Research news from Bhupesh Prusty

Discussion in 'ME/CFS research news' started by Sarah94, Feb 1, 2020.

  1. Mij

    Mij Senior Member (Voting Rights)

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    I agree and it's not like he's asking for donations or putting a spin on it. He comes across as very genuine and kind.
     
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  2. JemPD

    JemPD Senior Member (Voting Rights)

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    thats fine, but intent doesnt change the end result, if you trap someone hand in a car door by accident, the fact that it was an accident doesnt stop the persons fingers being crushed.

    I'm sure he is, & i am very grateful for his efforts. I just wish he'd allow that kindness to extend to 'best not give teasers until i'm ready to explain it all, because leaving despertae people hanging for months, is cruel'. And 'I'd better not hype it up to be a biomarker unless i'm absolutely certain beyond all doubt, because raising hopes that turn out not to be fulfilled is a form of torture for people who are suffering'.

    I'm not saying he is thinking this - i obviously dont know what he's thinking but i can imagine the intense desire to help people you care about, coupled with excitment about your own discoveries, can loead to thinking things such as 'i'll give them a little snippet just to encourage them, to let them know that there is hope & that there's some big news coming'.

    Its a very human thing to do when you care, & it might seem kind & caring & encouraging...... but it just reveals that they have no idea what its like to have been on the receiving end of such things... for decades, ovber & over & over again, with none of it ever coming to fruition or turning out to be real. No actual answers.

    Dashed hopes is one of the cruellest, most distressing things when it happens repeatedly over years, it messes with your head & your heart.

    I just wish they would all stop doing it. As i said before - teaser posts are utterly inappropriate in the context. And if English isnt your first language, then be careful & get someone whos 1st language is english, to check it first. Just please, have a care for the msg you're sending

    Edit: i may be not being very gracious/patient, i'm sure he's doing his best, but i am at the end of my rope.
     
    Last edited: Mar 31, 2023
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  3. Mij

    Mij Senior Member (Voting Rights)

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  4. dave30th

    dave30th Senior Member (Voting Rights)

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    he has?
     
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  5. Sid

    Sid Senior Member (Voting Rights)

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  6. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  7. belbyr

    belbyr Established Member (Voting Rights)

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    Would endothelial cell issues be considered 'upstream' of micro clots?
     
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  8. John Mac

    John Mac Senior Member (Voting Rights)

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    See the first post in this thread. Turned out to be nothing.
     
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  9. Mij

    Mij Senior Member (Voting Rights)

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    "Today we also restarted our quest to scan almost the entire human body for localizing potential sites for viral infection, which might be a source of trigger for ME/CFS. In coming months we will test biopsies from most of the human body parts including the entire brain".

    This is what I was concerned about, possibly making connections with viral infections and the hypercoagulation state theory.


    This is what David Berg was going on about 23 years ago. From one of his Townhalls:

    [David] I trust that the combined information from last week and this week
    makes sense and is logical. The coag Paradigm Shift is that we should now
    treat patients with fibrin deposition as we treat patients who have had a
    blood clot. The new protocol on our web site (www.hemex.com) [which will be
    modified tomorrow], should help most CFIDS patients get back to almost
    complete health for under $3000, including lab testing, TF(transfer factor), antibiotics and
    physician charges. There will always be the coag protein defect in the
    patients, but once the infection is treated completely, then the protein
    defect can be monitored over time. When a relapse occurs, use heparin to
    control the infection quickly before becoming a CFIDS patients again.
    Remember, the longer one has been ill, the longer it may take to get rid of
    the HHV6.

    I can't believe this made sense to me over 20 years ago. Taking TF and Imunovir changed the course of my illness and made me worse, permanently.
     
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  10. JemPD

    JemPD Senior Member (Voting Rights)

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    so sorry to hear that Mij, how awful, it must be hard watching it being raised again
     
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  11. Mij

    Mij Senior Member (Voting Rights)

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    @JemPD

    Thanks. I'm past it really but I'm concerned for others who are desperate.
     
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  12. belbyr

    belbyr Established Member (Voting Rights)

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    I wonder if he will have something that collaborates this:

    Screenshot 2023-04-02 at 5.18.17 PM.png
     
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  13. V.R.T.

    V.R.T. Senior Member (Voting Rights)

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    This had better actually be something otherwise it's absolutely abhorrent to play with people's hopes this way. People like me can't cope with the rollercoaster of self promotion and let down. we need honesty not marketing
     
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  14. Mij

    Mij Senior Member (Voting Rights)

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    "We will announce a biomarker for #MECFS and #LongCovid very soon. A very interesting piece of the puzzle to unfold in coming weeks".

    A biomarker for both.

    Prof Akiko Iwasaki in the above tweet says: "Low cortisol levels were the strongest predictors for both defining Long Covid status and disease severity".

    This has not been shown to be the case in pwME.
     
    Last edited: Apr 3, 2023
  15. belbyr

    belbyr Established Member (Voting Rights)

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    I direct messaged Prusty on twitter with the above screen shot from Iwasaki and asked if his biomarker collaborates any of her findings...

    He just replied back saying, "Some of it."
     
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  16. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Given his prior work and the fact that he specifically referenced "our paper from 2020" (presumably this one), that would cover point #4.

    That abstract concluded —

    Some body quotes from that paper —

    Unlikely to have included #2 in this new work but possible. I think cortisol (#7) is irrelevant or a red herring.

    If it's borne out that this is a valid biomarker for mito fission (?? specific miRNA ± supported by dUTPase/Abs ± some other immune/metabolic features as above), then by extension I guess point #1 would be inherently replicated also.

    ---
    Key references in the above body quotes are —
    HHV-6 encoded small non-coding RNAs define an intermediate and early stage in viral reactivation (2018)
    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome (2016)
     
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  17. Madbeggar

    Madbeggar Established Member (Voting Rights)

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    I think you mean corroborates, not collaborates.
    Verb: confirm or give support to (a statement, theory, or finding).
    3rd person present: corroborates; past tense: corroborated; past participle: corroborated; gerund or present participle: corroborating
    "the witness had corroborated the boy's account of the attack"
     
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  18. belbyr

    belbyr Established Member (Voting Rights)

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    Either variation of the word works, at least over here in the US. I'm just glad to see 2 major (but independent) researchers see something similar. Now I'm starting to think of Dr Chia and his EBV claims.
     
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  19. Kitty

    Kitty Senior Member (Voting Rights)

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    Is it me, or are parts of that list from Prof Iwasaki a bit underwhelming?

    Would it be very surprising if 94% of patients who said they were ill turned out to be ill, or if immunisation increased antibody responses, or if herpesviruses reactivated during illness, or if no increased autoantibodies were observed, or if low cortisol produced symptoms or exacerbated existing ones?

    It might be that there are specific meanings in there that I, as a non-medic, haven't understood. I hope so, because it would be great if they had found something new and interesting.
     
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  20. Hutan

    Hutan Moderator Staff Member

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    I had the same thought. The 94% one is particularly odd.

    "Patient Reported Outcomes alone are sufficient to identify long COVID patients with 94% accuracy."

    That assumes that there is a method to identify long COVID patients that has 100% accuracy. Else, how you could you possibly know how accurate the Patient Reported Outcomes are? Stuff like that erodes confidence pretty quickly.
     
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