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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 19, 2012.

  1. Sing

    Sing Senior Member

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    The stigma which Llewellyn King identifies as sloth is a very important idea. This is whatever the projection or conclusion is, which blocks hearing and a normal response. I would expand the idea of our stigma as sloth to also include lying and making special claims for oneself.( I know I am re-stating an old point.)If we were actually doing these things, I can understand why people would be repelled. This stigma has a life of its own which is more powerful than the facts. How families, people, can witness our lives year in and year out, and yet resist taking in the reality of these lives is extraordinary. But social fictions trumping reality have a long history.
     
    merylg likes this.
  2. Sasha

    Sasha Fine, thank you

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    What impresses me is how often I come across the opposite in people who have a friend or family member with ME. I know that many on PR have great difficulties with wilfully blind families and friends but on quite a few occasions when I've told a stranger that I have ME (usually when I'm trying to get them to donate money!) it turns out that they're all too well aware of how serious it is and that it's a real disease. They're also usually absolutely amazed to find that there are ME research charities that they could have been donating to for years if they'd only known about them.

    I think it can often take first-hand experience of seeing a loved one before and after to realise what this illness is. However, a lot of people also have the first-hand experience of having a friend (mis)diagnosed with 'CFS' who has been completely 'cured' by something like the Lightning Process, which reinforces the idea of mental illness. There are a lot of factors at play here.
     
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  3. waiting

    waiting Senior Member

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    And, whether this was part of the same meeting, or a subsequent one, these would be key players:

    Plus 4 others, all possessing the attributes ascribed to Lenny Jason and Stephen Krafchik, would have the required expert insight into our community's experience with Ampligen (they were all among co-authors of important March 14 2012 paper -- rintatolimod is the name for Ampligen):
    • Staci Stevens (importantly, employing her objective cardiopulmonary exercise test to measure the primary endpoint of the study. I wonder if Sandra Kweder (FDA) is familiar with this test, given her comments about ME and objective tests).
    • Dr. Lucinda Bateman
    • Dr. Charles Lapp
    • Dr. Dan Peterson
    Plus 1 other that I can think of right now for his experience with Rituximab:
    • Dr. Andy Kogelnik
    Plus 1 other for her vast experience in the comparison between the treatment progress and lack thereof for HIV/AIDSand ME, respectively, in her fatigue clinic (divided between HIV/AIDS and ME patients):
    • Dr. Nancy Klimas
    The objectives of the meeting would have to be explicitly defined, with all the ancillary, thorny issues we face addressed, but only in service of the primary objective: getting drug treatments manufactured by the drug companies and approved by the FDA. (I think I heard one of the FDA reps say they sometimes do take the initiative in approaching drug manufacturers and saying, hey, take a look at this, what do you think...)
     
  4. Sasha

    Sasha Fine, thank you

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    By the way, I hope I'm not bumming everyone out on this thread! I'm stuck in bed with some new bug at the moment and it's probably making it harder than usual to see the positives.

    One thing I think we could do more of is preparing for things that we know are coming up so we can make the most of them. For example, we know that the results of the Lipkin study will be out one day (I have no clue when) - we could plan to be ready with soundbites and press release lists and well-argued, um, arguments and whatnot well in advance. We wouldn't have to know what the results of the study were going to be to do that. Similarly, we know that the psych lobby will inevitably come up with some new story to get themselves in the news sooner or later. That's actually an opportunity to try to get the other view into the media. We could plan for that. Though I'd advise not publicly on this forum! I'd like to see our established advocates working on that together and maybe farming out tasks to those others of us who are able, behind the scenes.
     
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  5. Kelly

    Kelly

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    This was addressed in the meeting. It has to be a research definition. The CCC and the ICC are not research definitions - they are clinical definitions. Research definitions work best when they have the fewest possible elements and still differentiate between people who don't have a disease and those that do. The authors of the ICC know this and have stated that they are working on a research definition. In the meantime both Dr. Leonard Jason and Dr. Snell's group have found that PEM is the key symptom that differentiates between ME patients and others. PEM is actually not very common.

    More important than definitions are biomarkers in any trial. Biomarkers that distinguish between people without a disease and patients with a disease are much better than definitions because they are objective. They are also a good way to subgroup.
     
  6. Ember

    Ember Senior Member

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    To clarify, the ICC is both a clinical and a research definition. The International Consensus Panel is comprised of both clinicians and researchers, and the ME-ICC states that “the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers:”
    Dr. Carruthers wrote in June that the ME Physicians' Primer and the International Symptom Scale were still in process:
    The International Consensus Primer was published last month, and the International Symptom Scale is still expected. Neither of these documents represents a new definition.
     
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  7. WillowJ

    WillowJ Senior Member

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    thanks, Jodi, for the summary. I listened but was unable to take very thorough notes.

    I like the ideas of going forward with meetings.
     
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  8. Jody

    Jody Senior Member

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    Willow,

    It would have been next to impossible to take notes on this. Fortunately my 22 year old son (who also has CFS) had set me up with some software to record it all, and I was able to go through it all later.
     
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  9. GcMAF Australia

    GcMAF Australia Senior Member

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    To me it is all Crazy, crazy>
    So if you do have a narrow definition, this excludes CFS people outside that narrow definition.
    The pharmaceutical companies spent billions of dollars on ulcer treatments which did not work, people paid heaps for these.
    Then Marshall and ...? cured these with a few dollars of antibiotics.
    Not sure if working from the top down works.
    I am working from the bottom up.
    Maybe we will meet in the middle.
    Regards GcMAFie
     
    jimells likes this.
  10. taniaaust1

    taniaaust1

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    Would this matter much if they all do in fact have the same illness as the narrowly defined (more severe group) when it comes to "research" definitions? and findings found in the more severe defined group, could only flow onto the other group too if they in fact have the same illness.

    and if they didnt have the same illness .. making science progress in the narrowly defined group.. test findings would end up help distinguishing between the two groups... as certainly having a wide definition hasnt shown itself to be all that successful to progress at all.
     
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  11. GcMAF Australia

    GcMAF Australia Senior Member

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    I dont know tania. good point
    i was trying to make some sort of point here tho.
     
  12. Gemini

    Gemini Senior Member

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    MS is an interesting model for ME/CFS. Yesterday's Wall Street Journal described two new "pill form" MS treatments but indicated the understanding of the disease continues to evolve thus making it difficult to find effective and safe treatments.

    http://forums.phoenixrising.me/index.php?threads/new-pill-form-ms-treatments-debut.20551/#post-312817
     
  13. Sasha

    Sasha Fine, thank you

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    I think the interesting stage for us to study is not the current stage where the illness is understood to be multiple scleroses (scars) of the myelin tissue surrounding nerve fibres and the challenge is now to understand what is causing that, but the earlier stage when patients were (presumably) grouped by presenting similar symptoms but the demyelination hadn't been discovered. Before, in other words, they got their biomarker.

    I'd love to hear what veterans of the MS struggle have to say about that period of time.
     
  14. Sasha

    Sasha Fine, thank you

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    Just googled on 'multiple sclerosis activism 1980s' and got this link to an interesting history in a book called 'Emerging Illnesses and Society: Negotiating the Public Health Agenda' by RM Packard et al. - this link takes you to the relevant part of the book by some sort of google magic:

    http://books.google.co.uk/books?id=...e&q=multiple sclerosis activism 1980s&f=false

    Haven't read the whole thing but it seems that activism was spectacularly needed even when they knew what the disease was. There's a whole ton of stuff I don't know here!
     
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  15. jimells

    jimells Senior Member

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    Jody, thanks for the effort to give us such a good summary. My molasses-speed dialup connection can't show videos, so your report is most helpful.

    1. Sloth - we are 'obviously' morally deficient, since most of us don't particularly look sick. There's no room for useless eaters.

    2. We're not dying fast enough. Slowly dying, a little more each day, doesn't count

    3. The FDA exists to promote the pharmaceutical industry and protect their profits. That's why we end up with so many drugs that do nothing useful except make rich people richer.

    Although the FDA people spoke with nice words, here's what I heard:
    "We're not going to talk to you unless you are a team player. That means you need to find a sugar-daddy establishment foundation to donate a million dollars to setup a lobbying/fundraising operation in Washington. This includes high-salary fundraiser executives and an ex-Congresscritter or two. Then you have to convince *us* that there are billions to be made by selling overpriced drugs to sick people who probably are poor and don't have much insurance. Only then will we consider the idea of prodding the drugs companies to do something."

    "It will be a hard job to convince us because there is a chance that low-profit-potential treatments like Rich K's Simplified Methylation Protocol or Freddd's B12 Protocol might work. We're not going to test low-profit treatments. Nobody is. So just forget it."

    "We admit our institution is broken, but we're not going to even attempt to fix it. The fact that sometimes patients actually benefit from our work is a happy side effect. Rock the boat and we'll slam the door in your face. Now get to work, you lazy welfare bums. It's your own fault there are no good treatments for your illness."
     
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  16. MR AIDAN G WALSH

    MR AIDAN G WALSH

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    I find it very difficult how slow things move and I will go back to around 2007 when researchers used the most sophisticated testings on gulf war illness vets 'deployed and non deployed' and they had ALPHA INTERNAL IONIZATION RADIATION INJURIES' and this was broadcast on the Discovery Channel on u-tube and now the Pentagon invested $900,000.00 into this same research team and also they are finding the same in chronic fatigue syndrome patients either Alpha or Beta so when I hear their are no objective markers to deal with this illness that is a total pack of complete lies...All one has to do is Google now radiation illness and there are numerous possible treatment options that are almost close to some researchers using antibiotics even some work on prednisolone...Is chronic fatigue syndrome/gulf war illness a complete misdiagnosed illness that already exsists I believe 100% it is and on top of this if this is radiation is also a liability lawsuit that also gives us all a complete new diagnosis...I will let everyone know here my results as soon as I know more...Gail Kansky's team already announced radiation as a cause in their most recent newsletter and their medical board is convinced now the cause has been found and even Drs. Nancy Klimas and Peterson have found something at Bond University related to radiation sickness in cfs patients bloods, if this is the case we can put 'labels' like cfs gwi behind us once and for all...Getting 100% away from a diagnosis of cfs is the best thing that could ever happen to any of us because radiation is an accepted 'injury' see the national cfids foundation's website...Remember numerous accidents have happened in the past and also even hospitals have radiation accidents as well plus military dumpings plus numerous nuke testings plus military hardwares...Our greatest blessings ever is to fall into a category far far far away from cfs gwi and the likes of the Wesseley incompetents...It is also my understandings now from Gail that their are already serious top researchers now working on better treatment options and that Japan has an I.V. drug for radiation that can restore health in months to a year but must be given for life afterwards...Now we are dealing with the disaster in Japan on top of all of this now...If my blood shows radiation I am going to file a multi million dollar lawsuit in a London court house and that is a promise...MR AIDAN G WALSH SOUTHAMPTON, U.K.
     
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  17. Victronix

    Victronix Senior Member

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    Thanks for reporting on this, very interesting to read (as someone who does not have ME/CFS).

    I do research on PTSD and traumatic brain injury and what I've found is that the public perception is greatly influenced by things they can quantify: biological markers, images on brain scans, anything that you can show them in a picture and they understand, which cannot be done for PTSD. Consequently, grants and financial interests are increasing for traumatic brain injury, while PTSD remains struggling and patients continue to commit suicide. The role of public perception influences journalists and they repeat the same myths about PTSD being "like a ghost" and that in turn then influences readers to continue to believe the myth.

    If the solution is a vaccine or surgery or a Big Pharma pill, then the funding will appear and the agencies will get on board. If the solution is complicated, then the cycle of myths and hand wringing continues and it's a real struggle to move forward.

    So to some extent, the marker, whatever it is, for a diagnosis is key (the definition). Glad to see discussion on that and specific names of individuals.

    "3. The FDA exists to promote the pharmaceutical industry and protect their profits. That’s why we end up with so many drugs that do nothing useful except make rich people richer."

    Excellent point. And unfortunately, the US Empire is getting more corrupt by the minute, meaning that even things like the FDA will become even less functional and more prone to influence.

    I think its important to continue to think outside the box. This forum is a remarkable asset. I think people lose sight of the importance of such assets relative to a pharmaceutical solution from an FDA. I was originally on a B-12 forum elsewhere, and using Fredd's protocol, and greatly improved, so stopped using it, and when I came back, it was dead -- I was really shocked, as though the rug pulled out from under me. Access to the knowledge of people from all over the world was suddenly gone! But eventually I found the trail over to this forum, where Fredd had appeared also, and was amazed at how well this forum is organized, how efficient and supportive and functional it is. I can never keep up with all the information -- and good information -- appearing on here all the time.
     
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  18. Sing

    Sing Senior Member

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    I don't know about radiation sickness as a cause, but I like your spirit!
     
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  19. Jody

    Jody Senior Member

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    Glad to do it jimells. I would have been lost without the software my son set up for me to record it all. I needed to go over it to be able to get a grasp of what was being said.
     
  20. Jody

    Jody Senior Member

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    Victronix,

    I'm glad it provided useful information for people. That's interesting, and troubling, information about PTSD. I see the similarities. I agree we need to think outside the box. If the medical community comes up with something to help us, well and good. My personal approach has been to walk away from the conventional medical community since it has never given me any practical help with my illness and look for answers elsewhere. Fortunately for me the naturopathic community has made great strides possible for me.
     

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