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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Talking with CFSAC - Views from the other side of the table

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 19, 2013.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    Well, I wrote about it a little the year before last here:
     
    http://forums.phoenixrising.me/inde...ion-breakdowns-with-family.11736/#post-201915
     
    What would be really funny is if I was extra tired and brain fogged right now because of pursuing the same thing.

    If I had been doing that.
    Nielk likes this.
  2. Nielk

    Nielk

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    Thank you Roy for this link and the link to "your story". It is very informative. I recognize myself in so much that you said. Your hard work on our behalf is much appreciated. I hope that it didn't take too much of a toll on you.

    In much of the advocacy history that you describe, many ME/CFS patients who want to be involved get easily burned out. It is hard to run a real efficient advocacy work/lobby with only patients. I think that we are starting to see more family members getting involved but, definitely not enough.
    Sasha, Purple and Roy S like this.
  3. Otis

    Otis Señor Mumbler

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    I just lost a huge post and my arm pain is over the top today so a short summary will have to do.

    Heaps - I agree. This is validated and should be used, just maybe not exclusively. I agree that an exercise challenge is useful but isn't feasible for the sickest of the sick. I'm almost bed bound. My CFS doc, who uses these tests, along with my GO agree this will most likely make me permanently worse. The medical community needs to be looking at this as a complex illness and treat it as such. MS is quite similar. Diagnosis isn't a blood test, it's a work-up and ME should be looked at the same way. But our own medical advocates need to preach that it isn't so damn hard to Dx. Use the ICC or at least the CCC. Think just a little docs. The era of overly simplified, flow chart, medicine is a joke. It's no wonder the US isn't close to the top of the world in medical/mortality outcomes, our diet not withstanding.

    The committee makes it's own limitation, most importantly the chair. This was the biggest part of my lost post. They control the charter and bylaws - meaning they can change them - but don't even know them, let alone understand them. They also need to learn to be more forceful. E.g. "As the DHHS appointed authority we asked you, CDC, to take down the toolkit. For the record, tell the Secretary are you going to do that or not? And we can lose ground. The CDC wants to keep studying idiopathic chronic fatigue and calling it CFS. The advocates have taken this on and I expect there will be lots of testimony on the subject come October, without the divine hand of the CAA guiding it. But if the committee doesn't take a forceful stand with the CDC - it will take us backward - AGAIN!

    I stand by my statements about the CAA. Justin, can you help me man?

    Roy and Erik. Glad you came out to play on this topic! We need your perspective.
    jimells and heapsreal like this.
  4. Otis

    Otis Señor Mumbler

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    Hmm. Despite the system telling me I had been logged out apparently it, albeit belatedly, made my original post. I did check and it wasn't there when I started over.

    So sorry for the mostly redundancy of the last post.
  5. Sparrowhawk

    Sparrowhawk Senior Member

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    I, too, thought this piece was interesting: "Many years ago, we characterized CFS as a neuro-endocrine-immune disorder because these are the organ systems usually affected. At the current time Neuro Endocrine Immune Dysfunction would be my personal choice of new names for ME/CFS." I had just been wondering about this yesterday but missed the important endocrine piece of the designation.

    Vitally important from a downstream effects standpoint is how a name change can influence everything from the immediate (diagnosable, respect, public - work - family perception, likelihood to get further research $$ and interest/participation) but also things like disability claims. If I get a formal diagnosis of Neuro Endocrine Immune Dysfunction and put it on my disability claim, would they still put a two year max limitation on it like they do for CFS (which is one of only FOUR exceptions to lifetime coverage, and is the same as for alcohol and drug addiction recovery -- lovely company to keep)? One would hope that a diagnosable condition that has clear biomarkers, and a specific prognosis would help. Things like MS, stroke, and Parkinsons can get lifetime disability, CFS not so much.

    On the family members and advocacy piece I hazard that most immediate family who could do something along those lines are busy picking up the slack and caregiving. Not sure if a concerted study of previous successful movements (as per the comment about Alzheimer's advocacy above) might be helpful, as benchmarking? Ye gods, would be great to have the equivalent of coworkers all out doing marathons to raise funds the way they do the Leukemia and Lymphoma Society.

    It is a bloody shame that as per other comments above we should be feeling we have to blackmail our topic committee and CDC into doing anything useful
    Nielk likes this.
  6. Ember

    Ember Senior Member

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    So do I, Nielk, and I was quoting the CCC. In addition to neurological/cognitive manifestations, the CCC requires that an ME/CFS patient “have one or more symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations.“ It's interesting that an ME/CFS patient with an autonomic symtom need not have both a neuroendocrine and an immune symptom, interesting especially given the fact that 5 of 15 CFS patients in phase II clinical trials of rituximab were unresponsive to treatment. Were the unresponsive five patients missing one of these two manifestations?

    Dr. Friedman's “Neuro Endocrine Immune Dysfunction” label might better fit an ME patient, the ICC being more selective and coherent:
    The ICC suggests prominent-cluster subgroups: neurological, immune, metabolism/cardiorespiratory or eclectic (balanced), and PENE is itself defined as “a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.”
    Nielk likes this.
  7. Kati

    Kati Patient in training

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    No one mentioned it yet but here is, in my opinion, the most important quote of the article


    Dr Freedman: "While some may argue, I would say that the Stevens’ Protocol, which uses two-day CPET (CardioPulmonary Exercise Testing), is an effective way to diagnose ME/CFS. I view the Stevens’ Protocol as the first scientifically and physiologically valid method of diagnosing ME/CFS."
  8. Sparrowhawk

    Sparrowhawk Senior Member

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    OK. But as someone who is still recovering from a simple glucose tolerance test, I get that this will be a tough hurdle for the really sick. And even for those doing relatively well such an ordeal could still knock us back for weeks or months. I wouldn't do it unless the outcome would lead to clearly significant later support, like disability qualification.
  9. Kati

    Kati Patient in training

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    For someone who is newly sick with all of these vague symptoms, wouldn it be nice to have a test that could confirm or eliminate a ME dignosis?

    Of course, the severely ill is excluded, however by now,yearsafter onset, they already know what they got, because they went through the diagnosis by exclusion.

    It is not a perfect dignositc tool. But then, what else have we got? NK cell function is not as specific/sensitive but then what do I know. (My NK cell function was still normal 18 months afteronset but dropped below normal at 24 months.
    Sparrowhawk likes this.
  10. Sparrowhawk

    Sparrowhawk Senior Member

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    Yes, agreed. Good points. And then establishing related norms, variances and curves for metabolic indicators/responses in the newly sick when they step up to the two day challenge becomes another helpful data set with its own diagnostic promise. In other words if they find X or Y is a common biomarker for all the folks who get provable PEM from the challenge test, eventually those may be accepted as proxies for the test.

    Not to get to far ahead of things!
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  11. Kati

    Kati Patient in training

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    In my opinion, the sooner we have biomarkers, may them be blood, spinal fluid, or exercise test, the better.

    Who decide anyways what's a biomarker and what isn't? CDC has not volunteered any in the past 30 years. dr Freedman is doing us a favor by saying what he said. It's a good thing.
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There are biomarkers out there and maybe we have to have several for a 'full' diagnosis, nk function seems to be the stand out, rnase is another, cytokine patterns which i read last night that il5 is a stand out. I think klimas stated il5 with nkfunction would be almost fool proof?? And then those that can manage the 2 day exercise tests. There was acouple more that i saw on a talk by dr peterson. If they fit the CCC criteria and then most of the biomarkers then they get a diagnosis of ME, if they only get the CCC but not the biomarkers then maybe class them as neuro-immune but should be followed closely for when/if biomarkers occur.

    Its not rocket science but us dum arses with brain fog can work it out, why cant these intellects do it. Makes us realise how political it all is and patient care is a distant second or third on the list behind politics.
    jimells, Nielk, Kati and 2 others like this.
  13. Sparrowhawk

    Sparrowhawk Senior Member

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    Bloody right. I was just wondering if any of them even read this forum, so much anecdotal data and real life experience reported on various therapies here that could be informing their work...
    heapsreal likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    They probably wouldnt lower themselves to listen to us, they know better????
    Sparrowhawk likes this.
  15. Ember

    Ember Senior Member

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    Is this something new? The ME Primer provides these immune system profiles:
    Dr. Klimas is, of course, one of its authors.
    Kati likes this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I didnt see it in the primer but heard it in a utube talk?
  17. WillowJ

    WillowJ Senior Member

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    fwiw, we have been doing this for 2-3 years. I think it started with Marly? There information is out there.

    I am not sure who decides on the agenda (and there is probably room for more community involvement here) but it's always included some things I thought I could support. The message is usually, "whatever else you say, try to include 1-2 of these 5 points" or something like that.

    I think it's been successful. At the committee meetings, we hear testimony after testimony agreeing on the same items. And I think it's working. Both CDC and NIH are indeed changing definitions. Now they still need to be told that:

    1) we need an immideate temporary change even if we change it shortly. there are several existing options which, while not perfect, would be improvements

    2) they (especially NIH who seems to be working in secret) need to take input from us

    I am not sure what CDC is doing. They are working partly with our clinicians on one project which is an amazing step for them, and then they do stupid stuff like create registries with random inexperienced clinicians recruited by a marketing company, where the patients can't have any lab tests come back different from healthies.

    In Fukuda they wrote that they wanted to figure this out, and then they lost track of what they were doing. Somewhere in there they forgot that the objective was to actually FIND abnormalities and figure this out.

    As far as local cohorts go, be it Incline Village or Royal Free, in science we have something called "generalizability". Something interesting is found, and then studied on a broader scale to see what part is due to local (or other specific) factors and what part is the broader thing itself.

    So far we know reduced NK cell function is generalizable. We can use this as a marker in the same way that ANA is used as a marker: it does not designate any specific disease, but it indicates a disease process and it contributes to diagnosis (in the case of ANA, for several diseases). Depending on the disease, they also use other markers and signs and symptoms.

    There are few diseases which are diagnosed with just one marker.

    I have always thought, and continue to think, that what we have collected as ME/CFS (not counting the non-neuro-immune misdiagnoses) could be more than one disease, and it's encouraging to see Stephen Holgate say the same.

    Of course it's not the patients' problem that many of us are collected together. Neither is this unusual for diseases in general: rheumatoid arthritis, for example, is thought to be several different diseases with different causes and different treatments.
  18. WillowJ

    WillowJ Senior Member

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    It does happen some. In cases where it doesn't, I think it's because

    1) their time and energy is full from taking care of us (in some other diseases with similar disease burden to severe and very severe levels, patients would often have assistive devices and even 24-hour nursing care) or

    2) they are disengaged because of the stigma or

    3) they are just not that kind of a person anyway/ don't have the skills (and wouldn't engage even if it were a different disease) or

    4) there is a lack of response from government, etc., which is discouraging. However, this is beginning to change. So it's a good time to try (or try again).
    Purple and Nielk like this.
  19. Questus

    Questus Senior Member

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    Am so very pleased to see Mary Ann Fletcher, Ph.D. on this board. She has so much to offer. Hope PR will highlight her unique and significant viewpoint!

    Thank you for your service Mary Ann Fletcher Ph.D.

    Best,
    Questus
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  20. Sasha

    Sasha Fine, thank you

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    Thanks, Willow, I didn't know that, and I'm surprised to hear about it. I've never noticed anything like that on PR. I'd like to see more community involvement - we could easily do a poll on PR. I think a message is stronger if it can be demonstrated it's got community backing (as could be demonstrated with a poll). I think there's much greater potential for a 'wall of patients' at CFSAC - there's a lot of testimony that doesn't request any specific action at all.
    WillowJ and Nielk like this.

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