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The third (second open) IOM meeting May 5th

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Mar 31, 2014.

  1. Wildcat

    Wildcat Senior Member

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    Yes, larista,

    I do hope that anyone with concerns about the IOM inviting Meagan Arroll to speak at the May meeting will carefully read Dr Geraghty's critiques of the Howard/Arroll research study in the BMJ Open.

    In addition, one wonders why any serious research psychologist would elect to engage in research with a person (Alex Howard) who believes that he "chose" his illness (ME) before he was born, to give himself an opportunity for spiritual "growth" in his current life (Alex Howard is keen on 'past lives).

    From `Why ME? My Journey from ME to Health and Happiness' by Alex Howard
    Roximillion Publishing 2003
    http://web.archive.org/web/20080228165820/http://www.cherryred.co.uk/other/roximillion/index.htm

    Alex Howard writes on page 151: "I reasoned that from a spiritual perspective I
    had chosen my illness before I was born as a way to wake me up to my true self
    and create the opportunity to remove myself from the world and discover who I
    am".
     
    Last edited by a moderator: Apr 13, 2014
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  2. Nielk

    Nielk

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    Loudly Snub the IOM - http://meluluslegacy.com/2014/04/13/loudly-snub-the-iom/

    Excerpt:

     
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  3. jspotila

    jspotila Senior Member

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    @Wildcat can you scan that page or otherwise send me an image of it? I don't see the full text of the book online, but this is the kind of thing that the IOM panel needs to see.
     
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  4. Nielk

    Nielk

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    @jspotila - If you go to this link and click on the book "Why ME" http://web.archive.org/web/20080216230132/http://www.cherryred.co.uk/other/roximillion/whyme.htm

    You can click on "read a sample from this book".

    6th paragraph from the bottom reads:

     
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  5. caledonia

    caledonia

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    I have turned on guest blog access at http://www.meadvocacy.org/blog.

    Anyone who is boycotting the IOM meeting can post their protest letter there, instead of sending it to the IOM. That way everything will be easy to find in one place at our advocacy website.
     
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  6. N.A.Wright

    N.A.Wright Guest

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    It's a good question. In the UK Psychology Degrees are awarded as either BA or BSc dependening on course content - Arroll (see Linkedin entry) has a BSc so would have a basic grounding in brain science. Her Masters is an MSc - Research Methods and Psychological Assessment, and her Phd was at University Surrey where the Psychology department is science focussed http://www.surrey.ac.uk/psychology/study/pgr/index.htm , on paper she is someone who could have the necessary skills and background to cover the subject.

    The problems come with her long term involvement with Alex Howard and the approaches to ME/CFS that she appears to have endorsed while working for Howard. It is of course possible that Arroll has reappraised her position and now sees ME/CFS as fundamentally an organic condition requiring biological interventions. But working with Howard and her writings in that period do raise major questions, even if otherwise Arroll's cv looks respectable.
     
  7. Peter Kemp

    Peter Kemp

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    The Optimum Health Clinic have had a number of complaints regarding claims made on their website. I copy one that I made to the Advertising Standards Authority (ASA). This led to the OHC promising to remove the offending information. I cannot interpret their false claims as being an innocent mistake but see it as a deliberate attempt to mislead. I appreciate that guilt by association can sometimes be unjust - but is not always. The type of company that a person chooses to keep can say a lot about them.

    Online Complaint to the Advertising Standards Authority, March 30th 2012

    The following claim appears on the website of the Optimum Health Clinic (hereafter OHC):

    (http://www.freedomfromme.co.uk/general-faq/)

    “2. What research is there that people recover from ME, CFS and Fibromyalgia using the techniques you use?

    We are currently writing up the findings from the first stage of our clinical trials and are very excited by what we have found. Once these have been published in a respected peer reviewed journal, we look forward to sharing the findings with you.

    In a study by a US clinic which use a number of similar approaches to us, there were 46 patients diagnosed with severe C.F.S., and treatment resulted in complete resolution of fatigue in 57%, and a significant but incomplete improvement in 39% of the patients. Improvement was seen at a median time of seven weeks. This was published in the Journal of Chronic Fatigue Syndrome Vol. 8(2) 2001.”

    This statement clearly implies that people ‘recover’ from “severe C.F.S.” using the treatments sold by the Optimum Health Clinic, because they have been shown effective in a US clinic ‘which uses a number of similar approaches to us’.

    1/ The figures provided by OHC do not apply to the illness they make claim for, to whit: “CFS”.

    2/ The research referred to by OHC is not from the claimed journal or year, but from a different journal 6 years earlier.

    3/ Any “similar approaches” used by Dr Teitelbaum’s clinic and the OHC are far outweighed by major differences, in particular, the prescribing of controlled drugs to patients.

    4/ The OHC are clearly misleading readers into believing that C.F.S. refers to Chronic Fatigue Syndrome and that their treatments are supported by research into this illness.

    The information published on the Optimum Health Clinic website is false and misleading. Visitors to the website might well believe that their ‘treatments’ are supported by journal-published, peer-reviewed research when they most definitely are NOT.


    Details of why OHC’s claims are misleading:

    The research that OHC refer to was into ‘Severe Chronic Fatigue States’ not into Chronic Fatigue Syndrome) as implied by OHC. These are two completely different medical conditions. By putting full-stops after each letter, i.e. 'C.F.S.' the advertiser can claim they are referring to 'Chronic Fatigue States' whilst knowing that the vast majority of readers will believe this stands for 'Chronic Fatigue Syndrome. There is no convention by which 'C.F.S.' stands for any illness and this is clearly a strategy to mislead; especially as this information is presented as an answer to a question about Chronic Fatigue Syndrome.

    Dr Jacob Teitelbaum, M.D. and Barbara Reid even state in their research: “Severe chronic fatigue states (SCFS) are common. Chronic fatigue syndrome (CFS), representing a small subset of SCFS, is rare.” They further state: “The study population consisted of 56 females and eight males… We defined these patients as having a severe chronic fatigue state.”

    Furthermore, the figures: “46 patients diagnosed with severe C.F.S., and treatment resulted in complete resolution of fatigue in 57%, and a significant but incomplete improvement in 39% of the patients”, have never been published in the Journal of Chronic Fatigue Syndrome. These figures come from the Journal of Musculoskeletal Pain 1995

    http://informahealthcare.com/doi/abs/10.1300/J094v03n04_11 and reiterated by Teitlebaum: http://www.jacobteitelbaum.com/resources/Effective-Treatment-Of-Fatigue-States-Definitive.html

    The OHC claim on their website is false and misleading.

    Furthermore, it is false and misleading for the OHC website to claim: ‘In a study by a US clinic which use a number of similar approaches to us…’ because the clinic in question employed extensive use of prescription drugs to achieve their resulting improvement in partients; including antibiotics, antidepressants, sleep drugs, hormone replacement/therapy drugs, etc. The OHC utilize no such treatments. The only person at the OHC who is appears to be qualified to prescribe controlled drugs is Dr Nicki Crowley, who is an NHS consultant psychiatrist. Dr Crowley does not prescribe drugs at the OHC. Her role there is only to diagnose patients. The OHC website states:

    “Dr Crowley’s role is currently to offer a diagnostic service within OHC with the vision of expanding the department to full integration with the psychology and nutrition teams over time.” (http://www.freedomfromme.co.uk/medical-and-research-team/)

    Furthermore, the research referred to by the OHC has never been published in the Journal of Chronic Fatigue Syndrome, which is a respected peer-reviewed journal. The actual paper by Teitelbaum and Bird in the above journal was:

    Jacob E. Teitelbaum, MD* 1 ; Barbara Bird. 2001. Journal of Chronic Fatigue Syndrome Vol. 8, No. 2, 2001. PP3-28. EFFECTIVE TREATMENT OF CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA—A RANDOMIZED, DOUBLE-BLIND, PLACEBOCONTROLLED, INTENT TO TREAT STUDY. Available online at: http://www.fibroandfatigue.com/files/rct-study.pdf. Accessed March 30th 2012.

    The Table below is from the journal referred to by OHC. It clearly shows that the majority of patients in the research were prescribed controlled drugs including sleeping drugs, anti-depressants, antibiotics, thyroid drugs, hormone drugs etc., as part of the therapy:


    Treatment

    # of Patients on Treatment

    Daily One Multivitamin 38
    Valerian Rest 38
    Magnesium/Malic Acid (Fibrocare) 38
    Melatonin 3/10 mg 38
    Chromagen (iron) 24
    Vitamin B-12 30
    SSRI (Sertraline, Paroxetine,Fluoxetine, Nefazodone) 29
    Amitriptyline (Elavil)10
    Cyclobenzaprine (Flexeril)10
    Desyrel 24
    Ambien 23
    Klonopin 8
    Soma 22
    Synthroid18
    Armour Thyroid15
    Cortef 29
    DHEA 24
    Florinef 19
    Oxytocin 15
    Estrace 7
    Triestrogen 6
    Progesterone 9
    Testosterone 12
    Nystatin 35
    Sporanox 27
    Flagyl 10
    Doxycycline 4
     
    Last edited: Apr 14, 2014
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  8. Wildcat

    Wildcat Senior Member

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    If Megan Arroll has changed her mind since she left the Optimum Health Clinic, then it a pretty recent change.

    March 2013 CAM Conference (Complementary and Alternative Medicine)

    http://www.camconferences.com/?page_id=12

    14.15 – 15.45: Psychology and ME/CFS: Not all in the mind…

    Alex Howard

    ‘In this interactive session, Alex Howard will explore the role of psychology in ME/CFS, held in the context of a wider integrative framework. Joined by Dr Megan Arroll, Alex and Megan will also discuss some of the recent research conducted at The Optimum Health Clinic and suggestions for the future of the area based upon this.

    Alex will begin by sharing his own personal journey with ME/CFS, along with exploring some short exercises with the audience to give them a “felt” sense of the psychological experience of ME/CFS. Alex will then explain the role of cognitive and emotional factors in this complex group of illnesses. This will include an exploration of the “Maladaptive Stress Response,” and treatment approaches for working with this pioneered at OHC, along with the various psychological subtypes and predisposing factors from a psychological perspective as understood by this integral approach.

    Alex and Meg will go on to discuss recent research published by the OHC team in the British Medical Journal Open, and how this relates to nutritional therapists working with ME/CFS. Finally, they will share their thoughts for the future of ME/CFS both in terms of treatment and research, along with some of the exciting possibilities this holds for the wider CAM community.’


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    The Howard/Arroll OHC Research published in the British Medical Journal Open, discussed by Alex Howard and Megan Arroll at the 2013 CAM Conference is here:

    ‘A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting’
    http://m.bmjopen.bmj.com/content/2/6/e001079.full

    The BMJOpen Responses ‘A Highly Biased and Flawed Study’ 1&2
    Keith Geraghty, Public Health Researcher
    Manchester University MPH

    Are here: http://m.bmjopen.bmj.com/content/2/6/e001079.full/reply#bmjopen_el_6706
     
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  9. Valentijn

    Valentijn Activity Level: 3

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    Her "problems" are independent of Alex Howard and the clinic, as evidenced by the thesis she wrote two years prior.
     
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  10. Peter Kemp

    Peter Kemp

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    I think it rather telling that the OHC's details of staff includes post-nominal titles including e.g.:

    ***** **** Dip.Clin.Hyp.NLP.Coach.EFT (http://freedomfromme.co.uk/psychology-team/)

    This 'qualification' is bestowed by Phil Parker for learning to teach the lightning process. The taught study hours for what constitutes the longest post-nominal title for any single qualification that I have ever seen, is roughly equivalent to a Certificate in Counselling. In other words, people with this title have learned Clinical Hypnotherapy, NLP, Life Coaching and EFT in the same time that most Counselling students find out if they have any aptitude and desire to do the next gruelling 3 years of training.

    Customers of the OHC might reasonably believe that they are being cared for by highly trained experts, which could be very far from the truth. Personally, I think it shameful and an insult to those that slogged their guts out for years just to get 'MA' after their name.
     
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  11. N.A.Wright

    N.A.Wright Guest

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    It rather depends upon how you assess the value of a Phd thesis - as demonstration of academic and intellectual rigour Arroll's was judged approvingly by her peers, she got her her Phd. Trying to attack that, no matter how much the thesis may be at varriance with our prefered perspective of ME/CFS is unlikely to be seen as meaningful within the IOM process. The work with Howard and Arroll's writtings contemporary with her employment with Howard is much more questionable.

    My reply to Kina was about why the IOM chose Arroll - on paper and ignoring the work with Howard, Arroll looks like she may well be competent to talk abut physiologically based cognitive dysfunction in ME/CFS, and the IOM isn't exactlly spoilt for choice. It's the chicken and egg problem if no one is doing the work, there's no-one to speak about it - or at least only those whose work is poor or peripheral or of limited scope.

    The IOM ought to have looked deeper and considered that Arroll would be an unhappy choice for a public meeting, at the very least made available at an early stage a poster that could have demonstrated Arroll's perspective is now more closely aligned to the wider interests of patients. The study funded by the Ramsay Research Fund http://www.meassociation.org.uk/201...dy-into-post-exertional-malaise-18-july-2013/ The research will be carried out by Dr Amolak Bansal (immunology), Dr Megan Arroll (cognitive function), Dr Dilip Shah (cardiology) and Mr Brian Ford (laboratory immunology) at St Helier Hospital in Surrey, may well be what Arroll is going to talk about and the IOM could have flagged this up if it is indeed the case. Researchers do change their views and damning someone because they've written stuff in the past we don't like is not a good way to encourge researchers in general to look favourably at getting involved in ME/CFS. What we write here may not be significant but how it is seen as part of the very public IOM process could be immensly harmful. We need new people involved in ME/CFS research and the reception that patients give to researchers has an impact upon that. It doesn't mean the work shouldn't be criticised but demonising those we don't like does have a wider impact.
     
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  12. Peter Kemp

    Peter Kemp

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    I would speculate that Dr Arroll was invited to address the IOC on the grounds that she is an expert on M.E. If she is an expert then perhaps she has sufficient knowledge to decide whether or not she herself actually has M.E. In a video that was on the OHC website (which now appears to have been removed) she gives the viewer to understand that she had recovered from M.E. Yet at the same time that this video was available Dr Arroll was representing herself as having M.E. in correspondence with patients in a support group. Whether she was confused or obfuscating or trying to be 'all things to all people', it does not bode well for someone who will represent expertise at a hearing that may be critical for the future of PWME.
     
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  13. N.A.Wright

    N.A.Wright Guest

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    You've missed the context - I prefaced the above with "UK Medical research and non profit funding is a pretty small world, ......." It's a fine ambition to stand up to bullying and and misrepresentation, but when no one else shares that perspective then one has to accept that ones outright assertiveness will mean isolation. And that isn't a place where you get support for funding or attract research commitment. In this thread, I'd say there was significant un-wisdom is identifying a sitting member of the MRC board in antagonistic tones, not because that member can or would harm ME/CFS research inititiatives, but because it sets the context in which this patient group seems able to have negative views toward anyone who has had involvement in ME/CFS funding or research, that hasn't matched precise expectations.

    Medical funding and research is a highly competitive area - setting ourselves up as a group that will not accept or deal with anyone who has previously 'crossed us' just creates another barrier that those not committed to our cause see as a self inflicted impedendance and a reason to avoid us. If we want to sell £000k research projects, then we need friends wherever we can find them, and having a long list of enemies puts people off.
     
  14. Wildcat

    Wildcat Senior Member

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    N.A.Wright wrote "In this thread, I'd say there was significant un-wisdom is identifying a sitting member of the MRC board in antagonistic tones, not because that member can or would harm ME/CFS research inititiatives, but because it sets the context in which this patient group seems able to have negative views toward anyone who has had involvement in ME/CFS funding or research, that hasn't matched precise expectations.

    The "sitting member of the MRC Board" who N.A Wright refers to is presumably Vivienne Parry.

    Its difficult to see what advantage there could be to the ME Community from courting an outspoken apologist for the PACE Trial:

    ‘The PACE results – an analysis by science writer and broadcaster Vivienne Parry’

    All material on this page was contributed. The MEA did not have a hand in writing the introduction.

    http://www.meassociation.org.uk/2011/04/the-pace-results-–-an-analysis-by-science-writer-and-broadcaster-vivienne-parry/

    And:
    http://meagenda.wordpress.com/2008/11/16/parry-prime-minervation-and-the-me-observatory/
     
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  15. Wildcat

    Wildcat Senior Member

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    What has "put off" potential ME biomedical researchers is the very long historical refusal of the MRC to fund high quality ME bioresearch applications.....

    ..... and relentless historical (and current) reporting of ME patients as responding to/improving with/recovering with: CBT, exercise, NLP, EFT Tapping, Positivity, drinking Fresh Juice, discovering their true passion in life, learning spiritual 'lessons', banning realistic thoughts about their illness and telling them to "Stop" (Lightning)... etc etc.

    I await the next 'ME cure' with bated breath. Will it be 'sticking our heads in a bowl of yoghurt whilst performing a toe- twiddling asana' ??

    If I was a medical bioresearcher I would think twice about spending the very substantial time and energy required to put in a research funding application to the MRC for research on a disease which can just as easily be 'cured' by banning so called "negative thoughts", or any of the 'ME solutions' listed above.
     
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  16. Kina

    Kina Moderation Team Lead

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    My question was meant to be rhetorical. Nowhere have I seen written that Arroll's perspective regarding ME has changed - -everything that she has produced suggests she has not changed her perspective. Do you have any evidence of what you are saying or is this just speculation on your part and if you are speculating what makes that different from other members speculating about her?

    It's not fair to have a go at forum members because they choose to have a discussion why somebody should not be speaking at the IOM which is the subject matter of this thread. It's not fair to suggest (and very much off-topic) that members here are going to stop important research being performed by commenting on these issues. Let's not 'demonize' forum members for wanting to have a very important discussion about who should be representing them at the IOM.
     
  17. Wildcat

    Wildcat Senior Member

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    Thanks to *Iartista* for highlighting this 2012 ‘curing ME/CFS with NLP’ study by Megan Arroll and the OHC’s NLP practitioner Anna Duschinsky. The study emphasis a supposed ‘stress loop’ hypothesis ad nauseum, and emphasises an ‘over achiever’ caricature stereotype so beloved by the OHC, ‘high action-proneness’ anxiety, trauma, etc etc.

    As here: To begin, individuals are assessed on a number of characteristics that have been found to be important in the predisposition and maintenance of ME/CFS, such as a drive towards action and achievement…. trauma (this can be high- or low-grade trauma) all of which can lead to anxiety and heightened arousal, culminating in a chronic activation of stress loop.

    After these patterns are identified, trained therapists utilised NLP techniques such as the pattern break/anchoring method to retrain the nervous system out of its

    hyper-alert state and into a calmer, more present and more empowered one which enables activity management without relapse or ‘payback’. “

    And there are the NLP inventors Richard Bandler, John Grinder and Robert Dilts, in the references.

    https://www.google.co.uk/#q=A Neuro-linguistic Programming-informed psychological approach to the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A case study and initial findings from a longitudinal investigation

    ‘A Neuro-linguistic Programming-informed psychological approach to the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A case study and initial findings from a longitudinal investigation’

    Authors: Megan Arroll and Anna Duschinsky

    Dr Megan Arroll is the Director of Research for The Optimum Health Clinic and holds a Visiting Research Fellowship at the University of East London. Her research interests include numerous medically-unexplained conditions such as ME/CFS, MdDS, fibromyalgia, etc. and uses both quantitative and qualitative methods in her work.

    Anna Duschinsky MA(Hons) holds a degree from Cambridge University, and has numerous qualifications in mind-body approaches including Hypnotherapy and NLP. Anna is Director of Psychology at The Optimum Health Clinic where she has specialised in working with ME/CFS and stress related conditions, and has over 10,000 hours of clinical experience.

    Contact details:


    The Optimum Health Clinic
    Bickerton House,
    25-27 Bickerton Road,
    London, N19 5JY
    E-mail: drarroll@theoptimumhealthclinic.com,
    E-mail: anna@theoptimumhealthclinic.com
    Website: www.freedomfromme.co.uk


    Abstract

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, multi-system disorder with no clear biomedical aetiology (Carruthers et al., 2003). Due to its uncertain causation, this condition has proved difficult to treat (Chambers, Bagnall, Hempel, & Forbes, 2006) with the largest high-quality outcome studies centring on Cognitive Behavioural Therapy (Price, Mitchell, Tidy, & Hunot, 2008) and Graded Exercise Therapy (Edmonds, McGuire, & Price, 2004), techniques which are often rejected by patients.


    A small, private integrated health clinic has utilised components of Neurolinguistic Programming (NLP; Andreas & Andreas, 1994; Bandler & Grinder, 1975; Dilts, Hallbom and Smith, 1990) in an effort to provide those with the disorder an alternative to the aforementioned treatment modalities.

    To begin, individuals are assessed on a number of characteristics that have been found to be important in the predisposition and maintenance of ME/CFS, such as a drive towards action and achievement (Van Houdenhove, Onghena, Neerinckx, & Hellin, 1995), trauma (this can be high- or low-grade trauma) (Van Houdenhove et al., 2001) and daily stressors (Van Houdenhove et al., 2003), all of which can lead to anxiety and heightened arousal, culminating in a chronic activation of stress loop.

    After these patterns are identified, trained therapists utilised NLP techniques such as the pattern break/anchoring method to retrain the nervous system out of its

    hyper-alert state and into a calmer, more present and more empowered one which enables activity management without relapse or ‘payback’.


    With continued professional support, steady and sustained improvements have been shown, as assessed by a longitudinal investigation study of the Clinic’s methods.

    In a Clinic-wide study investigating the psychological, nutritional and combined interventions provided, 138 participants (110 females, 79.7%; mean age 42.86 years; mean illness duration 9.52 years) completed a battery of measures (Medical Outcomes Survey Short-Form 36, Multidimensional Health Locus of Control Scale, Multidimensional Fatigue Inventory, CDC CFS Symptom Inventory, Maladaptive Stress Index) at baseline and 72 participants at follow-up (52.17% response rate).

    Within the psychology group alone, significant differences were found between time one and time two in measures of physical functioning, social functioning, general mental health, vitality, general health perception, internal and chance locus of control, general fatigue, activity, motivation, mental fatigue, muscle aches and pains, memory problems, difficulty in concentrating and the maladaptive stress response. In order to illustrate clearly the NLP aspects that have led to these results, a brief case study will be presented first. The lady (‘S’) in question was very driven and with a deep seated anxiety, with an intense need to be in control. ME/CFS was triggered by a busy

    work and family life and a traumatic life experience in the form of a Tsunami and an earthquake. Over the first three months of treatment S went from bed-bound to enjoying everyday activities without worsening symptoms; within 18 months S had made a full recovery and was pregnant with her fourth child.


    Bibliography

    Andreas, C., & Andreas, T. (1994). Core Transformation: Reaching the Wellspring Within. Moab, Utah: Real People Press.

    Bandler, R., & Grinder, G. (1975). The Structure of Magic Volume 1. Moab, Utah: Real People Press.

    Carruthers, B. M., Jain, A. K., de Meirleir, K. L., Peterson, D. L., Klimas, N. G., Lerner, A. M. et al. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, 11, 7-116.

    Chambers, D., Bagnall, A.M., Hempel, S. & Forbes, C. (2006). Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/Myalgic encephalomyelitis: an updated systematic review. Journal of the Royal Society of Medicine, 99, 506–520.


    Dilts, R., Hallbom, T., & Smith, S. (1990). Beliefs: Pathways to Health and Well-being. Portland, Oregon: Metamorphous Press.

    Edmonds, M., McGuire, H., & Price, J. (2004). Exercise therapy for chronic fatigue syndrome. The Cochrane Database of Systematic Reviews, 3, 1-25.

    Price, J. R., Mitchell, E., Tidy, E., & Hunot, V. (2008). Cognitive behaviour therapy for chronic fatigue syndrome in adults. The Cochrane Database of Systematic Reviews, 3, 1-98.

    Van Houdenhove, B., Neerinckx, E., Lysens, R., Vertommen, H., Van Houdenhove, L., Onghena, P. et al. (2001). Victimization in chronic fatigue syndrome and fibromyalgia in tertiary care: A controlled study on prevalence and characteristics. Psychosomatics: Journal of Consultation Liaison Psychiatry,
    42,
    21-28.

    Van Houdenhove, B., Neerinckx, E., Onghena, P., Vingerhoets, A., Lysens, R., & Vertommen, H. (2002).

    Daily hassles reported by chronic fatigue syndrome and fibromyalgia patients in tertiary care: A controlled quantitative and qualitative study. Psychotherapy and Psychosomatics, 71, 207-213.

    Van Houdenhove, B., Onghena, P., Neerinckx, E., & Hellin, J. (1995). Does high "action-proneness" make people more vulnerable to chronic fatigue syndrome? A controlled psychometric study. Journal of Psychosomatic Research, 39, 633-640.
     
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  18. Sidereal

    Sidereal Senior Member

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    I would just like to point out that Dr. Arroll has been invited to speak to the IOM about neurocognitive impairments in ME/CFS. Neurocognitive impairments in various illnesses and brain injuries are studied using standardised neuropsychological tests. One would assume that there is at least one clinical and/or research neuropsychologist in the United States who has expertise in this area. Instead, we get a British individual with a PhD in health psychology speaking on this subject. Dr. Arroll is not a clinical psychologist. Of course, one doesn't need to be a clinical neuropsychologist to be an expert in this area but you would expect at least that one's research degree (PhD) would be on neuropsychology. But no, it isn't.

    I have read her PhD thesis (which I linked to a few posts back). It is a thesis focusing on "perception of symptoms" in CFS and is entirely based on the biopsychosocial model of this illness (with a heavy focus on the psycho and social parts). The methodology used was a mix of qualitative (interviews with a small number of patients) and quantitative (mostly self-report questionnaires).

    The only objective measure of neurocognitive function I saw in her thesis was a modified Stroop interference task (a classic experimental paradigm in neuropsychology that has been used for decades with various modifications, including the emotional Stroop). She administered a computerised version of this to a small number of CFS patients. She hypothesised that there would be an attentional bias in ME patients towards symptom-related words on the Stroop but her experiment actually showed the opposite; healthy controls took significantly longer than CFS patients on symptom-related words. Several pages were dedicated to trying to explain this inconvenient finding.

    To reiterate: the only objective neuropsychological measure in her thesis actually failed to support the prediction from the biopsychosocial model which she seems to accept as fact, judging by the introduction and discussion.

    It is possible that her post-doctoral training involved objective neuropsych testing of ME patients, that I cannot know. I have done a Pubmed search which gives me six results.

    http://www.ncbi.nlm.nih.gov/pubmed/?term=arroll m

    The only publication of hers that I can find related to memory or cognition in ME patients is:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940708/

    which uses self-report questionnaires like the Chalder fatigue scale and no objective measures of cognition. Cognition in this study was measured using the Cognitive Failures Questionnaire, a self-report questionnaire, which has been used in many patient populations as well as normal controls. Patients' and controls' self-evaluations on this scale notoriously fail to correlate with objective neuropsych tests. (I actually used it in one of my studies (not in ME patients) and it was correlated with nothing in the three hour neuropsych test battery except neuroticism. :rolleyes: )

    wiki:

     
    RustyJ, Valentijn, Peter Kemp and 5 others like this.
  19. Peter Kemp

    Peter Kemp

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    I would add that regarding Dr Arroll's recovery (or not) I have a recording of the relevant part of the video I mentioned earlier and this segment which was published on the OHC website. The Optimum Health Clinic biography on Dr Megan Arroll stated:

    “Meg was diagnosed with ME at the age of 14 and was severely affected for a number of years. Once recovered, she pursued an academic path and completed a bachelor’s degree”.

    I think it reasonable to suppose that OHP did not want to employ somebody suffering from an illness that they claim to be able to cure but I see it as self-serving and don't see it as an excuse for misleading people. It suited Dr Arroll to 'have' M.E. amongst patients that to my mind, she treated as a convenient source of study material for her and her students.

    Dr Arroll has represented her PhD in a variety of ways. On the ME Solutions website it stated: (http://www.mesolutions.org.uk/who-we-are/)

    “Dr. Megan Arroll: Megan completed her PhD on the topic of sub-grouping in ME”.

    While the British Library depository states: (http://ethos.bl.uk/OrderDetails.do?did=1&uin=uk.bl.ethos.506003) “Thesis details.” “Investigation of symptom perception and severity in chronic fatigue syndrome”

    And the Association for the Study of Dreams conference program stated: (http://www.asdreams.org/2004/conference_schedule.pdf) “Megan Arroll, M.Sc., is a doctoral student at Thames Valley University, UK. Her Ph.D. is on perceptions of Chronic Fatigue and the influence of daytime catastrophizing and health anxiety.”

    One might split-hairs and say that catastrophizing and health anxiety are a sub-group of M.E. but the fact remains that Dr Arroll represents both herself and her published work in different ways according to whom she is addressing. If the IOM wish to hear sincere and authentic testimony, IMO they will be wasting their time listening to Dr Arroll who does not seem to know what she believes.
     
  20. lnester7

    lnester7 Seven

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    Give this to reporters to dig into, wait for the IOM in the door and question them the day of the meeting on what was the logic.
     

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