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Dr. Kenny DeMeirleir was issued a world patent on a new CFIDS discovery, the increase of asparaginyl beta-hydroxylase (ASPH)

Discussion in 'ME/CFS research news' started by rachel76, Dec 13, 2020.

  1. rachel76

    rachel76 Established Member

    Messages:
    18
    There is an interesting bit of news on the NCF page.

    https://www.ncf-net.org/

    The link from December leads to an article about a patent issued by Dr Kenny DeMeirleir for the increase of asparaginyl beta-hydroxylase (ASPH) in the cells of patients. It's in the link title
    " NCF appeals to patient community to raise additional $ 40K for new research based on patent findings".

    I am a member of a number of CFS/ME groups on facebook and not one has mentioned this. I wonder if this is another subset of ME patients, as separate to the spinal subset, Erlos Danlos subset and severe MCAS subset.
     
    leokitten, Woolie, sebaaa and 5 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,391
    I've no idea on the specifics of this but I think DeMeirleir is one of those names that occasionally pops up with some exciting claim or other, but nothing ever comes of it. Maybe he's also got a history of some dodgy over-selling of treatments... but I can get names mixed up. Patents can be awarded for pretty speculative things, so I wouldn't get excited.
     
  3. Forbin

    Forbin Senior Member (Voting Rights)

    Messages:
    1,582
    Location:
    USA
    I assume this is referring to the discovery of increased ASPH in the cells of patients, but can you patent a discovery of this kind? You could probably patent a unique test for ASPH, or a treatment - but can you patent a "finding"?
     
  4. Andy

    Andy Committee Member

    Messages:
    20,365
    Location:
    Hampshire, UK
    Given that a symptom of cancer can be fatigue, I'll wait until I see more detail of that “Chronic Fatigue Syndrome-like illness” before I think this has any connection to ME at all.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    12,437
    Location:
    London, UK
    This does not look like meaningful science. It does not even say what research is to be done. If is all on a secret commercial basis I see no reason why patients should expect to need to contribute.
     
  6. Trish

    Trish Moderator Staff Member

    Messages:
    48,654
    Location:
    UK
    I remembered we'd had some information previously about some very dubious research funded by this organisation on radiation and a supposed connection to CFIDS/ME/CFS.
    https://www.s4me.info/threads/radia...d-by-the-national-cfids-foundation-2019.9608/

    Here's a link to their website. The seem to be a small organisation run by volunteers that raises funds for research but can't tell what is good research and what isn't.
    https://www.ncf-net.org/index.html

    I certainly won't be donating to this. There's no detail about what the research involves. And anyone who patents a hypothesis about a cause of disease is not someone I would trust with my money. I had no idea it was even possible to patent something like this.
     
  7. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    10,417
    Location:
    Germany
    Nope, it's him. He holds lots of patents for various tests and treatments, and is associated with various companies which supply each other and refer patients to each other. Last time I looked into it (quite a while ago) he referred people to R.E.D Laboratories which he or his wife had an interest in for expensive tests, then sent them off to buy expensive pills from a company he also has ties to. I think getting a bank loan would be a more appropriate way of financing this latest venture.
     
    Last edited: Dec 13, 2020
    Nixxy, leokitten, Sarah94 and 24 others like this.
  8. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    10,417
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    Germany
  9. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    2,378
    From memory - I noticed James Baraniuk patented a leaky brain junction hypothesis/drugs which should reduce that, a few years ago - like you I was surprised. I assume that where you have developed a significant evidence base (doesn't apply here) then you can patent a discovery e.g. I think genes have been patented --- not something I know much about - but yes controversial.
     
    Forbin, alktipping and merylg like this.
  10. Hubris

    Hubris Senior Member (Voting Rights)

    Messages:
    259
    Yeah KDM is interesting guy - until very recently he used to run LTT tests for lyme, which would come up positive in 90% of patients and proceeded to prescribe heavy abx regimens to everyone (you can imagine how that went) and claim ME/CFS was actually lyme disease. I've also seen the tests from a couple of patients i know that went to see him - cytokines with absurd values (we're talking 100x over the limit) but when you test them in other labs they come out normal...
     
  11. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    7,565
    I put Dr. Dietrich Klinghardt and DeMeirlier in the same category. They always seem to be discovering a 'major piece of the puzzle' every few years from Lyme, Autism, CFS . . .
     
    leokitten, Michelle, Milo and 6 others like this.
  12. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    7,565
    Didn't DeMeirlier promote Ampligen in his book years ago but didn't disclose that he was receiving money for every patient he put on the drug from the pharmaceutical manufacturing company that makes the drug?
     
    leokitten, alktipping, janice and 3 others like this.
  13. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    866
    Does anyone else remember when Dr. Kenny DeMeirleir was diagnosing most ME patients as having Chronic Lyme Disease and prescribing long term antibiotics?
     
    Hoopoe, leokitten, TigerLilea and 3 others like this.
  14. Jim001

    Jim001 Established Member (Voting Rights)

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    53
    I often view subset findings as simply a matter of having sampled too far downstream from the core disease mechanism. We are a heterogeneous group when you take all of our symptoms / phenotype into consideration, and therefore can be grouped accordingly. But we all have fatigue, and post-exertional malaise, and once that core mechanism is hit upon and measured I suspect we will find that we're all one.
     
    Last edited: Dec 13, 2020
    Helene, leokitten, janice and 2 others like this.
  15. Nixxy

    Nixxy Established Member

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    Location:
    Belgium
    yes, he’s very well known for that still. I’m from the same country as him & saw him once. He’s mostly known for being expensive.
     
    Michelle, Helene, Trish and 1 other person like this.
  16. leokitten

    leokitten Senior Member (Voting Rights)

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    Almost all treatments and procedures do not give benefit in ME, so I think some clinicians feel they need to have new treatments and procedures that get their patients coming back for more visits the doctor?
     
    Last edited: Dec 28, 2020
    obeat, Nixxy and Michelle like this.
  17. cfsandmore

    cfsandmore Senior Member (Voting Rights)

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    Location:
    USA
    Trish likes this.

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