Following last Saturday’s interview with Prof Esther Crawley on BBC Radio Bristol, I sent the following letter to Dr Phil Hammond who hosted the programme. I think it explains a large part of the reason why patients with M.E. have problems with Dr Crawley and why we don’t want her involved with the proposed MEGA study:
Dear Dr Hammond
Thank you for putting the concerns of ME/CFS patients to Prof Esther Crawley in your interview on Radio Bristol last Saturday. Unfortunately, as I have tried to explain as briefly as possible below, her responses were largely factually incorrect. I wonder if next time you have her on your programme, you could also invite the investigative journalist David Tuller whose original in-depth analysis brought the many and in some cases outrageous defects of the PACE Trial to wider attention. This led to numerous condemnations of PACE from eminent researchers in the field of ME/CFS. Here are just two of them:
Prof. Ronald Davis of Stanford University said: “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”
Prof. Jonathan Edwards of University College London said: “It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”
PACE’s recommendations for the use of CBT and graded exercise therapy (GET) for ME/CFS have frequently been reported by the British media but the important work of Mr Tuller has been ignored, so grossly distorting the information which has been made available to the British public. It would be an invaluable service if your programme could help to redress this imbalance.
When asked about the recent PACE reanalysis on your programme, Prof Crawley replied as follows:
“The re-analysers first did the reanalysis based on what the authors originally said they were going to do. That reanalysis is entirely consistent with the original results. Then they did the reanalysis using a different definition of recovery that was very much harder to reach and the trial just wasn’t big enough to show a difference and they didn’t show a difference.”
This is incorrect. What actually happened was that the PACE authors stated their original definitions of recovery in their protocol but then used different definitions of recovery in their published study. What the re-analysers did was to re-analyse the data in accordance with the recovery definitions in the original protocol i.e. the way the PACE authors originally said they would do it. They found that the results so calculated revealed no statistically significant benefit for CBT or GET. They also showed that the results using the amended recovery definition (and published in the PACE study) had shown benefits approx four times higher. The PACE authors appeared to have changed the definition after completion of the study so that they achieved the results they wanted.
This was only one of innumerable flaws in the study. Even the Oxford criteria which were used to enlist patients onto PACE have now been ‘retired’ by the medical authorities in America because they are known to include patients with other fatigue conditions. Accordingly, CBT and GET are no longer recommended treatments for ME/CFS in the US. Once you discard the studies which used the erroneous Oxford criteria, the evidence to support their use no longer exists.
Prof Crawley also said on your programme that patients had misunderstood the FITNET study in the Netherlands. She said that there was no difference between the two arms of the study at long-term follow-up because most of the patients in the ‘standard care’ arm had decided to also try FITNET once the original six month study had come to an end. In actual fact, if you read the publication, you will see that less than half of ‘standard care’ patients (32 out of 67) later tried FITNET, so this does not explain the outcome after all.
In spite of all this, Prof Crawley still claimed on your programme that there is good evidence for the use of GET and CBT and that PACE is a ‘great, great trial’. Even from the examples I have given above, it should be obvious that this is not the case. There are many more issues with PACE I could have cited. Most of them appear in David Tuller’s critique. It is a long read but a brief look at the summary (near the start) will tell you a lot.
Prof Crawley also said on your programme that patients were trying to stop her doing biomedical research into ME/CFS (the so-called MEGA study). In actual fact, patients do want such research. It’s just that some of us don’t want Prof Crawley involved because we are concerned about i) her continuing support of the now discredited PACE trial and the biospychosocial model it purports to support and ii) at risk of being impolite, the slapdash way she does science.
I expect you are aware of her ‘CFS at Age 16’ study which used data from the ‘Children of the Nineties’ project to assess the prevalence of ME/CFS in 16-year-olds. This is where she gets the ‘1 in 50’ figure she uses, but it is based on questionnaires about fatigue filled in by the children and their parents with no medical examination or any attempt to exclude other conditions which might be causing the fatigue. Neither is there any requirement for the cardinal symptom of post-exertional malaise. As someone who regularly diagnoses ME/CFS, you must know how much skill this requires and how inadequate for diagnosis is the method I’ve just described. Prof Crawley basically selected children with generic fatigue but called it ME/CFS and now presents the (grossly inflated) results as definitive figures.
And have you read the protocol for her forthcoming FITNET study? For that, she seems to be using a subtly altered version of the NICE diagnostic guidelines. These are intended for clinical rather than research purposes and even then apparently many of the NHS clinics don’t use them because they are far too broad and pick up many people who don’t have ME/CFS. Yet for FITNET, Prof Crawley is using even broader criteria. As I say, she has subtly altered the NICE criteria so that they require as the core symptom ongoing ‘fatigue’ rather than ‘post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)’ as is stated by NICE. So once again we have a broader description of the illness.
To be perfectly candid, it seems to me that Prof Crawley’s research, rather than helping us understand ME/CFS, is simply spreading further confusion by the unnecessary use of a series of heterogeneous, unduly broad descriptions, all of which she then declares to relate to the same condition.
The long and the short of it is that there is M.E. and there are other conditions causing fatigue. Some of the latter (such as depression) may well respond to GET and associated CBT. Judging from her diagnostic criteria, I even suspect that some of Prof Crawley’s so-called ‘M.E.’ patients may be otherwise healthy teenagers who have got into the habit of sleeping in too late in the mornings – but once again they will be helped by the GET/CBT. So it’s great that she is helping all these people, some of whom have very distressing conditions. But she (and the PACE proponents in general) are making no proper attempt to distinguish between these and the patients who have genuine M.E. and are likely to be harmed by CBT/GET, often to the extent of it causing severe long term, even permanent, disability. There is increasing research evidence to illustrate that such patients have an abnormal physical response to exercise, so demonstrating the physical reality of PEM (see examples from Newton and Van Ness). It is vital that children – and indeed adults – with this condition are spared the imposition of the inappropriate therapies GET and CBT which can condemn them to a life of extreme disability. Many of us patients are doing all we can to put a stop to what it seems to us amounts to abuse, and which is all the more distressing when applied to children. We should appreciate anything which you and your programme could do to help us in this battle. All we are interested in is bringing out the truth. A discussion between Prof Crawley and David Tuller might serve as an important first step toward this.
Thank you for reading…
P.S. By contrast to the Crawley-dominated Radio Bristol show, there was a very good feature on M.E. last Monday on BBC Radio Scotland, with contributions from Dr Shepherd of the ME Association and from patients, some of them very powerful indeed. Thanks go to Radio Scotland and to Kaye Adams who hosted the show. It is quite long but it is well worth a listen. The M.E. feature starts about 1-40 in and continues after the news.
spoonseekerdotcom 
Very well written letter. Let’s hope it at the very least gets him thinking.
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Thanks, yes. I’ll just be glad if he reads it. I’m not really expecting a reply, not least because he actually works in Esther Crawley’s clinic.
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He supports her and the discredited PACE lot
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Phil Hammond came to the presentations by Mark VanNess and Nigel Speight following a screening of Voices from the Shadows in Bristol 2014. I appreciate that he made that effort, whereas Esther Crawley and her BU research colleagues didn’t bother to make the trip just a mile or so down the hill. So I think Hammond is perfectly well aware of the harm that can be caused to children by professionals like Esther Crawley, but choses to support her and ignore this aspect of his boss’s behaviour. I described one such case in this presentation. http://voicesfromtheshadowsfilm.co.uk/2016/presentation-for-belfast-6th-june-2016/
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Thanks for the link to your presentation, Natalie, which i found very interesting and worrying though at the same time not surprising. I had heard whispers of this refusal to recognise severe ME and the serious consequences it can have but, perhaps not surprisingly, people seem reluctant to talk about it openly. My letter may have seemed critical but I suspect it only exposes ‘the tip of the iceberg’ in terms of what is going wrong.
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Re “Standard Care” in FITNET – I’ve a feeling I’ve seen that it was actually CBT/GET. May explain the cracking 8% rate.
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I’m not sure about the Dutch study but according to Prof Crawley’s protocol for her FITNET trial, patients in the standard care arm are asked to increase their level of activity by 10-20% each week until they reach up to 8 hours per week of cognitive activity. So no, I would not be optimistic about the success of such a regime. But the devil is in the details of course. How strongly is such progress ‘encouraged’ for instance? And what sort of rate of progress is expected in the FITNET arm? I can’t seem to find any information on that.
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Thank you for writing this. It’s an excellent letter.
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Good letter, but I think you will have your work cut out to get any sensible treatment from this man.
As an habitual Radio 4 listener for most of my life, I have cringed at his attempts at a ‘comedy’ career for decades. It seemed wrong, right from the outset, that a GP thought it was OK to use his ‘quaint’ patients as a source of amusement to his colleagues, let alone to portray himself as a great ‘wit’ to the public at large, at their expense. I could not understand how he would still get any patients after that: I certainly would not go near any practice of his.
Unfortunately, he is the epitome and proof of a stereotypical trait of far too many GPs, and he is just one of a number who made it into comedy, but, whereas, others, seem to be able to do this without making their patients the butt of their ‘jokes’, he has been making me cringe with it for decades, and wonder why anybody thinks it’s funny and continues to employ him to go on doing it. The BBC does seem to promote some very unfunny people on occasion.
He is a prime example of the type of cynical, patronising, and bigoted, while thinking he’s funny, GP, that so many of us have to put up with when we are desperate for help and have nowhere else to turn. One I had, who looked rather like him, and even spoke with a similar snidey accentuation, actually told me to ‘f off and die’ if I ‘couldn’t be bothered’ to go to the surgery to see him. This behaviour may well be being encouraged by lamentable ‘comedians’ like Phil Hammond.
So: I may be wrong: in his surgery, he may be the perfect gentleman, and sympathetic ear, and his patients may love him: but I would not risk it on the evidence of his public persona, and, on that, I doubt if you will get any sensible response. I fear you may be just reinforcing a belief we’re all just obsessed with the desire to harass superior beings with petty and neurotic concerns.
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It’s baffling and appalling that people with no empathy go into medicine. And, we’d all agree, far too common.
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Just a thought, and not just medicine, even more scary, into politics. Look up “Snakes in suits” on Google, then research by Dr Robert Hare on psychopathy. These individuals are attracted to power, manipulation, money, but zero conscience.
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That explains a lot…
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(This is my response to Spamlet – seems to be out of order. That’s ‘out of sequence’ I mean by the way, not the other meaning of ‘out of order’, though Dr Hammond might disagree.)
I’ve never seen (or heard) his comedy act but it sounds horrific. I hate jokey doctors. The humour can mask their disdain.
Hammond seemed to put the questions that people had sent in forcefully enough on the show but no, I’m not really expecting my letter to be very successful, not least because he works in Crawley’s clinic. But you never know. It might at least make him pause for thought.
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I hope I’m pleasantly surprised, but, I’m afraid that hearing he works in Crawley’s clinic didn’t surprise me. It seems that the opposition already occupies key positions of influence, throughout the media and the medical professions, and are years ahead of us in getting themselves well dug in! 😦
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Yes, it’s quite terrifying when you realise how interconnected they all are. Like Japanese knotweed running through the establishment, a toxic combination of ‘old boys club’ and vested interests.
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Excellent letter. Let us know if he replies! The Kaye Adams programme was such a contrast – if even half the media coverage of ME was that informative, I think we’d see positive change.
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Thank you for writing this letter. It is well argued and I think accurately reflects the concerns of many patients.
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Thanks for your helpful letter.
I have worked in the Bath young Persons Chronic Fatigue service for 4.5 years, and in that time have seen hundreds of young people and their parents who seek help because of disabling fatigue, usually because it is causing significant time off school. The young people who we diagnose with chronic fatigue syndrome also have significant post exertional malaise, that extends to 24 hours or more. I personally do not use the term ME as we do not test for encephalomyelitis, and I am also aware of the sensitive debate as to whether CFS and ME are the same disease.
I have no doubt as to the biological origin of CFS, and believe that it is likely to encompass a number of different diseases with different biological, environmental and genetic causations. If I was researching into the illness, I would prioritise finding biological causes and treatments in those most severely affected. I am well aware that I only see people in my clinic who are well enough to travel to it – we urgently need to find treatments for those who are housebound and most severely affected.
That said, I do believe that we help the majority of young people who seek help in our clinic. The mainstay of treatment is activity management, aiming to find a baseline of activity that can be achieved without disabling symptoms, and establishing a regular sleep pattern. This non pharmacological approach to sleep and activity stabilisation does have biological consequences, and I think this is probably what improves symptoms. Once a baseline is reached, we try to raise activity levels a little at a time but not if a young person feels unable to do so. Many young people get back to their pre-morbid activity levels with this gradual, pragmatic approach, although the recovery time varies enormously.
Cognitive Behavioural Therapy is offered to those with significant depression and anxiety, which can accompany such an unpleasant illness, and in my experience it helps young people to manage their activities and sleep better, and well as their mood. Graded Exercise Therapy is offered to those who want it, and at random as part of the Magenta trial. Once again, our experience is that young people like it and get benefit from it – although the trial should provide a definitive answer. However, it may again be that GET is only being offered to those well enough to travel for treatment, whereas those who have been harmed by it may be those who are more severely affected.
At present, we have nothing to offer to those who don’t respond to activity management, GET or CBT – and we certainly need more research to find pharmacological treatments for such a diverse and complex biological condition. The young people we see may have chronic fatigue or CFS combined with other conditions such as anxiety, depression, self harm and eating disorders. I am lucky to have 90 minute consultations and so listen to them and their families in great depth. One of the most useful things we do is to liaise with their schools to ensure they do not face legal action for low attendance and that their teachers and friends understand how unpleasant and real their illness is.
I have already tweeted that when we cover CFS again in Radio Bristol, we will hear patient voices and alternative views. I welcome the debate over PACE and as a believer in transparency of data, I hope all trials for all treatments currently in use find ways of making their data publicly available without compromising the confidentiality of patients.
I also accept that people interpret complex data in different ways, and there is seldom a simple, single interpretation.
Each patient has his or her own experience of CFS, there may be multiple patholophysiologies and ME may be an entirely different illness to CFS. I don’t have many of the answers but I do believe the service we offer is helpful, compassionate and ethical. In my time in the clinic, I have had no complaints from patients or parents and lots of positive feedback (e.g. https://www.iwantgreatcare.org/doctors/dr-philip-hammond). We are always seeking to improve and learn, and I welcome constructive challenge and dialogue
Best wishes,
Dr Phil Hammond
Sent from my iPad
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Thanks for this. It is important to have dialogue and there are many others who can do this better and more knowlegably than i can.
Just a few comments:
There seems to be a problem with your idea of CBT as a helpful management therapy and what seems to be going on in FITNET which is a FIB version which includes an implication that mothers’ attitudes can be at fault.
You mention about another programme on the subject. Given the onesided coverage of last week which has led to misunderstanding , my own mother thinks there is some great new treatment on offer, and so much hurt, and anger amongst patients , can that be soon?
Can it also include other professionals to discuss these issues, as suggested by Spoonseeker.
When it is portrayed as patients v doctors we just end up getting at best patronised and at worst demonised . There are some very knowledgable patients around as we heard on Kaye Adams programme, themselves doctors or scientists, but many others struggle with all the issues and dont put our case well.
I am pleased to see that you would be keen to do research on the most severe patients as we are the most neglected and the ones dying.
Do you have any ideas on ways forward given that Crawley’ MEGA proposal is insisting that studying severe patients would be too costly?
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Dr Hammond – Thank you for taking the trouble to send a reply, which is much appreciated. It does, however, raise a few more questions for me – if you have the time to answer them, I should be even more grateful! (Please note that several other correspondents – Joan Byrne, ruralres1, Polly Moyer and mulig4 have also left comments addressed to you.)
I am reassured to learn that the young people you diagnose with CFS all have significant PEM. I wonder why this is not going to be the case for the FITNET trial. I have checked the protocol again (page 11) and PEM only appears as an optional symptom in the selection criteria which are to be used for the trial. Why do the these criteria differ from those that you use in the clinic?
I also wonder about the 90 minute consultations you hold? That seems very long for many people with ME/CFS as I know it. Are all your patients able to function for 90 minutes at the time of assessment?
You say: “If I was researching into the illness, I would prioritise finding biological causes and treatments in those most severely affected. I am well aware that I only see people in my clinic who are well enough to travel to it – we urgently need to find treatments for those who are housebound and most severely affected.” I – and, I think, many patients – wholeheartedly agree with you there! That’s why there is so much concern that the severely affected have been left out of the proposed MEGA study – or, at best it seems, included as a token afterthought in response to patient complaints.
The way you describe the use of activity management in your clinic (“we try to raise activity levels a little at a time but not if a young person feels unable to do so”) sounds quite similar to the strategy used with some success in our local clinics here and indeed to the pacing strategy often used by patients themselves. It also appears (if I have it right) that you use CBT to help patients put this strategy into action. I have had such CBT myself – learning to deal with feelings of guilt from having to take more rest etc – and I found it useful.
Once again however, this seems very different from the strategy described in the FITNET protocol, where patients in the activity management arm are ‘asked to increase (their activity level) by 10-20% each week… until they are able to do at least 8 hours of cognitive activity a day’. The devil is in the detail of course but this sounds like a much more challenging therapist-led regime than the one you use in the clinic. Is it really different or is it just the way it is written? I would have expected the ‘control’ group to be similar to the usual care you give in the clinic.
I also find myself wondering what level of persuasion will be used in the FITNET activity management arm. The therapist will presumably be focussed on achieving the specified levels of increased activity. What happens if – as seems likely in many cases of ME/CFS as I know it. – the patient is not able to tolerate such a rapid increase in activity? You yourself report that in your experience ‘the recovery time varies enormously’ which is what I would have expected. Indeed, the patient of Prof Crawley’s who was interviewed on Radio 4’s Today programme had been receiving therapy for three years but was still only attending school for half a day at a time. Again, this seems very credible. Does the specified rate of improvement in the FITNET activity arm not seem unrealistic in comparison?
There is not much information in the protocol about the underlying philosophy behind the FITNET CBT but if it is the same as the approach used in PACE, I would assume it is very different from what you appear to use in the clinic and is more about persuading the patients that they are no longer physically ill. I also see that one of the CBT modules deals with parental ‘beliefs and behaviours’ towards their child which seems to adhere to the ‘blame the parents’ approach which so many patients find so objectionable. Once again – if I am interpreting things correctly – there seems to be a lot of difference between the approach you describe in the clinic and the FITNET protocol.
Just one last point: you mention that patients like graded exercise. My impression is that the majority of patients who have not taken heed of the warnings about GET do indeed go into it with great enthusiasm. They have been told they can exercise themselves back to health and that is a very empowering and appealing concept. That is why so many press on way past their body’s capability and end up making themselves very much worse, sometimes permanently housebound or even bedbound. The fact that you do not seem to have experienced this with your patients makes me wonder again if we are dealing with people who have the same condition! Roll on the days when there will be diagnostic markers to help us tell one from the other. I hope it is not too far away. In the meantime, I feel that researchers could improve the situation by at least using a consistent set of diagnostic criteria instead of making changes for no very obvious reason as appears to be the case with FITNET.
If you have read this far, I am very grateful to you for taking the time and effort – even more so if you are able to respond to these further issues I have raised. Thank you again…
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Dear Dr Hammond,
I come to this issue from a different perspective to many people who follow mrspoonseeker’s excellent blogs. However I also have an interest in M.E. because my sister had it for two years, out of the blue and with serious consequences for her career. Several years after her recovery she developed symptoms of what is now known as Vestibular Migraine (VM) but thankfully she made a good recovery from that, too. 10 years ago I was diagnosed (remarkably quickly) with a rare neurological condition called Mal de Debarquement Syndrome (MdDS), which some neurologists equate with VM. MdDS is an exhausting condition to live with since my body spends all day struggling to stay upright. Thankfully I was very healthy when I got MdDS and have also had lots of remission time in which to re-build my strength, so the worst of the exhaustion was and is fairly short lived, for me.
But whilst researching vestibular and neuro-vestibular conditions I have noticed that exhaustion and fatigue are often the first symptoms noticed by patients with a broad range of balance conditions. Alternatively they may be the symptoms that are causing people the most difficulty, so are the ones most regularly reported. It doesn’t surprise me that many such patients get an initial diagnosis of CFS, or that, sadly, this dx can hinder them from getting a more complete diagnosis and effective treatments.
As I’m sure you are aware, it can take many years for patients with vestibular symptoms to get an accurate diagnosis and many receive several misdiagnoses along the way which can lead to mistreatment (in all senses of the word).
So I’m flagging this up for two reasons. The first is for doctors to always be aware of the possibility of a vestibular condition as a cause for exhaustion, especially amongst children, in whom vestibular conditions are often missed. The second is that vestibular patients might make a good control group for any future studies into M.E or CFS.
All best wishes,
Polly
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Here’s a one liner from a stand up routine on TV, 25 years ago: “What about ME then? Just a way of sitting out the 1980s on benefits!” Les Dawson? Bernard Manning? No, it was Dr Phil. Laugh? I nearly cried.
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I can’t bring myself to click ‘like’. What a wit he is. And now he’s advisor to AYME!
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Thanks for this, eggtimer: from his glowing resume on Wikipedia, and his reply, above, I was beginning to think my memory must be playing tricks. I hope we can assume from his reply, that this was just a phase he was going through!
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Yes, that’s not exactly a bundle of laughs, but I think we can’t necessarily blame doctors straight out of medical school if they have very misguided ideas about ME because they aren’t taught anything about it. I’m more concerned about what Phil Hammond thinks today. The best health professionals are those who are willing to learn by listening to their patients
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That’s a fair point, it seems as though medical schools and textbooks, as well as medical journals, do patients and doctors a dreadful disservice when it comes to ME. Many doctors only learn about ME from personal experience, and a lot depends on how open-minded they are…
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In the Radio Bristol Broadcast and on the various bulletins on Radio 4 The Today Programme announcing the FITNET trial, Esther Crawly stated that many young people who present at clinic have ‘low cortisol” in the morning. Perhaps Dr Hammond could offer information about how this is determined please? What tests are done? Dr Hammond stated, “I believe that it is likely to encompass a number of different diseases with different biological, environmental and genetic causations.” This is wholeheartedly agree with.
My son was part of the 1990’s RCPCH.Fatigue Study- now it appears re-branded ‘Children of the Nineties’ study.
I still have the original copy of my return. It was study where GP practices were asked about any child with “unusual fatigue” and it was completed often by a practice nurse. The child was not involved , nor interviewed nor had to give consent if I remember.
Also in the 1990’s, I was chastened (and worse, suggested “FII” fabrication or induction of illness in a child’) by local community paediatrics for asking for this possible ” low cortisol” and other hormone disruption to be investigated, even though I was aware that significant research on “low” cortisol had been done on adults throughout the 1990’s. In 2000, went to the “London Fatigue 2000 Conference” and actually questioned Simon Wessley and Anthony Cleare about this. In parallel, I was struggling to help a son with a diagnosis of ME. I was ignored then and subsequently by statutory services. My experience was the norm not the exception sadly.
At the time, from 1999, I worked as specialist educationalist in a Pupil Referral Unit for children out of school for medical needs. All our pupils had fatigue, often brought about by multiple complex reasons, including, misdiagnoses and inappropriate medication treatments (GPs or CAMHS prescribed) and /or their personal difficulties. These included long term chronic illnesses, diagnosed ME, serious allergies, Crohns, celiac, family violence, trauma, abuse, autism, Tourettes Syndrome, eating disorders, mental ill health and just being a teenager! – you name it and we had it!
Seeing these diverse needs in kids all day every day, I became a bit of a ‘medical “expert…….. it was not hard to separate “sheep from goats” unlike the above ‘Children of the Nineties’ study or it appears the FITNET trial.
The study by Esther Crawly in a sledgehammer to crack a nut. Whilst I agree, is necessary, nay essential to provide support for children with complex needs and to liaise with education services and others, (this should be being done anyway by law and the Children’s Act), my fear is this study and the inflated claims made as to “success” will fuel the problems and culture of disbelief in others and statutory services like Social Care & Education about “true “ME and CFS,. It will exacerbate rather than resolve it.
The BBC headline, 1st November 2016 “A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialed for NHS use.” is both misleading and potential harmful if proven to be less than the truth of ME.
As to, “The disease affects one in 50 children, leading to mental health problems and missing school. The devil will be in the detail. “Esther Crawly et al, in my humble opinion, must be held to account and show due diligence by separating the “sheep from the goats” before any further work in this field of ME is agreed to. More importantly, she should attempt to make a more robust and proper, unequivocal diagnosis of ME, rather than conflate the issue with her “diverse” group of very needy young people (most of whom are what I call “walking wounded- not severely affected)” who appear to be used as a vehicle to further and build her own career and reputation. Harsh as that may seem, and no matter how well meaning her true intentions to help are, she should really walk the walk before talking the talk.
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Many thanks for your comment. I’m interested that your son took part in a study. I;m just wondering which one it was. The study which drew on the ‘children of the 90s’ project was this one: http://tinyurl.com/hv3w5xt I also have a full pdf of the study which I can send if you are interested. According to the study, these children were ‘diagnosed’ with ‘CFS’ using a parental questionnaire followed by one which the children themselves filled in. A very inadequate way to diagnose since no doctor was involved, there was no attempt to exclude other conditions, and there was no requirement for PEM. But you say that the study in which your son participated just involved a questionnaire filled in by the practice nurse and no involvement of the child at all! So that is even less satisfactory! I’m just wondering if you’re sure it was the Children of the 90s project in which you participated. According to Crawley, there had been a previous fatigue project which simply involved a parental questionnaire, which is this one: http://pediatrics.aappublications.org/content/130/1/e71.short So could it have been that one that your son was involved with? I hope you don’t mind me checking. If the ‘children of the 90s’ project really just involved a questionnaire filled in by the practice nurse then that is even more alarming!
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The study I referenced was organised by the RCPCH in 1999- 2000. An appeal was sent out to GP primary care practices initially. We were contacted by the practice nurse about it. The outcomes were published by RCPCH. A conference was convened in Suffolk regarding it to which I went with a friend who was a keynote speaker. He was an educational psychologist with a wife with very severe ME, who knew from bitter personal experience how difficult things were for these children. Suffolk at the time was a “hot spot” with a Mimi epidemic of childhood ME. It was also known to be a notorious “hotspot” of bad practice resulting in miscarriage of justice and false accusations of parental harm – ie those who refused to accept Gt Ormand Street’s psychiatric approach – Panorama named Dr Prendagast I believe…….I knew Child x from the programme and met Nigel S and the late Dr AlanFranklin through this contact. Bless the both!
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This was the one, which pre-dated the EC rise to fame and the Bath Empire and EC who who only came on the scene at the AYME conference in 2005-(which I attended and where I met her as an aspiring young paediatrician…….) it was around this time that AYME went pear shaped and lost the plot ( in my view….)………I believ it was a lot to do with EC and various calls to explore Lightening and Mickel therapy.
bjgp.org
Practices that had reported potentially eligible patients in a postal survey of the framework practices in 199910 and who had indicated an interest in the new study, were contacted by the MRC GPRF in 2001 and invited to participate in this second study.
Original Papers
The management of children with chronic fatigue syndrome-like illness in primary care: a cross-sectional study
Guitta Saidi, Linda Haines
DOI: Published 1 January 2006
Abstract
Background Most studies on children with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) have been undertaken in tertiary care and little is known about their management in primary care.
Aim To describe the characteristics of patients aged 5–19 years with CFS-like illness in primary care and to examine how GPs investigate and manage patients.
Design of study Descriptive retrospective questionnaire study.
Setting Sixty-two UK GP practices in the MRC General Practice Research Framework (GPRF).
Method One hundred and twenty-two practices were approached; 62 identified 116 patients consulting a GP with severe fatigue lasting over 3 months. Practice nurses and GPs completed questionnaires from medical notes and patients completed postal questionnaires.
Results Ninety-four patients were considered by a clinical panel, blind to diagnosis, to meet the Oxford CFS criteria with a fatigue duration of 3 months. Seventy-three per cent were girls, 94% white, mean age was 12.9 years and median illness duration 3.3 years. GPs had principal responsibility for 62%. A diagnosis of CFS/ME was made in 55%, 30% of these within 6 months. Fifty per cent had a moderate illness severity. Paediatric referrals were made in 82% and psychiatric referrals in 46% (median time of 2 and 13 months respectively). Advice given included setting activity goals, pacing, rest and graded exercise.
Conclusions Patient characteristics are comparable to those reported in tertiary care, although fewer are severe cases. GPs have responsibility for the majority of patients, are diagnosing CFS/ME within a short time and applying a range of referral and advice strategies.
METHOD
The study was carried out using the Medical Research Council’s General Practice Research Framework (MRC GPRF) (www.mrc-gprf.ac.uk), a network of representative UK GP practices. Multicentre ethical approval was obtained.
Practices that had reported potentially eligible patients in a postal survey of the framework practices in 199910 and who had indicated an interest in the new study, were contacted by the MRC GPRF in 2001 and invited to participate in this second study. Details of those practices that still had eligible patients and who remained willing to participate were passed to the research team. Nurses in these practices were asked to recruit any patients aged 5–19 years with over 3 months of severe fatigue and a significantly reduced pre-morbid level of activity, who had consulted a GP between 1 January 1999 and 31 July 2001, including those who had subsequently recovered. Non-responding practices were sent two postal reminders followed by a letter from the head of the MRC GPRF. Letters were followed up by at least two reminder telephone calls to the practice nurse leading the study.
Consent was obtained from patients and/or parents depending on the patient’s age. For consenting patients the GP and the practice nurse completed questionnaires using patients’ notes and patients and/or parents completed a postal questionnaire. Parents were sent questionnaires for 5–9 year olds, for 10–15 year olds questionnaires were sent to both parents and patients, and for 16–19 year olds questionnaires were sent to patients only.
The questionnaires asked for patients’ sociodemographic characteristics, health in the year before fatigue onset, pre-consultation fatigue duration, nature of onset, presenting and subsequent symptoms, severity, worst level of functional impairment, coexisting illness, investigations, diagnosis, medication, treatment and referrals.
The study inclusion criteria were deliberately broad as there are no agreed diagnostic criteria for CFS/ME in children and the illness can be variably labelled. In order to identify patients with CFS-like illness, a panel of four paediatricians experienced in the management of children with CFS were paired up to independently review an anonymised data set extracted from the questionnaires for each patient, blind to the GPs’ diagnosis against the Oxford criteria for CFS in adults (Box 1).11 A minimum fatigue duration of 6 months has been suggested as too long for children8,2 and in cases where this was not met, 3 months was accepted for the purpose of the review.
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It’s worth noting that Suffolk paediatrics at this time were researching a cluster of over 32 local children presenting with ME with a diagnosis, many from two schools in the area suggesting an infectious etiology.
Only one case was referred to the school medical service.( that was me !)
This work was also published and referenced here;
http://onlinelibrary.wiley.com/doi/10.1046/j.1467-0658.2000.00065.x/abstract;jsessionid=E954C6687B475DC56B03E37AA5FA8516.f03t01
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Ambulatory Child Health
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Volume 6, Issue 2
June 2000
Pages 83–89
Provision of health and education services in school children with chronic fatigue syndrome
Authors
Angela Tillett,
Sharon Glass,
Anne Reeve,
Annette Burt
First published: June 2000Full publication history
DOI: 10.1046/j.1467-0658.2000.00065.xView/save citation
Cited by: 2 articles
Correspondence: DrATillett Specialist Registrar in Paediatrics, Department of Paediatrics, Box 181, Addenbrooke’s Hospital, Cambridge, CB2 2QQ, UK
ABSTRACT
Background Chronic fatigue syndrome (CFS) in childhood may have a profound effect on a child’s life in terms of schooling, social activity and family interaction. Many reports have been based on specialist clinics with little information about CFS in children in the general population and the health and education services provided.
Objectives To review cases of CFS in school age children (5–18 years) within the East Suffolk area and determine the health and education services provided.
Methods Cases were identified by consultation with the three local health trusts and the education department. Provision of services was determined by review of hospital and school health records. School attendance was determined by postal questionnaire to the school in each case.
Results A total of 32 cases were identified, with diagnosis at a peak age of 15 years and 5.8 months as the mean duration of symptoms prior to diagnosis. Some 28 cases were referred by their GP to an acute paediatrician. Only one case was referred to the school medical service. The majority (28/32) received a rehabilitation programme provided by either a child psychiatrist or physiotherapist. Only half the cases were attending school more than half-time and 10 were not attending school at all and were receiving home tuition. Two of these had never received local paediatric review to confirm the diagnosis or plan management. Follow-up was highly variable and rarely involved school medical services.
Implications A significant number of children with CFS were identified in this semirural school-age population. Poor involvement of community child services reduced the opportunity for liaison between health and education and made identification of cases difficult. Paediatric review should be mandatory before home tuition is instituted, appropriate referral to psychiatric services encouraged and regular school follow-up organized to review progress. Close liaison between all health and education services is imperative in planning the provision of services and providing a coherent programme of rehabilitation.
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Click to access RCPCH%20CFS%20Evidence%20Based%20Guidelines%20for%20the%20Management%20of%20CFSME.pdf
Having re read this, it has the ultimate irony in this debate!
“Use of the Guideline, Limitations and Local
Implementation
This guideline has been developed according to accepted methodology which is outlined in
section 1.3
It will be clear to the reader, from the small number of recommendations which are evidence
based (6/45 are A-C grades), how limited the research evidence underpinning the management
of children and young people with CFS/ME is. The majority of recommendations in the guideline
have therefore been derived by consensus. Although this is accepted guideline methodology
the limitations of this approach are discussed below.
The methodology used to develop the consensus recommendations has been described in
detail. Although these recommendations achieved a consensus of the Delphi panel (>75% of
the panel agreeing/ strongly agreeing) this does not necessarily mean that individual panel
members or members of the Guideline Development Group not on the panel personally agree
with the consensus recommendations.
Overall some of the strongest evidence found was for specific behavioural interventions.
However, this was also the area that generated greatest controversy and discontent in responses
to the consultation draft, particularly from patient groups. The evidence base for these
interventions in children and young people is growing but at the time of writing the results of
recent trials on this patient group were not available. Therefore the evidence for
recommendations in these areas was extrapolated from systematic reviews concluding that
cognitive behaviour therapy (CBT) and graded exercise therapy (GET) showed promising results
in ambulant adults. Although extrapolating evidence from adult studies is an accepted
methodology in terms of guideline development, it does mean the recommendations in these
areas should be interpreted with some caution especially as there is currently little information
about the similarities and/or differences between the condition in adults and children. There
must also be caution in extrapolating results from studies on mild or ambulant patient to those
who are more severely ill. Furthermore CBT and GET are very general therapies that have
also been shown to be effective in patients with other chronic conditions. Although they may
help some patients, they should not be interpreted as interventions to treat or “cure” all children
and young people with CFS/ME….”
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Dear Dr. Hammond,
Thank you for taking the time to reply to this blog. Engaging those in a position of power and influence regarding M.E. is always useful I believe.
Just some very initial thoughts. You say “I personally do not use the term ME as we do not test for encephalomyelitis”. Thank you for your honesty.
How is it then that someone like Ms. Crawley can continue to use the term CFS/ME when in fact ME is not the condition she is studying? She does not carry out any of the recommended tests in the ICC or the CCC so that people with M.E. CAN be identified. Patients within this much maligned and neglected community know that at the nub of the problem is the deliberate conflation of the two terms, used interchangeably at will.
MS. Crawley in her study published in January this year, for example, specifically claimed that 1 in 50 16 yr olds had ME and yet there was not a single clinical test carried out, not a single GP consultation was had – instead she made these assertions based on self reported fatigue questionnaires filled in by either the child or their parents. Surely you can see that this is not science? Surely you can see this is deliberately contributing to conflating the two illnesses – CFS and ME? Surely you can see this for what it is?
So while I really do appreciate your personal view on this, I believe you had a responsibility to question her assertions and you failed to do that, allowing the confusion to once again go on unabated.
Let me explain where I am coming from. I don’t have ME. I don’t have CFS. I actually have Lupus, Fibro and COPD along with a few other chronic illnesses – all of which cause chronic fatigue. However never once have I been offered GET or CBT as a ‘treatment’ for any of those illnesses.
On the other hand my young son at the age of 12 was struck down with a viral illness and has remained severely incapacitated since – four years later. All he has been offered was activity management with a rigorous physio programme and a referral to a psychiatrist – neither of which worked out too well I can tell you. Both made him worse – the former from a physical repercussion point of view and the latter confused and upset him as he felt blamed for not getting well. Actually I also got ‘blamed’ for him not getting well as I was told that I was focusing too much on his illness and this was keeping him entrenched in his illness. Now bear in mind this is a child who, out of the blue, got sick, had a total bowel shutdown, was hospitalised numerous times as a result, has severe balance problems, regular vomiting and constant nausea, reversed circadian rhythm, new onset dyslexia, new onset tinnitus, daily nosebleeds, severe bone and muscle pain, rapid heart rate, IBS, etc etc….but it was MY focussing on his illness that was keeping him ill? …
You see, this is the kind of thing that is happening daily with people like Ms. Crawley and her colleagues who have convinced themselves that the perpetuation of this illness is psychological and have staked their careers on it. They simply cannot retreat from this position without losing massive credibility and income. Do you think it is likely they will come clean so? No it isn’t. In the meantime parents are being blamed when their child doesn’t recover. Actually if you look at the DUTCH FITNET protocol you will see it is even more specific than that – Mothers are blamed for perpetuating the illness and treatment programmes are recommended for the mothers of those that don’t get ‘better’. What kind of madness is that? Do you really believe that there are thousands of mothers out there who have nothing better to do than ‘convince’ their child they are ill, give up careers to care for them, deal with the awful impact on other family members including siblings and deal with medical appointments which generally leave them feeling useless, distressed and upset because it’s clear that their child is not ‘believed’ when they say they are ill and unable to function normally? Come on….
This power of the BPS proponents has to be taken from them and the only way to do that is for the patient community to keep plugging away – using what little energy they have to expose the madness and lack of veracity that is the BPS model. Thankfully we now also have some very reputable international scientists who have taken up the cause – horrified with what they have seen.
You mention that the debate between ME and CFS is ‘sensitive’. I disagree. There is nothing sensitive about deliberately ignoring evidence, deliberately ignoring the WHO classification of ME as a neurological illness and deliberately ignoring criteria such as the International Consensus Criteria or indeed the Canadian Consensus Criteria (which has been around now for 13 years). These criteria were established by International EXPERTS who have worked for decades with this illness and have seen thousands of patients between them. So no, I don’t agree that it’s ‘sensitive’. It’s political. It’s immoral. It’s fraud. Lots of other words could be used, but sensitive isn’t one of them.
From my point of view Ms. Crawley and AYME can carry out whatever research they want, but when they say it is for children with M.E., then they are committing fraud. Simple as.
If you believe that you help the majority of young people who seek help in your clinic, then those young people do not have M.E. See how simple this is becoming?
You also said that the mainstay of treatment is aimed at finding a baseline of activity that can be achieved without disabling symptoms, yet the FITNET protocol specifically says that flares and exacerbations of symptoms are to be expected and pretty much ignored. Indeed no matter how severe they become they are not notifiable adverse reactions and instead are to be expected. Do you seriously condone a ‘treatment’ that makes young people worse – perhaps never recover from that same ‘treatment’?
On a personal level I am a CBT practitioner in the field of addiction. I know it’s limits. It can work very well when there are external influences preventing you from choosing certain options. It absolutely does nothing for someone who is chronically ill – unless it is to help them with tips and techniques to manage that illness and not get any worse. It won’t help anyone who has a disrupted circadian rhythm, it won’t help make their symptoms better. And that’s what CBT in the case of FITNET is designed to do – ‘fix’ the problem by convincing young people to ignore their symptoms and push through. Read the protocol. Another thing CBT can do is make someone feel worse because they can end up believing that they are simply not trying hard enough. As a practitioner with those in addiction, I know about putting checks in place so that it doesn’t end up making a client worse.
The FITNET trial is not just about CBT. Again, read the protocol. The idea is to introduce a level of high activity to a baseline of 8 hours per day. So actually FITNET is GET by stealth. What kind of a trial is that? It’s unethical and that’s the kindest thing I can say about it.
I would like to end this reply on a positive note. I am grateful that you responded and I am grateful for your honesty. I just wish you would apply that to serious questioning of the BPS model and how it pertains to M.E. Given that you seem to have some of an understanding of the issues, you are only contributing to the ongoing conflation of chronic fatigue with ME by your silence on this issue. You need to be vocal and you need to stand up for those patients who cannot do it for themselves.
I’m glad that you support publicly available data but was a tad concerned when you wrote “I also accept that people interpret complex data in different ways, and there is seldom a simple, single interpretation”. Just in case anyone should be left with the view that the reanalysis of PACE for example was the result of a ‘different interpretation’….it wasn’t. The data was reanalysed exactly the same as the original analysis but simply used the original recovery targets instead of the ones that were changed half way through the trial. I wouldn’t like to think anyone would be confused by your comment, some thought it best to mention that.
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Click to access wames_young_people_report_may_2004.pdf
Worth re reading 12 years on……..
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Thank you so MUCH Dr Hammond!
We really just want to be engaged by medically qualified individuals, so that the discussion can begin, and scientifically legitimate arguments and criticisms can be made away from the angry exchanges on social media.
Some quick points – Perhaps CFS is an umbrella term, a heterogeneous group of diseases causing unexplained fatigued. But the more results we get from immune studies and metabolomics suggests that ME may in fact be a discrete illness, albeit with different triggers. See recent work by Maddie Hornig, Jose Montoya and Maureen Hanson. Testing for Encephalitis would involve brain scans or spinal taps. When these have been performed in ME patients they have usually shown pathology. I would therefore argue that the term ME can be used based on the diagnostic criteria, and could then be ruled out via these tests when they become more accesible. I do think separating ME and CFS is the way forward.
You say you’ve had ‘positive feedback’. This is a little worrying, as I’m sure you are aware it is unscientific. Most people give positive feedback out of gratitude and politeness. Politicians and restaurants get ‘positive feedback’, even when they are extremely umpopular. You need only look at the forums where patients feel they can speak freely. Or follow up patients who drop out of studies, which PACE failed to do. The negative feedback is so utterly devastating, that we should be erring on the side of caution, as with all other therapeutic interventions
Finally – ‘CBT’ is a term that can mean anything, and that is part of the confusion. Like ‘CFS’, and ‘Recovery’, the Wessely group of psychologists use their own definitions. This is one of the many, many, many problems in their work, which you can describe as either flawed or misleading, depending on your preference, that has led to so much suffering. This is something that I ask you take Esther Crawley to task on if you do invite her back on your show.
Thank you so much for engaging with us, we all sincerely hope that you will not be overwhelmed with the responses you are getting, and that it will put you off reaching out to us again!
Paul Mc Daid
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Many thanks to Barb and ruralres1 for the info re those studies. I look forward to taking a look when my brain allows… 🙂
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I have nearly 20 years of data and information having both a personal and professional interest. The good news about our local cohort is that they mostly improved a lot and CBT and GET had little to do with it. Being well supported, having appropriate adapted educational provision and good clear advice about managment, nutrition and the importance of maintaining a social life (all from a specialist support network which was initiated by the local authority) enabled them to slowly let nature take its course, maximise “recovery” and for them to get on with their adult life in difficult but not impossible circumstances. It doesn’t need expensive research, it’s not rocket science, mostly plain good common sense and time, time to allow recovery in my humble but informed opinion!
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