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

[taniaaust1]

Re: the latest broadcast appearance. I predict the usual faux victimhood, carefully placed questions and opportunities to spin the usual line. Yet, if we were actually to list all the things done to ME sufferers by UK medics, psychs and the NHS, there would be public outcry. There is no way that all these media appearances and articles are a coincidence. It's an orchestrated campaign in the face of mounting biomedical evidence and a much vaunted trial that has now collapsed and received international condemnation from those who've been paying attention. .

Unfortunately I do think its working some for them, all this attention on this new trial for children (and that kids have a different kind of ME/CFS to justify it) has and is taking media attention away from the failed PACE trial. They are working to move on from that failed PACE trial as fast as they can.

 

[taniaaust1]

Patients are protesting and these movements are growing and becoming more organized. There has been so much spin and propaganda that patients, and patient-organizations have got wise to it, have developed skills at spotting it, and are challenging it.

The easy old ways are gone. The real question now is can researchers who have spent years carrying out poor quality research along the lines of PACE truly adapt to produce worthwhile research that meets the standards that are now expected? I think the answers is likely no,

They wont change and do good research, they cant as if they do it will be clearly shown that what they are doing doesnt work and they will be then out of this field. If they want to stay in it they have to keep misrepresenting things and twisting things and doing biased bad research.

 

[taniaaust1]

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.

yes so? Its almost laughable the way she goes about trying to mislead there by that example she gives off. Just cause something has a biology base doesnt mean that you psych people think its not psychological so how does this example imply that you cant be secretly thinking its psychological?

eg we know that depression has a bases in being biological eg low serotinin yet its still of cause a psychological illness!!. By giving the example she gave, she tries to imply here that she cant believe something is psychological when it has a biological base but of cause she can and does.

to Crawley. We've seen this deceptive tactic now used on too many other occassions Crawley (Dr Wessely went to using the same kind of deception years back) and we know you enough now to know how you twist things. So please quit and go and leave us all alone. You are harmful to our community with your badly done studies etc. We do not need you or the bad research you do. Leave the research funding to the better scientists!

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.

and what's the bet that Crawley wishes to be the one leading or guiding these NHS studies well into the future! So yeah she wants the NHS to be the ones doing all these studies.

 

[taniaaust1]

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.

Crawley if you read this maybe some logical would take you far. If you see someone with a broken leg even if you didnt know what a broken leg was but saw bones all sticking out of a leg and blood going everywhere, I think anyone could just that wasnt a psychological issue as being the case of the break. Maybe you should apply this same kind of logic to ME.

Psychological caused illnesses do not make people run things such as fevers, break out in rashes and so many of the other things which happen commonly to ME people which clearly are not psychological issues. It isnt debatable that ME is a psychological caused illness anyone not working for insurance companies without having been mislead on the illlness should be able to rule out that cause.

 

[loops]

There is a kind of chasm that those with our kind of illnesses fall.

I recently had patches of inflammation and bleeding from my bladder. This was investigated by cytoscopy to check for cancer....apparently all was OK. After infection was also ruled out. I asked what could cause such symptons. Interstial Cystitis was mentioned but the doctor said not to Google it because it was a 'psychosomatic condition'.

Funny that your brain can cause your bladder to bleed.

 

[eafw]

Apparently EC will be on BBC again tomorrow

I am listening to this at the moment. It's as terrible as expected.

http://www.bbc.co.uk/programmes/p04cd54b

she is justifying fitnet by saying that fitnet cures quickly, and the only reason that the control group got well over time is that they were switched onto fitnet after a year

 

[Valentijn]

she is justifying fitnet by saying that fitnet cures quickly, and the only reason that the control group got well over time is that they were switched onto fitnet after a year

Funny that they have to sabotage their own trials by removing the controlled aspect to allow them to say the invariably null long-term results aren't meaningful. Again, how do these clowns keep getting funded?

 

[Jenny TipsforME]

Funny that they have to sabotage their own trials by removing the controlled aspect to allow them to say the invariably null long-term results aren't meaningful. Again, how do these clowns keep getting funded?

Yes my thoughts listening are, have I misread that trial?
Then hang on, why bother doing the follow up paper if you've made the results meaningless?!

 

[2kidswithME]

It’s only one of the biggest reasons for them to miss school according to your telephone survey of their parents. Great diagnostic practices from the epidemiologist of the MEGA trial. Sure I’m united in the push to find blah blah.

Thanks,@TiredSam, great post!

EC is not the first to have studied missing school. You might wish to refer to Dowsett EG and Colby J ‘Long term sickness absence due to ME/CFS in UK schools; an epidemiological study with medical and educational implications’ Journal of Chronic Fatigue Syndrome, 1997, 3, 29-42.

From my perspective, missing only 1 day a week of school, while serious from an educational perspective, is 'mild'. My son missed three years, before starting back on one lesson a week for a year, before adding a second subject (and coping), and then moving into A levels, where he did 4 subjects over 3 years -- by which time he'd recovered (as far as we can tell) and has gone on to uni with no ill effects, in his fourth year now.

(Will add that while he was out of school he had other provision, a combination of online courses and home tutoring, well spaced, which allowed him the rest he needed; this was based on sensible advice from Tymes Trust. Even so he had no other 'life', and most of all he hated missing out on school and all that goes with it. At one point he said, quite wistfully, 'I just want to be a kid at the back of a class....', with home tutoring he was always 'at the front', and he disliked that intensely.)

Missing one day a week, if you take it literally, is also poor from the pacing perspective, as more likely they are missing one lesson a day (out of, say, five), so perhaps dropping one subject. Still 'mild' by all counts.

That 'study' by EC based on parents input only is very poor, and does not give me much confidence in her further proposals!

 

[Jenny TipsforME]

If you don't knowthe background, I think Esther Crawley comes across really well actually. she seems very sensible and calm. Which of course contrasts withthe impression created of a few ill-informed, unstable opposing patients

 

[A.B.]

Yes my thoughts listening are, have I misread that trial?
Then hang on, why bother doing the follow up paper if you've made the results meaningless?!

Pseudoscience imitates science.

 

[Jenny TipsforME]

I noticed today and Tuesday that what she describes in detail is common garden pacing and commonsense. it is probably what all of us do: even out activity, try to improve sleep. This isn't what we object to, of course not.

Perhaps we can get some more traction by sometimes agreeing with what sounds sensible, and then calmly stating the specifics we object to? Portraying the public image that we are even better informed and more logical

 

[Jenny TipsforME]

I actually think that teaching kids some pacing tips via the Internet could be a great idea, as could supportive chronic illness counselling on Skype.

I object to the CBT elements, especially if too focused on increasing activity.

BUT I strongly object to this being the biggest ME trial to date! that £1m is need for biomedical research, which Crawley herself says is needed. CBT research does not move the fieldof ME forward.

 

[Valentijn]

Yes my thoughts listening are, have I misread that trial?
Then hang on, why bother doing the follow up paper if you've made the results meaningless?!

Because trials with a long-term followup get rated better in systematic reviews of the literature. This way they're rated both as controlled and as having a long-term followup. It's definitely a tactic for gaming the system, and they should be getting slapped for it.

 

[Jenny TipsforME]

Because trials with a long-term followup get rated better in systematic reviews of the literature. This way they're rated both as controlled and as having a long-term followup. It's definitely a tactic for gaming the system, and they should be getting slapped for it.

It's a benefit even if the results are null? Ever feel like you're living in a Lewis Carroll book?

 

[Cinders66]

I am listening to this at the moment. It's as terrible as expected.

http://www.bbc.co.uk/programmes/p04cd54b

she is justifying fitnet by saying that fitnet cures quickly, and the only reason that the control group got well over time is that they were switched onto fitnet after a year

I tuned in when hes talking about mindfulness and he still managed to drag CFS into it due to it being a supposed mind body illness, not helped through trying to split the two. This narrative making cfs not a proper physical illness (stress can cause MS relapse but no one calls that mind body) is probably the most damaging thing the BPS lot do

 

[TiredSam]

I was so caught up in my own rant that I failed to realise the full significance of this bit:

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

So mentioning all the biological stuff was just to concede that the trigger or onset may be biological, but "once the illness has passed" can only mean that the child isn't really ill any more, but is somehow being kept sick by something not biological. What could that perpetuating factor possibly be? Thank goodness Esther the Circle-Drawer is going to investigate it for us, I wonder where her evidence will lead her?

 

[Chrisb]

Are they not going to tie themselves in logical and linguistic knots with this approach? Surely within the terminology which they prefer she must mean after the initial disease has passed. Do they not regard illness as merely the behaviour which may, or may not, be associated with disease.

I may be wrong. The brain refuses to function today.

 

[AndyPR]

Just spotted this on the Open Medicine Foundations website

Additionally, the presentation and course of the disease is often different in children. Dr. David S. Bell, a member of our ME/CFS Scientific Advisory Board, provided us an in-depth description of pediatric ME/CFS.

From the linked file - http://www.openmedicinefoundation.org/wp-content/uploads/2016/03/ME-in-Children.docx

Instead, providers usually suggest that the symptoms are not that bad, and that some exercise or counseling can remove them. Counseling is useful if an adolescent is coping poorly, and mild exercise can be of use when someone with the illness is improving spontaneously. But too often it precipitates a relapse, which is why the IOM suggested the name Severe Exertion Intolerance Disease4.

There are minor differences between adolescent ME/CFS and the adult ME/CFS. One is that abdominal pain is more common5 while this symptom is not even a part of some adult symptom criteria3. In addition, facial flushing is more common in teens9. I recall once when walking down the street in Lyndonville, I saw a teen with bright red facial flushing. He became ill within one or two days and remained ill for years. I made the mistake once of calling this a rash, but it is not a rash, it is flushing – the same as an adult can have when taking niacin. In some of the early outbreaks, this flushing rash is also mentioned and considered a standard symptom, one that involves the autonomic nervous system, as this part of the nervous system controls the diameter of the blood vessels.

Quite different to Esther trying to form adolescent ME into a different disease.

 

[snowathlete]

They wont change and do good research, they cant as if they do it will be clearly shown that what they are doing doesnt work and they will be then out of this field. If they want to stay in it they have to keep misrepresenting things and twisting things and doing biased bad research.

I'm not expecting that they will, but in theory there is nothing to stop them picking an appropriate cohort, using objective measures, show that CBT and GET is an absolute shocker and then say the MRC there are no treatments for this disease group, all we can offer is pacing so we must get more funding to do proper biological research. And then they could apply to do such research, and use sound methodology to show it was not just lip service. There really is nothing stopping them doing this, and this is what you would expect to see from researchers who were serious about progress into the disease. On the flip side, if they aren't serious about helping provide something useful for patients, you would expect them to carry on as before, peddling therapies that science has shown do not work, and which patients have rejected as useful and harmful.