Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

[Dx Revision Watch]

In March, this year, Dr Esther Crawley* gave a presentation to a Dorset patient support group entitled “The Future of Research in CFS/ME” [/B during which she also spoke on XMRV research and delivered some very controversial comment on the operation and findings of the Whittemore Peterson Institute (WPI).

It is understood that the presentation was attended by Annette Brooke (MP for Mid Dorset and North Poole) and Vice-Chair of the re-formed APPG on ME and also by Bournemouth based Lightning Process practitioner, Alastair Gibson (Withinspiration), who is a collaborator in the research team for the Bath/Bristol LP pilot study in children, for which Dr Crawley is lead researcher.

Published today, on ME agenda, is an unofficial transcript that has been provided to me to supplement the partial transcript that was first published on ME agenda, in August. The transcript includes the text of most of the PowerPoint slides that were used during Dr Crawley's presentation.


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Dorset CFS/ME Society
Annual Medical Lecture

27th March 2010

The Future of Research in CFS/ME

Esther Crawley

It’s a great pleasure to be here, everybody, and I’m really glad actually that my talk actually fits in very nicely with what William’s just said. Phew!

I’m going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So you’ll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on epidemiology.

And, actually, on a sort of personal level, [I am] particularly proud because my gorgeous son is sitting in the front row, grinning from ear to ear about his Mummy, so that’s a great joy and it’s lovely to see so many of you again.

Slide 1: The future of research

• Providing services and treatment
• Epidemiology
• Different disease types
• Evaluation of treatment
• Impact

• Understanding the cause
• Genetics and GWAS
• Infection and XMRV?​

So in the talk today, I’m going to talk about the future of research and I believe there is strongly… that there are two really important arms for research in chronic fatigue syndrome. The first is about how we [are] actually, really quickly, going to change what happens to patients and carers and, to do that, we need to understand much more about the epidemiology, and my children asked me what that meant this morning, and that’s the study of populations. We need to understand more about who it affects, how to treat it and about the different disease groups, because you all know that there are different types of chronic fatigue syndrome.

And the second arm of research is the arm into aetiology: what causes chronic fatigue syndrome. And, of course, that’s the bit that we researchers really enjoy doing. That’s the bit that makes us excited. I don’t actually agree that research is demeaning. I think that I’ve got the best job in the world, actually.

And the aetiology and the pathogenesis and my PhD was genetics. That’s what really excites us. But, realistically, it’s not going to have the same gains at a patient level or a population level as understanding more about the illness.

And, realistically, the aetiology research has to be done on a background of understanding much more about what this illness is, otherwise we’ll get the wrong answers.

So I’m going to talk about both.

And I couldn’t resist talking about XMRV. I think we have to know about what’s actually happened and I will discuss that as well and what the implications are.

So, the epidemiology. What is this illness? Who does it affect...

Read the rest of this transcript >>


*Dr Esther Crawley

Dr Crawley, FRCPCH, PhD, is a Senior Lecturer at the University of Bristol, a Consultant Paediatrician and clinical lead for the Bath CFS service. Dr Crawley’s specialist CFS service for children and adolescents is reported to be the largest regional paediatric service in the UK and also provides services nationally.

Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group and gives presentations around the NICE guideline CG53 and the CFS/ME Clinical and Research Network.

Dr Crawley had chaired the CFS/ME Clinical Research Network Collaborative (CCRNC), now reformed under the new name “BACME”, for which Dr Crawley continues as chair.

Dr Crawley is a member of the MRC’s “CFS/ME Expert Panel”.

In the last couple of years, Dr Crawley’s research team has been awarded considerable sums of funding for CFS studies and Chronic Fatigue studies in children – including a 873,579 NIHR Clinician Scientist Fellowship award, last year. She has also received funding from patient organisation, Action for M.E. (49,650).

Grants awarded to Dr Crawley during 2007-09 here: http://www.bristol.ac.uk/ccah/grants/

[1] Radio 4 Case Notes: Dr Crawley on CFS clinic approach, November 2007:
http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml

[2] RNHRD Bath Chronic Fatigue Syndrome/ME Service for Children & Young People:
http://www.rnhrd.nhs.uk/departments/chronic_fatigue_syndrome_children.htm

 

[fred]

Thanks for this, Suzy.

A quick scan found this interesting quote. I am not sure which disease she is studying but I am sure that it is not ME.

So this illness is really, really massively underdiagnosed and, if you take this further, what we found is in these children, for several of them, given a little bit of advice about sleep they were able to turn the illness round very quickly and, in fact, the majority of these children, undiagnosed ones, were better within six months, having had access to treatment and went back to full-time school.

 

[fred]

We’ve put a grant into the MRC. It has all of the people working in research and genetic research, [they] have all got their names on the application to the MRC. “Please give us 2 million so we can do this study.”

Please don't say that the UK Medical Research Council is actually going to give this woman 2.5 million for a genome wide association study on ME.

Where in the world do you think we can do a genome-wide association study? [Ed: Waits for audience response] Here. Here. England is the only place in the whole world where we can do this type of study. Why? Because we set up a large collaborative of clinical centres and patients in clinical centres and patients want us to do this study. So, next time you go and see one of your clinicians, if we’re lucky with our funding, and we hope we will be, you may be asked to spit in a pot and, if you are asked to spit in a pot, please do, because this is how we’re going to tackle this problem.

It's official. ME will be cured by getting patients to spit in a pot. Simples.

 

[Riley]

I remember reading some of this a while back. Her attacks on the WPI are truly bizarre.

 

[Min]

Which pot shall I spit in? or will a bit of advice about sleep cure someone who's had severe ME for 24 years as fast as it miraculously cures the children she claims had ME.


Anyone who was responsible for the NICE guidelines on M.E. should be hanging their head in shame, not being given grants for further studies into an illness they haven't a clue about

 

[Dx Revision Watch]

I remember reading some of this a while back. Her attacks on the WPI are truly bizarre.

Yes, I published the latter half of the presentation in August - this is the full transcript + text of slides.

I'm given to understand that Dr Crawley has been made aware that the WPI moved into their premises shortly after she had given her presentation.

 

[fred]

And we’ve looked at the prevalence of disabling fatigue in children at 13 and, by the time you’ve taken off all of the other illnesses that could cause fatigue, the prevalence of fatigue at 13 is 4.7% in children. Now, this isn’t just children feeling tired. This is 13 year olds who are not doing the things they want to do because of fatigue. So again, that’s much, much higher than previous Government estimates.

If you extrapolate 4.7% to the total population, you get over 3 million people. Methinks that either her maths or her diagnostic criteria (or both) are screwed.

 

[fred]

And this is an amalgamation of all the Department of Health funded clinical services, plus all the research groupings, for chronic fatigue syndrome in the UK. And there are 13 centres, 38 adult clinical teams and well over 7,000 adults and children that are seen every year.

7,000 out of 250,000 estimated ME patients equates to just 2.8%. That's not a great hit rate. And how much does it cost to see less than 5% of all UK sufferers each year? Wouldn't this money be better spent on biomedical research that may lead to efficacious pharmaceutical interventions that can be prescribed by existing GPs and infectious disease specialists, and without the need for additional support infrastructures ? That is a rhetorical question.

 

[fred]

And now Im going to talk about the perhaps more interesting, definitely more cool, bit of research, the one that we all enjoy, but, probably is going to have less of an impact for you as patients, but its definitely more interesting to talk about.

Oh, really? Aetiology is not going to help us at all? Looks like the WPI and the NCI and the Cleveland Clinic and the FDA and the NIH are all on the wrong track. Shucks.

We know that chronic fatigue syndrome is genetically very heritable. We know that this illness runs in families. There are loads of twin studies to show it runs in families and you are basically genetically vulnerable. Its not a given that your children are going to have it. Its rather like asthma or bad backs or my family all being giants but it makes it much more likely.

And then you can have your genes all your life. You then need your environmental insult and the environmental insult for most people is which virus.? Which is the most common virus for chronic fatigue syndrome? [Ed: Waits for response from audience] Glandular fever virus, yes. The Epstein Barr virus, streptococcus, and so on, are all very common and then you have your maintaining factors. Thats the ones that keep you sick and that can be a variety of different things.

So thats our model.

I think that one is going to need a little more work, Esther dear.

 

[urbantravels]

She has the "insult" part down pretty well, though.

 

[Orla]

Please don't say that the UK Medical Research Council is actually going to give this woman 2.5 million for a genome wide association study on ME.



It's official. ME will be cured by getting patients to spit in a pot. Simples.

Fred maybe the patients spirits at least could be helped by being allowed to spit elsewhere other than in the pot (i.e. at some of these people)?

I have heard Esther Crawley doesn't distinguish between Chronic Fatigue and CFS.

 

[Desdinova]

Yes the just practice 'Good Sleep Hygiene' and your pesky Fatigue will just fade away. What a joke if simply following proper good sleep hygiene solved those several children "for several of them" then they most certainly did not have ME/CFS. I saw a sleep specialist who started to give me the good old sleep hygiene routine. I cut her off by stating the steeps to good hygiene, (she was surprised that I knew them) and telling her I already follow them but they don't work in alleviating my symptoms. Her reply was Are you sure, do you really follow them are you really sure?

 

[lancelot]

The UK is a real hindrance to solving ME/CFS. There is never anything good coming out of there.

 

[urbantravels]

The *patients* in the UK, on the other hand, are setting a fine example for the rest of us in tireless advocacy.

It might be that the more open oppression they experience galvanizes the patient community more, plus the unifying experience of everyone having to deal with NHS (versus the capitalistic paradise of the US where we all just have to fight individually with our individual health insurers, if any.)

Something good could come out of the UK - a giant scandal about how patients with a physical illness were denied proper medical care and benefits for so many years based on no sound science. It would be so lovely to see the vicious tabloid press of the UK decide this was as big a deal as, say, members' expenses.

 

[Dx Revision Watch]

...I have heard Esther Crawley doesn't distinguish between Chronic Fatigue and CFS.

Yes, she seems to use the terms "fatigue", "chronic fatigue" and "chronic fatigue syndrome" indiscriminately. One of the cases she talks about in the BBC Radio 4 "Case Notes" broadcast on her approach to management of CFS was that of a child with fatigue following head injury.

Here's the URL for the transcript of the BMJ Learning Module podcast:

http://www.forums.aboutmecfs.org/sh...dy-on-Children&p=102372&viewfull=1#post102372

Transcript of Dr Esther Crawley / Professor S Wessely

 

[SarahTees]

http://www.youtube.com/watch?v=FGtChQPNUQw

Funny but dreadful film of Esther Crawley...........

 

[fred]

Crawley on BBC Radio 4 in 2007.

Yeah there's lots of names for chronic fatigue syndrome and the patient group usually call it ME or myalgic encephalitis or myalgic encephalopathy and that is because that actually described their symptoms, so muscle aches and pains and cognitive or thinking problems. In fact doctors don't like that because when you actually look there's no evidence of muscle inflammation. And so doctors decided to call it chronic, which means long term, fatigue and syndrome, which means a collection of symptoms. Patients didn't like that, so we're now ended up with CFS/ME is the actual official terminology.

http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml

 

[garcia]

Esther "makes my skin" Crawley

 

[Marco]

Esther "makes my skin" Crawley

Yeah!

CREEPY CRAWLEY!!

Well, at least I can thank Esther for making me feel like an 8 year old again.

 

[lancelot]

Something good could come out of the UK - a giant scandal about how patients with a physical illness were denied proper medical care and benefits for so many years based on no sound science. It would be so lovely to see the vicious tabloid press of the UK decide this was as big a deal as, say, members' expenses.

Their government run media and government run healthcare under the control of psych's will easily crush whatever CFS/ME scandal comes out just like they have always done.