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Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

Discussion in 'General ME/CFS News' started by Sasha, Mar 11, 2016.

  1. duncan

    duncan Senior Member

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    The willful ear closing going on would seem to mostly rest with the NIH. People like me are listening, but the most we can do is express our concerns. We cannot implement any changes in the study design or process; that ability rests solely with the NIH.

    Moreover, addressing issues/concerns is not the same as adequately addressing them, and that is far less than acting on those issues/concerns.

    Nath may not be interested in psychology, but it would seem someone at the NIH is, unless a better explanation for Wallit & Friends is coming.

    When Nath said he was willing to add more patients if necessary, I believe it was in relation to his shrugging off the implications of non-pwME making it into the cohort - by saying he can identify meaningful subsets regardless of whether non-pwME made it in, and if so he would add patients accordingly.

    Facts are facts. One of those is we still have three psych proponents in a patient selection and confirmation process that is on uncertain grounds. If we get the patients wrong, all the high end technology and intellectual prowess and NIH personnel will be for naught. Worse than naught, the misleading results could come back to haunt us.

    I am truly puzzled why this is a point of contention. This is obvious. What is not obvious is why the NIH is not acting to offer remedies.
     
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  2. Bob

    Bob

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    The issue of recruitment and patient selection has been addressed by the NIH...
    1. Using CCC.
    2. Recruiting ME patients of expert clinicians.
    3. A panel of people overseeing the recruitment process (so it won't be up to Wallit to make fundamental recruitment decisions, even though he is involved in the process).
    4. Patients will be assessed individually for post-exertional reactions.
    5. Patients require sudden post-infection onset.

    I think this is about as strong a recruitment process as we could ask for. I agree that having Wallit involved isn't ideal, but he's not in charge of decision making re strategy.

     
    Last edited: May 2, 2016
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  3. duncan

    duncan Senior Member

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    Having pwME advocates integrated into the selection process would be helpful. Maybe with veto authority?
     
  4. Kati

    Kati Patient in training

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    Another reason why engaged and knowlegeable patients need to be involved at all parts of the research process at NIH ( and at CDC)
     
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  5. Bob

    Bob

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    I'm interested in these new discussions suggesting that CFS does not involve post-exertional fatigue. Yes, we all agree that ME isn't fatigue but one of its defining features is exhaustion (which is otherwise described as fatigue). The CCC require "post-exertional malaise and/or fatigue". Even the ICC prominently defines the cardinal symptom as a "Marked, rapid physical and/or cognitive fatigability in response to exertion" and "Post-exertional exhaustion" and "Low threshold of physical and mental fatigability".

    So I personally don't think we should get bogged down in the semantics, but instead focus on intent and methodology.

    I can't think of a better way of assessing PEM than measuring post-exertional exercise capacity, given our current state of knowledge.
     
    Last edited: May 2, 2016
  6. actup

    actup Senior Member

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    @viggster, please don't insult our collective intelligence by expecting us to simply accept the promises made by the NIH. We as a community have been lied to, demeaned, mislead and manipulated by these public health agencies for at least 27 years. Nothing can compensate us for the unutterable physical suffering, poverty and destruction of family relationships this behaviour has caused. Many of us are watching young family members deteriorate due to me/cfs. Oh and did I mention loss of successful careers?

    The late Dr William Reeves who headed the me/cfs program for many years at the CDC worked closely with the Wesley school at QMUL. The goal has always been to ration medical care for the me/cfs population in order to save on health care and disability care costs. A recession increases this pressure. Central health care systems like the NIH can more easily frame the argument and the patient for that matter. The NIH and CDC have had to be a little more subtle. These decisions have been high level government decisions in the UK as well as the US. It was so easy with a patient population which quickly became isolated from support of any kind after becoming ill and were unable to protest as AIDs patient's friends and families had. We deteriorate more slowly and spend years in confusion without even the support of a real diagnosis.

    You may be impressed by a five year study with 40 patients but I'm frankly not. Feels more like a delaying tactic. We've clearly seen how easy it is to manipulate a study's findings and how some studies are designed for that purpose. Will the NIH study process be any more transparent than the PACE trial?

    What may have put me off the NIH study the most was the page borrowed from the Wesley school painting the me/cfs community as having an unusual number of bullying patients who scare the researchers off.

    Btw, I don't think the fox news vs msnbc fans analogy works. Many of us are alternative media fans by necessity. If the NIH,CDC( ties to disability insurance cos.?) and NHS (with stong ties to UNUM insurance co) can treat us as I described above why trust main stream media (part of the oligarchy/ government complex) uncritically.
     
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  7. BurnA

    BurnA Senior Member

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    I think we should be aiming a bit higher than than the pace trial if we are looking to draw comparisons.
     
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  8. duncan

    duncan Senior Member

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    I wonder how many times Nath referred to fatigue during his talk.

    Yes, fatigue is part of ME. It is not the defining characteristic, though. It is one part, and it does not distinguish us from other diseases. ME/CFS is a symptom constellation, and the NIH needs to get that right from the get-go. That ME/CFS is mostly about fatigue is a CDC myth, an 80's construct. Yes, in some sufferers fatigue CAN be the dominating feature, but in others it can be cognitive issues, or muscle weakness, or migrating pain, or...But really, it is a CLUSTER of symptoms. If there is a distinguishing feature, it is PEM.

    There is no recipe for ME/CFS. It is more like selecting from a Chinese menu, only fate chooses for you.

    So when I see Nath repeatedly referring to fatigue in his talk about ME, I get concerned. I am concerned who else thinks ME/CFS boils down to degrees of fatigue. Who from those is involved in the selection process? How pervasive is this confusion?

    Some of this confusion can be mitigated through the research process itself. But if it causes the wrong people to populate the study cohort, we are screwed.
     
  9. viggster

    viggster Senior Member

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    Two years, not five. That's too slow for my taste but I don't have the power to change it.

    Also, I've been lobbying Congress for a big ME budget and permanent program office at NIH. Does that sound like the behavior of someone satisfied with things?

    I also take the radical view that it's ok to give plaudits to gov't officials when I see them taking positive steps. It's foolish to indict Dr. Nath for crimes committed by Reeves.
     
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  10. actup

    actup Senior Member

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    @viggtster , I stand corrected re: time frame of study. I did not in any way indict Dr Nath for Dr Reeve's misdeeds. I just find it hard to believe that the higher ups at the NIH were unaware over a period of 27 yrs or so of the CDC's agenda under the supervision of Reeves and others. If we don't understand the politics we cannot find a solution to the problem. I will be the first to shower plaudits on NIH researchers when they have earned our trust with some solid results.
     
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  11. LiveAgain

    LiveAgain Senior Member

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    Okay, so what do you think of the FMD neurologists on board? Would you feel comfortable having doctors with a focus in "psychosomatic" illness analyzing your brain scans? I wouldn't.

    Here http://www.neurology.org/content/84/14_Supplement/P3.008 Maurer and Hallett say: "Autonomic activity is of interest in FMD patients given the hypothesis that the abnormal movements seen in FMD are in part the result of converted psychological stress and increased vulnerability to emotional reactivity." Sounds very quacky to me. Hard to picture Nath having a conversation about "converted psychological stress." WHY are they still here!? And even though they find autonomic dysfunction don't seem to shift their position away from FMD being a conversion disorder. I don't trust them.

    Here Hallett lumps CFS in with MUS, 2nd paragraph. https://books.google.com/books?id=JQ0-jINVqSMC&pg=PA12&lpg=PA12&dq=psychogenic+movement+disorders+and+other+conversion+disorders+chronic+fatigue&source=bl&ots=Fr9x88-x9l&sig=Z0x6d_j03alFjfHX49_KDnhKbkc&hl=en&sa=X&ved=0ahUKEwiG9pyLgo7LAhVFdz4KHVUJC-o4ChDoAQgbMAA#v=onepage&q=psychogenic%20movement%20disorders%20and%20other%20conversion%20disorders%20chronic%20fatigue&f=false

     
  12. Valentijn

    Valentijn Senior Member

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    Where is this coming from? The quotes from @Bob did not specifically address the concerns regarding statistical power in the current study. I have seen nothing saying that "We have performed the calculations for this specific study, and only need a 10% difference between patients and a control group on any of these measurements for it to be statistically significant."

    Based on the discussion of such statistics in the Hallett & Horovitz article, it's probably needing at least 30% differences, and likely quite a bit higher due to having 2 control groups.
     
    Last edited: May 3, 2016
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  13. viggster

    viggster Senior Member

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    I don't know why he's in the study. Before I decided he was Really Bad News, I'd want to talk to him. The chapter you link to is a review article, meaning he is repeating and summarizing what others have published. Nothing original in there. He certainly didn't come up with the concept of 'CFS' as MUS.

    If I ever talk to him, I'd ask what he thinks about the distinction between CFS and ME, and I'd point out the CFS definitions are useless (and harmful). Researchers sometimes have open minds...maybe being involved in the study will present an opportunity for him to learn that ME is distinct from CFS.
     
  14. duncan

    duncan Senior Member

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    I'm all for trying to convert this sort to Science, but not while the meter is running, and they are in the driver's seat, we don't know where they are taking us or why, and the collective ME community pays the price.
     
  15. LiveAgain

    LiveAgain Senior Member

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    What does it matter that it's a review article @viggster? The paragraph where he mentions CFS are his own words, he's not referencing anything. It's an article about psychogenic movement disorders (he calls MUS) and gives other examples of what he thinks are MUS.. CFS and Fibro. He may not have invented the idea of CFS as MUS but he clearly agrees.. and ignores tons of available research to the contrary. When he says "CFS" I'm pretty sure he's talking about the same disease in question here, the one NIH is studying. I really don't like that doctors with background in psychosomatic medicine are involved and wish those 3 spots (FMD docs) could go to neurologists with more relevant experience and whose focus is purely biologic/ organic. If you happen to learn what role they'll be playing, could you please share?
     
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  16. viggster

    viggster Senior Member

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    I understand your concern. The review article was refrerencing work on Oxford and Fukuda criteria CFS, which is definitely not the population the new study will be looking at.
     
  17. Valentijn

    Valentijn Senior Member

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    So extensive psychobabble and a long history of belief in psychosomatic disorders is fine, as long as he's a nice guy in person and tells you what you want to hear? Again, by that standard we might as well invite Simon Wessely to join the team.

    This is about his research, not his personality. And his research shows unwavering psychosomatic beliefs and a willingness to use poor methodology to produce research which supports those beliefs.
     
    Last edited: May 4, 2016
  18. Yogi

    Yogi Senior Member

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    I am cautiously optimistic about this NIH study and Avindra Nath. He seems like a good scientist to have on the study.

    He did seem quite frustrated on this call.

    I do think we need to have constructive criticism and channel this via appropriate communication channels when in place. However we all do need to ensure that we are not seen to be pushing away the scientists and NIH are harming our own self-interest.

    There are good things and we need to ensure we don't 'throw out the baby out with water'. There seems to be good tests involved in this research study but I am still like many others concerned about Wallit as Lead Clinical Investigator and the risk of this study. NIH seem to be receptive to patient input and hopefully they continue to be and act upon constructive comments.

    However one additional important issue from the call is regarding terminology. He repeatedly used Myalgic Encephalomyelopathy rather than Encephalomyelitis which is the correct term and recognised globally and in the ICD-10. This is important given history of CFS and the deception practised by UK psychs Wessely, White, Sharpe "confusing" it with "chronic fatigue".

    Nath needs to clarify and rectify this position.

    I don't know if this has been posted here but it is relevant.

    https://www.facebook.com/notes/jan-van-roijen/re-dr-avi-nath-me/10154382672523322

    By Prof. Malcolm Hooper
    Dr Nath is guilty of adding error to error by renaming myalgic encephalomyelitis as encephalopathy- this adds to the fog!
    Others have tried to encourage the use of this alternative name, but almost every research study has identified inflammation especially in the brain/spinal cord, immune, cardiovascular and nervous systems; from specific tests, including MRIs, to post mortem tissue analysis.
    It is perverse and/or disingenuous to slip encephalopathy into the debate at this moment.
    Furthermore it is not listed in ICD-10 and lacks universal recognition.
    Dr Nath has immediately made it clear that he does not care about language of the illness or is practicing a deception that serves only to confound.
    Myalgic encephalomyelitis is a historically valid term and is also a meaningful medical term recognised in ICD-10.
    Far better to restore it into general practice.
    The debate leading to SEIDS was charged with getting rid of the term chronic fatigue syndrome, CFS, which was finally recognised as demeaning the illness and those who suffer from it.
    Unfortunately it has become widely used in research studies especially in the USA.
    These studies are generally of very high standard and it is a shame that they are linked to this demeaning term.
    In throwing out CFS the NIH and IOM have unwittingly thrown out the ‘baby with the bath water’.
    My understanding is that the committee jettisoned the combined term CFS/ME without any serious consideration of the term ME.
    If this was so then perhaps the same committee should revisit the debate and reinstate ME as a definitive description of the illness.
    Where clear aetiology of an illness is established then it should be used in preference to ME e.g.. chronic lyme disease, post viral (specified e.g.. Coxsacchie B or EBV) fatigue syndrome.
    This way many mis- or missed diagnoses might be avoided and the pool of ME diagnoses would progressively shrink.
    Malcolm Hooper
     
    Last edited: May 4, 2016
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  19. viggster

    viggster Senior Member

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    He used both "encephalopathy' and 'encephalomyeitis' on the webinar. I know there's history here but I think you may be reading too much into his use of the first term.

    Also, Hooper is conflating Nath and the IOM report, which confuses the issue. Nath did not rename this illness.
     
    Last edited: May 4, 2016
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  20. BurnA

    BurnA Senior Member

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    I think people are sensitive to the name and the correct terminology, and for a good reason. I don't believe Nath has any bad intentions but its a bit like a someone getting your name wrong just after doing a deal with them - it's annoying, it can be appear disrespectful and it leaves you with a bad impression even if its not a big deal in the wider context.


    And, in case you think we can afford to let things slip would you like to see more of this

    Kings College London
     

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