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IMEA-New M.E. Association

Discussion in 'General ME/CFS News' started by Ana, Mar 7, 2011.

  1. muffin

    muffin Senior Member

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    Let them have their shot at advocacy. The more the better BUT harm can be done to our cause if individuals and groups do not play strictly by the rules. Watch and see if this is a group you feel you can support.
  2. dannybex

    dannybex Senior Member

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    Hi Suzy,

    I've heard similar horror stories by several members who finally just gave up and quit.

    I don't know what Gerwyn's qualifications are, but the one thing that I find puzzling, and frustrating, is that he rarely mentions that he recovered by 80% by doing b12 and magnesium injections, even when the subject is brought up, as it is in this thread:

    http://www.mecfsforums.com/index.php?topic=3694.0

    But he mentioned it on two different threads (out of the hundreds he posted on here) as being 'transformative', and turning him from a vegetative state to one of being able to function at an 80% level. I can't pull up the threads now, because they were on the old version of the forum, but perhaps someone can locate a cached version.

    My point is...even if he believes strongly in the XMRV connection and is pushing for more research (which is great)...in the meantime, if he truly wants to help others, why doesn't he mention this more often? It may not be curative, and it may not be helpful for everyone (in fact it might be harmful for some), but yet he remains silent regarding this simple yet often effective treatment that could make a big difference in the lives of his fellow patients.

    Truly puzzling.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    fwiw- IMEA said when it launched it isn't soliciting/accepting donations yet; I think until it gets incorporated. They request donations to WPI.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Patricia from IMEA has told me that IMEA will not be posting on Phoenix Rising. I have posted on the mecfsforums.com thread on IMEA (reply #57) a link to here asking that IMEA look over people's questions and respond on that thread on mecfsforums. The thread is in the public area of the forum so anyone can post there without becoming a member, as I understand it.

    http://www.mecfsforums.com/index.php/topic,6029.new.html#new
  5. Merry

    Merry Senior Member

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    Thanks, Justin, for your efforts to provide information.

    So if the IMEA's official policy is not to post on Phoenix Rising, does that mean that no more posts from Wild Daisy and Ana will be forthcoming here? Is Ana, the user who started this thread, indeed Patricia Carter?

    Does the IMEA's unwillingness to post on Phoenix Rising mean that IMEA sees Phoenix Rising as an adversary? And CAA is an adversary? And PANDORA? I do know something of the history of the disdain members now forming IMEA have for PR and CAA. If they have a problem with PANDORA, what is it? Who in the ME/CFS community are members of IMEA willing to work with?

    If I were to ask questions at mecfsforums.com (can I really do this without registering?), am I assured of being responded to politely? At the moment, because of negative reports I've heard about what goes on at that forum, I am not willing to post on mecfsforums and risk further damage to my health.
  6. maryb

    maryb iherb code TAK122

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    Suzy I have the utmost respect and admiration for you, for what you have done and continue to do for the ME community, I also have a lot of respect for Gerwyn, he has made the science at least readable if not understandable at times for those like me who are very interested, but lack the cognitive skills due to this illness, in addition he has been able to challenge the scientists because of his knowledge.
    If that sounds like I am trying to appease people I apologise, I'm not but I can't go too deep into things because of my limitations, that probably makes me naive, I have to accept that.
    The WPI and people like Gerwyn have rattled the cages of the psychs as far as I am concened, for Wessley to move from his cushy chair to join the likes of McClure in that pathetic study proved to me they were uncomfortable and continue to be so. For that I am particulary grateful, it hasn't happened for a long time as far as I can see, no matter what the UK ME organisations have said and done.
    I still believe that the IMEA may further our cause in a positive way through this meeting and think it can only be a good thing.
  7. Kina

    Kina Moderation Team Lead

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    Interesting. Justin posts a link on the me/cfs forums to this thread. One hour later, Ana edits her OP on this thread to this:

    You would think an "international" ME association would want to post on this forum. At this point, their only means of advocacy is via the internet. The directors of IMEA have burnt too many bridges to be credible -- they have insulted key members of many advocacy organizations, retrovirologists, physicians who treat CFS/ME, and members of their own forum, as well as this forum.

    As far as Gerwyn goes, retrovirology is a very complicated subject, he may know more than the average joe and that makes it seem that he is correct in everything he says. However, what he does is takes different studies and makes causal pronouncements when there is no causation. It's actually not a very scientific approach but you can't question him because all you get back is a bunch of ad hominems.

    Anyways, if the IMEA wants to be taken seriously, they need to be honest about who they are and what they represent. They also should try to develop a good relationshiop with other advocacy organizations. Just my two cents.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wilddaisy was banned from PR.

    I can't guarantee you will be treated politely, just as i couldn't guarantee someone would be treated politely on PR; but i don't think you would have a problem. It seems to differ a lot depending on the person.

    I don't think I've ever even really had a comment that bruskly challenged me on that forum; and i get that, or worse, all the time here, for example there was one on this thread. I've seen just as much kindness and perhaps more comraderie there than here. On the other hand, some people have felt attacked.

    There seem to me to be more attacks and jabs at people not on the forums than there are here. For example, more jabs at CAA, PANDORA and MCWPA some of which I personally don't agree with. I'm not that bothered by it but if that bothers you a lot, I wouldn't go over there. If you think you could handle that I suggest you check it out and see. newcomers seem to be generally welcomed. you probably won't be traumatized. : ) and you may find out you like it like me.
  9. insearchof

    insearchof Senior Member

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    Hi Wayne,

    1. ICDs identify and classify existing diseases/illnesses and the following illnesses are identified: ME CFS PVFS

    2. ME/CFS is not an illness. It is a descriptive term that is sometimes used to refer to both ME and CFS groups or alternatively, to suggest that ME and CFS are the same illness.

    3. ME and CFS are seperate and distinct illnesses based on currently recognized medical literature and definitions. As such, they should be researched independently, using strict patient co horts. I don't really know of any other area of scientific research that would generally set out to do otherwise.

    4. One of the reasons I "relentlessly persisted" with the research, was to find things to make me more functional. You will never have any hope in reclaiming anything returning to near full functionality without ALL the necessary pieces of the puzzle, and you certainly will not be given them in an environment that denies or cares very little of the distinction between ME and CFS. That was a primary motivating factor behind my efforts. As a result of my own research, I was able to work towrards this and encourage certain investigations and treatments that otherwise would have generally been denied to me in Australia. Having this knowledge, I was able to negotiate with doctors and specialists without being dismissed and in a way in which, certain of my health issues were given much more thoughtful consideration, with a direct bearing on effective treatment options.I am happy to report, that what I have learnt has indeed put me much more closer to attaining fuller functionality, than I would have ever been without it.

    Sadly, fear, denialism and politics surounding ME, is denying ALL patients better health outcomes.
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Incorporation isn’t of itself a ‘fix’ in terms of soliciting donations, in fact it raises other questions because the officers of the organisation are of different national residencies.

    There’s not any direct inhibition to foreign nationals being directors of LLCs in the States or of Limited Companies in the UK, although in the latter case there could be practical difficulties. But solicitation brings separate problems in both the UK and increasingly in the US, depending on State of incorporation/activity. In the UK soliciting for charitible purposes requires registration as a Charity and this imposes significant limitations on how the organisation can operate. In the US, although there has historically been freedom for anyone to solicite for donations and there is very little Ferderal inhibition on this other than direct fraud, individual States are increasingly introducing legislation which ties solicitation to regulated activity, as with the California Nonprofit Integrity Act. Incorporation could of course be made in any Country not just the US or UK but as that is where most putative supporters are, the issue of solicitation would have to be addressed.

    Unless the officers have some reasonable level of personal wealth/income, it’s hard to see how they could maintain the activities of an “International Association” without having some source of organisational income. Of course private gifts from individuals to officers of an unincorporated organisation are not illegal and that would be one way the officers could be assisted to meet costs. Membership fees would certainly be an accepted way of supporting either an incorporated or unincorporated Association, but the rights and responsibilites of members would need to be specified – for instance what would the liabilites of members be and how would their rights be exercised by members in geographically diverse countries.

    I’m inclined to think that there’s some significant naievity behind the IMEA proposal, which would see it being neither International, nor an Association other than of a group of self selected, self appointing members representing only themselves in the UK and US. The ambition may be laudable but there appears a huge gap between aim and capacity.

    IVI
  11. insearchof

    insearchof Senior Member

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    Hi IvI

    Your original remark should be read in context. You said:

    The text highlighted may or may not have qualified your previous remark about there ''being no clinical basis to use ME ....'' but you went on to suggest that there is nothing to support/conclude that ME describes a distinct patient group.

    This is incorrect and in direct contradiction with a body of medical evidence stemming over 50 years.



    Firstly, a collection of medical literature supports a clinical basis for ME.

    Secondly, research does demand the use of that criteria and terminology, but it demands such with respect to ME research.

    So yes, existing research on CFS does not demand use of ME criteria, but why would they - they are studying CFS the new illness defined by the CDC in 1988. ME was first recorded in medical literature in 1934!



    Literature published and collated in The Clinical and Scientific Basis of ME and CFS, does in point of fact, form part of the currently accepted body of literature that defines ME, but not CFS. The later was defined or ''codified'' specifically so that researchers could study this ''new illness''


    May I ask you IVI, have you ever picked up and looked through the text?



    Then why are you beating the CFS drum? The same argument, (up until the recent developments re XMRV), could also be made. So really, what is the point you make?
  12. insearchof

    insearchof Senior Member

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    Hi Bob,

    I wanted to address the comments you made earlier, but have not had the chance.

    I'm mot sure that I understand this.

    Not quite a name change, but an association in the UK ..... that ME is really CFS........ has made a huge difference. It has essentially denied that persons who were once regarded as suffering from non paralytic polio or atypical poliomyelitis with noted and demonstratable changes to their central nervous system - (which in turn can effect an individuals ability to maintain regular homeostatsis necessary to stay alive) - was CFS: a fatiguing illness with no known cause, which could be ''fixed' with graded exercise (which I might add, is contra indicated for ME patients, in historic ME literature).

    So I dont think you can dismiss the significance of the impact any changes - to name or otherwise, is going to have here.

    .

    Certainly, the term CFS was always intended to be a temporary one as I understand it.

    I think this idea is over due and needs exploring in relation to CFS, but unfortunately you will not be able to successfully claim the term ME, as it already belongs to a distinct illness - identified and supported by medical fact. It is not available to be used and or applied towards CCC CFS or any other definition of CFS, or to any other illness, because it has already been assigned elsewhere, as acknowledged by the WHO in 1969.

    An attempt to do otherwise, will never sit well with the ME community that is intent on having the medical historical literature acknowledged once again, and preserved.


    THE OTHER THREAD


    If in undertaking the exercise you are engaged in, on the other thread, is to achieve some consensus, then I personally believe that before you can get there - you may need to have all the relevant facts/knowledge at your disposal and an understanding and clarity regarding the same.

    So if I may make a suggestion - it might be prudent to collate and acknowledge the relevant medical facts on ME, as supported by the medical literature and promoted by world ME authorties, -that is relevant to, and distinguishes ME from, CFS.

    If you had a page that did that - I think consensus is more likely not only to be achieved, but to stick. Without that, it seems to me, that you might expend a lot of energy -with an interesting and lively discusion, but not a definitive outcome/and or one that is supported by the whole community (ME advocates).

    You might also like to give consideration to extending an invitation to persons from ME bodies to participate in the exercise (if interested). I dont know whether they would be available but I am sure they would appreciate the invitation and consider it with interest.

    I make this suggestion because if this was a consensus building exercise off line, and it was approached professionally, these groups (ie HFME, etc) would (in my view) be identified as a stake holder in this process and therefore be invited in the hope of achieving a successful outcome.



    ISO.
  13. insearchof

    insearchof Senior Member

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    Hi Dolphin

    Quite happy to go into detail on the other thread, but wanted to address this point.

    Unfortunately, I did not do a good job in expressing myself there. What I meant was, that it is not too difficult to find easy to understand information on the general application of spects for the purposes of ME diagnosis. These are medical scans and like MRI's, EEGs etc need to be professionally read by a relevant and suitably qualified medical technican.

    In fact I believe Byron Hyde has made the point, that part of this exercise involves finding someone who is knowledgable in reading them/knows what to look for.

    It is like UBOs on MRI's that sometimes show up in ME and CFS patients. I have read that most radiologists are not trained to identify them and or understand their significance (perhaps outside of AIDs dementia/dementia in the elderly).

    There may be a number of reasons as to why your friend did not get a definitive reading on their spect - which I am happy to address on the other thread, at some stage.

    ISO
  14. Dolphin

    Dolphin Senior Member

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    I will be interested to hear the details. Another thing that this person found was how much activity one did before the test could affect what the result was but this wasn't well controlled. If my memory serves me correctly, the person wasn't even told about this in advance.

    My general approach to things is scepticism; until I see more evidence, I'm inclined to think that Byron Hyde has overstated how good SPECT scans are at differentiating M.E. from everyone else. And this in turn has led to others overstating how good SPECT scans are at differentiating M.E. from everyone else.

    I'm not sure that UBOs on MRIs give anything close to 100% sensitivity or specificity.
  15. Bob

    Bob

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    ISO, I agree with you. I was purely referring to the way the NHS has recently changed how they approach ME/CFS. I might be wrong about this, but I think that a few years ago, the NHS only treated 'CFS', and did not recognise 'ME'. And then about a couple of years ago, they officially changed the name they use from 'CFS' to 'CFS/ME'. (I might be wrong about this, but this is what I remember happening.) So I was only referring to this name change from 'CFS' to 'CFS/ME' which I believe did not have an immediate significant impact on the way we are treated, as the only treatment available to us still is GET or CBT. Over the longer term, this name change might prove to be helpful.

    But, yes, I agree with you that it was appalling that 'ME' was hijacked by psychologists and basically erased as a disease, and then renamed 'CFS'.


    This is exactly the sort of thing that I wanted to discuss on the other thread.
    In your mind, you might be very certain what ME is. You might define it as a speicific historical illness, as defined by Ramsay, and as acknowledged by the WHO (I'm not sure how you define it.) But it seems to me that almost everyone on this forum has their own individual interpretation of what the terms 'CFS' and 'ME' represent, and I wanted to gain a fuller understanding of this.

    You say that the term 'ME' is not available to be applied to CCC, 'fact'. But I don't think that everyone agrees with that. Things have evolved over the years, and the term 'ME' now seems to be used flexibly, at least in a practical and political sense. In my experience, most people with ME haven't even heard of Ramsay or the historical outbreaks, if that is what you are referring to when you say that the term 'ME' has a medical evidence base, and is a specific disease.

    I'm not saying that you are wrong about your interpretation of what ME is, but I'm just pointing out that there are so many interpretations that everyone seems to have a different opinion about the subject.

    You say that the name 'ME' is not available to be used for other uses, 'fact', but I don't entirely agree with that. I think it will be available if the authorities decide it is, in practical or political terms. And the authorities' political decisions have a direct impact on our disease, whatever the historical medical evidence. The term 'ME' is usually used loosely now, and I think there needs to be a conversation in our community about what definitions we find acceptable to be used in a practical sense, such as for research. But also which definitions we find acceptable to be used in a clinical sense. Even if medical fact defines 'ME' as a very specific disease, politics can change the meaning, and I think that our community needs to have a conversation about this.

    SOC, I'm not saying that you are right or wrong in anything you've said... I'm just trying to point out the different perspectives and create a discussion about the subject.

    I am still learning about the historic 'facts' of the disease myself. I noticed on the forum that people often refer to 'ME' or 'CFS' without explaining what their perspective is. And everyone seems to have a different perspective. I've seen these different perspectives cause a lot of severe friction on the forum, just through misunderstanding what other members mean when they use the terms 'CFS' or 'ME'. I find that these misunderstandings of terminology cause more friction than any actual fundamental disagreement of opinions. So I wanted to try to understand these differences, so that we all understand exactly what we mean when we say 'CFS' or 'ME'. We haven't had much clarity about that on the other thread, and maybe that is my fault for not asking the right questions.

    Let me give you an example of what I mean. On a discussion thread, somebody said that 'CFS' is not a real illness, and that the term 'CFS' should be scrapped and replaced with 'idiopathic fatigue'. Someone else on that thread had a diagnosis of 'CFS' because their doctor did not use the term 'ME'. So this person saw the other person's opinions to be a direct attack on themselves, and their integrity, because they thought they were being told that they were not really ill, but were just making it up. The 'CFS' patient was extremely upset about the original comment, and the two members never resolved their differences, because they were unable to understand what the other meant. But actually, they both probably had the exactly the same experience with the disease and they probably both had exactly the same fundamental opinions about what should be done to improve our lives. But instead of working out why they were arguing with each other, they left the thread on unfriendly terms. So the first person had not realised that they had unintentionally insulted the second person, and the second person had no insight into why the first person made such an, apparently, 'insulting' comment.

    So really, my thread was an attempt to work through these misunderstandings and difficulties.


    Well that's a great idea; I'd love to have a wider community conversation about the subject, but I don't have the capacity to even attempt to organise such a thing.

    Really, I was intending the thread to be a casual conversation about understanding each other's perspectives, opinions, and points of view, so that 1) we can avoid unnecessary friction on the forums, and 2) we could speak with one voice on the subject when/if advocating for change in the wider ME community, or politically.

    But of course I'd love it to be a wider scientific, evidence based, conversation with our entire community.

    Not very many people seem to be joining in with the conversation on the other thread though.
    Maybe the subject has caused too much bitterness and disharmony for people in the past.

    (Sorry for such a long post... I'm not very good a condensing my text or writing succinctly!)
  16. insearchof

    insearchof Senior Member

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    So the problem is with the operator and not the Spect, I would suggest. For accurate results in relation to all testing, there are generally some requirements to maximise results. But this comment suggests a procedural failure and not one in the specificity and accuracy of the tool itself for diagnosing ME.


    Why would he do that? If that is so, then it means that one of the worlds leading authorities/physicians on CFS does the same thing then.

    What they are not sensitive enough or specific enough to pick up UBO's?

    I made the comment to illistrate the point that like Spects, qualified radiologists who know what they are looking for, must read scans and unless they read enough of them, they won't be able to read them well enough to know what to look for. I dont recall suggesting that they be used as an alternative to Spects. If this was your thinking, I think you have confused the point.

    ISO
  17. Dolphin

    Dolphin Senior Member

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    This person was having the SPECT under Byron Hyde in Canada. Where is the place to get it done with the right procedure then? If a test can be influenced by mental or physical activity, there should be a procedure to ensure they don't do either too much or too little - have you heard what it is?
    The patient was annoyed that they may have not done the right amount of mental and physical activity. Given the SPECT scan is so important for the diagnostic process, one would think it should be a definite procedure should exist.

    I have read a lot of papers in recent times and all sorts of technical details get mentioned in papers. That's one of the main ways technical information gets passed from one professional to another. I haven't seen technical information to suggest the optimal activity to do in the lead up to it, that there are specific thresholds that have 100% sensitivity and 100% specificity to diagnose ME (most tests tend not to have both), etc regarding SPECT scans in M.E. If it is on a website somewhere e.g. copied from a paper, etc., I will be interested in reading it.

    Some people may be willing to take what Byron Hyde says on faith but in the scientific world, you're generally not expected to take things on faith.

    We're getting into the realm of speculation about why somebody might hype something - I can't say anything with confidence. One thing that might have influenced him is court cases and trying to make a strong case for somebody that a finding is definite? Attracting customers might be another possibility: you pay a large fee to have oversee your care. Maybe he said it once and doesn't want to go back on? He's a part-time write and may indulge in a sort of poetic license? Who knows why somebody might hype something.

    Anyway, I'm not inclined to take things on faith. If Byron Hyde believes SPECT scans are such brilliant diagnostic tools that a definition can be made out of them (the Nightingale definition), I want to see the evidence and details in print. He's been running a research foundation, the Nightingale Research Foundation, for around 20 years.
    Who do you have in mind?

    On the MRIs: I see now in your original you mentioned "sometimes" which I missed first time so when I said 100% sensitivity and specificity that is probably not the way to say it. I do remain to be convinced how reliable look for UBOs are - the literature seems to be far from clear-cut on the value of MRIs. In many papers, one is given details of the inter-rater reliability: it is a test to see if two or more raters rate something the same way. I would be interested to know if there is such data on UBOs in M.E. (or CFS). Another issue would be consistency across time - if patient A has a UBO this week but not next week, while patient B doesn't have it this week but does have one next week, that could be relevant in terms of its significance.

    But MRIs are less important to discuss. The nub of the issue is some people say that SPECT scans are the perfect tools to diagnose M.E. - they have 100% sensitivity, etc. If this is true, it will change my view of things. But I want to see the evidence - if it's out there, it doesn't seem to be repeated much in the literature. I imagine others would change their views also and more might join the ME camp.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    As I understand it, they would file as a non-profit in the US or the equivalent in another country in order that donations for non-political activity be tax-deductible. It seems that any advocacy group is going to be conducting substantial political activity. I don't know the ins and outs of how to deal with this, just putting it out there.

    They are definitely just starting out and figuring it out as they go, which to some extent is how they should proceed, imo. But, as I said, i would have preferred for them to deal more proactively with some things. I am not concerned with their incorporation status vis a vis donations until they actually solicit or accept donations.
  19. insearchof

    insearchof Senior Member

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    Hi Bob






    I agree - not everyone agrees with that, because these people have not done the required reading and research on historical ME, and have been swept along by the loose use of terminology generated by politics. If they do the required reading and research, they will see that the *fact* is, that the term is not available, was assigned fifty years ago and inserted into the ICDs over forty years ago.



    Agreed for the above reasons including historical ones, associated with the politics of confusion.


    But politics of confusion cannot destroy fifty years of recorded historical medical literature and it will be upheld and acknowledged.





    No problems. I understood that Bob.




  20. insearchof

    insearchof Senior Member

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    No Bob. The ''fact'' is that it was already been assigned and is not and is not ‘’available’.

    Unfortunately, just because something is not available to someone or a group in society, does not mean that they will not ‘’take’’ what does not rightfully belong to them, all the same. This is why we have laws to protect proprietary rights. Laws against theft, passing off, unlawful appropriation and enrichment, misleading conduct, fraud etc. So whilst it is not available, I do agree with your general point, that it may not deter the authorities or others from ''taking'' what is not available to them. Thankfully we have judicial systems to correct these matters.

    Authorities decisions certainly do have an impact and have done so – irrespective of the medical historical evidence, agreed. But the only reason they have done so, to my mind, is because they have not been effectively challenged and forced to revisit their decisions. But I think we are living in changing times there.


    The term is used too loosely now. Politics has to date, succeeded in its attempts to change a very specific and acknowledged illness state, but I am not sure that it will be able to do so, as effectively, from this juncture in history.


    Informed dialogue is a good thing Bob, but if it is not informed, it can be very damaging no matter how well meaning the intent or purpose for it, because it can perpetuate confusion.


    You have rightly noted the confusion and divergent positions observed here and as a result have said that the purpose of the other thread is to:

    • Work through misunderstandings and difficulties
    • Understanding divergent points of view, perspectives to avoid unnecessary
    friction in the forum and so that
    • PR can speak with one voice when advocating for change in wider community.



    Bob, I really admire what your trying to do. It is beyond my current health capacity, but it is something that eventually, off line the wider community is going to have to do I believe.

    A dialogue to attempt to understand divergent views is fine, but if it is a real attempt to find consensus and put that forward on behalf of PR as another representative position of the community, then this must be seriously questioned and challenged especially if you are only still acquiring knowledge about historical ME yourself and you are not prepared to send a simple email to an ME stake holders to invite them to come across to PR and participate in the other thread and or have them make some other contribution to the exercise.


    PR, just like IMEA or any other group, will never speak for the entire community, if it does not consult all of the major stakeholders in the community and find consensus.

    ISO

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