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Dr. DeMeirleir speaking Jan 28/13

Discussion in 'Latest ME/CFS Research' started by Daffodil, Jan 28, 2013.

  1. Leachim

    Leachim

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    I'm excited about this, and I hope that it won't be a month or so before the summary is posted (I suppose they would have told if it wasn't due in a few days or so?). The recording would be nice to see soon too of course, but at least some info on the main points.

    What rumours (and KDM's hints) says, as far as I've understood, is that there is a specific auto-immune factor that now is identified, which is the reason why Rituximab has it's effect - the auto-immunity is temporarily switched off by depleting the b-cells, but returns when the cells are regenerated. Chronic infection with pathogens like bartonella and borrelia is a key factor to why the auto-immunity develops. And according to KDM's model of the disease immunological dysfunctions are key factors to why ME patients are prone to chronic infections.

    I don't know if there might be any specific treatment options for the auto-immune reaction, but restoring normal function in the immune system in a broad sense is probably important, which is exactly the core of KDM's treatments since many years. The latest PCR tests are more sensitive and KDM now identifies a lot of bartonella and borrelia infections among his patients, which he believes needs to be treated with long term antibiotics too since they do a lot of stuff that disrupts the immune system, but he seems to believe that you definitely have to treat the immune system deficits too to be able to get rid of the infection (something he's trying to put forward in the ILADS).

    But maybe the presentation's got some other information that I'm not aware of, hoping to hear about it soon!
    Persimmon, SOC, Sushi and 5 others like this.
  2. Shoesies

    Shoesies Senior Member

    SOC likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Watch out for finger PEM! :thumbsup:
    Sparrow, SOC, Kati and 2 others like this.
  4. Research 1st

    Research 1st

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    Thank you for this information, it does look exciting.

    The dream of a test that demonstrates why Rituximab works for a subset of people with Fukuda CFS would be a game changer. As we all are aware, because of how Fukuda CFS is diagnosed, B cell depletion cannot work for all people with CFS, only those with undiagnosed organic disease affecting B cells. If proven, the CDC say these people cannot have CFS. Hence why Dr Kogelnik's apparent alternative ideas for labeling organically ill CFS patients - Common Variable Immune Dysfunction (CVID) seems a wise idea.

    One can guess these people are misdiagnosed Fukuda criteria CFS patients who should have been told they had ME, except the US didn't allow the word ME to be used because of private health industry who obsessed over the label of 'CFS', for reasons that now become clear. (Fukuda CFS traps patients into a dead end diagnosis and allows psychiatric theories of blaming the disabled and defencless, to flourish). A great way to save money on disability medical claims, including when not paying out insurance for GWS troops in the Army who develop 'CFS', after a batch of vaccines they get before going on a tour or duty, or during.

    Patients who respond to Rituximab (or any other immune medication) are what logic often calls severe grade Canadian CFS or ME patients. (Cohorts that aren't permitted to be studied in any CDC or UK government research studies.....I wonder why?!). In fact, British psychiatrists reduced the CDC criteria to make it even weaker to make it far more likely that psychiatric fatigue cohorts would be included. They named this Oxford CFS criteria, designed by the Wessely School, no less. The same architects of the PACE trial in the UK. The very people who claim they are victims of a ''smear campaign'' by patients to ''stop research''. Research that is not biomedical, and not on ME sufferers at all, but is marketed as being so by 'influences' with the British media through the Science Media Centre (SMC). (More apparent fraud and possible collusion).

    If such a test were to exist in the near future for demonstrating Rituximab effectiveness in CFS, 'ME' would then be legitimized medically because US CFS Fukuda and UK diagnostic criteria for CFS/ME does not allow for any abnormal pathology to be present, ergo the Rituximab responders likely have organic ME and certainly not 'unexplained' non biological chronic fatigue. CFS doesn't have any officially recognized subgroups (unlike other complex diseases with differing levels of disability). This was a great error in judgement. CFS could easily could have had a neurological/immune cohorts constructed years ago. This wasn't permitted by the US CDC, NIH & UK MRC and others. The evidence was there, over 5,000 biomedical papers have been published on the organic nature of dysfunction found in people diagnosed with Fukuda CFS. So there is no excuse, absolutely none.

    There doesn't need to be a unique biomarker either for a set of organic symptoms to be legitimized, autoimmune diseases often don't have a unique biomarker of their own. (The cause remains unknown, hence it is called 'autoimmune'). Yet this is the non science based claim by CFS psychiatrists, that until there is a cause proven, their way of denying organic CFS/ME is better and their psychiatric therapy, ''safe''.

    If there is some groundbreaking news from Dr Demeirleir the UK and US government could rapidly create CFS subsets in order to hide abnormal ME pathology because they know that there are redacted MRC files that discuss ME abnormal pathology associated to likely situations such as possible contaminated vaccines, retroviruses and/or other infections. We already have quotes from UNUM and a vaccine manufacturer practically begging 'CFS' to be used in place of ME. UNUM's stated goal was to ''erradicate'' ME.

    The UK's CFS psycho-behavioural models influence official health agencies recommendations to the public on how to treat CFS/ME. For example, the UK 2009 NICE Guidelines recommend not to give anti-viral drugs for CFS/ME as a matter of course. The CDC also recommend this. The two go hand in hand. In contrast to this obfuscation, CFS experts in the US, Dr Peterson, Dr Montoya and others, have sometimes found anti-viral drugs most useful!!! A lot of explaining will need to be done why health agencies ignored CFS experts in preference to organic CFS denialists.

    There is a catch 22 for any government here though if Rituximab is to be proved as explaining an novel immune defect in CFS leading to symptoms. It would actually be easier for a government to ''allow'' ME to become a mainstream autoimmune disease rather than ''allow'' CFS to have an autoimmune subgroup. This is because the most harmful literature produced by the psychiatric profession, uses CFS cohorts. (The UK and US never did perform research on people with organic disease, only chronic fatigue and four symptoms in the US, or chronic fatigue, PEM and one or more additional symptoms in the UK). What is called CFS, or CFS/ME. So little data exists on ME (Myalgic Encephalomyelitis).

    The patients will win either way, because their reduction in symptoms without psychotherapy intervention, will prove claims of great effectiveness for CBT/GE to be scientifically flawed. Even worse for the US and UK government and their psychiatrists, we have the small matter that CFS or ME were never classified as mental health disorders. When claiming compensation from the government, this is a massive problem for the government because no excuse can be given that this whole situation was all a big 'mistake' and ''we thought you were mentally ill''.
    No one can legitimately claim your CFS/ME symptoms are due to a mental and behavioral problem and treat you as mentally ill, as CFS/ME is not classified as a mental illnesses. :)

    Once a drug is able to be used to reduce symptoms, heads will roll when fingers start pointing at the hidden members of health agencies who made the decisions to allow patients to be marketed as inferior members of society. It would seem quite incredible that in 2013 the whistle is blown so early. Something us patients presumed would be years ahead when Rituximab trials are completed in 'fatigued' cohorts with Fukuda CFS. (Clinical trials aren't even funded yet or planned by any government funded health agency).

    Likely it is best we wait for actual science to be published before believing this sorry tale of disease deception (via CFS label) is coming to an end. Without drug trials and the apparent refusal of Ampligen by the FDA, this would seem most unlikely in the short term. When we can see a cutting edge scientific finding published, then we can start to breathe a sigh of relief that eventually we will have some form of health improvement through medications denied to use for over four decades, because of the automatic assumption that ME didn't exist, and CFS couldn't possibly include people with undiagnosed serious diseases.

    Both of these psychological orientated ideologies are the medical error (and embarrassment) of our century when you consider that possibly millions of people have ME globally, and possibly tens of millions of people have CFS. If tens of millions of people have CFS, potentially millions have an autoimmune disease within this label. If potentially millions have an autoimmune disease, how many would have died from neglect in the last four decades because governments (lead by the US and UK) decided to evoke fantasy of the patients minds creating and maintaining symptoms?

    When I think of the day there is a drug and some form of treatment, I always think of people labelled with CFS and ME who committed suicide, especially young people who never got into middle age and saw the world and experienced adult life. :( And of course, the people who died of ME too who were neglected in society and never believed.

    God bless them, and may they rest in peace.<3
  5. Shoesies

    Shoesies Senior Member

    :hug: LMAO, I needed that!
  6. snowathlete

    snowathlete

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    Research 1st - Though I agree with what you say, I can't see us ever getting appology or compensation. Even with evidence etc. it is so hard to get justice enacted in the UK.
    Like you say, if and when something game-changing is found, we will just get moved into a different group, could be straight ME but probably something new. It's depressing. *Sigh*
    SOC likes this.
  7. Daffodil

    Daffodil Senior Member

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    i wonder if EBV is still involved. lupus patients show antibodies to the heat shock protein 90 (hsp90) during flares, and hsp90 inhibitors are being trialed for EBV-induced cancers...so somehow "latent" EBV might still be doing all of this. and we all know about the possible connection between EBV and MS.....

    there is still so much to figure out. very overwhelming :(
  8. snowathlete

    snowathlete

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    De Meirleir told me that he thinks I got what is causing ME/CFS before EBV (mono) at 14. But he still treats it when he finds it and is testing me for it. I hate EBV, it's a horid little thing.
  9. Daffodil

    Daffodil Senior Member

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    why arent people finding a vaccine for this damn virus. it has been linked to so many damn diseases
  10. snowathlete

    snowathlete

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    Because it's 'harmless' - at least that is the official view until proven otherwise! *sigh*
  11. Shoesies

    Shoesies Senior Member

    Snow - this is exactly what Dr. Bradstreet said to me..that I am too focused on the EBV and I got CFIDS first and that is what allowed the virus to proliferate. Still treating for underlying and coinfections though. Just bugs the hell of me why we cannot find out the precipitating cause.
    vli likes this.
  12. SOC

    SOC Moderator and Senior Member

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    I wonder if the origin of the illness is genetic, like a genetic immune dysfunction. It's the big hit from EBV or HHV-6, or Lyme that we can't ignore and see as "the beginning", but our immune systems may have been struggling long before.
    Valentijn, tyson oberle and heapsreal like this.
  13. Daffodil

    Daffodil Senior Member

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    a researcher told me the infection, whatever it is, takes advantage of an already-activated immune system. for example, many of us had IBS before we got CFS. perhaps some of us had mold problems, extreme stress, whatever.
    vli likes this.
  14. barbc56

    barbc56 Senior Member

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  15. Firestormm

    Firestormm Senior Member

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  16. Daffodil

    Daffodil Senior Member

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    the upcoming paper was not talked about at the presentation, due to confidentiality concerns. there was a great turn-out, including dr. peterson and some of his patients.

    a summary will be available on the WPI blog today and the video in 2 weeks, i think. they were busy last night due to a celebration for some gene sequencing machine they got.
    :-/
    Kati likes this.
  17. Research 1st

    Research 1st

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    Would a summary be available in two weeks if the paper isn't published until March?
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think Daffodil means a summary of the talk, not the paper.

    Sushi
  19. Research 1st

    Research 1st

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    Hello. Yes that's what I was confused about.

    I thought a summary of the meeting wouldn't be allowed until the paper was published because the details were embargoed?

    I guess it depends on what is summarized though and one can simply leave out some of KDM's information we aren't meant to know yet. :thumbdown: :p
  20. liquid sky

    liquid sky Senior Member

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    How hard is it to write a summary of his presentation and post it like they said they would do yesterday. Surely, they knew about this machine before the presentation. I really don't like it when organizations say they will post something on a specific day and then just don't do it.

    I guess it ups the traffic at their site.

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