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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. ukxmrv

    ukxmrv Senior Member

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    I've met Meghan Arroll at a meeting organised by AfME and heard some of her views first hand.

    My personal opinion is that I would strongly oppose her inclusion on any subject related to ME. If I had a CFS diagnosis I'd also worry.
    Wildcat, SOC, Peter Kemp and 5 others like this.
  2. daisybell

    daisybell Senior Member

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    Surely the Zinns would have been a more appropriate choice?
  3. Wildcat

    Wildcat Senior Member

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    Did Megan Arroll ever refer to ‘ME Subtypes’ before joining the Optimum Health Clinic staff?

    The so called ‘ME subtypes’ that the Optimum Health Clinic have promoted over the years (from at least 2009) are those which Alex Howard himself invented, before Megan Arroll joined the OHC.

    Alex Howard’s ‘ME subtypes’ appear to be Enneagram-inspired pseudo subtypes that had no existence in relation to ME outside of Alex Howard’s own spurious definitions based on his own NLP, and personal growth interests

    From the OHC post outs and videos over the years it looks like the OHC conflated the idea of ME subtypes with Enneagram personality typing.
    Last edited by a moderator: Apr 14, 2014
    Peter Kemp likes this.
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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  5. akrasia

    akrasia Senior Member

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    There is something pathetically ersatz about all of this.

    I posted this on Onward Through the Fog:


    "A friend suggested this scenario: the IOM felt that the psychosocial should be represented, so rather than go with one of the infernal triad, Wessely, White, or Sharpe, or even Chalder or Crawley, an act which would have drawn down the wrath of patients, they chose Megan Arroll, ensuring that what would have been calls to the barricades becomes snorts of scorn and bemusement. It's a kind of backfire, allowing the psychogenic view to be represented, while minimizing patient anger." (I've tweaked it a bit for clarity)
    Peter Kemp and Wildcat like this.
  6. Wildcat

    Wildcat Senior Member

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    Corporate Optimum Health Clinic and ‘The Pear Company’
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    Alex Howard appears to be exploiting the Howard/Arroll ‘ME/CFS’ studies in the advertising for his Corporate Coaching company ‘The Pear Company’ as evidence of the ‘success’ of his methods for preventing employee burnout and ill health. Alex claims “his research and expertise further reinforces PEAR’s expertise and cutting edge position in the Organisational performance and health and wellbeing sectors.”

    Prospective corporate clients may be unlikely to follow up the strong critique of those studies. The ‘Pear’ website statements by the OHC’s Alex and Anna Duschinsky give the strong impression that ME is ‘really’ stress related burnout.The Optimum Health Clinic’s research, and the innovative, yet proven tools it has developed are now available to the corporate world through Pear.”

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    The Pear Company advertising frequently refers to Alex and Anna’s work at the Optimum Health Clinic as on “Stress related illness, Burnout and ME/Chronic Fatigue”. Alex refers to his own “burnout” and Anna Duschinsky’s Bio claims that “Her work at The Optimum Health Clinic has seen her contribute to the development of world-class protocols for the treatment of stress-related illness and ‘burnout’
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    http://www.thepearcompany.org/media/
    ‘Pear work with organisations to improve the Performance, Energy and Resilience of their employees.’



    OHC’s Alex Howard and Anna Duschinsky’s Corporate Coaching company ‘The Pear Company’, states that Pear’s Doctor/Psychiatrist “can liaise with patients’ GPs, and the Client companies’ health insurers and income protection providers to facilitate funding for the ‘recommended treatments’.”


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    http://www.thepearcompany.org/media/

    June 2013

    PEAR co-founder publishes academic paper on post-traumatic growth

    ‘Pear co-founder and director Alex Howard has recently published a paper on post-traumatic growth in leading peer reviewed academic journal “Psychology and Health.” This paper was the result of in-depth interviews of sufferers of ME/CFS and explored how their experience of chronic illness had affected their sense of identity. The paper was particularly notable as it is the first publication to explore post-traumatic growth in ME/CFS….’

    ‘The letting go, the building up, [and] the gradual process of rebuilding’: Identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome’ Arroll. Howard.
    http://www.tandfonline.com/doi/abs/10.1080/08870446.2012.721882#.U0zliFKLiig


    And:

    ‘A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting’
    BMJ Open 2012;2:6 e001079 doi:10.1136/bmjopen-2012-001079’

    http://bmjopen.bmj.com/content/2/6/e001079.full


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    http://www.thepearcompany.org/media/

    March 2013

    'Pear Co-founder and Director, Alex Howard is also the Founder and CEO of the Optimum Health Clinic (OHC). OHC recently had a groundbreaking study published in the British Medical Journal Open exploring OHC’s innovative work with ME/CFS. The study was a preliminary prospective study, and found statistical improvement in all groups after three months. Alex Howard said of the study:

    “We are hugely proud of everyone that has been involved with making this study happen. For a privately funded clinic we have made an unprecedented investment in research over recent years and it is very heartening to see this continue to come to fruition. We are now working on plans for a randomized controlled trial (RCT), and look forward to inviting support to make this possible over coming months.” '

    You can read the full study at http://bmjopen.bmj.com/content/2/6/e001079.full

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    http://www.thepearcompany.org/why-pear/
    Proven Protocols – Alex Howard is the founder, CEO and driving force behind one of the world’s leading integrative medicine clinics, and a specialist in the research and treatment of M.E./CFS, burnout and other stress-related illness. The Optimum Health Clinic’s research, and the innovative, yet proven tools it has developed are now available to the corporate world through Pear.
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    http://www.thepearcompany.org/blog/welcome-to-the-blog/
    Our advice is informed by the pioneering work and cutting edge research conducted by Alex’s organization, The Optimum Health Clinic, one of the world’s leading integrative medical clinics, and a specialist in the treatment of Stress related illness, Burnout and ME/Chronic Fatigue.
    http://www.thepearcompany.org/services/additional-consultancy-services/


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    Medicine and Clinical Psychiatry


    Pear’s Medical Doctor and Clinical Psychiatrist is able to assess Client patients and recommend the appropriate protocols to prevent burnout and chronic illness, or to recover from these challenging circumstances. She is able to liaise with patients’ GPs, and the Client companies’ health insurers and income protection providers to facilitate funding for the recommended treatments.
    http://www.thepearcompany.org/media/

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    http://www.thepearcompany.org/blog/

    PEAR co-founder publishes academic paper on transformational change in the workplace

    PEAR Co-Founder, Alex Howard has published a paper on transformational change in the workplace. Transformational change is a particular specialism and passion for Alex, and his research and expertise further reinforces PEAR’s expertise and cutting edge position in the Organisational performance and health and wellbeing sectors.

    Transformational Change in the Workplace - The Pear ...
    www.thepearcompany.org/transformational-change-in-the-workplace/
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    ‘Transformational change is a particular specialism and passion for Alex, and his research ... in peer reviewed journal “The Journal of Integral Theory and Practice.”

    Using principles from Integral Theory, the paper is a primary research study ...’
    Page 76: ‘Another aspect was the theme of crisis as a facilitator for transformation. Alex [Howard] describes his “burnout” ….. which was accompanied by a feeling of being lost and inner turmoil’.

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    http://www.thepearcompany.org/about/the-people/
    Anna Duschinsky – Coaching Director

    Anna is an experienced Coach, Trainer and NLP-based therapist with thousands of hours of clinical practice and delivery behind her. She gained a Masters from Cambridge University in languages and linguistics, and went on to train as a Master Practitioner and Trainer of NLP, a Coach and Hypnotherapist. Over the course of her career, Anna has delivered one-to-one and group sessions to a spectrum of private individuals and corporate organisations, working in both public and private sectors.

    Her work at The Optimum Health Clinic has seen her contribute to the development of world-class protocols for the treatment of stress-related illness and ‘burnout’. Anna has developed particular expertise in trauma and resilience, studying for a Diploma in this area with Nottingham University, and travelling to Indonesia to train school and nursing personnel in dealing with post-tsunami trauma.

    As with Alex and Nick, she also suffered long-term chronic illness in the form of ME/CFS, and found her own path to recovery, vibrant health, and sustainable high performance. The multi-faceted blend of personal experience, study and research, and proven on the job delivery that Anna brings to her work, is typical of the Pear approach.
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    Peter Kemp likes this.
  7. Peter Kemp

    Peter Kemp

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    Although the video I mentioned earlier has been deleted, there is another which is still available. Though tediously long I found it amusing to see Dr Arroll and Howard talking for several minutes about her PhD without ever mentioning what the study was about other than getting the idea that it was something to do with 'ME/CFS'.

    http://vzaar.com/videos/861637
    Wildcat likes this.
  8. Nielk

    Nielk

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    It is quiet shocking to me that there is no great outcry about this selection of Arroll from the organizations who say they represent our benefits. Where are they? What if it was Wessely or White coming to speak, would they have spoken up then? Arroll is of the same thought. She might be unknown here in the U.S. but a short search will reveal to anyone what her beliefs are about ME/CFS and the more one searches, the more upsetting it gets. By inviting Arroll to speak to the IOM, (apparently they could not find anyone in the U.S. to represent cognitive impairments in ME?) it is a clear sign to me that what they believe they are looking at is simply idiopathic chronic fatigue - not M.E..

    The fact that there is no great outburst about this will not be lost by HHS/IOM. They now know that they can pretty much do as they please and get away with it. What will be next?

    In addition, I think that it is a mistake to reply to them about what to call the disease, before we are confident in what disease/syndrome they are actually defining. If the outcome is a definition fitting chronic fatigue, I certainly don't want them to call it M.E., Ramsey's or any other name.

    This point is really crucial: Which disease/syndrome are they studying?

    I am finally coming to the realization that we really don't have anyone looking out for us...we have only ourselves to rely on. I realize now that regardless of what the HHS and/or IOM does, our organizations will just go along with it because they don't want to fight the establishment. Some of these organizations claim that they can better influence the process from within and have tied to calm us by saying that the majority of the panel are "our" experts, yet they have let this major potentially dangerous agenda slip by?

    At the first open meeting in January, all the public comments were driven to show what a serious complex organic disease M.E. is. Is this their reply. Do you believe that we have been "heard"? If not, we need to speak out louder.
    We need to use every arsenal at our disposal to fight this.

    The question is: what will be the most effective way?
    medfeb, Peter Kemp and Wildcat like this.
  9. Nielk

    Nielk

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    One easy action we all could take is join the thunderclap to stop the IOM here.
    Marylib and Wildcat like this.
  10. Wildcat

    Wildcat Senior Member

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    Megan Arroll appears to have piggybacked her way into research that is ostensibly biomedical via Dr Amolak Bansal (St Helier Hospital CFS Clinic).
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    She appears to be trying to be all things to all people, as long as she is getting work.

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    Both UK charities Action for ME (AFME) and the ME Association now have truck with Arroll. Not that those charities take note of what the wider ME community thinks about the wisdom (or lack of it) of the charities’ actions.

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    UK charity Action for ME have given a place to Arroll on a charity subgroup (group to assess research partnering requests). BTW, another Action for ME subgroup member Dr Alastair Miller, is 100% Psychosocial, and has made some outrageous public statements about ME, but that didn’t stop AFME making him Charity Medical advisor, despite outcry from the patients .

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    Arroll has also (mysteriously) been made a Trustee of West London MEsh (ME Self Help Group), and the Richmond and Kingston Self Help Group (London) equally mysteriously gave Arroll rather a large amount of money to carry out a survey in 2009.

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    Is there any actual evidence that Arroll’s Survey funded by the Richmond and Kingston ME/CFS Group has actually subsequently strengthened “the case for support when approaching government agencies and other bodies” as was claimed of the Survey before it was actually done ??

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    Are these charities and groups not aware of Megan Arroll’s ‘psychologising of ME’ tendencies and history? Surely there are other suitable psychologists (with or without ME) who have actual qualifications and experience in Neuro-cognitive Function Testing and Assessment, who would be more suitable?

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    Criteria - Action for ME

    www.actionforme.org.uk/.../Action%20for%20ME/.../assessing-research-...‎

    Research Panel for discussion. Sub group members are: • Jane Young. • Sonya Chowdhury. • Megan Arroll. • Stephen Holgate. • Derek Pheby. • Alastair Miller.
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    Criteria for assessing research partnering requests
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    The following provides a summary of the criteria Action for M.E. will use to assess partnering requests from researchers/research teams.
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    The following will be completed by the CEO and circulated to a sub-group of the Research Panel for discussion. Sub group members are:
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    • Jane Young

    • Sonya Chowdhury

    Megan Arroll

    • Stephen Holgate

    • Derek Pheby

    • Alastair Miller.


    A quoracy of four members is required. The sub group are responsible for making recommendations to the Board of Trustees who will decide whether or not to proceed with the partnering request.
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    MEA Ramsay Research Fund to pay for new study into post-exertional malaise | 18 July 2013

    ME Association trustees have agreed funding of £31,000 for a study aimed at providing objective evidence of post-exertional malaise by looking at the effects of exercise on immune system function and cognitive function. The money will be put up by our Ramsay Research Fund…….

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    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.


    http://www.meassociation.org.uk/201...dy-into-post-exertional-malaise-18-july-2013/

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    https://www.facebook.com/actionforme/posts/169338413208

    Megan Arroll‎ to Action for M.E.
    14 October 2009 ·

    Richmond and Kingston ME Group recently commissioned a survey to collect information about people with ME in the area. This information will be used in the Group's campaigning activities as detailed data will strengthen the case for support when approaching government agencies and other bodies.

    If you live in the area and would like to take part in the survey, please visit:

    http://www.surveygizmo.com/s/114578/richmond-and-kingston-me-group-survey

    If you have any questions please contact me, Megan Arroll, at drarroll@simplyresearch.co.uk

    Kind regards,

    Megan
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    Peter Kemp likes this.
  11. Wildcat

    Wildcat Senior Member

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    ‘The Application of Integral Medicine in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’

    Alex Howard and Megan Arroll 2011

    http://freedomfromme.co.uk/publicat...ic-encephalomyelitischronic-fatigue-syndrome/

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    Pages 30 and 31 of this 2011 Paper by Megan Arroll and Alex Howard have to be read to be believed! This is a really confused hotchpotch mess of a Paper that tries to apply Ken Wilbur’s ‘Four Quadrants’ model to ‘ME/CFS’.
    Arrol and Howard try to be all things to all people, and end up promoting a hardcore psychosocial model of ME, whilst seeming to ‘appease’ the biomedical model.
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    Its an irrational mess of a paper, that attempts to appease everyone, by including biomedical factors alongside extreme psycho-social theory. Lots of references to psychosocial research.

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    This Arroll/Howard paper attributes ME/CFS patients with dysfunctional personalities and/or psychological dysfunction, such as having suffered extreme traumas (including sexual abuse), as supposed predisposing factors for the supposed ‘Trauma subtype’ of ME/CFS.
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    Eg: ‘In a sample of nearly 800 ME/ CFS sufferers, sexual abuse in childhood significantly predicted fatigue as did the total number of abusive events (Taylor & Jason, 2002).’

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    So, back to conflating undefined ‘Fatigue’ with ME yet again.

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    But then Arroll/Howard give examples of ‘trauma’ that are near universal life experiences. The ‘traumas’ that are claimed to be so prevalent prior to ME/CFS onset are near universal experiences such as ‘moving house’, change of employment’, getting married’, ‘death of a loved one’.

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    The so called ‘Helper subtype’ of ME/CFS that the OHC have invented “tend to constantly place the needs and wants of others above their own”.
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    Examples given include ‘childcare’ and ‘care of elderly relatives’ .
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    What planet do Arroll and Howard live on?

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    If people who later developed ME had failed to put their children’s needs above their own they could well have faced accusations of child neglect! So what are Arroll and Howard saying? That some people who develop ME are parents who, as is normal, put their children’s needs before their own?? That if after becoming sick with ME they may feel guilty due to not being able to care for their kids in the (normal) way they had before illness?? Normal reaction.
    Its only these psychosocial fans who tend to psychopathologise those responses.

    What ME sufferers who are parents need is recognition of ME as a serious disabling organic disease, more practical help, and realistic understanding!
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    What percentage of the population who are good parents, or who care for elderly relatives, or who change employment, get married, get divorced, lose a loved one……. DO NOT go on to develop ME???






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





    http://freedomfromme.co.uk/publicat...ic-encephalomyelitischronic-fatigue-syndrome/




    ‘The Application of Integral Medicine in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’

    Alex Howard and Megan Arroll
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    ‘This was the OHC Research Department’s first paper, and was published in the Journal of Integral Theory and Practice in December 2011. The paper, entitled, “The Application of Integral Medicine in the Treatment of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”, outlines the OHC’s approach within a model of integral medicine which uses Ken Wilber’s “4 Quadrants” model and is an academic version of the article originally published in CAM Magazine in 2009.’

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    Page 30:

    Upper Left Quadrant (Interior Individual)
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    Psychological subtypes


    _ • Achiever type

    _ • Anxiety type

    _ • Helper type

    _ • Trauma type

    Disease of the soul—crises of meaning

    Maladaptive stress response

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    Lower Left Quadrant (Individual Collective)


    Poor health habits (e.g., lack of

    exercise, poor nutrition)

    Sexual and emotional abuse

    Lack of emotional holding and support

    Culture of self-worth being defined

    by achievements

    Culture of looking for “magic pill”

    and not taking responsibility for health

    Culture of lack of understanding

    around ME/CFS and resulting isolation

    for sufferers
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    Upper Right Quadrant (Individual Exterior)


    Infections and immune dysfunction—

    viral and bacterial

    Endocrine—thyroid, adrenal, pituitary

    Mitochondrial malfunction

    Digestive problems (e.g., dysbiosis,

    Candida infection, food intolerance)

    Structural imbalances (e.g., spinal

    imbalance, temporomandibular

    joint disorder)

    Genetics

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    Lower Right Quadrant (Collective Exterior)


    Lack of funding for research

    Lack of funding for treatment

    Lack of benefits due to unknown

    etiology of ME/CFS

    Environmental toxins


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    Pages 30-31:

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    ‘At TOHC, we have developed a clear model of what we believe some of the UL factors involved in ME/CFS to be, partly based on certain personality types within the Enneagram model. We refer to them as “energy-depleting psychologies,” which are effectively ways of approaching the world that tend to burn down resources faster than they can be replenished. The four energy-depleting psychologies are the Achiever type, Helper type, Anxiety type, and Trauma type, which we will now discuss.
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    Achiever typesconstantly push themselves to do and be more than they are currently capable of. They are characterized by an inability to “be in the moment” and enjoy “what is,” instead always focusing on how they can be and do more.
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    This is similar to the trait of “action proneness,” a construct defined as a type of hyperactivity, which leads an individual to be driven toward direct action and achievement and which has been shown to be elevated in participants with ME/CFS as compared to individuals with chronic pain, chronic organic conditions, and neurotic disorders (Van Houdenhove et al., 1995).

    Significant differences were observed between the ME/CFS group and the latter two groups, although comparable degrees of action proneness were found between the ME/CFS and the chronic pain group, intimating the possibility of similar illness development in these two medically unexplained conditions. Additionally, individuals with ME/CFS were found to rate themselves as being more “hard-driving” before illness onset than control subjects (Lewis et al., 1994).
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    Helper typestend to constantly place the needs and wants of others above their own. They value themselves by their helping and supporting of others, and although in the eyes of society might be perceived as a “good person,” are often giving due to an internal drive that needs to be fulfilled. In a qualitative study investigating the daily worries of those with ME/CFS, it was found that the participants reported being very

    concerned with the well-being of others and felt a great deal of guilt at their inability to carry out as many “helping” tasks as they had done before the onset of their illness (Arroll et al., 2010). Additionally, when discussing pre-onset, the respondents often reported a high level of caregiving roles including looking after elderly parents, childcare, and generally feeling responsible for others’ well-being.
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    Anxiety typeshave an internal sense of fear, danger, and threat. They deal with this either by being outwardly fearful, or by becoming the opposite, and constantly try to convince themselves and others they are not afraid. Under the surface is an ongoing sense of things “not being OK” and the world not being able to support them. As previously stated, the effects of constant anxiety can induce a state of sustained physiological arousal that may perpetuate symptomatology in ME/CFS.
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    Trauma types can either have suffered a major event, such as a natural disaster, or some kind of physical, mental, emotional or sexual abuse, or what is known as “developmental trauma” where there is no single event. Generally, developmental trauma victims have grown up in an “unheld and unsupported environment”—

    these kinds of trauma are not generally digested without professional assistance, and therefore take a long-term toll on the body when not healthily worked through. Studies investigating major life events (e.g., moving house, marriage, divorce, change of employment, death of a loved one) found that those with ME/

    CFS reported significantly more negative life events prior to illness onset as compared with control subjects (Hatcher & House, 2003) and those with comparable disorders (Sundbom et al., 2002).

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    The Lower-Left Quadrant


    ‘Physical and sexual abuse has been associated with incidence of ME/CFS.2 In a sample of nearly 800 ME/ CFS sufferers, sexual abuse in childhood significantly predicted fatigue as did the total number of abusive events (Taylor & Jason, 2002). In comparison with fatiguing organic disorders (rheumatoid arthritis [RA] and multiple sclerosis [MS]), it was found that individuals with the medically unexplained conditions of ME/CFS and fibromyalgia (FM) had higher rates of emotional abuse, emotional neglect, and physical abuse, although this trend did not hold true for sexual abuse (Van Houdenhove et al., 2001). A sub-group of the ME/CFS/FM

    patients endured this abuse throughout their lives; the abuse did not occur as isolated incidents and was most often committed by close family members or partners.’



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    One wonders which of these theoretical so-called ‘Psychological subtypes’ and “energy depleting psychologies”, invented by the Optimum Health Clinic, that Megan Arroll and Alex Howard attribute themselves as suffering from?

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    Cheshire and Peter Kemp like this.
  12. Nielk

    Nielk

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    Sidereal, rosie26, catly and 7 others like this.
  13. Wildcat

    Wildcat Senior Member

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    We are so relieved that Megan Arroll will not be addressing the IOM Meeting on the 5th of May.
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    The idea that Arroll may have launched into one of her weird psycho-spiritual 'theories' about ME onset,
    such as ME sufferers' supposed predisposing 'Disease of the Soul' or 'Crisis of Meaning', doesn't bear thinking about!!
    .
    Peter Kemp, rosie26 and Kina like this.
  14. SOC

    SOC Moderator and Senior Member

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    WillowJ, Peter Kemp and Bob like this.
  15. Valentijn

    Valentijn Activity Level: 3

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    The new line-up looks quite good.
  16. Roy S

    Roy S former DC ME/CFS lobbyist

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    Peter Kemp, Wildcat and Nielk like this.
  17. Peter Kemp

    Peter Kemp

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    Thanks for the good news. I am still curious to know how Arroll was even considered to appear in the first place. If anyone gets any info I'd like to see it.
    Valentijn, Bob and Wildcat like this.
  18. caledonia

    caledonia

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    Maybe, but I think it's a red herring, possibly meant to appease opposition. It still doesn't fix all the other problems inherent with the IOM contract. We need to keep protesting to get the contract cancelled.
    Wildcat and Valentijn like this.
  19. shrewsbury

    shrewsbury member

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    If I've got it right - only 1/4 of of the meeting is what they call 'open', It's a 2 day meeting, and we know the agenda for a 1/2 day. We don't know if Megan Arroll is gone or if she got moved to a closed part of the meeting.
  20. Bob

    Bob

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    That's what I wondered.
    As the rest of the process is 'closed' how can we possibly know who they are seeking 'evidence' from most of the time?
    I notice that Lenny Jason has still only got a half-hour slot, which is unfathomable.
    Wildcat and Valentijn like this.

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