OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

[duncan]

@A.B., I agree with your point about the amount of time spirochetal remnants remain in one's body. Regardless, a common objection to positive Bb PCR is the claim that the PCR is merely registering spirochetal debris.

Unfortunately, the largest historical problem with PCR testing is its inability to detect enough DNA in patient serum, at least when it comes to Borrelia.

 

[perrier]

Just wondering if the work of Dr Goldstein and Dr Jay Seastrunk will or are being evaluated.

 

[Ben H]

I would also like to know the answer to this question. There seem to be quite a lot of PWME who ALSO have MCAS, and of those who have ME and MCAS another proportion of us also have EDSIII. I suspect many I have spoken to who have an MCS diagnosis actually have Mast Cell issues.

Will they be looking for this in any way? I guess this may be another subset, or another reaction to a pathogen of some sort - my MCAS seems to be secondary to a whole host of chronic infections found so far.

Good questions @justy. Im not so familiar with MCAS so that will be noted down! Thanks!

@Ben Howell do you know any more about the patient's issue with tryptophan metabolism? What the issue was? How it manifested?

Not anymore than I have already posted I am afraid. This is still part of the ongoing research.

I have been taking 5 HTP (non time release) when needed for sleep for 15 years. It helps with my overall mood too. But my health went into downward spiral 3 years ago. So for me, the tryptophan/serotonin mechanisim is not the cause of my ME nor the reason I still have ME. Many people in the general population suffer from depression, but they don't have ME.

I am grateful to hear about new research, but my preference is to focus it on what treatments will improve the core ME symptoms (IOM report, especially PEM). We need greater collaboration among doctors that have treated severly ill patients (ME or closely related biological dysfunctions) to decipher what the severely ill patient 'big data' means.

I worked with data for 20 years. Having more data is not always helpful. Data must be organized and structured in a way that is meaningful. This is why seasoned health care providers with severely ill "hands-on" experience need to be assembled.

I appreciate this thread and being able to express my opinion. But I can't ignore the knowledge I gained in my career and what I have learned about ME.

Thank you for reading this.

GD

Hi @Groggy Doggy

The idea so far is that as patients we may have different issues (tryptophan metabolism for one patient, Biotin issue for Whitney-as well as many more) but that the underlying cause is the same. The variants may be due to genetics. The talk of of potential biomarker being verified with current study could not be possible unless there was a common finding among all patients.

So your tryptophan pathway may be fine, but others may not be. But it may still be an issue as a downstream consequence. Not a cause of your M.E. No one is saying that, they were just examples of abnormalities (not causes) found in some of the patients so far.

With a disease this complex a big data approach is extremely logical. You cant go in with a hypothesis on something so complex and unknown. Without research, its very hard to have treatments. If you look at the researchers, Physicians involved you can see that OMF and Ron are collaborating with experts in every field, aswell as the front line Physicians. Its a remarkable achievement for something that is still publicly funded.

Hopefully that helps some of your concerns


B

 

[Ben H]

Just wondering if the work of Dr Goldstein and Dr Jay Seastrunk will or are being evaluated.

I am not sure and will pass this on. Dr Goldstein has always interested me!

Thanks!


B

 

[Groggy Doggy]

So your tryptophan pathway may be fine, but others may not be. But it may still be an issue as a downstream consequence B

Yes, I agree

You cant go in with a hypothesis on something so complexed and unknown.
B

I respectfully disagree, everything about ME is not unknown. If someone has spent 10-20 years focusing on a subset and deriving a hypothesis, then their research needs to be analyzed and made a priority to obtain. I thought we were working together?

GD

 

[Ben H]

Yes, I agree



I respectfully disagree, everything about ME is not unknown. If someone has spent 10-20 years focusing on a subset and deriving a hypothesis, then their research needs to be analyzed and made a priority to obtain. I thought we were working together?

GD

I didnt say everything about M.E was unknown, just that so much of it is. Just clarifying

We have information here and there, but its never been brought together (immunology, metabolic, pathogens etc) under one study. Until now. The multisystemic nature of the disease means this is a very logical and sensible way of looking at it.

Im not familiar with anyone who has spent that long on a solid hypothesis, and Ron has read over 8000 papers on M.E/CFS. So other findings and researchers ARE being taken into account, and many of them are working with Ron

Whose research/hypothesis did you specifically have in mind?


B

 

[Groggy Doggy]

Yes, a project manager would be good. We need more funding to be able to hire one. @NIHDirector Need funding!

If I felt better I would love to volunteer and assume the role (no fee). It would be a dream job to contribute in this way.

 

[msf]

Everytime someone talks about finding viruses I feel left out...I have a bacteria, not a virus! It´s quite a lot bigger and therefore should be easier to find!

 

[Groggy Doggy]

Whose research/hypothesis did you specifically have in mind?
B

I sent you a PM

 

[Comet]

and Ron has read over 8000 papers on M.E/CFS. So other findings and researchers ARE being taken into account, and many of them are working with Ron

 

[Gingergrrl]

Good questions @justy. Im not so familiar with MCAS so that will be noted down! Thanks!

Thank you @Ben Howell and it would be great to hear Dr. Davis's findings re: the subgroup of severe patients who have MCAS, severe allergic reactions, or autoimmune antibodies (versus if he is just not finding this at all in the severe patients). Either way, it would be interesting and helpful to know.

 

[Jennifer J]

Hi, Ben. Thank you for your updates and all that you are doing!


Hi, Everyone.

Let's see if I can put a coherent sentence together.

Please check your spam box if you've signed up for the newsletter and haven't received it, or haven't received another one. I checked my spam box today and it was in there. The reason it said was because it was similar to emails in others spam boxes.

Sign up here if you haven't already: http://www.openmedicinefoundation.org/newsletter-sign-up/

Thank you to everyone for your efforts to change things and make it better!

 

[Ben H]

Hi, Ben. Thank you for your updates and all that you are doing!


Hi, Everyone.

Let's see if I can put a coherent sentence together.

Please check your spam box if you've signed up for the newsletter and haven't received it, or haven't received another one. I checked my spam box today and it was in there. The reason it said was because it was similar to emails in others spam boxes.

Sign up here if you haven't already: http://www.openmedicinefoundation.org/newsletter-sign-up/

Thank you to everyone for your efforts to change things and make it better!

Great points and very coherent Jennifer! Nice job!

If anyone is having issues recieving the newsletters despite signing up can you PM me please.

Thanks!


B

 

[Sasha]

Hi @Ben Howell - just wondering if there's any news on the plan to have patients mail in their blood samples for metabolomic analysis?

 

[Ben H]

Hi @Ben Howell - just wondering if there's any news on the plan to have patients mail in their blood samples for metabolomic analysis?

Hi @Sasha

I spoke to Laurel recently and they are getting controls to run the test samples before bringing it to the public. These test samples should hopefully be collected in the new year.

As soon as I know anymore, and certainly when it goes public will let you know. Its a little longer wait than anticipated but for robustness sake is a good thing.


B

 

[Sasha]

Hi @Sasha

I spoke to Laurel recently and they are getting controls to run the test samples before bringing it to the public. These test samples should hopefully be collected in the new year.

As soon as I know anymore, and certainly when it goes public will let you know. Its a little longer wait than anticipated but for robustness sake is a good thing.


B

Thanks, Ben. If I could take that inch and make it a mile, will the controls be deconditioned? I think a weakness of the Severely Ill study is that, as far as I know, the controls weren't deconditioned (I think they were the employees of Metabolon!). For any severely ill group (and that's going to include a load of us in this mail study), controlling for deconditioning will be important. Not much seems to be known about the biology of deconditioning and so it's important to rule out its effects.

Do you know what data they're looking to collect? Any opportunity for us patients to contribute ideas, or to pilot the questionnaires before they go out?

 

[Ben H]

Thanks, Ben. If I could take that inch and make it a mile, will the controls be deconditioned? I think a weakness of the Severely Ill study is that, as far as I know, the controls weren't deconditioned (I think they were the employees of Metabolon!). For any severely ill group (and that's going to include a load of us in this mail study), controlling for deconditioning will be important. Not much seems to be known about the biology of deconditioning and so it's important to rule out its effects.

Do you know what data they're looking to collect? Any opportunity for us patients to contribute ideas, or to pilot the questionnaires before they go out?

Hi @Sasha

I believe the controls will be standard, healthy controls for this initial pre test run.

Prof. Davis is obviously aware for the need to compare against different subsets, but with a limited pot of money to go round, this will be a future study (as has already been mentioned).

I don't see the lack of deconditioned patients a 'weakness' of the Severely Ill Big Data study, I see it as a logical course i.e compare these metabolites (and everything else) against 'healthy' people. See what the results are. Then see if these results are unique to ME/CFS by comparing against other disease states, and deconditioned people. I see that as a much more logical way than comparing metabolites with other diseases straight away.

The issue is that OMF is not funded by anyone except donations-there is only so much that can be done to start with. NIH needs to step up and fund, and then many many types of studies, such as these mentioned can be run, a lot quicker.


B

 

[Sasha]

Hi @Sasha

I believe the controls will be standard, healthy controls for this initial pre test run.

Prof. Davis is obviously aware for the need to compare against different subsets, but with a limited pot of money to go round, this will be a future study (as has already been mentioned).

Thanks, Ben - sorry, I seem to have missed or forgotten the news about future controls.

 

[Ben H]

Thanks, Ben - sorry, I seem to have missed or forgotten the news about future controls.

OMF have so much going on and planned, its pretty incredible. We are in extremely good hands!


B

 

[Nielk]

Hi @Sasha

I believe the controls will be standard, healthy controls for this initial pre test run.

Prof. Davis is obviously aware for the need to compare against different subsets, but with a limited pot of money to go round, this will be a future study (as has already been mentioned).

I don't see the lack of deconditioned patients a 'weakness' of the Severely Ill Big Data study, I see it as a logical course i.e compare these metabolites (and everything else) against 'healthy' people. See what the results are. Then see if these results are unique to ME/CFS by comparing against other disease states, and deconditioned people. I see that as a much more logical way than comparing metabolites with other diseases straight away.

The issue is that OMF is not funded by anyone except donations-there is only so much that can be done to start with. NIH needs to step up and fund, and then many many types of studies, such as these mentioned can be run, a lot quicker.


B

Hi @Ben Howell

Didn't the Naviaux study compare to normal controls?