Science for ME Q&A with Dr Montoya, 16th January 2018 question collection thread

So, for a while now S4ME have been figuring out the technical details in order to do a Q&A session with Dr Jose Montoya and I'm pleased to say that we've found a solution.

We initially were hoping to do it as a live event, and this would be our hope for future events, but, on this occasion, we'll be making a video call with Dr Montoya, recording it, doing a little bit of editing, and then putting up on our YouTube channel.

But we will need questions to ask him, which is where you all come in. Just as we did with the UK ME/CFS Biobank recently, we want to know what you want to ask him, so that we can then ask them on your behalf.

So, we want you to post your questions here - we'll be keeping the thread open until the end of this year, then we'll collate them ready for the big event.

Obviously, we can't guarantee any questions will be answered, and, given we have limited time, we may well cut back on the number of questions that we are able to ask.

So, get posting.

If you'd like a bit of background material here is his Stanford profile, and his page on MEpedia.

Finally, and importantly, many thanks to the S4ME member who put us in touch with Dr Montoya's assistant.

 

Questions, as at 1st Jan, have been gathered into one post here, https://www.s4me.info/index.php?thr...toya-16th-january-2018.1383/page-2#post-29945

 

At the recent CFSAC Meeting you briefly mentioned that there may be a mechanism in the bone marrow? Can you comment on that?


Could you elaborate on the findings that you and Mark Davis had with clonal expansion of T-cells and a possible antigen? Can you give us an idea of how big of a discovery you think this will turn out to be if validated and when will we hear more on this and if you think their will be treatments that can target this?

 

Drug trials
I note that you have done clinical trials in the past on Valgancyclovir (antiviral), and on low dose Methylphenidate (stimulant) with and without Mitochondrial Support.

Do you still use either of these treatments in your clinical practice?

Do you have further larger trials of either of these planned?

Would you recommend either for patients to try?

Do you have any other drug trials planned?

 

Biomarkers and their implications:

Given that differences between ME patients and healthy controls have been found in the brain, cytokines, the microbiome, metabolites in the blood, and mitochondrial function, can you suggest which seems the most promising source of:

a biomarker that can be used by all doctors to distinguish ME patients from other fatiguing illnesses

a biomarker that might lead to a better understanding of the cause of ME

a useful direction for treatment, such as classes of drugs.

 

Given that a large proportion of PWME appear to have the co morbid conditions of either EDS 3 (hypermobile type), or MCAS (Mast cell activation syndrome) or both, can you say if there could be a mechanism for why this is, and do you consider these patients to be a separate sub grouping?

 

The most important question to be asked is:

Are you a cat or dog person? (or other)

Supplementary Question:

Is me/cfs becoming more of an area of interest for students and researchers?

 

Well he is an expert on toxoplasmosis which I gather is spread partly by those unhygienic cats walking around in food preparation areas.

Perhaps he could enlighten us in the infectious risks of having a cat?

My more pertinent question though is:

Does he have a view on the likely mechanisms for the relapsing remitting nature of the disease and the likelihood of being able to diagnose severity level via biomarkers/metabolic profiling in the future.

 

Will his research on brain scans be replicated/expanded?

Although Japan and possibly one other group also did brain scans, I believe his work should be expanded and not only include healthy controls but cohorts such as MS, Lyme, ALS, Parkinson, Autism, GWI, EDS, and patients suffering from depression. I include depression patients not because I believe we will have anything in common neurologically with this group but because we have to unwind the damage done by healthcare and psychiatry believing we are mental health patients. I don't believe any group will share our specific neurologic issues and I think that needs to be established.

Depression patients, although included as cohorts, should have a note stating that they are included not to rule ME/CFS in as experiencing mental health issues but to rule them out as being depressed.

No, I don't know where the money will come from. But visual evidence speaks louder than any print data.

 

Very important!

 

With millions of PWCs experiencing fundamentally the same illness do you believe there’s some common basis in the malaise or in the etiology?

 

What are his research plans? What should be the research priorities?
If he was given 25 millions for research tomorrow how would he spend it?
Should there be a medical specialty formally responsible for ME and would this help in expanding research interest?

 

What are your thoughts on the impaired pyruvate dehydrogenase paper by Fluge/Mella?
Do you think there are subsets in ME/CFS, such as those that may or may not respond to Rituximab?

 

Could he take an educated guess on when effective treatments will be found for us....

 

Do you think there could be a link between ME/CFS and food intolerances?

 

You recently said that pathogens have not been excluded as cause of ME/CFS. My question is: what kind of pathogens do you think might be involved, and where in the body do you think the infection is, and what kind of research needs to be done to actually fill this knowledge gap?

 

I don't have a question, just wanted to thank all those involved in organising these Q&A/AMA sessions. They're so useful for the community, and no doubt use a lot of precious energy. Thank you all!

 

Absolutely right. Great to have this sort of involvement with the scientific community. Hopefully these sessions will prove beneficial to all participants, including the science community. In the fullness of time I hope these sessions will also set a great example of interaction between PwME who seriously engage with the real science, and the scientists who undertake real science, reporting their true findings no matter what the results.

I also feel these sessions are helping establish S4ME's identity, and I do like the direction of travel.

 

@The UK ME/CFS Biobank received a number of donations following the Q&A, several mentioned their participation on the forums in their donation comment - https://www.justgiving.com/fundraising/ukmecfsbiobank

 

That's brilliant, though of course I wasn't referring only to financial benefits.