Transcript of Dr Esther Crawley / Professor S Wessely
A bit Off Topic
http://feeds.bmj.com/~r/bmjlearning...ue_syndrome_ME_an_update_for_primary_care.mp3
Transcript of Dr Esther Crawley / Professor S Wessely
BMJ learning Audio Module
Morant: Hello I'm Dr Helen Morant a clinical editor at BMJ learning. Welcome to this audio module on chronic fatigue syndrome recorded in March 2010. Chronic fatigue syndrome or ME has been a prominent topic in the medical press recently. We asked some experts in the field to talk to us about the GP's role in helping patient with the condition.
Dr Esther Crawley is a consultant senior lecturer at the University of Bristol and a paediatrician with a special interest in CFS/ME. Shes currently the Chair of the British association CFS/ME and was on the guideline development group for the most recent NICE guidelines. Professor Simon Wessely is chair of the department of psychological medicine at King's College London and he has helped to establish and now works in the first NHS unit specialising in CFS/ME
First, Esther Crawley explains what chronic fatigue syndrome actually is.
Crawley: Chronic fatigue syndrome is also called a lot of other names such as Myalgic Encephalomyelitis or myalgic encephalopathy (sic). Its defined by the National institute of Clinical Excellence (NICE) as disabling fatigue without another cause. In adults, the disabling fatigue must last at least four months or must have been present for 4 months and in children its three months. There are a variety of symptoms which are usually present. NICE suggests that at least one symptom must be present before a GP can make a diagnosis. The symptoms include problems with memory and concentration, unrefreshing sleep, headaches, nausea, muscle aches and pains joint aches and so on.
Simon Wessely: It is a controversial and rather difficult area of medicine, its certainly not new and it is defined on symptoms alone, on the history alone, where you have a characteristic pattern of someone with severe physical fatigue and fatigability, in other words its not just that they feel, you know, very tired all the time but physical effort makes them worse and quite considerably so and they also have mental fatigue and mental fatigability. So mental fatigue also leaves them in a state of exhaustion and they have other symptoms as well such as muscle pain, mood change, sleep disturbance, they often gain weight and various other symptoms. So its defined on symptoms alone which always makes it a difficult category for medicine along with many other similar disorders.
Crawley: I think its important that GPs explain to patients about the different names that the illness can be called. Some patients will come with a preference to use one name as opposed to another. On the whole it seems to make sense when youre discussing patients or referring patients onto services to use the name adopted by the NHS and that is chronic fatigue syndrome/ME which is a name that has been derived by committee. Patient groups and patients tend to prefer ME and doctors tend to prefer chronic fatigue syndrome. Weve agreed collaboratively to use both in the diagnostic label CFS/ME. Other names that doctors sometimes use and I find unhelpful or can be unhelpful are names such as glandular fever or post viral fatigue and so on and I think sometimes the different types of names add confusion to patients.
Morant: So How prevalent is this disease?
Wessely: It all comes down to definition. Weve been doing epidemiological studies over the years and if you use a broad definition which includes, for example, also people who have co-morbid concurrent, depression, anxiety - its maybe up to 1 or 2 % of the population. If you go for a narrow definition. it comes down to about 0.2 / 0.3% - so its a bit like blood pressure, it all depends on where you draw the line - but the one thing we can say that this is certainly a definable illness in the population and it does present a not inconsiderable burden in general practice, primary care and also in medical services.
Crawley: Chronic fatigue is actually a very serious condition. Its not only more common than we previously thought but is probably one of the largest loss of earnings in the United States and probably therefore this country as well and is certainly thought to be the largest cause of long-term school absence.
In fact in children, probably one third of children dont end up with qualifications after a diagnosis of chronic fatigue syndrome and on average they miss a year of school. All the evidence suggests supporting children and adults with this condition, enabling them to have access to specialist services and getting an early diagnosis is only gonna (sic) help them not only in terms of getting better from this illness but also in terms of preventing secondary consequences of long term debilitating illness. So Id encourage GPs to make a diagnosis quickly and refer quickly onto specialist services.
Morant: What do we know about why certain individuals are more likely to suffer from CFS/ME than others.
Crawley: Theres lots of evidence that chronic fatigue syndrome is genetically heritable but is usually triggered by an environmental factor and for children the environmental factor is usually infection. In adults it often is an infection as well. One of the most common infections that we all know about is the Epstein Barr Virus but other infections seem to be particularly important. In this country it certainly might be streptococcal infections and so on.
Morant: So how should GPs respond when confronted with a patient presenting with CFS or ME type symptoms?
Crawley: Its really important to exclude other causes, so one of the things that GPs need to do when they see someone who they suspect might have chronic fatigue syndrome is to exclude other causes of fatigue and theres a set of screening bloods that GPs need to think about doing and they will send these to try and exclude psychological causes of fatigue.
The investigations are listed in the NICE guidelines and include full blood count, ESR, CRP, CPK, celiac screen Ferritin in children U +Es, LFTs and a urine dipstick, as well as calcium and phosphate brain function.
Morant: There has been a lot of controversy about CFS/ME and Esther Crawley is keen to counteract some common misconceptions.
Crawley: There are several myths that are really, you know, have been discredited now, for example one of the myths was that it did not exist in primary school age children. Theres lots of evidence that it quite often starts in children particularly those over the age of seven and eight. Another myth is that it doesnt exist in old people but now there is increasing evidence that it does.
There is the myth that this is an illness of upper class white Caucasians but in fact the reverse is true.
Morant: Simon Wessely explains that CFS/ME has specific indicators which can help guide diagnosis.
Wessely: You also have to look for things that arent quite right in the clinical history. Weight Loss, weight loss is not common in people with chronic fatigue syndrome at all. Most people - their weight is steady or they gain weight. We dont like weight loss. We will request usually a second opinion from a physician - and then people who have isolated symptoms for example who have fatigue and muscle pain but only after exercise and who do not have it at rest and have no mental fatigue. We like them to see a neurologist. So anything that doesnt fit the pattern and as I emphasise again, the core pattern here is intense physical and mental fatigue and physical and mental fatigability. So, not fitting the pattern we dont like - history of foreign travel we dont like - physical signs, definitely has to be investigated because there will be an alternative diagnosis. So, lets get that straight but having said, that in the majority of cases thats not going to be found and we will be left with people who do fulfil the criteria.
The next thing we would like is for the GP to give a good, confident diagnosis. Once the GP is sure this is not, you know, an unusual presentation of a lymphoma or early colon cancer or endocrine disorder lets give a clear and confident diagnosis, say yep, this is what it is - this is chronic fatigue syndrome or ME, this is what youve got. Its not uncommon, its a genuine illness, we recognise it, lets not get into the battle of diagnosis that sometimes happens. Lets not get into, oh does it exist - doesnt exist. It exists. Period. And patients need to have a good strong message theyve got something wrong with them and now having established that now lets move onto the next step.
Morant: Ester Crawley discusses what should happen after a positive diagnosis.
Crawley: Well, the NICE guide lines which were published in August 2007 detailed what should be done at every stage after screening investigations had been done there are set of things that GPs can offer patients in terms of looking at what they do each day and their sleep and so on. If patients dont get better then they should be offered access to services and that should be offered immediately if a patient is severely affected and after 3 months if theyre moderately affected, and moderately affected means not able to work full time but able to do their self care. At 6 months, if they're mildly affected ie able to work full time but not able to do social stuff. By referring to specialist services what a GP is then doing should be offering a variety of treatment that is available in specialist services and they are all detailed in the NICE guidance. And there is a variety of things you can do for patients including activity management, CBT, graded exercise and individualised treatment programmes that use components from each of those options.
Morant: The protocol is slightly different when it comes to children.
Crawley: If a GP sees a child with fatigue it is very important and the NICE guidelines say this that they are referred immediately to a paediatrician and this is to insure that other causes of fatigue are excluded, such as leukaemia - arthritis and also congenital causes of fatigue. Once other causes of fatigue have been excluded and a diagnosis of chronic fatigue is made, the GP is often pivotal in helping the child manage their condition by liaison with other agencies such as schools as well as health services and insuring that the child gets access to specialised chronic fatigue care.
Morant: Simon Wessely describes the importance of careful management of the condition.
Wessely: Treatment, very similar in large areas of medicine is about rehabilitation, its about, O.K., this has happened to you, youve been handed a particular hand of cards. Lets have a look at how you play it because there are good and bad ways of managing this illness. Now we start to look at all the secondary effects that have happened to you and a lot of people with CFS have got depressed, no question about it, and I dont mind, you know, that may upset people, but thats just simply true. We also know that there are a lot of people who've had depression are more at risk of developing CFS. So if people have got depression lets not ignore it - were gonna treat that. Some people got themselves into very unhelpful patterns of activity and you know, their activity management isnt very good - they do too much, get exhausted then they do too little to recover and thats not a very satisfactory way. Were gonna look at sleep hygiene can we improve sleep? Were gonna look at pain control were gonna look at this whole balance of rest, activity, sleep, energy and exercise. Were gonna look to make things predictable and so that theyre consistent over a period of time and then we are gradually going to look to steadily increase that over a period of what may well be weeks, more likely many months.
All the time were doing this by saying look we dont really know why you got ill. We dont know! Were not going to lie you down on the couch and talk about your mother because its entirely irrelevant we're not going to do more and more tests well what was the virus, because frankly, even if we found it theres nothing were going to do about it. Were in the business of rehabilitation. Its an approach that works and its an approach that works in many analogous conditions particularly for example chronic pain syndromes that are rather similar. It's about improving control of illness - its about improving management its about improving quality of life improving the control of symptoms and many people, and again Im quoting studies here, will do very well on this approach.
Morant: What about outcomes for patients suffering the condition?
Wessely: Around 30% of people seem to get completely better and again results vary in some services 20%, 25% it's of that order. So the majority of people dont get cured but some do.
The next big chunk, maybe another 30% improve in particular their quality of life improves, their control over their illness improves, very, very important - but they still have symptoms and they're not how they were. Another third of people, it doesnt really seem to make much difference.
Morant: Esther Crawley stresses the role of the GP is vital in managing this condition
Crawley: When GPs see patients frequently its an ideal opportunity for a GP to develop a relationship with a patient and help the patient implement an individualised rehab programmes. If a GP feels unable to start that process off then they should refer to a specialist service but once a patient is seen by a specialist service, they should have a detailed rehabilitation plan that is monitored by the specialist service and the GP can work with the specialist service to help that monitoring and that monitoring will include a variety of strategies to look at activities, goal setting and sleep and should be done with the patient, aiming for the patient to be managing their own condition.
Wessely: What we know from the studies is for people to get better they dont have to change their views of what's wrong with them - we dont have to get into these Cartesian battles that no-one ends up a winner. What we do need to look at is how they use rest, exercise, sleep and so on and how they manage symptoms, in other words the "down the line" consequences. When those change, the research shows people start to get better.
Morant: Thanks to Esther Crawley and Professor Simon Wessely. You can find links to the NICE guidelines for chronic fatigue syndrome or ME and many other useful resources at the end of this learning module. Thanks for listening and join us again soon for another BMJ learning module.
----------
Dr Esther Crawley is....
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 Crawleys 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 MRCs CFS/ME Expert Panel.
In the last couple of years, Dr Crawleys 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/
------------------
Radio 4 Case Notes: Dr Crawley on her CFS clinic's approach, November 2007
http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml
----------------
Dr Crawley is the Medical Consultant to AYME - the children's ME and CFS org.
Sir Peter Spencer, CEO of Bristol based, Action for M.E., is a non-executive director of the Royal National Hospital for Rheumatic Diseases, Bath Dr Esther Crawleys employer.
-----------------
Criticism on Facebook of Crawley's approach:
Children with CFS/ME
30 May
Peter Spearing
we have just written to Dr E Crawley as not happy with her teams approach to our daughter - everything they suggested made her worse.Also ignoring all digestion system severe problems and severe hypersensativity in Sensory Nerves ie Noise smell,light and taste and why she is sofa/bed bound 23 hours a day.Aslo ignoeing ...bladder bowel eyes and Heart symptoms.All they talk about is fatigue
[...]
Peter Spearing
No it was not Dr Crawley that diagnosed Canadian Criteria but a great independant Autonomic Nervous Specialist.We knew after 2 years of beibg so severely ill something more than fatigue condition was going on.
Different thread:
27 May
Peter Spearing
I totally agree with this our daughter has finally been diagnosed this month after 2 1/2 years of moderate - severe canadian criteria.So many other missed diagnosis are in with cfs like thyriod problems,adrenal fatigue etc.
Different thread
20 April
Peter Spearing
Hi Our daughter has had severe ME for over 2 years now 10 years old but ill with lots of viruses 11/2 years before this and medical problems from the age of 5.We were refered to Dr Esther Crawley last year.Unfortunately everything they recommeneded made our daughter worse and another major relapse this Winter.We are in the process of taking our daughter out of her clinic.We find total brain and body rest and no pressure keeps the many many many symptoms at bay.Happy to give you further info if you want it.So sorry your son is so young.
[...]
23 April
Peter Spearing
sorry to say it we dealt with one of her doctors with her advise.Everything they suggested made her worse.They ignored most the symptoms we were telling them.Our daughter started with a baseline of 21/4 hours and to could only increase by 2% a week but after 4-5 weeks relapsed/got worse and started again we tried for 5 months.We have not had any ... See Morecontact with them since last may.We find total physical and mental rest no pressure peace and quiet works.She has also had to stop all home lessons as made her so ill.If your son has true ME it will not work.The NHS do not get this illness.Our daughter has alot of neurological symptoms which are ignored.Give it a go a few very mild cases it is ok with but they wanted her to do physio and we have had private tests done and she is very exercise intolerant so told they could have damaged her heart and muscles.
Young Children with M.E/CFS (chronic fatigue syndrome)
May 29
Peter Spearing
We have now wriitten to Dr E Crawley that we want her to take Stephanie out of her care.This is due to they are ignoring and not investigating the many symptoms in her digestion system,why she is sofabound 23 hours a day and ignoring us when we tell them about Steph's severe hypersensativity to noise,light,smell and ta...ste.Also getting her to do lots of thinks that made her worse.We have taken her to an independant Autonomic neurologist and devasting results many problems with her spinal cord,brain and nervous system so have most explainations now to all her awful symptoms including mild bladder,bowels,eyes,breathing and worse in digestion,heart and sensory nerves
Discussion thread (about three months ago)
Joanne McCarthy Bazneh Hi
Just wondered if any of you have had to put your children on an activity management program & how did it go for you? (the Red, amber, green & blue )
We have been put on it by Esther Crawley... Its so so hard with a 4 year old & to be honest, i am not even sure its going to work?! I know that sounds negative, but I just cant see the improvment she is hoping for happening?
Has anyone else got any thoughts on this ir experiences?
She has also reduced his sleep... he was having 12 hours before- 6pm - 6am.,, she felt this was too much for him & we know have to put to bed later at 7 so he only gets 11 hours. She feels this will improve quality of sleep? so far..all we have had is an even more tired boy I didnt feel 12 hours was excessive for his age anyway (he's 4) but she felt it was going to bed too early?
about 3 months ago
