I signed up for the biomarker study. It looks like they have options for drug trials for POTS, migraine, and MCAS, but not ME/CFS as far as I can tell.
Last edited:
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
I'm not sure. For the drug trials it says must be physically able to travel to Metrodora Institute. I sent an email and will let you know if they respond.
Utsikt
Senior Member (Voting Rights)
The ISM & MCAS protocol:
https://clinicaltrials.gov/study/NCT04655118
https://clinicaltrials.gov/study/NCT04655118
Utsikt
Senior Member (Voting Rights)
This might be the POTS trial:
https://www.medifind.com/articles/clinical-trial/529149000
IgPro20 appears to be a kind of Immunoglobulin, with the alternative name Hizentra.
https://www.medifind.com/articles/clinical-trial/529149000
IgPro20 appears to be a kind of Immunoglobulin, with the alternative name Hizentra.
Utsikt
Senior Member (Voting Rights)
This might be the Dysport Migraine trial:
https://www.medstarhealth.org/blog/dysport-migraine-studies
Dysport is similar to Botox.
https://www.medstarhealth.org/blog/dysport-migraine-studies
Dysport is similar to Botox.
Ah, so I guess Metrodora is only one of many locations doing these drug trials. Lots of other countries for this one.
Utsikt
Senior Member (Voting Rights)
Yeah, it seems like all of the pharma run trials covers many locations. They probably need it to get enough participants.
Just seen a link to this from SolveME fb: Facebook
MELO Study — Metrodora Institute
It says the goal is:
I'm having a look through it to see if you can participate internationally - it says it involves a swab at home
but also it is that question of security re data, including if it is sending a swab etc and what we might need to think about. It answers this in the FAQs as:
There is also a question on the fb comments about whether it is sensible that they are using people self-identifying as diagnosed with ME/CFS or LC
My brain isn't that up for thinking these ones through - could be an interesting study to discuss?
MELO Study — Metrodora Institute
It says the goal is:
I'm having a look through it to see if you can participate internationally - it says it involves a swab at home
but also it is that question of security re data, including if it is sending a swab etc and what we might need to think about. It answers this in the FAQs as:
There is also a question on the fb comments about whether it is sensible that they are using people self-identifying as diagnosed with ME/CFS or LC
My brain isn't that up for thinking these ones through - could be an interesting study to discuss?
hotblack
Senior Member (Voting Rights)
This information has already been posted but it’s relevant to this thread and a bit fragmented when Imwas searching. So to bring it together..
A Press Release from PrecisionLife says First ever confirmation of long COVID genetic associations.
This is going to be one of the topics discussed at the AfME “Genetics Centre of Excellence: update on recent research“ presentation discussed here.
The results seem to already be covered in the paper discussed in this thread
Reproducibility of Genetic Risk Factors Identified for Long COVID using Combinatorial Analysis Across US and UK Patient Cohorts.., 2025, Sardell et al
A Press Release from PrecisionLife says First ever confirmation of long COVID genetic associations.
This is going to be one of the topics discussed at the AfME “Genetics Centre of Excellence: update on recent research“ presentation discussed here.
The results seem to already be covered in the paper discussed in this thread
Reproducibility of Genetic Risk Factors Identified for Long COVID using Combinatorial Analysis Across US and UK Patient Cohorts.., 2025, Sardell et al
Bio-IT World: 'A Practical Precision Medicine Approach to Complex Chronic Diseases'
----
'Based on unpublished data, the “strong expectation” of investigators is that all nine of the genes thought to be common to ME/CFS and long COVID will be a reproducible finding. The All of Us dataset used in the latest study had under 500 patients while an additional 1,500 patients populated the most recently released cohort of data, Gardner says, which will also permit a more detailed examination of reproducibility in general.
This soon-to-publish confirmatory study will be particularly significant for the ME/CFS community, which has long struggled to have their disease taken seriously by many health practitioners. “This is putting [ME/CFS] on a footing with and actually connecting it to the research going on with long COVID,” he says.'
----
'PrecisionLife’s Mechanostic test for ME/CFS captures 199 unique single nucleotide polymorphisms (SNPs) and can predict disease “in the ballpark” (odds ratio of 4.5) with BRCA mutations (odds ratio of 5 to 7.5) for breast cancer, which is “unexpected in a disease with no prior genetic associations.”'
----
'The combinatorial analytics approach was first developed in 2017, and one early target was amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, says Gardner. Notably, PrecisionLife identified 24 key genes linked to “actively protective biology,” including the gene responsible for removing the neurotoxin homocysteine. This partially underpins last fall’s market approval in Japan of mecobalamin, a high-dose form of B-12 found to significantly slow disease progression, for pharmaceutical company Eisai.'
----
'A series of clinical studies are planned for 1,000 patients, half with ME and half with long COVID, says Gardner. One aim is to evaluate the diagnostic accuracy of the Mechanostic tests and their ability to identify people at high genetic risk of disease development. Participants are being given results indicating their specific disease risk signatures and therefore the symptoms they are most likely to experience.
Another more ambitious goal is to search for repurposing treatments for ME and long COVID as quickly and cost effectively as possible, Gardner says. Participants are patients from the main Mechanostics trial with specific mechanisms driving their disease and a safe, well-tolerated generic treatment already identified.'
----
'The company has extensively studied endometriosis, adenomyosis and related women’s health disorders where, again, several of the same genes show up—particularly those associated with the debilitating pain patients tend to experience.'
----
'Based on unpublished data, the “strong expectation” of investigators is that all nine of the genes thought to be common to ME/CFS and long COVID will be a reproducible finding. The All of Us dataset used in the latest study had under 500 patients while an additional 1,500 patients populated the most recently released cohort of data, Gardner says, which will also permit a more detailed examination of reproducibility in general.
This soon-to-publish confirmatory study will be particularly significant for the ME/CFS community, which has long struggled to have their disease taken seriously by many health practitioners. “This is putting [ME/CFS] on a footing with and actually connecting it to the research going on with long COVID,” he says.'
----
'PrecisionLife’s Mechanostic test for ME/CFS captures 199 unique single nucleotide polymorphisms (SNPs) and can predict disease “in the ballpark” (odds ratio of 4.5) with BRCA mutations (odds ratio of 5 to 7.5) for breast cancer, which is “unexpected in a disease with no prior genetic associations.”'
----
'The combinatorial analytics approach was first developed in 2017, and one early target was amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, says Gardner. Notably, PrecisionLife identified 24 key genes linked to “actively protective biology,” including the gene responsible for removing the neurotoxin homocysteine. This partially underpins last fall’s market approval in Japan of mecobalamin, a high-dose form of B-12 found to significantly slow disease progression, for pharmaceutical company Eisai.'
----
'A series of clinical studies are planned for 1,000 patients, half with ME and half with long COVID, says Gardner. One aim is to evaluate the diagnostic accuracy of the Mechanostic tests and their ability to identify people at high genetic risk of disease development. Participants are being given results indicating their specific disease risk signatures and therefore the symptoms they are most likely to experience.
Another more ambitious goal is to search for repurposing treatments for ME and long COVID as quickly and cost effectively as possible, Gardner says. Participants are patients from the main Mechanostics trial with specific mechanisms driving their disease and a safe, well-tolerated generic treatment already identified.'
----
'The company has extensively studied endometriosis, adenomyosis and related women’s health disorders where, again, several of the same genes show up—particularly those associated with the debilitating pain patients tend to experience.'
Also from this article:
'The LOCOME and MELO studies “are feeding results and information to each other and accelerating the process,” he says. That means the Mechanostic test and repurposing studies should all be completed within two years—almost twice as fast as originally predicted.'
Precisionlife talk a big game, and I really hope they can deliver.
I wonder if they will say what these repurposed drugs are after DecodeME and LOCOME are published.
It would be very good to have something that moves the needle a bit while we wait for the heavy hitting drugs, so its good to hear the trials are going faster than planned.
It would be very good to have something that moves the needle a bit while we wait for the heavy hitting drugs, so its good to hear the trials are going faster than planned.