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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 22, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. roma

    roma

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    none of these links work not even one!
  3. Cort

    Cort Phoenix Rising Founder

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    Actually the last one I put in and one of theirs works but none of their other ones work. They came straight from the paper by the way - I took them out.
  4. consuegra

    consuegra

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    This is a fine article highlighting the work of a dedicated and empathetic clinician. Dr. Montoya is doing the research to try to understand and track the multiple pathogens involved in this complex illness. Recently Dr. Montoya has been forging connections with other researchers and clinicians and we can only expect more to come when he releases the details of his work. Dr. Montoya is both very cautious and very thorough and he wants to get it right. This is a very timely and positive article, focussing on the very real possibilities for the future diagnosis and treatment of this illness

    Chris
    cfspatientadvocate
    NK17 likes this.
  5. August59

    August59 Daughters High School Graduation

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    I really have respect this man. We are very lucky to have him in our court. He doesn't seem to be in the limelight as much as some of the others, but that is probably a good thing.

    Him being at Stanford gives him great opportunity for resources that we desperately need. His research may not come as fast as others, but it will carry us further (I hope).

    My only anxiety from this post is that I have been reading for 6 months that we will see something soon. Papers from various researchers have been ready for more than 6 months, BUT we haven't seen anything yet. There are patients going past the point of no return, either healthwise or financially every week and this research could have been saving lives instead of "Waiting To Be Published".

    If 5 people (I will not call them researchers or doctors) from the UK can get their derogatory papers (they would have been good papers if they had left their personal and intentional "jabs" out) published 4 or 5 at a time. It's probably too late for me, unless I win the lottery (I don't play though), but others could really be helped. Please publish ALL of the papers that are ready.
  6. Cort

    Cort Phoenix Rising Founder

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    Very 'august' comment August59....this happens all the time and Dr. Montoya's work has been very complex; he thought the problem was much simpler than it was - and like CFS often does - the problems kind of mushroomed in that second study and its taken him years to get a handle on what's going on.

    This is also the result of one man (or a small group of men/woman) doing this type of research...if we had research teams across the US or Europe concentrating on this stuff then it would just keep pouring out and things would move more quickly. I think back to the cancer cluster presentation by WPI researchers at the Reno Conference a year and a half ago - it's still not published. It's very frustrating. This, unfortunately happens frequently. It's impossible to make quick progress when there are so few teams working on this...This is, of course, why we really need to advocate for funding.

    This is one reason I like the CAA's Research Network so much - it focuses on collaboration and sample sharing; it promises to speed things up tremendously. It will be a great boon for us if it really gets off the ground. Otherwise things stay pretty much as they are unless XMRV works out or some other startling discovery throws people into this field.
  7. Hip

    Hip Senior Member

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    It's nice to get this timely reminder of the other good research work, in addition to XMRV/PMRV, been performed on the various infectious pathogens associated with chronic fatigue syndrome. This other research work has been a bit unsung of late. As well as this fascinating research of Dr. Montoya on HHV-6, CMV, etc, Dr Chia's research on enteroviruses also seems to be moving forward too.

    There is a paper by Dr John Chia that I read the abstract of recently, entitled: Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence, which, for the first time, as far as I am aware, begins to demonstrate a formal casual connection between viral infection and CFS.

    Usually, the finding of infectious pathogens in CFS patients only demonstrates an association between the pathogen and CFS, but an association does not prove that that pathogen actually causes CFS, as everybody knows.

    To demonstrate a causal connection, you have to introduce that pathogen in a random set of healthy people, and see how many then go on to develop CFS. Of course, this cannot be de done deliberately; it would be unethical. So what John Chia did in this study was followed up a cohort of patients admitted to hospital with acute enterovirus infections, to see if any would later go on to develop CFS later.

    Three patients in this cohort did go on to develop CFS. So this study tends to indicate not only an association between CFS and enterovirus, but is the beginnings of formally demonstrating a causal connection to enterovirus.

    Note that this is not a 100% formal proof of a causal connection, as the patients were not randomly selected at the start (which is a requirement for a formal proof), but were selected on the criterion that they all happened to catch an acute enterovirus infection.
  8. Cort

    Cort Phoenix Rising Founder

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    I had NO idea he had done that....got to get that paper! yes, there is alot of interesting research out there. Thanks!
  9. richvank

    richvank Senior Member

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    Hi, Hip.

    Dr. Chia has certainly done some very nice work. I met and spoke with him at the two most recent IACFS/ME conferences, and he is definitely very dedicated to helping people with CFS.

    This enteroviral study is reminiscent of the Dubbo study in Australia, in which it was found that a variety of infections can end up causing cases of ME/CFS.

    In the GD-MCB hypothesis, which I've proposed, a combination of genetic predisposition and exposure to a combination of a variety of stressors, including physical, chemical, biological and/or psychological/emotional stressors, the particular combination varying from one case to another, is responsible for causing cases of CFS. Viral infections are one of the types biological stressors I've included, and enteroviruses are in that category. More info on this is available at www.cfsresearch.org by clicking on CFS/M.E. and then on my name.

    Best regards,

    Rich
  10. Lisa K.

    Lisa K.

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    It would be great to see Montoya team up with the new Stanford Stem Cell Clinic that recently opened. Maybe together they can refine a therapy for those that suffer ME/CFS??
  11. Timaca

    Timaca Senior Member

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    With regard to the links in the newsletter: The link for the patient's support forum was (is) an accurate link. If you google search "yahoo groups" and then type in "infection associated CFS" the link that comes up is: http://health.groups.yahoo.com/group/IACFS/ which what was put in the newsletter. But, as some people said in this forum...it didn't work. So, I tried it several times, (typing it in) and it worked sometimes and not others. My apologies. But, that is the correct link.

    The link for the Stanford Chronic Fatigue Initiative website that was in the newsletter is not correct. (They changed it on us after the newsletter was drafted.) When that website is operational, a correct link will be posted.

    The link for the relocation of the CFS clinic did work for me.

    With regard to Hip's thoughts on enteroviruses. They are a player in me. Especially Coxsackie B3 and B4. If you want to see a detailed journey of my life the last couple of years see:
    http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200
    You will need to sign in to read the posts. I'm Timaca there too.

    I am very impressed with the work that Dr. Montoya is doing. He is a caring, kind and compassionate man. Also dedicated and smart.

    Timaca
    NK17 likes this.
  12. alex3619

    alex3619 Senior Member

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    Hi Everyone, I am biased toward the idea of enteroviruses due to my prior history: I have had coxsackie 3b. However, I think the Dubbo studies, quite old now in CFS research, clearly show that many bacteria and viruses, and potentially many other pathogens, can trigger CFS. It is a severe immune insult that is a problem (so yes that includes mold and poisons). What I do think might be the case is the enteroviruses might trigger a particular CFS subset, just as Lyme disease might trigger a different subset. Given the wide scope of Dr Montoya's research, I think he exemplifies my point.

    Bye,
    Alex
  13. Cort

    Cort Phoenix Rising Founder

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    Sometimes we forget about the Dubbo studies. I agree that many pathogens and probably other insults can trigger CFS (and FM). THey found high cytokine levels in those that got ill; maybe those were the key to the dysregulation that occurred???
  14. Hip

    Hip Senior Member

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    Methylation Cycle Protocol

    Hi Rich

    I must try your methylation cycle protocol again, doing it more carefully. It is a very intriguing theory. I did try this methylation protocol a few times a while ago, but I was so chaotic at that time - trying loads of protocols simultaneously - that I never really knew what benefits were caused by what. I see that you have a great list describing different approaches to supplementing with glutathione.

    Can I ask some questions on your methylation protocol, about the use of glutathione? I read that the half-life of glutathione is pretty short (can't find any exact figures, but I am guessing that short must mean around a few hours); does this mean that you would really need to take glutathione supplements every couple of hours or so, for best effect, to maintain good glutathione levels in the blood?

    Also, if I understand right, it is intracellular glutathione levels that must ultimately be raised. Whey and N-acetyl-cysteine supps I read can help boost intracellular glutathione; but what is the relationship between glutathione in the blood (derived from direct glutathione supplementation), and the levels inside the cells?

    Thanks very much.
  15. Hip

    Hip Senior Member

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  16. Enid

    Enid Senior Member

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    Really encouraging reading Cort, if only we had such dedicated research currently going on in the US from someone in the UK. All eyes now on your escalating research(ers). :thumbsup:
  17. Cure_ME

    Cure_ME

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    Thanks Cort for putting this positive message up. With all the negative press coverage of recently published virology papers we are getting in the UK, this cheers us up no end. Along with the YouTube video of Judy Mikovits stating: 'We expect treatments next year' (http://www.youtube.com/watch?v=D3pie1kpIVQ). I could not wish for a better Christmas present. Keep up the good work. Merry Christmas and happy NEW YEAR 2011!!!
  18. richvank

    richvank Senior Member

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    Hi, Hip.

    From 1999 until about late 2004, I encouraged PWCs to attempt to boost their glutathione levels directly by a variety of methods. This provided temporary help to quite a few people, but the results were not permanent for most. Then, in late 2004, I learned of the work by Jill James et al. in autism, in which they found that the glutathione depletion in autism is linked to a partial block in the methylation cycle, which lies upstream. They found that if they treated to lift this block, the glutathione level automatically rose, without directly supporting it. Having studied the biochemical abnormalities in CFS for several years at that point, I immediately saw the similarities between the biochemistry of autism and that of CFS. It was one of those rare "AHA!" moments for me. At that point I began to suspect that the treatments being used in autism would also work for CFS, and I started looking into the DAN! treatments and later, those of Dr. Amy Yasko. I encouraged PWCs to try them, and they seemed to help.

    The version of the glutathione augmentation list that you cited was actually written shortly after I had this realization. At that time, I was not yet sure how many PWCs had a partial methylation cycle block and would need to lift it, vs. how many could simply augment glutathione.

    As we got more experience, it became clear that the partial methylation cycle block is found in nearly all PWCs, and seems to be the key aspect of the biochemistry, from which everything else in CFS results. So I began to focus my efforts on encouraging PWCs to treat the partial methylation cycle block, rather than attempting to boost glutathione directly.

    If you read the other papers, articles and talks at www.cfsresearch.org, you will see how my thinking developed over time, in response to what I learned from the experiences of many PWCs, as well as more study of the biochemistry. In early 2007 I proposed the GD-MCB hypothesis, and shortly after that, the socalled "Simplified Treatment Approach," which is based on it. This treatment produced good results in many who tried it, and eventually Dr. Neil Nathan was willing to do a clinical study of it in his practice, which we reported in 2009 (see the website cited above). While there was no control group in this study, the results were nevertheless very encouraging, and over time the use of this protocol has been growing. There are also several other protocols now that address the methylation cycle block. They all have in common the combination of high-dose forms of B12 and RDA-level dosages of folates, usually the chemically reduced forms, folinic acid or 5-methyl tetrahydrofolate, or both.

    At this point, I don't believe that the glutathione level will stay up in many of the body's affected organs, tissues and cells in CFS unless the partial methylation cycle block is lifted. Nondenatured whey protein and NAC will indeed help the liver to make glutathione, but it will not correct the partial methylation cycle block in these parts of the body.

    When glutathione is put directly into the blood, such as by IV administration, about 80% of it is taken out by the kidneys in a few minutes to an hour or so, depending on the dosage given. The kidneys break it down, reform some glutathione, and export some cysteine to the blood. About 10% is used by the lungs. The other 10% goes to a variety of other cells.
    There is some temporary benefit from this, but in CFS, if the partial methylation cycle block is not lifted, the glutathione levels will soon drop back down again.

    For the past four years, I have focused on lifting the methylation cycle block, and have not been recommending glutathione boosting. This has been significantly helpful for about two-thirds of those who have tried it. However, the treatment can be unpleasant. I think that part of this is due to restart of the detoxication system, which mobilizes toxins and produces detox symptoms. But there also seems to be an increase in excitotoxicity symptoms in many who do this treatment (anxiety, insomnia, a "wired" feeling, hypersensitivity of the senses). I have begun to suspect that this may be due to a temporary additional lowering of the glutathione levels in the astrocytes in the brain when this treatment is begun, the reasoning being that the treatment will divert more homocysteine toward reforming methioninine, rather than going toward feeding synthesis of glutathione. So recently I have suggested that if people have excitotoxicity symptoms on this treatment, they might consider adding some measures to support glutathione. The liposomal glutathione supplements would be one possibility. For those who can tolerate nondenatured whey protein (Whey to Health, True Whey, ImmunoPro, or RenewPro), that might help, also. I recommend caution with using NAC if there could be a significant body burden of mercury, because NAC can move it into the brain.

    I hope this is helpful.

    Best regards,

    Rich
  19. Cort

    Cort Phoenix Rising Founder

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  20. Cort

    Cort Phoenix Rising Founder

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    That link to CFS Research simply goes to the main web page. If you want to go directly to them they can be found on one page on Phoenix Rising http://aboutmecfs.org/Trt/TrtGSHIntro.aspx.

    On the Phoenix Rising site they are broken up into theory and treatment papers so that you can negotiate a little easier as well - there are quite a few papers there.

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