Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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ME/CFS Collaborative Research Centers & Data Management Center Announcements

Discussion in 'General ME/CFS News' started by AndyPR, Sep 27, 2017.

  1. Wally

    Wally Senior Member

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    Please note that a discussion started in this thread, re patient criteria selection to be used in the research projects selected for funding, is also being discussed on another thread* here on the Forum.

    *The new thread is titled "
    "IOM Criteria to Be used in Research for NIH Center of Excellence"
    and can still be found in the general public section of the Forum at this link -

    http://forums.phoenixrising.me/inde...-research-for-nih-center-of-excellence.54762/

    The specific replies in this thread that began the discussion about patient selection research criteria and the I.O.M. Report are located (above) in Reply Nos. 261, 262 -264, 267, 270 - 279, 281 - 298, and 300.
     
  2. greeneagledown

    greeneagledown Senior Member

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    @Jonathan Edwards -- I don't believe we ever got your opinion on the three projects that got funded. Any thoughts? Anything that looks particularly promising? Anything that looks like a waste of time?
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Maureen Hansen has a deep understanding of the many aspects of ME. She is also a modest and thorough scientist with her own ideas. She has been doing this for a good while and has reported her work responsibly. That might sound like a rather lacklustre 'solid' sort of appraisal but I actually challenge anyone to do better. This is a very hard problem and it needs her sort of care of approach. I think she absolutely deserves continued funding and recognition that she is a leading investigator. She may well turn something up unexpected and important because she has an eye for detail and knows how to interpret it.

    Ian Lipkin's group, including Mady Hornig in particular, have also shown thoroughness and deep understanding of the complexity of the problem. They have published significant banks of data, including important negative findings. They are committed to a realistic objective and again I think they full deserve continue funding and recognition as a key centre.

    Dr Unutmaz's group I do not know. They must have put in an impressive proposal to be up there in the top three choices. I am not personally convinced that we need another major group looking at microbiome at this point but I have not seen the actual proposal.

    I guess what I would like to see along these immunological studies is some serious brain imaging - maybe the sort of thing James Baraniuk has been doing.
     
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  4. searcher

    searcher

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    SF Bay Area

    Maureen Hanson's group has funding for a brain imagining project but I don't think the other two do.

    From Cornell's press release:
     
    Last edited: Oct 4, 2017
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  5. duncan

    duncan Senior Member

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    I believe Baraniuk has been doing fMRIs.
     
    MEMum likes this.
  6. greeneagledown

    greeneagledown Senior Member

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    Don't you tend to think that what is going on in the brain is effect, not cause? I'm skeptical of the claim by some that this is primarily a neurological disease and that the brain is driving symptoms. It seems much more plausible that what is going on in the brain is an effect of some system-wide immune and/or metabolic disturbance. Brain imaging is interesting but don't you agree it probably is not going to get at the core of this disease? Plus the fancy imaging studies that actually find big differences aren't widely available for clinical use.
     
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  7. neweimear

    neweimear Senior Member

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    I agree with you. Alot of us became ill after a flu or viral infection, our immune systems became dysregulated and there the problems began. The only drugs we have, rituximab, ampligen and cyclophosphamide all act on the immune system and show benefit. I am no scientist but I know my own body and I so believe my immune system is gone bananas, constant painful lymph nodes. Swollen lymph nodes were one of my first symptoms with my illness, I actually thought I had lymphoma initially, feeling unwell, swollen lymph nodes, night sweats etc...So I think focusing on immune system is key to solving our illness.
     
    Last edited: Oct 4, 2017
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  8. BurnA

    BurnA Senior Member

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    Baraniuk is on the East Coast, that could be a problem ;)
     
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  9. BurnA

    BurnA Senior Member

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    If I can ask you another question:
    Why do you think its hard ?
    The problem I assume is there are no obvious or consistent biomarkers -
    Becasue we dont have the technology, not enough research or a lack of understanding / knowldge of a key component of ME ?
     
  10. Barry53

    Barry53 Senior Member

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    But until proof is obtained one way or the other that is just supposition. And if the search for an answer happens to prove to the negative, that is still progress because then subsequent efforts can be directed more effectively. The whole point of this kind of research is to get down to the science, and not keep supposing things.

    Investigating if there is a problem in the brain does not infer anything psychological. For example, no-one seriously suggests that alzheimer's is all in the head, even though it is a physical disease of the brain. We just have to find answers.
     
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  11. Groggy Doggy

    Groggy Doggy Senior Member

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    I agree that in my case the brain is a symptom, not the cause. And if study meds/interventions can show improvements in before and after images, then I fully support this approach. Patient self reports are unreliable.
     
  12. BurnA

    BurnA Senior Member

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    This tweet looks promising.

     
  13. Alvin2

    Alvin2 If humans were rational...

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    Can you elaborate, i had an MRI and brain spect done, the spect found nothing but multiple white matter lesions was found on the MRI, though my images were graded by a staff technician without an ME/CFS specialty.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think there is an important difference between a cause of a disease and a core of a disease.

    We have reasonably good evidence for ME being caused by a whole range of events and in many cases we think these events are long since gone by the time the illness is established. Understanding what at least some of these causes are may be very useful in order to understand mechanisms but I don't think they are the 'core' of the illness.

    Most of us work on the model that all these different causal events can feed in to some common self-perpetuating process that can be identified by the core symptoms of ME. That is what I would call the core of ME. This is very like diabetes or rheumatoid arthritis. Many events can precipitate inadequate insulin production, which is the core of diabetes. Many initial B cell events can tip the immune system into an autoimmune cascade like RA. We manage these two diseases without anything much more than hypothesising what we think these initial events are. They do not matter because we are not in the business of preventing them happening and may never be.

    My thinking about ME is very much led by my work on RA. When I got interested in RA we knew there were autoantibodies, which looked as if they might be causing things, at least on an ongoing basis in established disease. We also had symptoms and signs like pain and swelling. We had data on histology but in old fashioned language that did not tell us how to interpret in terms of antibodies causing inflammation causing symptoms. The critical work consisted of working out how the causal steps linked together in the target tissues of the joint and lung etc. We identified a very specific pathway and from that we could work back to explain why TNF inhibitors worked so well and why rituximab should also work well.

    Multiple sclerosis may be an even closer analogy to ME. The causes of MS consist of a combination of genes and some random event in the immune system like in RA. The genes you are born with so you cannot do anything about them. The random event is long gone. You cannot even find any autoantibodies in the blood, although B cells in the blood are very likely causing all the problems of loss of mobility and thinking functions indirectly. Making sense of MS has depended again on piecing together how causal pathways mediate the core pathology, which in this case is central nervous system demyelination.

    What I think I am saying is that we have primary causes and then intermediary events that are the effects of the primary causes but the direct causes of symptoms. Those intermediary events tend to be the defining core for illnesses.

    The million dollar question is then whether the crucial intermediary events, that are not occurring in people with other illnesses, are in the brain or out in the muscles or blood vessels. I work on the basis that if you are pretty sure at least some of the events are in one place you go for that rather than going for places which might or might not be sites of core events. Brain fog, sensitivity to light and sound and sleep disturbance all seem to me to be things that must be arising in the brain. I suspect orthostatic hypotension is most likely to be controlled in the back of the brain in the hypothalamic/pituitary area. The same intermediary events, maybe involving mitochondria, might be going on both in brain and muscles, and that would be a neat way to explain everything in one go, but so far there is no compelling reason to say there must be things going wrong in muscle itself. If any significant metabolic change was happening in muscle it would have shown up on MR spectroscopy. David Jones is a muscle expert familiar with MR spectroscopy who has worked with Julia Newton. If there was really something abnormal in the metabolism there I think it would have been reported by now.

    So those are my reasons for making sure people look at brain. I have not seen these applications as such and it may well be that Maureen Hanson's group includes brain studies and that James Baraniuk is involved either directly or indirectly. I would be surprised if not in a way because they are both well aware of each other's work and are both very open collaborative people.
     
  15. dreampop

    dreampop Senior Member

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    I agree I wish the brain would be looked at in more detail. I imagine it's difficult, though I remember hearing Fluge & Mella had brain and/or nervous tissue they were looking at. Also iirc the Japanese group is in the process of replicating their neuroinflammation study.
     
  16. lansbergen

    lansbergen Senior Member

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    What if the problem there is less good functioning euromuscularjunction during flares?
     
  17. greeneagledown

    greeneagledown Senior Member

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    Does this mean you don't think it's likely that there is some sort of important metabolic disturbance going on somewhere in the body in CFS?
     
    Last edited: Oct 5, 2017
  18. user9876

    user9876 Senior Member

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    I wonder if it is better to talk of triggers rather than causes. Then there is the core of the illness where changes in certain systems can cause a whole range of symptoms and signs. In some cases, we may see such symptoms such as brain fog these may be caused by different mechanisms such as lack of blood delivery, issues with energy production cycles etc; these in turn may be caused by other things (antibodies?).

    I thought some of the metaboic studies suggest that there is something happening in the energy production cycles but that doesn't mean that something is structurally wrong it could mean signals are causing the wrong thing to happen. It would be interesting to know how subtle/small a change in one process could cause a cascade of symptoms yet not be picked up using certain detection/scanning techniques.

    I do think it is interesting to think through different chains of events/cycles that could be effected and then wonder what evidence would you see if that was the case. Of course not having a clue about biology doesn't help my reasoning.
     
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  19. greeneagledown

    greeneagledown Senior Member

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    I hope so! I thought we were finally getting somewhere with these metabolism studies :(
     
  20. greeneagledown

    greeneagledown Senior Member

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    also probably 3 more posts until we get screamed at for going slightly off topic
     

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