'd hoped to say. Agree wholeheartedly. The BPS model and all its associates is a masterclass in psychological manipulation. Thankfully we have good science on our side.

 

[ZeroGravitas]

I was just coming back to say that an old school classmate of mine had a great little article published online by the Independant/iNews, and it seems (to me) to be on their front page:

But is seems that I was soundly beaten to it

CBT won’t cure my chronic fatigue, any more than it would cancer – it’s a physical illness
Scott Jordan Harris
https://inews.co.uk/opinion/comment...-than-it-would-cancer-its-a-physical-illness/

Great stuff. Concise, well written and balanced counterpoint, giving CBT it's dues while putting it in it's place. Also covering IACFS/ME conference. A handy piece to link people to. Will have to see if it makes print copy.

Clearly that is wrong (see @ZeroGravitas's earlier post).

Earlier, like way back already! (And now magically in a different forum section, heh.) You meant the 8% recovery must be wrong? The plot from the follow up paper reads off ~15% for the usual treatments group, at the 6 month check in... Or the 2% of kids have CFS (as per their criterior of missing 1 or more days a week of school due to fatigue)?

I too doubt those statistics, if one in fifty teenagers have ME (that's 2%), applying those figures to adults too, there's 64.1 million people in the UK, and 2% leaves 1,282,000 people with ME. Sounds like a very diluted inclusion criteria.

EDIT: According to the MEAssociation 250,000 people in the UK have ME so Esther Crawley thinks teenagers are affected at 5 times the rate of adults.

Hmm. Well, maybe it's not quite thaaat far off... If younger people tend to come down with glandular fever and post viral fatigue a lot more frequently (as makes anecdotal sense to me), but 2/3rds (as are shown here) spontaneously recover within 2 years, the remaining 1/3 presumably going on to have chronic fatigue proper, into adulthood, etc...? Also from environmental exposures, shifts in nutrition and population microbiome, it's not unreasonable to expect a substantially higher incidence of chronic illness in younger generations, now... And it's surely under-recognised/diagnosed in general... Then, do you know how conservative the MEAssociation's 250k estimate is?

But yeah, Crawley et al's 1% or 2% figures don't exactly inspire confidence. And casting the net wider is, of course, only making it easier for misunderstanding from the "it's yuppie flu"/malingering trolls. Obviously it's not helping when reporting just talks about teenagers who want to sleep all the time, neglecting the wired-but-tired, severe pain, cognitive dysfunction, etc, etc, aspects.

 

[Cheesus]

.
Opposing MEGA (OMEGA) petition link in case you want to sign it after reading todays media blitz on Crawley's 'research'
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
.

I've now signed the OMEGA petition and I just emailed Change to ask them to withdraw my signature from the MEGA petition.

 

[AndyPR]

Can we get the title of this thread amended as this has had the FITNET thread merged into it, imo it doesn't reflect the vast majority of what we are talking about here, which is inspired by the FITNET announcement.

 

[eafw]

Are there no laws in UK against such obvious conflicts of interest?

A journalist on a journalistic advisory group would not be considered a conflict of interest. What's interesting though is to remember the guidelines given to Levenson on the reporting of science (not a bad set of guidelines as it happens).

They include "remember patients: don't call something a "cure" that is not a cure". Wait, there's more ... these guidelines were drawn up by non other than Fiona Fox (chief string-puller at the SMC and someone who very likely has "helpful" connections to people at the beeb and guardian ).

If you read the rest of the guidelines you will see that they are failing to meet them in a fairly serious way when it comes to reporting on ME

I have been suggesting this for years. Its overdue.

http://forums.phoenixrising.me/inde...nds-patient-activist-group.47697/#post-781630

 

[AndyPR]

I got ME and thought: ‘This is the end’ | The Times | 2 November 2016 - Times article, full text on the MEA website.
http://www.meassociation.org.uk/201...ht-this-is-the-end-the-times-2-november-2016/

And link to the article on The Times site - http://www.thetimes.co.uk/edition/times2/i-got-me-and-thought-this-is-the-end-pvsprjkpl

Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology. “In children we know that this is a very heritable condition: [some] children are genetically vulnerable,” she says. “And they get a virus or infection and that sets off a whole load of biology. Thirty per cent of children who come to our clinic do develop depression or anxiety and I am always constantly surprised that it’s not more.

“We use cognitive behavioural therapy to help children change their sleep, their exercise, their activity and so on, but what cognitive behavioural therapy does in this illness is change the biology. You change someone’s sleep so they are getting better sleep and they are waking up at the same time everyday, you change almost everything about them. You change the way their brain produces cortisol, you change what is called the hypothalamic-pituitary-adrenal axis . . . We don’t have a pill for this but this might as well be a pill in terms of the effect it actually has on the body.”
....
The treatments offered by Crawley and her team will extend the availability of CBT to young people and those without access to specialist clinics but don’t seem to be offering anything fundamentally different. Crawley disagrees with this assessment, however, stating that her trial should not be compared to Pace: “[Fitnet] is a trial in children and not in adults. Recovery rates in children are very different to those in adults and the way children present is very different to adults.”
.....
The question remains whether scientists are taking a risk in prescribing therapies such as CBT before we have the biomedical research that will allow us fully to understand the disease. On this point Crawley says: “Oh, no, I don’t think there is any risk at all. There are loads and loads of treatments that we offer for lots of different illnesses where we don’t understand how they work.”

If people can't see how dangerous this woman is then they never will. While it could be better, this is better balanced than almost all of the articles from yesterday.

 

[AndyPR]

Crawley disagrees with this assessment, however, stating that her trial should not be compared to Pace: “[Fitnet] is a trial in children and not in adults. Recovery rates in children are very different to those in adults and the way children present is very different to adults.”

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?

 

[eafw]

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 defines any fatigue syndrome in children as ME, that's a fundamental problem. However, she is right in that illness can manifest differently in children and adults. The immune system, metabolism and brain are different enough, so for neuro-immune, brain metabolism related illness especially, it's not at all a suprise. It's the way she uses it as an excuse for badly defined groupings and poor research - even before we get to the rest of her antics in the way she treats patients.

 

[Molly98]

I got ME and thought: ‘This is the end’ | The Times | 2 November 2016 - Times article, full text on the MEA website.
http://www.meassociation.org.uk/201...ht-this-is-the-end-the-times-2-november-2016/

And link to the article on The Times site - http://www.thetimes.co.uk/edition/times2/i-got-me-and-thought-this-is-the-end-pvsprjkpl



If people can't see how dangerous this woman is then they never will. While it could be better, this is better balanced than almost all of the articles from yesterday.

Yes I agree it is better balanced than yesterday's articles and good to have a description of some suffering severe ME as opposed to those awful picture yesterday of the woman on the loo with headache etc.

What I don't get is this.

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.

Or is it that us ME patients are "special" and have special super powers to control or biology with our thoughts far more than other human beings,hence this approach can only work for ME suffers, perhaps we are gifted, perhaps we really all belong in Hogwarts with Harry Potter.
Maybe this is the silver lining of having ME we have a supernatural gift that is genetically inherited.
Just think, once EC had cured us all of our ME we may advance to levitation and broomstick riding. Wow I have always wanted to play Quidditch!

 

[Cinders66]

Can I just make something clear

I got ill as a teen. First 2 years my sleep pattern was normal i.e. 10pm sleep 7am rise most days. I have never been a day time Napper. But sleep was unrefreshing and light i.e. light or sound woke me as never before and I generally awoke feeling worse than when I'd gone to bed. NO magic sleep advice dressed up as CBT would have changed my sleep behaviour or "my biology" I am sure this applies to many kids.

You can aLso help a kid with pacing their activities without dressed in it up as a psychological therapy.

The CFS CBT model chooses to blame the patients and make their behaviour a medical problem. Show me any diabetic or heart disease patient who instinctively knows how to best manage their illness.

Also scientists - is getting back into normal sleep time/ wakepattern going to reverse low cortisol ? Is it that simple?

 

[snowathlete]

Crawley in The Times: "This approach changes the biology of a biological illness, which has, in some children, psychological consequences.”

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.