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Esther Crawley Paediatric Prevalence Study Funded by Action for ME

Discussion in 'General ME/CFS News' started by Wildcat, May 15, 2016.

  1. Wildcat

    Wildcat

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    https://www.actionforme.org.uk/reso...ic-me-surveillance-study-youre-funding-about/
    .
    Led by:
    Dr Esther Crawley


    Aims: To measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK.


    Dr Crawley says: “We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/ME in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).

    “All completed questionnaires, shall be examined by an expert panel to determine whether the diagnoses of severe M.E. is correct or if further information is required. If necessary, we will examine the clinical notes to gather further information or to clarify the diagnosis. This study will tell us how common severe paediatric M.E. is, how it presents and what treatments are offered. We need to know this for future research, and to help inform current and future service provision.”

    Cost: £12,000 made possible by donations to our Clare Francis Research Fund and match-funding with the University of Bristol.


    Length of study: 13 months


    Study begins: 2016


    Background information: Paediatric M.E. is relatively common (0.4 – 2.4% in children) However, the prevalence and incidence of severe paediatric M.E. is unknown. Children with severe M.E. are either unable to carry out any activity for themselves or can carry out only minimal daily tasks such as face washing.

    Understanding the epidemiology of severe M.E. is important for future research and for commissioning of specialist NHS services.
     
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  2. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    :jaw-drop:

    But what about patient privacy? I'm sure the patient's legal guardian would not have signed a release of their child's medical information to the research group. I would also be concerned about the possibility of identification of the child from any information provided.
     
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  3. user9876

    user9876 Senior Member

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    Given the very poor quality of here last paper surveying children with ME I think it is shocking that action for ME would fund Crawley. Perhaps the only good thing here is that since it looks like questionnaires then at least children with severe ME won't have to encounter Crawley directly.
     
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  4. Wildcat

    Wildcat

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    "This study will tell us how common severe paediatric M.E. is, how it presents and what treatments are offered. We need to know this for future research, and to help inform current and future service provision.”


    What exactly is the NHS Research Provision for youngsters with ME provided by Dr Esther Crawley and her team??

    Why is AFME funding Esther Crawley's research at all?

    The real Paediatric ME UK expert Dr Nigel Speight is no longer allowed to practice or represent youngsters with ME and their families because of restrictions placed on him by the GMC due to 'complaints', which will take months to be heared..
    .
    .
     
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  5. Chrisb

    Chrisb Senior Member

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    Perhaps it was just cost saving that reduced the number of paediatricians by one.
     
  6. ronddejambe

    ronddejambe

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    What is the last paper that surveyed children with M.E?
     
  7. user9876

    user9876 Senior Member

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  8. Wildcat

    Wildcat

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    AFME asked its members in 2013 what kind of research they would like to be funded. The members prioritised the funding of research on severely affected and children. AFME did not tell its members in 2013 that the Paediatric research on severely affected would be carried out by Esther Crawley.

    The 2013 AFME 'asking the members' survey is reminiscent of what AFME did in 2002.

    In 2002 AFME asked their members if they wanted research on Pacing. Of course the members said "Yes". The 'Research on Pacing' turned out to be the PACE Trial. When PACE was announced AFME wrote in its magazine Interaction .. "Hooray Hooray! We have a Study on Pacing! That is what our members voted for!" ... AFME did not properly explain that PACE was a study of CBT/GET with pacing tacked on. or that the version of pacing used in PACE did not resemble the actual pacing that patients do, which is not therapist lead.

    AFME have manipulated the results of yet another of their patient surveys, to justify funding research by prominent Psychosocial doctor/researchers.
    .

    Edit - the afme members did not prioritise research on children.
     
    Last edited: May 15, 2016
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  9. ronddejambe

    ronddejambe

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    Thank you!!
     
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  10. ronddejambe

    ronddejambe

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    That's highly manipulative of them Wildcat.
     
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  11. Sidereal

    Sidereal Senior Member

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    Scary. Sounds like another attempt to make severe ME disappear by re-diagnosing patients with psych conditions.
     
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  12. user9876

    user9876 Senior Member

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    From personal experience that is almost what Crawley does. Here ego won't let her change her original diagnosis. I was told that my child had been ill too long for it to me CFS and that it was originally CFS but Crawley claimed she had 'cured' that and now my child had a disociative disorder from the stress of being ill. She then tried to get the local CAMHS team to do her dirty work and have my child locked in a psych ward with a PRS diagnosis.
     
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  13. Chrisb

    Chrisb Senior Member

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    I was surprised that there was no mention of PRS amongst the possible alternative diagnoses mentioned - only anxiety, depression, eating disorders. Don't want to frighten people before the "national surveillance unit" is up and running.
     
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  14. Funny coincidence that, isn't it?


    folks, there is NO SUCH THING AS COINCIDENCE, when it comes to power, money and politics
     
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  15. ronddejambe

    ronddejambe

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    I know it's long, but I've written this on AfME's fb page. Am publishing it elsewhere in case it gets deleted and they do need to answer the questions within. Permission is given to re-post it.

    Dear Sonya,

    I was heartened to read your announcement regarding the forthcoming research Action for M.E is funding. It’s fantastic to think of new projects running, which will help further our understanding of this disease, especially at this time of gathering momentum when so much international research is at last properly investigating our plight.

    I was particularly pleased to see that there is going to be a study into how many severe paediatric cases of the illness there are in the UK, as those who are severely ill are so often forgotten by research, despite needing the most care. However, I have some questions regarding this study, and would appreciate hearing your response.

    My first question regards the fact that the study will be led by Dr Esther Crawley. Having read some of her research, I have no doubt she is highly committed to understanding general paediatric fatigue, and I note that she has been clear about saying in the public sphere that she believe ME/CFS to be a biological illness which is genetically heritable and that she knows it causes severe distress to sufferers.

    However, Action for M.E must acknowledge that Esther Crawley is strongly associated in the minds of most M.E sufferers with the SMILE trial, which investigated the Lightning Process. Both individuals and other M.E charities[ii] raised strong objections to this trial on the grounds of ethical concerns. The objections centred on the fact that that the founder of the Lightning Process had been involved with the Advertising Standards Authority,[iii] who concluded that the LP made misleading claims and had no robust body of evidence behind it. When the M.E association did a study of their members, they found the alarming results that out of 4.217 responders, one fifth were made worse by undertaking the Lightning Process, with 7.9% made slightly worse and 12.9% much worse.[iv] Thus Esther Crawley’s credibility has been diminished with sufferers, which is surely cause for alarm. I would argue that even if the points in this letter are satisfactorily answered, that her appointment as leader of the study will further damage the relationship between yourself and your members.

    With the controversy regarding the PACE trial[v] over the last year and the extent to which it has been discredited, it is surely particularly important at this point in time for M.E charities not to associate themselves with anyone who supports the ideas behind it, regarding the illness having a possible psychosomatic element. With Dr Crawley not only having worked on the SMILE trial but having produced research looking at such a thing - for example, both at the association between disabling fatigue and maternal anxiety and depression, and disabling fatigue[vi] and family adversity[vii] - it is clear that her leading your study is going to spread further mistrust and fear. My question therefore is, do you acknowledge this fact and how have you thought to mitigate such distress? I understand that you undertook a survey asking M.E sufferers what research they wanted to be carried out in advance of choosing this project and I ask you to consider the fact that had your members known that Esther Crawley would be leading this particular piece of research, it would most likely not have received the same support.

    My second question is why the study will focus on looking at whether other diagnoses such as anxiety, depression and eating disorders have been considered in paediatric M.E. I would like to understand the relevance of this. If Action for M.E is happy to state that M.E is a neurological illness, would it not be more pertinent to look at whether diagnoses of Ehler-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome or Glandular Fever have been considered? Why is an association yet again being made between M.E and mental illnesses, which, whilst being extremely serious and worthy of study in their own right, have no relevance to M.E?

    Thirdly I would like to ask what definition criteria will be used in this study. Given that Dr Esther Crawley has previously studied ‘fatigue,’ in much of her research, rather than M.E as defined by the Canadian Consensus Criteria, what, if any, objective measurements will be called into play when looking at how the participants have been diagnosed. With the PACE trial being criticised, in part, because it relied on subjective self-report, how is the study you are funding going to accurately assess just what illness the children are suffering from? How many paediatricians are aware of symptoms like post-exertional malaise and orthostatic intolerance? Surely such a flaw threatens the whole study, in rendering any data collected meaningless. How can there be confidence amongst patients that the paediatricians contacted will weed out children who experience fatigue but who don’t have M.E, for example? I see that in a similar study already done by Dr Crawley[viii] done in 2015 she saw no issues there with using subjective self-report to measure symptoms, which indicates that the same thing might occur here.

    The patient community, despite being made up of some extremely ill individuals, has demonstrated extraordinary resilience in fighting to have their concerns over PACE heard over the last few years. We have had to endure not only personal criticisms from journalists[ix] but also our reputations being smeared. [x] We deserve at the very least for all charities claiming to represent us, to assertively pursue the line that M.E is a physical illness, as so much evidence suggests it is. It is not enough for charities simply to claim that they believe that fact; all the research that is funded has to compliment and explore that same theme so that there is no room for any doubt. To act otherwise is to let down your members and to encourage the wider scientific community to continue to erroneously associate M.E with various psychiatric conditions. As more and more good quality research is produced internationally, in the longer term there will no doubt be judgements associated with that.

    I look forward to hearing your response,

    Best wishes,


    Fiona Symington


    Case notes BBC Radio 4 6th November, 2007

    [ii] http://www.meassociation.org.uk/201...-me-association-and-young-me-sufferers-trust/

    [iii] https://www.asa.org.uk/Rulings/Adju...er-Group-Ltd/SHP_ADJ_158035.aspx#.VzhfCY-cHIU

    [iv] https://meagenda.wordpress.com/category/dr-esther-crawley/page/5/

    [v] http://www.virology.ws/2015/10/21/trial-by-error-i/

    [vi] Maternal and childhood psychological factors predict chronic disabling fatigue at age 13 years, Crawley E et al 2015 Journal of Adolescent Health, vol 56, pp 181-187

    [vii] Chronic disabling fatigue at age 13 and association with family adversity, Crawley et al, Pediatrics, July 2012, volume 130, issue 1

    [viii] Chronic fatigue syndrome or myalgic encephalomyelitis is different in children compared to in adults: a study of UK and Dutch clinical cohorts, Crawley, et al, BMJ Open 2015, Volume 5, Issue 10

    [ix]http://blogs.spectator.co.uk/2015/11/lets-just-admit-that-chronic-fatigue-syndrome-is-not-actually-a-chronic-illness/

    [x]http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
     
  16. TiredSam

    TiredSam The wise nematode hibernates

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    At least until now parents of kids with ME had the option (if they were fortunate enough to be well informed beforehand) of staying well away from Esther Crawley. Now she's coming after them anyway. I find it horrifying, and would want a reassurance from my Dr that they would have nothing to do with Crawley and her survey. The possible consequences of her going through the clinical notes of identifiable children with ME don't bear thinking about.
     
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  17. JaimeS

    JaimeS Senior Member

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    @ronddejambe -- very well-written. Reasonable and measured while still firmly getting the point across.

    -J
     
  18. Roy S

    Roy S former DC ME/CFS lobbyist

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    This study certainly has some chilling aspects. It's in part reminiscent of a flawed CDC site surveillance study started in the late 1980s. Even they admitted it was flawed many years later. Like that one, I don't see how it's possible to get accurate prevalence or incidence figures from this.

    Once again, it's probably going to take one or more professionals with the necessary credibility to critique the study. Perhaps that could have some effect.


    @Wildcat, it's good to see you posting again.
     
  19. Comet

    Comet I'm Not Imaginary

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    This is bone chilling and barbaric... and funded by an ME charity. :wide-eyed:
     
    Yogi, MEMum, Cornishbird and 2 others like this.
  20. Wildcat

    Wildcat

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    AFME 2013

    "The priorities and themes were drawn from the top 5 patient priorities - determined by consulting the community through a survey in June (2013), which attracted the views of 1,000 people (900 of whom had M.E.). Together, these 5 priorities won 85% of patient first-choice votes:

    Disease Processes and causes (underlying pathology)
    Better Treatments
    Better Diagnosis
    Clinical course of ME, outcomes and prognosis (Epidemiology)
    Severely Affected patients"

    http://forums.phoenixrising.me/inde...t-the-heart-of-a-new-research-strategy.26865/
     

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