• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

Status
Not open for further replies.

Nielk

Senior Member
Messages
6,970
http://www.gordonmedical.com/unravelling-complex-chronic-illness/

This will be the third study organized by GMRCresearching how comprehensive metabolomic analysis can be used to evaluate CFS/ME. This study follows our first study, recently published in the Proceedings of the National Academy of Science, which demonstrated there is a clear metabolomic profile in patients with CFS/ME; and our second North American based CFS/ME study, which has finished enrolling patients and will be completed soon. (see more about Metabolomics research)

This third study will be the first to look at how individual as opposed to population based metabolomics data can be used to evaluate CFS/ME. GMRC’s third CFS/ME research study will be a community-sponsored investigation. The CFS/ME community is a highly motivated group and we will need their support to accomplish our goal of understanding how personal metabolomic data can be used to evaluate CFS/ME.

Members of the CFS/ME community and their advocates can contribute to the success of the study in three main ways:
  1. They can participate in the study by volunteering a blood sample. – PARTICIPATE
  2. They can recruit a person without a diagnosis of CFS/ME to donate a blood sample that will serve as a comparison sample.
  3. Members of the community can make a tax-deductible donation to fund the study. – DONATE
All donations are welcome, and donations to this third metabolomic study will go to sample collection, metabolomic data generation, and development of CFS/ME-specific analysis software.

For a donation of $1500 or more, individuals will receive a personal metabolomic report that will show them how their personal metabolomic profile compares to a healthy population and the overall CFS population. Included in the >500 metabolites in this report will be analysis of sphingomyelin metabolites which were shown to be of interest to the CFS/ME community in our first study. This is the ONLY metabolomic report currently capable of providing data on this critical class of molecules.
 

leela

Senior Member
Messages
3,290
I am personally familiar with GM, and everyone there is a deeply caring, committed professional who really wants to help with the whole array of neuroimmune disease.

So they offer the opportunity to their patients to purchase supplements. So does every practice. This is not unusual.

ETA: regarding the price, this is called Community-Sponsored research for a reason: if NIH actually funded research in any meaningful way, this sort of thing would not be necessary. This is why we have had patients moving across the country and paying out the nose for Ampligen or Ritux. That GM wants to move forward is a good thing, and that many of us cannot afford to participate is a symptom of this whole 35-year tragic saga of denial and disrespect from the majority medical community.
 
Last edited by a moderator:

Nielk

Senior Member
Messages
6,970
Yes, I saw that. I interpreted your original statement as referring to a specific supplement. I see now that you're referring to the entire online supplement store in general. Thanks.
Yes - Sorry. I should have used plural - supplement.
 

Nielk

Senior Member
Messages
6,970
I am personally familiar with GM, and everyone there is a deeply caring, committed professional who really wants to help with the whole array of neuroimmune disease.

So they offer the opportunity to their patients to purchase supplements. So does every practice. This is not unusual.


I think it's important to know if someone is running studies where they will benefit financially from the outcomes.

I'm also very weary of jumping to quick conclusions. So far, all we have is one small study with no replications. All the subjects of the study came from one practitioner - Gordon.

Trust me - I would like to find a bio marker and treatment for myself and the millions of patients worldwide as much as anyone else.

I do have my eyes open though. We have been burned time and time again. I don't think it's right to promise things to this community prematurely.

If the science will hold up - we will all know when it happens.
 
Last edited by a moderator:

RL_sparky

Senior Member
Messages
379
Location
California
I think it's important to know if someone is running studies where they will benefit financially from the outcomes.

GMA is plowing any money they make from these tests into the research. $1,500.00 is a lot of money to spend for a test that still needs replication, though I don't think that will be a problem. A cheaper option might come from OMF in the next few months for those that want to wait.
 

leela

Senior Member
Messages
3,290
I think it's important to know if someone is running studies where they will benefit financially from the outcomes.

The fact that they offer supplements to their patients--with no obligation to buy through them-- has nothing to do with the outcomes.

I'm also very weary of jumping to quick conclusions. So far, all we have is one small study with no replications. All the subjects of the study came from one practitioner - Gordon.
And thi sis an attempt to replicate with a wider population. Maybe it is you who have unknowingly jumped to conclusions?



I do have my eyes open though. We have been burned time and time again. I don't think it's right to promise things to this community prematurely.
No promises have been made. I"m not sure what facts and truth you are referring to here.

If the science will hold up - we will all know when it happens.
Exactly. So maybe this study will make important contributions to that end.
 
Last edited by a moderator:

Nielk

Senior Member
Messages
6,970
Dear @Nielk, the only fact you have posted is that they have a supplement shop. They have not made any promises.
They are offering the opportunity for those who wish to to join their study.
Please reevaluate the value of what you have posted.
did you see my first post? Do you think I shouldn't have posted about their third study? You think it was wrong to state that $1,500 is more than most of us can afford? The fact that he has an online supplement pharmacy should be a hidden fact?
 
Last edited by a moderator:

adreno

PR activist
Messages
4,841
I assume that if you participate in the study, you don't pay for the test. Problem solved?
 

Nielk

Senior Member
Messages
6,970
What makes you think 1500 is steep for a metabolic report ? Do you know where it is available elsewhere cheaper? Do you know the profit margins on it ?

Tks.
I didn't say if it was steep for a metabolic report. I have no idea what their costs are. I'm saying that for patients this is a steep price. How many can afford this? I know I cannot.
 

Sidereal

Senior Member
Messages
4,856
If the science will hold up - we will all know when it happens.

The problem is, we will never know if the science will hold up unless people donate, seeing as there is no NIH funding for this disease. Because of this bizarre situation, research groups have to resort to weird things like soliciting private donations and crowdfunding. So, what choice do they have but to sell stuff and ask for donations? Would you prefer this research doesn't take place? Where would you suggest they get the money to do this research if not from the patients who can afford? Life isn't egalitarian, if you can't afford to take part in the study, then don't take part.
 
Status
Not open for further replies.