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

R

rachel76

Established Member
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.
 
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.
 
In 2019, Dr. Kenny DeMeirleir was issued a world patent on a new CFIDS discovery, the increase of asparaginyl beta-hydroxylase (ASPH) in the cells of patients [1].

https://www.ncf-net.org/pdf/NCFAppealToPatientComm.pdf
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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"?
 
The NCF feels that it is imperative to pursue this research because we have identified a specific protein that may serve as a critical link to a radiation exposure-induced oncogenic cancer process. We do anticipate collaborative assistance between Dr. Wands’ research group at Brown University and Dr. Mothersill’s group at McMaster University. In a Zoom meeting with Wand, the NCF learned that pancreatic cancer patients develop a “Chronic Fatigue Syndrome-like illness” several years before the full-blown development of pancreatic cancer.
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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.
 
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.
 
Esther12 said:
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.
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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.
 
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Trish said:
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.
Click to expand...

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.
 
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...
 
Esther12 said:
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.
Click to expand...

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 . . .
 
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.
 
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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?
 
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