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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. Kati

    Kati Patient in training

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    Being on the record, telling our experience is important in my opinion.

    And for those that will say that it won't make a difference, then what are you suggesting?
    Our voices is sometimes all that's left. Social media is the strength that we have.
    jspotila and WillowJ like this.
  2. Kina

    Kina Moderation Team Lead

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    I think telling our experience is important too but what they really need to see are videos of people who are too ill to be there. They aren't seeing ME as it should be seen. The IOM needs to hear from doctors who treat Me. They need to hear from those who were involved in the CCC and ICC.

    What I would suggest that they treat ME like any other serious disease.
    Wildcat, WillowJ, NK17 and 6 others like this.
  3. Nielk

    Nielk

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    I'm sorry @Denise that you felt that these comments out there were insulting to you. You certainly do not deserve that. As I personally relayed to you, I felt proud of you and thought you did a real good job portraying the truth about this disease. I especially appreciated the fact that you kept pressing the importance of neurocognitive problems and the hallmark symptom of PEM or PEC (collapse). Those are two key issues to drive home.

    Many would have preferred if we had all boycotted the meeting since they feel that there is no legitimacy to these proceedings and they do not want patients/advocates to take part in it.

    I feel that since we did have representation, I am really glad that you took it upon yourself to attend despite the fact that it took such a large toll on your son and I'm sure yourself too. I hope that you all recover quickly.

    My personal frustration was in the fact that this was a great opportunity to drive home the fact that we need a strict set of criteria - actually I would have told them to adopt the CCC for now as our experts have advocated.

    The real problem is with the whole process and with the agenda that they have set for the meeting. I would have hoped like many others have stated that they would have asked some of our many experts who have had clinical experience treating thousands of patients to come and speak. I am dumbfounded that they did not feel the need to do that.

    I also understand that you were restricted in answering and following their questions. That's why I have stated that this whole process is a set up. It is all seems unreal. Are they really one meeting a way from setting diagnostic clinical criteria? From many of their questions, they seem totally clueless.

    You have stated that you think there are problems in the background as far as them actually providing a report. I would hope so and wasn't this then a total waste of time and money?

    Please don't take these comments personally. Under the circumstances, you were excellent!:thumbsup::balloons::thumbsup:
    Roy S, NK17, rosie26 and 5 others like this.
  4. Kina

    Kina Moderation Team Lead

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    Exactly -- @Denise, you did an excellent job :hug::hug::hug:
    rosie26 and beaker like this.
  5. Nielk

    Nielk

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    rosie26 and WillowJ like this.
  6. Nielk

    Nielk

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  7. rosie26

    rosie26 Senior Member

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    Perhaps we need to present severe ill ME patients via video live from there beds one time, those who are too ill to speak. It might speak louder than words. I would have offered myself up for this in my severe years. I get upset whenever I think of the severe ME patients - they are in a desperate hell.
    WillowJ, NK17, Ritto and 1 other person like this.
  8. Denise

    Denise Senior Member

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    PLEASE consider having people help make and send DVDs of patients who are very severely ill!


    The IOM ME/CFS Study
    Phone: 202-334-3169
    Fax: 202-334-2685
    Email: mecfs@nas.edu

    Mailing Address
    Keck Center
    500 Fifth St. NW
    Washington, DC 20001
    rosie26 likes this.
  9. Firestormm

    Firestormm Senior Member

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  10. jspotila

    jspotila Senior Member

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    Ah thank you, @Firestormm! I was just popping in to post the link in case people are interested in it. Lively discussion shaping up in the comments, too.
    WillowJ likes this.
  11. Leopardtail

    Leopardtail Senior Member

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    Kina,

    My response to this post may surprise you given my vehement dislike of overbearing psychological views in ME/CFS treatment and management. Put simply, if psychology has to be present on any such panel and expert opinion for it to be considered 'scientific and balanced' and Megan Arroll could be considered easily the best of a bad lot. I state several grounds for this:
    • She is when spoken to in person highly amenable to a mitochondrial view of the disease seeing psychology as 'only half the picture' and 'more suitable for some than others'.
    • She works at a facility that offers both physical and mental treatment 'as a package'. That clinic also actively refers to endocrinology. Hence given sufficient support from us, neither likely to overly ruffle the feathers of the psychotics, nor hostile to our views. She presents a potential 'gateway individual' or semi trojan horse to gain positive and more productive engagement within psychiatry.
    • I do agree that the clinic has slightly too high a percentage of psychology which is unsurprising given its directors however it's a softer and more practical model based on energy sparing and mood improvement. I do however understand this is unclear from the paper.
    To win the psychiatric debate, we need to choose our targets, we are otherwise going to seem warlike and illogical. If we justifiably criticise the ideas of White, Calder, Wessley and support the less strident (e.g. Arroll) our prospects are better. Throwing the baby out with the bathwater won't serve our purpose.

    Leo
  12. Leopardtail

    Leopardtail Senior Member

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    In similar vain to my comments above:
    • She is a psychologist and will publish papers with a psychological bent.
    • If spoken to in person however she regularly refers to endocrinologists and recognises the impact of thyroid hormones, adrenal insufficiency, insufficient dopamine production on mood - this is rare.
    • Most of the papers on physical treatments are published by doctors in private practice and are low scale. Most publicly funding papers are psycho-bullshit by interested parties (eg. PACE) as are most of the peer reviews in ME, hence the comments about 'funidng and self interest' with respect to private practice really hold limited water. Acadameics live in a fantasy world where they do not recognise that professors of medicine e.g. Wessley are publicly paid to treat patients and have a vested interest in promoting therapies in their field in the spirit of 'jobs for the boys'. This differs markedly from the field of physics for example in which the individuals are more likely to be pure professional researchers and less likely to be generating employment opportunity in the other half of their employment.
    The question we need to ask with IOM is 'which Psych do we want there?'.
  13. Kina

    Kina Moderation Team Lead

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    We shouldn't be having a psychiatric debate about a physical illness. :bang-head::bang-head::bang-head:

    We are not choosing our targets -- the IOM is choosing who speaks there. She shouldn't have ever been on their radar - ever - period. She was a dangerous choice. It's moot now because they uninvited her.
    Valentijn, NK17, beaker and 2 others like this.
  14. Leopardtail

    Leopardtail Senior Member

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    I would also prefer they were not involved at all.... but it is not likely to happen for decades. so far now would we rather have Wesley there? I would strongly prefer she published her newer and more balanced views though, .... whether a psych journal would want to publish her more moderate thoughts is another issue.
  15. alex3619

    alex3619 Senior Member

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    A composite clip made before hand of video testimony might do it. It does not even have to be long per patient ... its probably better if it isn't as they will crash less. Five minutes with testimony from ten patients, clipped together. It also does not matter if they cannot speak, or cannot do it or say much. That is silent testimony.
    beaker and rosie26 like this.
  16. Leopardtail

    Leopardtail Senior Member

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    I have had both forms of experience with the field Kina (positive and negative).

    One the one hand my long standing disputed diagnosis of depression despite almost every ME symptom was turned over by a psychiatrist who also help me write to a diabetic / endocrine specialist regarding interaction of the two diseases. He also referred me to a CBT specialist who used an 'energy sparing' model that assumed no aetiology. They also dealt with hardening to deal with family ignorance and abuse that subsequently prove vital dealing with nasty doctors. I realise that model is rare.

    On the other hand I was then sent to a Wesley school clinic that sent lies to my GP, screwed up my diabetes, caused me to lose ten nights sleep and well and truly screw up my ME so badly it took a year to undo the damage. I forgot the positive due to rage over this group and the damage done by Wesley/NICE,

    As you can imagine, I find it very easy to rant, reject psychology and be downright venomous towards the field, however I try to continuously remember that we have our friends (Jason having been recently mentioned) and want to ensure we don't piss off our friends while dealing with our persecutors thereby giving them ammunition.

    At least one of our persecutors is I suspect monitoring these forums, hence the caution.
  17. Kina

    Kina Moderation Team Lead

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    I know of more than one of our 'presecutors' monitoring Phoenix Rising. Why the caution? Let them hear us loud and clear. Psychobabble has no place in defining ME.
    ahimsa, NK17, Wildcat and 5 others like this.
  18. WillowJ

    WillowJ Senior Member

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    If people want to say supportive psychology has a place in aiding ME patients the same--same methods and philosophy, not just same therapy title with different applications depending on how they view the patients' personal attributes--as in any well-characterized chronic debilitating illness, that would be perfectly appropriate.

    However that is not what we were offered any of the times when we object.
  19. alex3619

    alex3619 Senior Member

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    I am not sure much of psychiatry is a problem with us, but I am very sure psychogenic psychiatry is. Its the shakiest area of psychiatry, more guesswork and rhetoric than anything rigorous or rational. I have long said many of us need some psychiatric/psychological help to assist us with coping. However so long as too many psychs are into psychogenic babble we quite rightly are unhappy with psychiatrists.

    There are exceptions of course, like Ellie Stein. If I were in Canada and needed to see a psych, I would be happy to see her. I met her once. She is deeply committed to ME and CFS, and anti-psychobabble.
    NK17, WillowJ, rosie26 and 1 other person like this.
  20. Andrew

    Andrew Senior Member

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    She was invited because they needed more input from people who use the weakest criteria in the world.
    Wildcat likes this.

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