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E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

AndyPR

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Guiding the lifeboats to safer waters.
I hope to donate a bit more to one of these charities in the next few weeks. The abysmal state of UK medicine just makes me more supportive of research abroad.
Don't forget that both Open Medicine Foundation and now the Solve ME/CFS Initiative have donors who will match donations on a 3 to 1 basis, so every dollar you donate gains a 3 dollar top up. And while, in general I agree about UK medicine research, IiME are doing impressive things for their size, and the MEA also funds biological research.
 

Ysabelle-S

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Don't forget that both Open Medicine Foundation and now the Solve ME/CFS Initiative have donors who will match donations on a 3 to 1 basis, so every dollar you donate gains a 3 dollar top up. And while, in general I agree about UK medicine research, IiME are doing impressive things for their size, and the MEA also funds biological research.
Yes, there are exceptions in the UK. I think I'll go fo one of the 3 to 1 options though since it would be better value for money at this stage.
 

A.B.

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There are actually a lot of good things in this article compared to the typical media articles - the acknowledgments of the following:
They know what we would like to hear.

If you read it carefully, it's an attempt to justify CBT/GET by exaggerating the uncertainty surrounding CFS, labelling critics as being unreasonable bad people, and completely sidestepping the fact the PACE trial actually shows that CBT/GET don't help and that the authors engaged in what can only be described as fraud - intent to deceive for personal gain.

Yes, they would very much like to make peace and just carry on with CBT/GET as usual.

It's not an attempt to help us. It's an attempt to save their behinds.
 

A.B.

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For those who don't want to register

Time to end the damaging battle over chronic fatigue syndrome
All those interested in progress on helping those with CFS should unite in the push to find therapies, be they behavioural or biomedical, says Esther Crawley

We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). And yet it causes misery and suffering for hundreds of thousands of people, including many children.


One in a hundred teenagers in the UK miss a day a week or more of school because of it, and 2 per cent are probably missing out on the normal stuff that teenagers do. Those I see in my clinic are sick with disabling fatigue, memory and concentration problems, and terrible pain. On average, they miss a year of school, on top of which mothers give up work and siblings suffer.

Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment. Some still dismiss it as a non-illness; others decry attempts to treat it with psychological therapy.

The result is that few patients are offered treatment and there is almost no research on the condition. This illness is more common than leukaemia and more disabling than childhood arthritis, but few specialists treat it.

How have we arrived at a position where the biggest reason for teenagers to miss school long-term is rarely studied and society allows so few to receive treatment?

Part of the difficulty is that CFS/ME is not a single illness. Both children and adults have different clusters of symptoms that may represent different illnesses with different biology, requiring different treatments. This may explain why treatments only work for some – and is a problem for those trying to develop them and for people who don’t get better.

Beyond tired
At the same time, fatigue is something that everybody experiences. Although epidemiology clearly shows that CFS/ME is different to normal fatigue, people still argue that because they have been tired, it is not a real illness. The truth is that when those without CFS feel tired, it will be for a short period, without other symptoms, and won’t stop you working, studying or socialising.

My patients would love to go to school or see their friends, but have had to give up these things.

Although CFS is poorly studied, we do know it is heritable and is triggered by something, usually an infection, to which children who get CFS are more genetically vulnerable.

In teenagers, we know hormones are affected: for example, the natural steroid cortisol is at a low level in the morning. We also know that there are changes indicating that metabolism is different from normal. We now know that it isn’t an individual “bug” that is important in leading to CFS, but the severity of the initial illness caused by the bug.

More research needed
We need more research to understand what happens to keep people so sick, long after the initial illness has passed.

Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological.

Even more strange is the argument that because clinicians currently use behavioural approaches to treat it, we must secretly think it is psychological.

Changing someone’s behaviour is a potent stimulus to changing their biology. For example, altering how well a teenager sleeps will change their biology, including daily cortisol patterns.

So what does the field need? We need very large studies that look at the underlying biology, including genetics, to understand the different subtypes of CFS. In the UK, the National Health Service is probably the place to do them.

While we await the results, we need better treatments for the large number of people with the condition who want to get back to school or work. We are currently recruiting patients for the largest study so far to investigate internet-delivered cognitive behavioural therapy for children and teenagers throughout the UK.

Patients are desperate for this trial, yet some people are still trying to stop us. The fighting needs to end. Those of us who want to help people with CFS must work together so that this important illness is not ignored any longer.

Ester Crawley is leading the UK trial of online cognitive behavioural therapy
 

Countrygirl

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Don't forget that Crawley and White co-authored a paper I posted a couple of days ago investigating the success of the CBT/GET regimes in the clinics and found that they were unsuccessful. She wriggles out of this by claiming that ME in children is different to that in adults.

Do we have any proof of that? Can we challenge her claim?

For one, we could use the Dutch FITNET paper which provides evidence that clinic-based CBT for children is ineffective.
 

eafw

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We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
That sentence is the logical equivalent of this: "we know almost nothing about chronic fatigue syndrome, also known as lupus/multiple sclerosis/traumatic head injury/migraine/pcos ...."

The conflation from the "also known as" is the problem.

A correct statement would be "we know very little of the mechanisms of fatigue, a symptom which is widespread across a number of neurological and immune disorders such as ...."
 

Ysabelle-S

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Trying to create a narrative where she can then shoehorn in her cognitive behavioural therapy. It's been such a wonder therapy, the internet is awash in stories of its success with ME. Moreover, we hear nothing but cognitive behavioural therapy, CBT, CBT at the biomedical conferences. Whole days have been spent showing charts extolling the virtues of CBT by Skype, and the effects on patient biology.
 

Esther12

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Crawley said:
Patients are desperate for this trial, yet some people are still trying to stop us. The fighting needs to end. Those of us who want to help people with CFS must work together so that this important illness is not ignored any longer.
From the tribunal judgement that ruled on the Matthees case:

Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were "engineering the coverage" to “frame the narrative" in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient 'community'. This has been highlighted by respected scientists, and clinicians (see p8790/B7). Rather, no evidence of a 'silent majority' in support of the PACE trial has been put forward.
What evidence of patient support for FITNET-NHS is there? Mary Jane Willow?
 

Sidereal

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CBT pushers are always talking out of both corners of their mouth.

"Absolutely nothing is known about ME/CFS."

"ME/CFS in children is a different illness than in adults."

Even if the second statement were true, which it isn't, how would she know that in light of the first statement??? There is zero evidence that they are different illnesses and it's far more likely that they're saying this to justify the complete lack of effectiveness of CBT/GET in adults when they peddle these treatments on the kids. "Oh never mind the fact that CBT/GET don't help any adult, you've got a different illness."

Kids have better redox capacity than adults so it's no surprise that they often spontaneously 'recover' from a prolonged bout of post-infectious fatigue but here's the thing, many of these people will go on to relapse years or decades later as many of us on this forum have and when the disease comes back in adulthood it is much, much worse and seemingly intractable. Often times the "oh I had mono for six months in high school" is just a distant memory when the crash happens in your 20s, 30s, 40s...
 

user9876

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That is a very sanctimonious attitude for someone who has attacked and stigmatized patients. This is just another attempt to attack patients by trying to put words in peoples mouths and trying to present her research in a reasonable light whilst not acknowledging the potential for harm.

We should not forget that patients have been lied to about the results of PACE. They claimed and publicized a recovery rate of 22% yet when we got the data we found using their own pre-trial definition that recovery was not significant. They have failed to take seriously issues of harm with PACE reporting undelared protocol changes on harms and more generally attempts to dismiss patient reports of harm with no investigation. They also ignore the scientific evidence around the affects of exertion. McCrone who is chairing the steering committee for Crawley's latest trial is one of those who has lied to patients over PACE improvement and recovery results, failed to follow good methodology and failed to correct his own paper when he acknowledged errors in the comments.

Crawley's own trial which was just announced may go through the pretense of being science but it is seriously flawed. The protocol only uses subjective measures to judge interventions that are intended to change the way symptoms are perceived. This is not an acceptable level of science. Patients expect better. For years outcomes have shown to be poor with objective measures and so dropping them can only be seen as a tactic to get the desired result.

If crawley doesn't want to be challenged then she needs to improve the quality of her work and show an awareness of the whole literature and deal with the failures of trials of CBT such as PACE.
 

soti

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A new strategy?
Yes, so is it? Here she says, "Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological." I don't know the history of Esther Crawley's comments, but it definitely contradicts Simon Wessely's famous "ME is the belief that you have a disease called ME", which precisely dismisses ME as psychological.

Come to think of it, I'm also surprised to see her use the phrase "dismiss as psychological" -- that seems to not be singing off the same hymn sheet as the "oh so you think psychological illnesses aren't real" objection, or at the very least is curiously orthogonal to it.

So, taking this editorial at face value (which I know is highly problematic given the history of the other side maintaining that we are delusional, but bear with me) it does seem to me to be a shift from what I would have expected. I would have expected "there is no boundary between psychological and physical" (whatever that means to them, I'm still not sure it's more than just a way to call people "dualists" by way of insult) and an assertion that the disease is psychosocial-genic. But instead we get here an affirmation that it is physical and a denial that it is psychological. There thus does seem to be some daylight between the standard BPS party line and this editorial.

Which is interesting. I like this rhetoric better. I'd like it a lot more if we could be sure that it did not correspond to the same sort of "illness belief" treatment as the old rhetoric, a submerging of an unacceptable way of speaking (it's not nice to call patients delusional) while pursuing business as usual for the treatment.

Call me crazy (ok, I'm crazy :) but I'm still willing to hope that there are some BPS people somewhere who are not lost causes, who might actually come around. Though to be fair, it's pretty hard to walk back a claim that patients are delusional.
 

sarah darwins

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Yep, not buying it for a second. It's a classic manoeuvre from someone who has lost the argument.

These folk have shown themselves — heaven knows they've been given enough opportunity — to be a malign influence, holding back research and spreading total confusion with their wilful practices of watering down diagnostic criteria to the point of meaninglessness, their devotion to CBT in the face of endless evidence of null effects, their total disregard for scientific rigour, their aggression towards informed, constructive critics and their willingness to attack the very people they claim to be helping in the furtherance of their careers.

We need them gone.
 

Countrygirl

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Pull yourselves together folks !
I've been trying to do that for nearly 40 years @eafw, but here I am propped up on the sofa with cushions struggling now to cope with my ever-deteriorating health and pain. Where did I go wrong?

I know! It is obvious! It is a lack of moral fibre. Or as the wonderful Caroline RIchmond claimed in the BMJ in her ....remarkable............article on ME, my womb has wondered off. (I wish it would) (Remember that?)

I am sure you can relate to Caroline's reference to your illness eafw.:D
 

Molly98

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We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
Correction should be I know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).

A lot of scientist, researchers, doctors and patients have know quite a bit for a long time.

Some still dismiss it as a non-illness;

C
orrection should be - I have spent my entire career dismissing it as a none illness ( and still believe this but can no longer say so because its too embarrasing but all my research buddies from Holland believe this too)

How have we arrived at a position where the biggest reason for teenagers to miss school long-term is rarely studied and society allows so few to receive treatment?

Y
ou need look no further than your own mirror Ester dear although your Buddies share the responsibility too.

Some people say that because we haven’t worked out the biology, the illness must be psychological. This is an extraordinary conclusion: there are plenty of illnesses we don’t understand, but that doesn’t mean we dismiss them as psychological.

Err, they are extraordinary conclusions that you and your buddies have been making and basing your therapies on for years, why the sudden change of tune?

So what does the field need?

You to make a swift and Graceful exit first and foremost.

So this is about perparing the territory for MEGA as well as trying to justify FITNET