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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. lnester7

    lnester7 Seven

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    I am doing my Low Natural Killer Cell, I am doing my Low T cells, I am doing my hh6v, Parvo, coasaxie, EBV reactivation, I am doing my dysautonomia, I am doing my BRAIN WHITE LESIONS, I am doing the EEG to give abnormal heart beats! I have the power to control My Blood pressure, I AM DOING my Stage 4 issues on my sleep study. I also doing my t4 to go low........

    WAIT...... I AM CUREDDDDDDDDDDDDDDDDDDDDDDDDDDDD.

    Yeap this technique really works....We all can control our body. I don't understand how all deceased exist.

    END SATIRE in case you didn't get it.:bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    To clarify Megan Arroll's personal view of ME/CFS as indicated in her PhD thesis in 2009:

    Untitled.gif

    It's based on a diagram and model from other "researchers" but this one contains her own additions and elaborations based on her beliefs about ME/CFS.

    I've read the first 100 pages of her thesis and it is 100% hard core bioPSYCHO(social) bullshit.

    She realizes that ME/CFS patients prefer "alternative" treatments, but fails to distinguish between actual medical care (considered alternative by the BPS school since only CBT and GET are recommended) and peripheral things like nutrition, relaxation, vitamins, yoga, or homeopathy. It seems likely that she's willing to incorporate nutrition (but certainly not medical care) into treatment as a way to either sucker patients into getting the CBT they'd rather avoid, or as a way to be more attractive to clients for financial gain.
     
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  3. A.B.

    A.B. Senior Member

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    Thanks Valentijn. This settles it for me. We should definitely send a letter objecting to the choice of Megan Arrol as speaker. This psychonuttery must be opposed.
     
    Last edited: Apr 12, 2014
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  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    I'd like to know who selected her to speak, and why.
     
  5. Sidereal

    Sidereal Senior Member

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    Persimmon and Wildcat like this.
  6. Wildcat

    Wildcat Senior Member

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    Thanks for posting the flow chart from Megan Arrol's Phd, Valentijn. Spells it out, doesn't it. And it looks bad.

    Is there a link for that, for future reference?

    .
     
  7. N.A.Wright

    N.A.Wright Guest

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    Has anyone suggested a witchhunt is in progress ? The concern about guilt by association is perhaps prompted by the language the background material is set in.

    A relevant question to ask is apparently - why Arroll and Bansal elected to be associated with Vivienne Parry ? Well are there that many potential Patrons of ME charities, who have funding expertise, connections in Funding Trusts and are members of the MRC Board ? It's nice to think that we have so many choices for getting money and support into ME research. The likely scenario is that Arrol and her co Trustees we very pleased to have Parry as Patron and quite separately, equally pleased to get Bansal as Medical Advisor.

    For a patient group so lacking in friends and support, it always amazes me how easily the implications of bad faith, bad intentions and general maligning of people who do become involved, are spread around like so much toxic confetti. It's a wonder we have any friends or supporters at all.

    I wouldn't have invited Megan Arroll to addresss the IOM, because I think she comes with too much baggage (Optimum Health) to be able to usefully move the process forward, as she has been invited, I hope I'm wrong. But flailing around to impugne anyone who might have an untoward association as a means of demonstating Aroll's unfitness is not a sensible way of going about things.
     
  8. Wildcat

    Wildcat Senior Member

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    Well, Firestorrm's post stated that he would let those who had critiqued Megan Arrol's research "get back to the pyre", amongst other things.
    .
    Some people posting here have substantial familiarity with Megan Arrolls research and career, it would appear unreasonable to dismiss ME patients concerns re her research history as "guilt by association".

    .
    And its less a case of ME people implying "bad faith", or "scattering toxic confetti", and more a case of high levels of scepticism about Vivienne Parry's good concern for ME research, from patients substantial knowledge of her past activities of involving herself with ME.
    .

    .
     
  9. Valentijn

    Valentijn Activity Level: 3

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    That would be Firestormm on the previous page: "Anyway, I'll let you get back to building the pyre.", etc.

    But I agree that guilt-by-association is irrelevant, especially when you get into something as tenuous as her association with LP. OHC specifically rejects some aspects of LP, while incorporating others, and none of their people are LP practitioners now. And Arroll has never been involved with LP, as far as I can see.

    On the other hand, Arroll is officially listed as going to the meeting as the research director of OHC. That would suggest that her (past or present?) work for OHC is relevant to her presence there, hence it may be relevant to look at OHC's practices and beliefs if she is indeed representing them.

    Like you, I was wondering how closely involved she is with OHC and their beliefs about ME/CFS - after all, doing research for them might have just been a job with people whose beliefs and approaches she didn't necessarily agree with. So I've been reading her thesis, and she is indeed very much a proponent of the purely psychological model. Please see her chart a few posts above this one for her rather recent view of how ME/CFS works.

    Personally I find it quite objectionable to have my illness blamed on my supposedly dull and unfulfilling yet busy life, focusing too much on symptoms, catastrophizing about activity, personality deficits, and treating normal bodily sensations like an illness when they aren't. Having her speak to the IOM is nearly as bad as having Wessely or Sharpe speak to the IOM, and I think we should strongly object to it, as her theory is based on unprovable beliefs and contradicted by a vast amount of real research.
     
    Last edited: Apr 12, 2014
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  10. Wildcat

    Wildcat Senior Member

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    NA Wright wrote: "Well are there that many potential Patrons of ME charities, who have funding expertise, connections in Funding Trusts and are members of the MRC Board ? It's nice to think that we have so many choices for getting money and support into ME research. The likely scenario is that Arrol and her co Trustees we very pleased to have Parry as Patron"

    .

    .
    Can we possibly imagine Invest in ME or ME Research UK welcoming Vivienne Parry as their Patron?
    No we can't, in fact the mind boggles. Were such an impossible thing to occur, the vast majority of ME patients would concude that the research charities had lost their centre of gravity, and lost all credibility.
    .
    But I am happy to say that IIME and MERUK would not be so unwise.

    .
     
  11. N.A.Wright

    N.A.Wright Guest

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    My literalism didn't connect the execution with the hunting. I actually thought the 'pyre' referred to a more general burning (of what's left) of ME patients' and organisations' reputations as reasonable people/groups.
    .
    So why mention Bansal ? A clinician and researcher whose work would appear unequivocally supportive of patient interests. A deconstruction of Arroll's work is entirely appropriate in demonstrating why she may not be a good choice to address the IOM - but that's the work not the person. As for the stuff about Parry, that is wholly 'by association' : Wessely is bad, Parry knows Wessely therefore Parry is bad, Arroll knows Parry, therefore Arroll is bad. - and just for good measure Bansal knows Arroll, so he's doomed too.

    UK Medical research and non profit funding is a pretty small world, when one starts creating lists of enemies and non people, those lists start feeding back to friends, colleagues and competitors, and the whole field gets a sense of potential oppression - after all, who's next ? People then get defensive and decide certain areas of research and/or funding are best avoided and just not worth the hassle, if you want medical glory or funding success, stick to cancer or infant illnesses. Why on earth bother with bunch of moaning middle agers where research offers no obvious return ?

    We are an unattractive proposition in a world full medical promise, sexy diseases, and far sexier patient populations, Prom Queens (or Kings, in a non gender specified context) we are not and a bit more realism about our place in the world and how to make friends in it, would be major step forward.
     
  12. Wildcat

    Wildcat Senior Member

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    @ NA Wright - as I have not mentioned Wessely, but have posted a link to material that critiques Ms Parry's statements in a Times article, in which she misrepresents the origin and management of a project which she herself instigated (The Prime Project), its difficult to see how your "by association" statement was arrived at. To be honest it rather insults my intelligence and the many hours following and investigating the pointless and time and energy wasting Prime Project, though much of the material relating to Prime is no longer online. The benefit of the Prime Project (all £320,000 of it) is nowhere to be seen.

    Patients don't appreciate being repeatedly and gratuitously described as "an unattractive proposition" with the accompanying suggestion that the historical and current lack of bioresearch in the UK is the fault of the patients.
    It isn't. .
    Buying into, and repeating, character assassination propaganda against ME sufferers does patients no favours.

    The concern about Megan Arrol's invitation to speak at the IOM meeting in May is valid, and should not be stifled.

    It would be of more value to read her PhD to understand the concern.

    As for researchers being 'put off'..... there is absolutely no shortage of psycho-social, psychology based, and CBT research on loosely defined 'CFS' and vaguely defined 'fatigue' in Britian, and no sign of the researchers being 'scared off' . In fact there is an excessive amount of it when compared with ME bio-research, let alone when compared (in quantity) with ME bioresearch on well defined patient population. Student questionaire based studies (BA/MA/MSC) particularly in Health Psychology courses and Modules, on loosely defined 'CFS', appear to be quite popular, the subject usually being 'Living with chronic illness', the effects of positivity, etc etc.

    There is certainly no sign of UK CBT and other psycho-social based researchers backing away from seeking yet more funding for yet more 'CFS' studies.

    As the existence of long term international ME bioresearchers attests, ME is an important but underfunded research subject. Researchers such as Dr Montoya's, Professor Lipkin's and other recent interest in doing bioresearch on ME was well attested at the recent US conferences, patient-blaming would appear to be old hat.

    Its a great shame that those researchers were not invited to speak at the May IOM meeting.
     
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  13. A.B.

    A.B. Senior Member

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    One doesn't make friends by bearing abuse with a friendly smile. It only sends the message that this behavior is acceptable. Besides, why would anyone want to be friends with biopsychosocial proponents? In hopes that they will accept to have made some wrong judgments? No, the only thing that could change their minds are hard facts. Speaking of realism, I believe the situation is what it is mainly due to hard facts being unavailable for a long time (and not due to ME/CFS patient's attitudes).
     
    Last edited: Apr 12, 2014
  14. Wildcat

    Wildcat Senior Member

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  15. lartista

    lartista Senior Member

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    Each of you make up your own minds as to what is best for the IOM meeting and write your letter. I think it is best you write you letter and state whatever you think...

    MUST EMAIL IT BEFORE APRIL 23rd.

    mecfsopensession@nas.edu

    I have an extensive list of her career but I will only list the ones I think are most important to this discussion of concerns. She is smart, driven, intelligent and positive. She was born in the USA though her blood line is English and from India. She comes from a family of affluence. She is actually probably a wonderful person who is LASERED FOCUSED on making ME/CFS be about OUR negative mental thoughts and behavior patterns. The more I researched her, the more I liked her as a person and her dedication... but not the way she is doing it at all... Some of you will have a COW as it is too much for you to read, to understand, so I suggest, YOU DON'T READ THIS and pass over this post. For the others of you... some of the links are merely the progression of her time-line and others are exactly WHAT WE WERE ALL AFRAID OF.... OK EVERYBODY READY TO HAVE A COW? If you have brain fog or other issues don't complain and whine, just skip reading it.

    1) Dr. Megan Arroll’s LINKEDIN endorsement from Alex Howard that he hired "her current firm" to perform research for him.
    https://www.linkedin.com/profile/vi...68078,VSRPtargetId:180677261,VSRPcmpt:primary

    Alex Howard, Entrepreneur, Psychological Therapist and Author
    We approached "Simply Research" to assist with an academic paper based on our clinical approach to treating ME/CFS. The project involved Simply Research initially getting a detailed understanding of our approach and conceptual framework and then going away and researching the academic evidence to support each of these areas.

    This was a complex project, involving clinical models, academic research and also understanding the conceptual framework developed by Ken Wilber, and finally how all of this fitted together.

    Dr Arroll was heavily committed to the project, bringing enthusiasm along with a great deal of experience in this area. She was realistic about timescales, costs and the scope of the project, and stayed focused right through to the end, despite this being a lengthy process.

    The impact of the resulting paper has been significant on our organization and is a piece of work we are all very proud of. I can wholeheartedly recommend working with Simply Research.

    Alex Howard
    CEO, The Optimum Health Clinicless (June 12, 2012, Alex was Dr Megan's client)

    2) She writes for NLP magazine.
    “Rapport is literally the best NLP magazine in the world, and you and your team are doing such a great job!!” Kris Hallbom, NLP Trainer
    Reading Quantitative Research Critically: Part 2 in RAPPORT MAGAZINE for NLP Professionals PUBLISHED: 2013 July/Aug. by Megan Arroll
    http://www.anlp.org/files/rapport-33-early-summer-2013_49_323.pdf

    Reading Quantitative Research Critically: Part 1 in RAPPORT MAGAZINE for NLP Professionals
    PUBLISHED: 2013 May/June by Megan Arroll

    http://www.anlp.org/files/rapport-32-late-spring-2013_49_312.pdf

    3) Her papers carry different titles depending on who she is presenting too. She tends to keep "the NLP words" out of the medical journals but when she is talking behind closed conference doors with NLP practitioners, she uses their lingo.
    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
    http://www.anlp.org/files/abstracts_11_206.pdf

    4) She speaks at their LNP events;
    http://nlpresearchconference.squarespace.com/presenter-summary/

    5) 2013 Her student’s paper on ONLINE THERAPY. She pushed the research that will benefit the services at Optimum.
    http://roar.uel.ac.uk/3481/1/2013_PsyD_Tsalavouta.pdf

    6) 2013 Chronic fatigue syndrome, A patient centred approach to management
    Volume 42, No.4, April 2013 Pages 191-193
    Megan Arroll PhD, FHEA, CPsychol, CSc, AFBPsS, is Director of Research, The Optimum Health Clinic, Research Department, London, England
    Discussion: It is important to reassure the patient that negative investigation results and the suggestion of treatment options that are also used for depressive illness (eg. antidepressants and cognitive behavioural therapy), does not mean that their illness experience is fabricated or that they are being treated for depression. Once red flag features are ruled out and any exclusory illnesses identified, a multidisciplinary pragmatic rehabilitation program can be implemented.

    7) Notice her title in bold. A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting.
    PUBLISHED: 2012 Nov. by Megan Arroll, Department of Research, The Optimum Health Clinic, London, UK.
    http://www.ncbi.nlm.nih.gov/pubmed/23166120

    8) The title is about the redfining of our thoughts
    The letting go, the building up, [and] the gradual process of rebuilding': identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome.
    PUBLISHED: 2012 Sep. by Megan Arroll, The Optimum Health Clinic, London, UK.
    http://www.ncbi.nlm.nih.gov/pubmed/22963543

    9) I ordered her corporation documents online and it is pretty much an empty shell of a business. She added a start up loan for about 15k pounds and the balance has not really changed, though it carry a non taxable status, which must serve her in some way. I believe maybe a line to pretend separation from Alex's group. Maybe a way to separate her emotional and professional attachment to Alex's group and NLP
    SIMPLY RESEARCH LIMITED Incorporated On 17-05-2011
    2011 SECTION J Information and communication
    Category: Total Exemption Small
    SIC: 63990 - Other information service activities not elsewhere classified
    http://www.dellam.com/07636826-SIMPLY RESEARCH LIMITED

    10) Name listed as one third owner in her NONPROFIT but then resigned right away. Further searches on this name has this person resigning from 10 different companies right after start up. "The name" had that habit but I can not confirm this high up person in the USA is the same person in England, though Arroll has family times back India and this fellow has ties to England. It has I beleive her mom listed as 1/3 also but then right away the other two parties had it all over to her, which is all legal and fine, Just a strategy of some sort.
    http://quest.nasa.gov/people/bios/aero/rabi.html
    https://www.thecompanymerchant.co.u...house-documents.html?companyid=07636826&doc=y

    11) This is one of the earliest paper I could find and it is quite interesting the concept. It seems that this is what she has made her life's career around... needing to have positive thoughts to make all better, which is really a good idea but not too good to be making our illness seems like it has mental weaknesses of character...
    2004 The Relationship Between Daydreams, Thought Control Strategies and Health Outcomes
    Jason Ellis, M.Sc., Megan Arroll, M.Sc.
    This current study examined individual differences in the relationship between daydreaming activity and health outcomes. A general population survey of 715 participants demonstrated gender and age differences in daydream activity and the use of positive cognitive coping strategies, and an association between negative thought control strategies and poorer health outcomes.

    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. Her research interests also include sleep as a health behavior and the effects of daydreaming valence on cognitive performance.
    http://www.asdreams.org/2004/conference_schedule.pdf

    She whole heartedly believes that this is a real illness but that our minds seem to have exaggerated it all.... there fore we need NPL to clean ourselves up.

    12) Changes gears for one minute...
    In Norway a 13-year-old boy attempted suicide after doing the Lightning Process course because “He could not get well, and felt it was his own fault.” This was not due to a child misunderstanding and blaming himself. As far as I’ve been able to find out the only reason Lightning Process practitioners give for the Lightning Process not working is course participants not applying it properly. See, for example, the comments from Phil Parker (who designed the Lightning Process) in the article,Lightning process – your experiences from the Action for ME journal.
    http://multiplechemicalsensitivity....mpted-suicide-after-lightning-process-course/

    13) VERY INTERESTING POST AND BE SURE TO READ ALL THE COMMENTS:
    Shedding light on the lightning Process
    PHIL PARKER’S LIGHTNING PROCESS DIDN’T WORK FOR ME.
    The Lightning Process is the latest 'miracle' cure for M.E and Chronic Fatige. It is shrouded in mystery because they drill it into participants that if they tell anyone about it it won't work.. It has worked for some people but not for others. It is based on affirmations and counteracting negative thoughts if you are already familiar with such things it will not be anything new for you. I paid £550 to go on the course because I couldn't find out what it was really about. This is why I have written this.
    http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

    14) Read the general idea of the technique for Lightening Process and see what you think....?
    http://forums.prohealth.com/forums/index.php?threads/try-the-lightning-process-for-free.192713/
    BLUE BOTTLE WROTE:
    I have very major misgivings about the way the Lightning process is marketed & the way it is promoted as a cure, but If you want to save $1,600 here it is for free:

    How to do the LP

    Mark a rectangle out on the floor or stand on a rectanglar doormat.

    Note that it has four edges and four corners.

    The far left edge is THE PIT - this is where we go when we are 'doing' ME...

    Someone standing in the STOP position stands outside the doormat with their toes pointing towards the left edge. So they are at your left and facing you.

    Someone in the CHOICE position stands at the front left corner of the mat, on the outside with their toes pointing towards the centre of the mat. So they are at the left corner in front of you and facing you.

    Someone in the COACH position stands directly in front of you like a mirror image.

    You will move through all these positions.

    So the first step in the process is to recognise when you’re in THE PIT. Maybe sometimes or all the time

    It’s important to recognise what you say to yourself as you go into the pit. For example “I’m feeling really ill this morning”, “if I do this, then I’ll get exhausted”, “last time I did this I got really ill for days”, “I can never eat this” etc.

    This takes some practise but we were assured that you always say something in your head as you go into the pit.

    As soon as you spot one of your “pit” phrases you want to STOP yourself right away.

    So imagine you’re on the mat and you start to say “I feel really ill today”. Before you get to the end of this phrase you will interrupt with a very firm, loud “STOP” (yes, talk out loud to yourself!) and jump into the STOP position as described above. So you jump outside the mat, to your left.

    Now you’re here you have interrupted your bad thought patterns. In NLP terms (this wasn’t taught in the LP course) I think this is called breaking state.

    Now you move to the choice position (as above). So you move slightly to your left. Stand as if you’re weighing two things up in your hands. To your right is the pit and to your left is the coach’s position. So what choice will you make? Will you go into the pit and carry on with your old thinking? Will you do something different and move to the coach’s position.

    Of course the idea is that you will do something different. It’s pretty important to be very firm about this choice and not just move on without thinking. You need to really mean it when you say you are going to avoid the pit. Uncertainly at the choice position can lead to you looping round the process without too much effect.

    Once you’ve decided to do something different then step into the coach’s position. Now you imagine you are coaching yourself. So a version of you is in the middle of the mat and the coach (whose part you will play) stands directly in front of you and coaches you.

    You need to write this in permanent ink on your mind: the first thing the coach always says is “well done”! He/she says it in a very enthusiastic and genuine way. (at this point you might want to pant like an excited doggy - oh sorry - I added that bit...)

    The point is that you have made the choice to do something different and that is a big achievement and you should be praised for it.

    Now step back onto the mat as yourself (i.e. facing the coach) and say, “thank you” to the coach and fully accept his/her praises.

    Now back to the coach’s position and give yourself a little motivational speech. It can be something along these lines: I’m here for you every step of the way, I’m going to coach you all you need and I’ll never let you feel alone. I’ll be here to kick your backside when you need it, because I’m your coach. You’re doing really really well. Hang in there – you’re great!”

    Then as the coach you ask yourself “what would you like?”

    Now step back into yourself and answer the question. This could be one of a few things: energy, a comfortable back , to 'do' calm. There’s an endless list and you’ll choose the right thing for you at the time. It could be something very simple like “to go and chat with a friend”.

    Then get back to the coach’s position and ask “how are you going to do that?”

    The answer might be simple, like “phone up my friend Fred” or something. But let’s take the example of energy.

    Here’s what you do…

    Give your energy right now a rating out of ten.

    You remember a time when you had lots of energy (if you can’t remember then imagine). Get really into this memory and make sure you remember it in minute detail – totally recreate it in your mind. What did you feel? Where were you? Who were you with? What did you see? Shut your eyes and totally transport yourself to that time. Feel that energy you felt then. Now when you’ve really got that feeling: imagine taking it and pouring it into yourself as you stand on the mat in the present time.

    Remember also to position your body as you would if you had energy. (Poised and upright with shoulder back etc)

    Now rate your energy again.

    Anyway, that’s an illustration of the process.

    One thing to point out is that the STOP at the beginning must be very firm. We had to do a hand signal (a bit like a policemen) to emphasise it.

    The idea is that using the LP, we constantly start accessing good memories and then these become more easily accessible and the bad ones start to fade.

    We’re kind of wiring up our brains to access positive things. Imagine that it’s like walking through a field of golden grasses. Our pathways to the bad memories (feeling sick and tired) are well worn but we need to let those grow over and walk some new pathways to more deeply buried good memories.

    If we imagine things vividly enough then the subconscious cannot tell the difference between our imagination and real memories (apparently) so if we haven’t got the memories we need, then we just imagine them for the purpose of the process.

    Gradually this process interrupts our stressful negative thoughts and the idea is that it breaks the adrenalin loop and adrenalin levels start to fall.

    The key thing is that you must be totally consistent. You have to jump on every single negative thought and LP it right away. I think people can end up saying STOPs 30-40 times even in one morning.

    OK - so now you can all try it. Be warned it has put people into major relapses, who have then been told they're not doing it properly.. BLUE BOTTLE wrote this above.

    15) each of you make up your own minds as to what is best for the IOM. I think it is best you write you letter and state what ever you think...

    MUST EMAIL IT BEFORE APRIL 23rd.

    mecfsopensession@nas.edu
     
    Wildcat likes this.
  16. lartista

    lartista Senior Member

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    Since I live in Italy and am closer to England... this is old news for me but for some of you this may be NEW news...

    The
    Lightening Process which is like a kind of like "remake" of NLP for ME/CFS and other somatic illness, through their "so called research" push the test market onto kids... yes kids... But just remember... these are OUR babies... sick with ME/CFS...

    http://multiplechemicalsensitivity....mpted-suicide-after-lightning-process-course/

    Public reaction to research[edit]

    Research into chronic fatigue syndrome is often a target of criticism and even personal attacks by campaign groups.[4] The SMILE study received some public criticism for recruiting children when adult subjects are available.[19][20][21] The study was approved by the National Research Ethics Service.[4][22] The paediatrician supervising the study, Esther Crawley, who was singled out for personal attack, has commented "If the Lightning Process is dangerous, as they say, we need to find out. They should want to find it out, not prevent research."[4]

    http://meagenda.wordpress.com/2010/...-prof-robin-gill-church-times-lp-pilot-study/

    http://www.investinme.org/Article-501 Childrens Study.htm

    http://www.meassociation.org.uk/stu...ss-is-unethical-says-joint-charity-statement/

    http://onlinelibrary.wiley.com/doi/10.1111/j.2044-8287.2012.02093.x/abstract

    http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/smile.html

    http://www.meassociation.org.uk/201...to-lightning-process-and-children-with-mecfs/
     
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  17. Wildcat

    Wildcat Senior Member

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    Incisive critique, in the BMJ Open, of Alex Howard and Megan Arroll’s study

    ‘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

    Dr Keith Geraghty, Public Health Researcher, Manchester University, makes a detailed critique of the study in both his responses.

    http://m.bmjopen.bmj.com/content/2/6/e001079.full/reply#bmjopen_el_6706
     
    Last edited by a moderator: Apr 13, 2014
    Valentijn and Roy S like this.
  18. lartista

    lartista Senior Member

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    GREAT JOB!!!!!!!!!!!!!!!!!!! GREAT FIND!!!!!!!!!!!!!! Written by apro!!!!!!!!!!!!!
     
  19. Roy S

    Roy S former DC ME/CFS lobbyist

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    451
    Illinois, USA

    The IOM statement said:
    "The objectives for the committee during this open are...

    and to seek input from patients and caregivers regarding their interaction with health care professionals."
     
    Well, sometimes it's kind of like interacting with Monty Python -- who expects payment and enraptured appreciation for his latest version of The Emperor's New Clothes with the music from The Twilight Zone playing in the background. At other times it just gets downright strange.
     
     
     
     
    Wildcat likes this.
  20. Kina

    Kina Moderation Team Lead

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    4,312
    Ontario, Canada
    Why on earth is the IOM paying to fly a 'psychologist' over from England, put her up in a hotel in order to speak for 30 minutes when she is in fact not qualified to speak on the neurocognitive impairments of ME/CFS at all? :bang-head::bang-head::bang-head:
     
    SOC, ukxmrv, Cheshire and 6 others like this.

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