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Diagnostic Criteria - can we resolve our community's differences?

Discussion in 'Action Alerts and Advocacy' started by Bob, Feb 2, 2011.

  1. Dolphin

    Dolphin Senior Member

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    My contact was unhappy with lots of aspects of their dealings with Dr. Hyde. I will see try to see what they are happy for me to say. Just to repeat again as I said on the other thread, it wasn't me - I'm not able to travel to Canada or anywhere e.g. my granny died this week in my city and I didn't go to any of the events.

    As I said before, I don't need to depend just on what this person said: it's main value has been to prompt me to look again at some of the things he says. And a lot of questions remain unanswered. Published data would be a huge help. He has had been in the field since I think it is 1984. He has been closely associated with the Nightinagle Research Foundation for the past 20 odd years - it's almost sole purpose in the last 15 (?) years seems to be his activities. He has had plenty of time to publish data in peer-reviewed publications. That as I say is much more likely not just to convince me but more influential people in the medical field like the people who pay for tests and treatments (government-type agencies (NHS, NICE, etc.), insurance companies, etc).

    Some people (e.g. those who have used him for insurance company cases) may not like him challenged. But so much of the ME vs CFS debate seems to revolve about what he says.
     
  2. insearchof

    insearchof Senior Member

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    Hi Bob et al

    I am finding it a little hard to keep up and as much as I would like to do so - I am unable (due to health) to set out details I would like. I am using my energy to address issues as they arise.

    Moreover, with my health issues and all the other things I am trying to get to - I really see little reason to reinvent the wheel -when HFME has so much material readily and freely available.

    I don't mind contributing to the discussion, but I think its fair to say and I think anyone would understand - that it is very frustrating and difficult to have a discussion with anyone -when they either - have not done the reading/research themselves or are fearful of exploring the subject. That is not a comment directed at anyone in particular, but a general observation.

    I also fail to understand the need to shoot the messenger. When I came across my messenger some years ago - although I felt like doing so, I did not. Instead, I reasoned that my messenger had information that I had not discovered in my travels and that maybe this individual had something to share with me - that I could investigate further. I am very glad I did. As stated elsewhere, it has enabled me to negotiate a degree of health care and treatment options that would have otherwise be denied to me.

    I understand though, the fear and the concern. I had to grapple with it myself also. It was very difficult. All the way through my exploration of the topic. All the way through, looking to find fault, coming up with many of the same arguments that I have encountered here - always looking for the fundamental flaw, the fly in the ointment. But at the end of the day, after years of reading, re-reading and analysis of various materials, looking at them from all angles, I never found it.

    It is not an easy path and it is definitely not for the faint of heart. But I worked on my fear and I was able to work through it, because of that and because I was commited to finding the truth based on historical fact, recognised and acceptable medical processes, definitions/classifications etc. My hunt for the truth mattered most of all to me. I dont know what the consequences of that will look like, no one does. You can speculate and your fear will do this for you with aplom. But none of us know what the future holds. I just know that in order to clean up the confusion, the mess, and one of the most unimaginable human rights abuses being perpetrated against some of the most vulnerable groups of people ...and in plain sight - I had to start with fact/truth and build again from there -and deal with the outcome - when it came.

    Will the ME and CFS segments of the community come together to build? I think its a noble and nice ideal, but based on my experiences, it looks unlikely.

    The CFS part of the community is too gripped with fear. Neenyah Ostrom observed this years ago about the community, when it cowarded in the face of the obvious points of similarity between CFS and AIDS. I recall when I first began searching for answers years ago when I fell ill, how obvious that was to me. What I also found intriguing was the fact that no one in the CFS community ever mentioned it or wanted to discuss it. Given that, I thought I was probably barking up the wrong tree....until I came across Neenyah Ostroms book around the same time....which only made me dig deeper. Recently I read a statement by Neenyah and she said, that the similarities between CFS and AIDs were obvious to all those outside the CFS community. She stated the CFS community was in a state of deliberate denial.

    Neenyah Ostrom observed that the CFS community was aware of the parallels but was deathly afraid of the consequences of that and so, stood in the shaddows and watched the bravery of the AIDS campaigners. Had the CFScommunity over come their fear - it may not have taken 25 years to discover XMRV. It might also have meant, that many of us here today would not have had to endure the years of mysery that we have had to endure. Fear has some immediate benefits, but it sure comes with heavy costs. ie: look after me right here and now- to hell with the future and those that might follow.

    The HIV/AIDS groups looked fear straight in the eye and said -there is no other path. They fought, demanded and acheived. 25 years on, and despite the appearance of WPI, the CFS community is still allowing fear and immediate self interest -to get the better of them. They point the finger at the ME crowd alleging that they are selfish - that if ME is introduced, where will it leave people who do not fit into ME? But the fact of the matter is, many of those who are fighting for the due recognition for ME,do not have an ME diagnosis but recognise that they may have had one, had the truth not been lost. They understand the injustice and the suffering and that this should never have happened. They understand the need for truth and how that plays a part in the greater good - irrespective of what that might cost them personally.

    And now, it seems that this hot bed of fear that wants to push ME away or mix it in with CFS, is now being channelled towards XMRV in some parts of the community. There are also patient organisations across the world who propose to advocate for PWCFS but have remained deathly silently on the matter. One has also publicly discouraging its members from any political lobbying.

    The CFS community needs to get a backbone and think about the greater good.

    Fear will always keep it small, divided and ineffectual. To be successful, it needs to look at what the HIV/AIDS community did -and I dont mean strategy - I mean how they mastered fear and harnessed courage to work with the truth. That's what made the difference and it translated into funding, research and anti retroviral treatments. You can protest about the fact that people with AIDS were dying and that is why they were effective, but a strong case could have been made at the same time for people with CFS ie that they were dying every single day. They were living with an AIDS like illness, not for months ending in death - but for years - a long living death. Those PWCFS with an XMRV/MLV + diagnose, owe a hell of a lot to the bravery of those activists that ensured millions of dollars were poured into research and antiretroviral treatments. They stood up bravely so that those that followed would reap the benefits.

    I sense, at this stage that the ME community will work towards ME/ME research and educating scientists etc about what it is and what it is not and the CFS community will work with whatever it is they choose to design and continue to contribute the existing large body of research (3,000 plus papers) .
     
  3. Bob

    Bob

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    You make really valid points floydguy, but PEM maybe something we could push for to be included immediately for a 'CFS' or 'CFS/ME' diagnosis, whereas, don't you think that the inclusion of measurable biomarkers is going to take many years for the CFS/ME-diagnosed and CFS-diagnosed community to agree on?
     
  4. insearchof

    insearchof Senior Member

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    Only for people who have not read widely on the subject, and like to cherry pick, take what he is saying out of context and without reference to the wider body of medical literature.

    I really believe character assinations of the very few physicians we have - in both the ME and CFS community - is not only nasty and ungracious, but very short sighted.
     
  5. Dolphin

    Dolphin Senior Member

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    Good points, Bob.

    The Schwartz et al. (1994) CFS studies were blinded. Relatively easy to do with scans.
     
  6. Dolphin

    Dolphin Senior Member

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    I believe what has appeared to me sometimes akin to hero-worshipping of him/what he says is causing problems - this is not just based on this thread but previous observations. It has seemed to me sometimes almost like a religion where we are supposed to accept things on the scientific equivalent of faith not published evidence. Science and Medicine isn't supposed to work like that. And certainly in an area like ME and CFS, we probably need peer reviewed data more than most areas to convince others.

    I may not have parsed every word correctly. But I don't think other people have either.

    Part of what I have been trying to do is to prompt others to put pressure on him to publish more.
    I read quite a bit of the medical literature in the area, submitted letters, dealt with health agencies, seen how NICE works, etc. It's published peer-reviewed data that will make the difference. One doesn't get too far quoting other sorts of text.
     
  7. Angela Kennedy

    Angela Kennedy *****

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    I agree. I've been doing the same here as regards prompting Byron Hyde to publish more.
     
  8. Angela Kennedy

    Angela Kennedy *****

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    Those are a lot of generalisations guaranteed to misrepresent just about everybody! People need a backbone? Good god. Because people see problems in your version of "THE TRUTH"???? Because people understand only too well some of the complexities and discrepancies around this subject and work around them just to survive (or helped loved ones do so)? Wow.

    You know - careful argument is fair. Preaching at people calling them cowards and ineffectual- it means you don't have a good argument here and have resorted to the haven of the cognitively dissonant - ad hominem.
     
  9. Bob

    Bob

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    I set up this thread to see if people could understand each other's perspectives, and work through our differences.
    I don't see a lot of difference between what people are saying here, in regards to the overall picture.
    We all seem to agree that we should have a more specific 'CFS' diagnosis available, and maybe a very specific 'ME' diagnostic criteria, at least for research.
    We are just disagreeing on the details of how the changes should be implemented.
    Maybe it's a good idea to step back from the discussion occasionally, and take some time to think about all the different perspectives that have been expressed.
    I hope that doesn't sound patronising, but I'd like to keep the thread entirely constructive (That comment is not aimed at anyone specifically.)

    From my point of view, our similarities are greater than our differences here.
    We all want what's best for the ME, CFS/ME and CFS communities, and we all agree that people with ME should be given a better deal, and that more specific diagnostic criteria should be made available.
     
  10. Bob

    Bob

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    Insearchof, I totally value your contributions, and I know that it's hard for you to argue your case against three of us simultaneously.
    But I think our disagreements are only coming from a breakdown in communication here, and not fundamentally different points of view.
    I think we understand your points of view, and I think it's fair to say that we do have an understanding of many of the 'facts'.
    I think we are only arguing about the practicalities, in a wider sense, of using SPECT scans and the Nightingale Definitions, for the wider CFS-diagnosed and CFS/ME-diagnosed communities (including ME patients).
    The validity of SPECT scans can only be confirmed, proven and validated by further and wider research. So I can't see that there's much point in us arguing about that.

    I think we would all like to see Byron Hyde's work rolled out to a wider research field, with millions of dollars pumped into it.
    The issue is whether this is going to happen, in reality, before other smaller changes are made to the fields of CFS and ME research.
    So I think we are arguing about practicalities, more than anything else, which is related to how much Byron Hyde's research has been replicated and validated, on a wider scale.
     
  11. Bob

    Bob

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    That's not what I observe at all. I think that almost all of us want changes. The main disagreement seems to be how to implement those changes, and how far to go with the changes in the short term. I don't think that any of us are disagreeing with you about the fundamental nature of ME. But there are questions about how it should be diagnosed, especially in a practical sense.
     
  12. Bob

    Bob

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    But do you not see the fundamental differences between the ME/CFS communities and the HIV community?
    HIV patients were dying quickly, and then they found a virus.
    We die slowly, and they haven't yet confirmed the virus.
    That makes so much difference to what we can achieve.
    People with ME/CFS have been fighting for years for recognition and validation, but we are constantly hitting brick walls. All of us are constantly hitting brick walls, whenever we do campaigning of advocacy (which we do a heck of a lot of, between us all).
    If/when XMRV is confirmed then that instantly changes everything, for all of us, and then these discussions will be redundant.
     
  13. Dolphin

    Dolphin Senior Member

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    I was challenged for saying that Byron Hyde may use "poetic license" occasionally which the patient I have contact with says happens more than occasionally.

    They didn't want to mention their medical history but did remind me of the following claim from Byron Hyde which I'm highly sceptical of:

    http://grubstreet.ca/articles/interviews/byronmhyde.htm

     
  14. floydguy

    floydguy Senior Member

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    Bob, the problem is that it's not difficult to get a CFS diagnosis. People might not like it but we should be clamoring for restricting it as much as possible. My point basically is that PEM is meaningless because it can't be tested easily so everyone can potentially have it. I would toss out the following critieria:

    - Evidence of reactivated EBV, HHV-6, CBV, etc., XMRV
    - Proven CNS dysfunction (low body temp, POTS, etc)
    - Immune Dysfunction (low NKC, etc)

    To have CFS you must have the above. Observe, no symptoms, only accepted lab tests.

    It does not do the community any good when everybody is eligible for the diagnosis. This is not a disease of "no ill people" left behind. Somebody must put boundaries on it. I can' believe anybody at this point with all the kooky research cohorts that the CDC and UK Govt. come up with can disagree on that.
     
  15. Bob

    Bob

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    I like your ideas, and I see your point, but how long is it going to take before those tests become mainstream as a national or international diagnostic tool? I just can't see it happening within ten years. We might get there, slowly.
     
  16. WillowJ

    WillowJ Senior Member

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    I think 6 months to 2 years. I really do. Although I'm talking about the most active ME/CFS researchers and the NIH. And from NIH to our doctors' offices (though that part may take more than 2 years).

    In a transcript of a blood meeting, I see someone saying, that various groups are using blood bans to gain legitimacy and awareness of their diseases and this is something the blood groups need to be prepared to deal with, but that "in fairness" to the people with CFS, they have not been taken seriously or had enough research. This is not something a random medical person not connected to ME/CFS research would have said 1 year ago.

    We have the famed Harvey Alter continuing XMRV research and involved in the Blood Work Group, but even more importantly, saying "if it's not XMRV we need to keep looking to find the cause."

    We have Mangan starting the ME/CFS conferences up again after 8 years of disuse (when others were in his position) despite being mandated by Congress. We have Mangan using "ME/CFS" and spelling the ME part, "myalgic encephalomyelitis." We have Mangan putting Lenny Jason and Mary Schweitzer, two of the most outspoken critics of the status quo and the CDC, in charge of the conferences along with Nancy Klimas, one of the researchers most actively and productively working on biomarkers, as well as other advocates. We have someone from a quality control of health services government agency volunteering to help.

    Another researcher most actively and productively working on biomarkers, of course, is Judy Mikovits who was not helping organize the conference but she is involved in the Blood Work Group where she is allowed to use her own protocol, a necessary utility but amazingly novel in the history of ME/CFS.

    We have Ian Lipkin, a top pathogen hunter, setting up a government-requested study and involving Stanford (thus probably Montoya) in a long-overdue move to actually get to the bottom of this Disease and what pathogens are involved.

    How could we not make progress towards biomarkers, understanding, and the beginning of the end of the Era of Opression?
     
  17. Bob

    Bob

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    Thanks Willow... That's a refreshingly optimistic post...
    And you've posted some interesting info there...
    I keep forgetting about some of these projects, and I didn't know all of the details that you've posted...
    Do you know if anyone has listed this info anywhere on the forum, in one handy place?
    If not, maybe you should make a blog of that post? I think it would be useful.
     
  18. floydguy

    floydguy Senior Member

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    The real trick is getting government to use that criteria. I suspect many would disagree but I would rather that very few people be accepted than everyone. If the criteria was actually being used testing would follow quickly. Most of that testing isn't very expensive. Surely XMRV testing will get cheaper and even that isn't terribly expensive. The real point though is that we should insist on defining elements that can easily be measured.
     
  19. Bob

    Bob

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    But how to get governments to accept those diagnostic tools and criteria?
    It would need to start by using these diagnostic tools in large, government funded, research trials.
    And for that we need lots of government funding.
    As much as I would like it to happen, I don't think it's going to happen overnight.
     
  20. insearchof

    insearchof Senior Member

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    Hi Bob

    I think you will find that he has a wider following in both the medical/scientific field and patient community that you readily appreciate. Drop Prof Hooper in your country an email and he should be able to enlighten you more.

    When he is not seeing patients (across the world), he is writing and lecturing - across the world. He was in Australia, only six months ago delivering addresses on ME and CFS to both medical and lay audiences.


    My underlying belief as to why he does not have a wider following in the patient community is as follows:


    a. the lack of knowledge on ME and the distinction. This is diminishing thanks to the work of HFME

    b. the continued use of a descriptive term ME/CFS that has no factual basis in medicine and only continues to hide the distinctions between ME and CFS in plain sight.

    c. a refusal for CFS advocates to do the required research

    d. and or having done the research and understood it, fail to promote the facts and truth, due to what I call my fear theory - (previously posted)



    ISO
     

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