1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 17, 2011.

  1. Anne

    Anne

    Messages:
    84
    Likes:
    56
    Thanks for this, Cort!

    I have for some time been wondering about the NK cell function tests. Many ME/CFS researchers/clinicians seem to be viewing them as a hot candidate for a biomarker (or even plainly: a biomarker) for ME/CFS. Why hasn't this test been accepted as a biomarker? - one wonders. Are the results not consistent enough? (I heard there was a study at the Ottawa conference with opposite results?) Is it just a matter of more studies needing to be done? Or is it not accepted for some other reason (expensive?)

    Any comment on this from those of you who might know (Cort... ;-) would be great!
  2. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    Some people Dr Peterson has been treating with AV's, have improved CNS function = Improved Endocrine function. Starts upstairs.
  3. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    Dr Peterson has seen some great results with Cidofavir over the last few years. People regaining much of their health. Yet, this is only treating opportunistic infections, not cause. I would have no problem taking CMX for life if it gave me 80+ percent of my health back. The drug sounds much safer and more effective than Vistide (IV form).
  4. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    "The hyper-aggressive patients impugning researchers' integrity are, from his stance, only hurting the community and their own chances for help".

    That's putting it politely. I think it's been obvious for some time just how much damage this small "hyper-aggressive" group has caused. Disheartening to see how many people have jumped on the conspiracy bandwagon railing against some of our best and most dedicated doctors and researchers. Baffling and absurd that anyone would believe someone like Dr Peterson would participate in attempting to squelch research for his own personal gain. Nothing could be further from the truth.

    I choose to focus on the reality of how much these dedicated folks have given and continue to give to this community. Those who perpetrate lies and hostility will fade away. Truth/integrity will win out. I choose to stick with the winners.
  5. anniekim

    anniekim Senior Member

    Messages:
    586
    Likes:
    186
    U.K
    Thanks Tristen for your reply, very helpful. Yes, I too would happily take a drug for life if it gave me 80% of my health back. Do you know whether those who do well on cidofavir are those who show active hhv6 infection? Thank you.
  6. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    It seems there is no doubt that it's helpful for those whose primary active infection is CMV. I'm not completely sure about the other HHV's. My impression from him is that it is hitting those as well, and very likely other undiagnosed viruses. Sorry that I can't answer how much. It would be nice to hear from those who treated HHV6 with the drug. His office and clinic had people everywhere hooked to IV's getting infusions. Sometimes in the halls. Gotta be some of those folks here.
  7. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    At last! :)

    Someone is bothering to look at pregnancy! Having had ME for 41 years and seen two pregnancies in that time, other than very severe hyperemesis gravidarum for both, by 22 weeks I felt as though I'd been let out of a cage my ME symptoms had improved so much. I had had some relative remissions between onset (age 10) and my pregnancies, but something very different happened during that time which led me to, not total wellness but, a degree of wellness I had not seen prior to onset and certainly haven't seen since. I'd put it at about 80% well. I tried two courses of different forms of HRT to try to replicate without avail and actually with a worsening of symptoms, though admittedly I was told by one Gynae that if it had been the sex hormones which had contributed to my well being then I would have been abruptly thrown back into relapse at parturition and this did not happen. Tbh the timings of benefit seem to mirror the Rituximab studies so fantastically well that I personally think this is where a pregnancy / autoimmune study should look. (I am positive for ANA).
  8. anniekim

    anniekim Senior Member

    Messages:
    586
    Likes:
    186
    U.K
    Thanks Tristen...
  9. SpecialK82

    SpecialK82 Senior Member

    Messages:
    884
    Likes:
    459
    USA
    I couldn't agree more with these sentiments. There is a huge difference between being assertive and being aggressive/bullying. We always need to use our voice to ask for good research, compassionate and humane medical care, and a government that has our best interest at heart. We want to be recognized as the truly physically ill people that we are. We want doctors, researchers and the world in general to care about our well-being and to do everything in their power to help us.

    However, we all learn when we are small that the world doesn't revolve around us. People are living their lives, going to work, socializing with friends without once ever thinking about us. Unfortunately, that is the world in which we live. Everyone has their own issues that consume most of their thoughts and energy.

    One of our major goals - if not the goal - is to attract top-notch researchers into the field. Which ones of us would not want a diverse set of scientists all in one room debating and tearing down theories, building better ones and tearing them down again until they finally come up with something concrete and definitive! I want this I would pay big money for this!

    So it completely blows my mind when some patients ridicule anything or anyone that doesn't fit neatly into their own current hypothesis. Since the cause and cure for ME/CFS is not known, wouldn't it be highly possible that the true answers will be something that is not yet understood by medical science today!!

    Don't we need every scientist that we can get, digging at the cause of this illness and debating results with other scientists until they figure the cause and treatment?

    Why are patients rude and mean-spirited to these very people that we need fighting for us. For example, just months ago, some patients were sending nasty emails to John Coffin, who said XMRV was dead but that he was not ruling out other pathogens. It's easy to see that he was right in hindsight - but there were actually patients who were not retrovirologists, virologists, or even scientists arguing that he was dead wrong and calling him every name in the book. Really??

    So even before the BWG study came out and Dr. M still believed in XMRV, we as a patient population could have thanked Dr Coffin for his honest evaluation and asked if then he would at least work on finding other pathogens. We could have had a BIG ally. We could have been much further down the road with other pathogens then we are now. IMO, we continue to blow good opportunities like this because we insist that he must not want to find a cause for ME/CFS, he doesnt believe in it, or hes part of a conspiracy.

    Not only does this discourage the researchers in question, but also many others who are on the side-lines that we will never know about, because they do not want the same treatment. To work against ones own well-being for the sake of screaming the loudest on a forum is ill-logical behavior that gives Wessleys camp more ammunition and makes it that much harder for the rest of us.
  10. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
  11. acer2000

    acer2000 Senior Member

    Messages:
    573
    Likes:
    202
    I am sorry but I can't really agree with Dr. Peterson's assessment that CFS must be the result of immune dysfunction and not an underlying acquired trigger. Its a chicken and egg problem I know, but if you look at the epidemiology of CFS - it weighs heavily in the favor of a contagious entity that becomes chronic or some common exposure to a toxin. How else can you explain outbreaks? Its very very unlikely that a whole town full of previously healthy people of all different ages and background who are genetically unrelated all have the same underlying susceptibility to develop ME/CFS at the same time unless the susceptibility was somehow acquired. Immune dysfunction is very likely a secondary effect of a primary pathogen or toxin than it is the primary cause of the illness. Just because we haven't found it yet, doesn't mean it doesn't exist. This interview makes it sound like Dr. Peterson has given up on that idea. That seems unfortunate at a time where CFS is only starting to get the resources it needs to do the quality research required to answer these questions.

    A whole town full of people's immune systems don't just one day go out of whack after functioning normally for a lifetime. Something has to be causing it.
  12. acer2000

    acer2000 Senior Member

    Messages:
    573
    Likes:
    202
    Regarding HGRV research...

    This has been posted elsewhere. But it highlights why, in my opinion, it would be bad to throw the baby out with the bathwater regarding XMRV. I hope they don't stop retroviral research in CFS in general just because research on one particular strain of one retrovirus seems like its not working out. It is conceivable that Mikovits et al were on the right track with the retrovirus idea.

    ---

    http://www.ncbi.nlm.nih.gov/pubmed/6202923

    J Natl Cancer Inst. 1984 Jun;72(6):1349-56.
    Suppression of natural killer cell activity by Friend murine leukemia virus.
    Moody DJ, Specter S, Bendinelli M, Friedman H.
    Abstract
    BALB/c mice infected with Friend murine leukemia virus (F-MuLV) evinced a decreased natural killer (NK) cell activity to susceptible target cells. This suppression increased as the interval between infection and assay was lengthened. The decrease in NK activity due to F-MuLV infection was partially reversible when spleen cells were pretreated with interferon before the cytolytic assay. The ability of F-MuLV-infected splenocytes to bind to target cells was unaltered, indicating that the defect was in the lytic phase of NK cytolysis. When mixed with uninfected spleen cells, F-MuLV-infected splenocytes suppressed their NK cell activity. This suppression was associated with a nylon wool-adherent cell population in the F-MuLV-infected spleens.

    ---
  13. acer2000

    acer2000 Senior Member

    Messages:
    573
    Likes:
    202
    This experiment needs to be run again using today's micro-array technology to see if they can catch what exactly is being transmitted to the monkeys that is causing the pathology to develop. IMHO this argues against the idea of "hit and run" because they were able to take blood from humans with ME and after putting it in monkeys, the monkeys developed pathological changes similar to the humans.

    In this outbreak of ME in Adelaide the punative agent could be transmitted to monkeys
    Pellew RAA, Miles JAR; Med J Aust:1955:

    1955:

    In this outbreak of ME in Adelaide, Australia, an agent was repeatedly transmitted to monkeys; when the monkeys were killed, microscopically, infiltration of nerve roots with lymphocytes and mononuclear cells was seen and some of the nerve fibres showed patchy damage in the myelin sheaths and axon swellings consistent with neurological involvement.

    In these monkeys, there were widespread changes involving the dorsal root ganglia, cervical and lumbar nerve roots and peripheral nerves. Perivascular collars of lymphocytes and plasma cells were in the cerebral cortex, brainstem and cerebellum, spinal cord and around blood vessels to nerve roots (Pellew RAA, Miles JAR; Med J Aust:1955:2:13:480-482, cited by J Gordon Parish; Postgraduate Medical Journal 1978:54:711-717 - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425322/ ).
    currer likes this.
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Really interesting Marco! A Nijs recently concluded the central sensitization is present in CFS. I think the studies showing increased pain sensitivity after exercise - now pretty well established I think, are fascinating. I think this fits in with sensory gating? The Lights believe infections in the dorsal root ganglia may effect sensory processing and Clauw believes sensory processing problems are key in FM - and really with all the problems with outside stimuli, chemical sensitivity and the many symptoms present in these disorders, I think it fits really well.

  15. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I didn't know that! Hah! I do remember that NK cell activity is highly effected by stress. Well, we do know that CFS is not depression - they've looked at that exhaustively....
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Thanks - it was fascinating sitting down him. Thanks to Corrine for getting me in there - she was quite persistent :cool::cool:
  17. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Good question....hmmmm. I think you may be right that something like natural killer cell sets the stage for these problems.. - he did attribute one patients decline probably to his NK cells functioning getting wiped out. Why NK cell dysfunction is low is one of the key questions - and the Peterson/Bond group, the CDC and the Klimas/Fletcher group is looking at that.

    I think he thinks the central problem is sickness behavior; that is something like a cytokine cascade in the central nervous system AND I think he probably thinks that it can be caused by herpesviruses. Herpesviruses are so intriguing because they fit the Light theory of CFS as well - since they actually maintain their latency in the dorsal root ganglia (these bundles of sensory nerves outside in the body).
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I think NK cell function tests are emerging as a biomarker. I'm not sure why its taking so long but there is more and more interest - even the CDC is doing studies on them. My guess is that NK cells are relatively new to the medical profession, they aren't considered the heavy hitters of the immune response and it takes a long time to do anything definitive in CFS given the low funding. There was a study that did have opposite results at Ottawa but that was the first one that I had seen and there was quite a talk about it and what went wrong at the conference. Dr. Klimas and Fletcher had several ideas.
  19. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    He's VERY excited about this drug. Hopefully it will be much more effective - gets in there deeper - and much easier to handle than other herpesvirus drugs. Dr. Dantini also mentioned another herpesvirus drug under development by another pharmaceutical company. I think Corinne is going to start the drug in the next couple of months; I'm sure we'll hear how she's doing.
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Well the CDC, believe it or not, is quite interested in this as well - and why? Because they have a female researcher (Boneva) who wonders why so many women have CFS. She found that very high rates of increased bleed, early menopause, endometriosis and hysterectomies in CFS. There is some study evidence suggesting problems with estrogen. Clearly something is going on in this area.
    ahimsa likes this.

See more popular forum discussions.

Share This Page