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Dr. Nath talks on the Intramural #MECFS study at the NIH which has thus far found quite a few rare diseases pop up (23 Mar 2019)

Discussion in 'BioMedical ME/CFS News' started by wigglethemouse, Mar 23, 2019.

  1. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    http://simmaronresearch.com/2019/03/nath-intramural-chronic-fatigue-study/

    These two sections caught my eye. The numbers are small but very intriguing
    I've often wondered if many of us have a known rare disease. Rare diseases are so hard to diagnose and the medical profession does not have many diagnosticians checking patients for these despite what we see on TV shows such as "House". Hopefully Nath expands on this in his upcoming NIH Conference presentation
    Not clear if these were filtered out, or part of the study. I would bet that most ME patients have not been tested for the full suite of autoimmune diseases - only the most common ones seem to be tested for...... Could this be why Ritux worked in some people in the Norwegian trials?

    I strongly believe we need ME/CFS literate specialists - or even better Complex Disease specialists who work on patients that other doctors have discarded and are able to check for more autoimmune and rare diseases.
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Not surprised in the least by these numbers. This is by far the most harmful consequence of the dogma of psychosocial MUS, it discourages investigation and amplifies the problem of misdiagnosis. It hurts people with ME. It hurts people with other misdiagnosed conditions who get caught in the wastebasket. It hurts people who could benefit from psychotherapy by clogging their services. It demoralizes people providing those services because they are given an impossible task. It hurts nearly everyone while providing no measurable benefits.

    And that's with a carefully selected group, unlike the diagnostic wastebasket done by psychosocial clinicians. Their numbers must be even worse on that count.
     
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  3. strategist

    strategist Senior Member (Voting Rights)

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    A wastebasket it may be but we still need studies to better understand what is being misdiagnosed and what's wrong with those where no known disease can be identified.
     
  4. wastwater

    wastwater Senior Member (Voting Rights)

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    This is interesting as I found I have a rare genetic disorder Axenfeld rieger syndrome but then found many with ARS seem to have FM ME
    Following FOXC1 I can reach a lot of what ME is supposed to be
    Eg you want heat shock 70 proteins I got that
    B and t yes and lots of other angles now just following that one gene FOXC1

    Maybe they got rid of all there best clues
     
    Last edited: Mar 23, 2019
  5. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Didn't Ron Davis talk about how he could get no funding for the Severely ill project as NIH does not fund that kind of investigation? Does anyone now if the NHS in the UK is set up to do a deep dive on a disease group to gather more information about said disease?

    One thing that may help move your thought forward is the Clinician Coalition of ME/CFS practitioners that Dr. Lucinda Bateman is coordinating in the US. If they can start uncovering the autoimmune and rare disease patients that meet strict ME criteria and share that information by writing case studies it could possibly move the field forward by identifying new subsets that can then be leveraged. That would not cost that much money, mainly the doctors time.
     
    Last edited: Mar 23, 2019
  6. strategist

    strategist Senior Member (Voting Rights)

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    The requirements to enter the study:

    The first step is a pre-screening process, and then a 5-10 day initial phenotyping inpatient visit. I understand that it's at this stage where the previously missed diseases were recognized.
     
  7. Ravn

    Ravn Senior Member (Voting Rights)

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    Same here.
    If Cort reported correctly then these patients who were found to have other conditions had been carefully prescreened by ME experts and met CCC including PEM (Cort said this in the comments). This raises some questions:
    • Were they misdiagnosed and never had ME (despite meeting CCC & PEM)? This would mean PEM is not unique to ME after all, and CCC is not that good at identifying ME.
    • Did they have both ME and another condition, as two separate issues?
    • Did their other condition cause their ME? This could fit with the idea of subgroups such as, for example, an autoimmune subgroup.
    • Did their ME cause them to develop another condition?
     
  8. strategist

    strategist Senior Member (Voting Rights)

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    If true this seems to align with the view that the diagnostic criteria are fairly bad.
     
  9. Trish

    Trish Moderator Staff Member

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    Those with rare conditions may have had ME as well, I guess, but were excluded from the study so their rare condition would not confuse the data.
     
  10. wastwater

    wastwater Senior Member (Voting Rights)

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    I think it may of been that some with a rare condition had within it inherited a tendency towards developing ME and if so that will narrow things down and the pathways be easier to see
    And there maybe many but I wonder if they come to a similar important spot
     
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  11. Milo

    Milo Senior Member (Voting Rights)

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    It goes on to say that diagnosing ME means that the patient enters a black hole where all the symptoms experienced by patients are blamed to ME and therfore undeserving of further investigation into other pathologies. It’s as if diagnosis of ME disabled physicians into looking for more.
     
  12. Forbin

    Forbin Senior Member (Voting Rights)

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    Wait... that can't be right. We have it on the highest authority that...
     
  13. Aroa

    Aroa Established Member (Voting Rights)

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    I wouldn´t exclude the possibility that PEM is unique to ME.

    I presume that current studies may also have a significant percentage of non Me patients. It is difficult to have the right answers if you are mixing patients with several conditions.

    Anyway I look forward to watching Dr. Nath´s talk.

    Hopefully this NIH meeting will give us finally some answers !!!
     
  14. Inara

    Inara Senior Member (Voting Rights)

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    PEM is not unique to ME.
     
  15. Wonko

    Wonko Senior Member (Voting Rights)

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    Various discussions have been had on PEM on here.

    Practically everyone here knows what it is, or at least has significant commonalities with the majority in their experience of it.

    The problem is a definition was never agreed on, there seemed to be too many things which might be part of it, with no one being quite sure if people were talking about the same experience of a specific aspect, i.e. if it was just a language problem or if people were talking about different things.

    Enough of that occured so that no real progress was made in coming up with an operational definition.

    It seems PEM is a very wooly thing.

    Or that's my interpretation of my recollection of the odd times I dipped into the threads.

    It's also unlikely to be ME specific, from memory of posts even over the last week it appears a few other conditions have something that would fit well within the wooly PEM pwME experience.
     
  16. Forbin

    Forbin Senior Member (Voting Rights)

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    I do wonder about the exclusion of all autoimmune disorders, though. I believe Dr. Hanson and others have found similarities in the makeup of the mircobiome between some ME/CFS patients and patients with Crohn's disease and chronic ulcerative colitis, both of which are believed to be autoimmune in nature. It could be that autoimmunity in the gut can either be a consequence or a component of the mechanism of ME.
     
    Last edited: Mar 24, 2019
  17. wingate

    wingate Established Member

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    I would be curious to know more about the rare diseases these patients were determined to have.

    I wonder what kinds of things they looked for aside from the common things that may be ruled out before an ME/CFS diagnosis is made at the doctor's office (and not just in a clinical study).
     
  18. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I wonder how more of us could get access to a specialist diagnostician. If that many of us have other diagnoses, we should have some way to be getting diagnosed. It might reduce morbidity.
     
  19. Alvin

    Alvin Senior Member (Voting Rights)

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    It benefits those who believe their own lies and hubris :emoji_face_palm:
     
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  20. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Interesting, and also perplexing that after screening with the CCC, some who enterd the study have other diseases. More diseases misdiagnosed as ME, or do they have ME plus....?

    I'm with @WillowJ. Where can I see a specialist who could test me as has been done at the NIH? Or at least some of it.

    My symptoms fit the CCC, and the ME-ICC, but I still have often wondered, what if something has been missed that's more readily treatable?

    Sounds like the NIH study will have some interesting and surprising things to tell us.
     
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