I would like to add encephalitis and meningitis survivors to this list.
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Researcher Interactions Science for ME Q&A with Dr Montoya, 16th January 2018 question collection thread
- Thread starter Andy
- Start date
- Why do many of us suffer from heat and cold intolerance?
- Do you feel politics has played a role in holding back ME research? If so, then what suggestions do you have to move forward?
- What keeps you motivated to continue your mission to help PwME?
- What can PwME be doing everyday to support new research?
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Joh
Senior Member (Voting Rights)
I know that the press release from Stanford Medicine on July 31 "Researchers identify biomarkers associated with chronic fatigue syndrome severity" about his study "Cytokine signature associated with disease severity in chronic fatigue syndrome patients" was of course not written by Prof. Montoya. But I would be very interested to get more information about these two points that were mentioned:
I guess we already have more than enough questions, but if mine is used, please rewrite it in proper English.
I guess we already have more than enough questions, but if mine is used, please rewrite it in proper English.
Yes, but I should add, that some suffer cold intolerance, and suffer from chills, cold hands and feet, regardless of the temperature.
Barry
Senior Member (Voting Rights)
And some both. My wife has always "felt the cold", but since having ME also seems to have trouble "with her thermostat".
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Andy
Retired committee member
Revised, and final, compilation of questions. With so many questions we won't have time to ask them all, so apologies in advance if your question isn't asked. Also there will be certain questions that Dr Montoya will be unavailable to answer, for a variety of reasons.
I've done a little bit of editing down, if you feel I've misinterpreted your question then let me know.
Bone Marrow
At the recent CFSAC Meeting you briefly mentioned that there may be a mechanism in the bone marrow? Can you comment on that?
T-cells
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.
---
Given your focus on the inflammatory nature of ME/CFS, will your research center be pursuing any drug treatment trials? If so, which ones are you considering and why would you consider these treatments as potentially beneficial?
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:
---
We have seen a number of small scale studies over the years looking for biomarkers including immune system studies and brain scans. There are a few bigger studies as well. Which of the results do you think may be interesting in terms of potential to show core mechanisms and hence are there any that you feel need larger replication studies.
---
Some say the immune system is a little bit like a chaotic system, i.e. if you look at its function at one point in time and then on another, it might be completely different and it might not be forecast in which way. Assuming the immune system is 'chaotic': If the immune system plays a role in ME can a biomarker be found at all?
EDS/MCAS co-morbidity
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?
Disease severity and severity level diagnosis
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.
Commonality of disease mechanism
With millions of PWCs experiencing fundamentally the same illness do you believe there’s some common basis in the malaise or in the etiology?
Questions on research
Is me/cfs becoming more of an area of interest for students and researchers?
---
What are his research plans? What should be the research priorities?
If he was given $25 million for research tomorrow how would he spend it?
Should there be a medical speciality formally responsible for ME and would this help in expanding research interest?
---
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.
Addition: I would like to add encephalitis and meningitis survivors to this list.
Impaired PDH and potential subsets
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?
Treatments
Could he take an educated guess on when effective treatments will be found for us....
---
You said that Famciclovir was not that effective for certain viruses (sample: hh6v), But use vanciclovir for (hh6v), can you please elaborate on what antivirals are appropriate for the known CFS viruses cases: EBV, HH6V, CMV
Food intolerance
Do you think there could be a link between ME/CFS and food intolerances?
About pathogens
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?
---
In 2013, in a call with the CDC, Dr. Ian Lipkin reported finding retroviruses in 85% of samples sent to him from your lab. We have not heard any follow up over the years. Has this been explored at all? Do you think retroviruses play a role in ME/CFS?
Useful tests in a clinical setting
What would be your advice to someone who fits the criteria for mild/moderate ME/CFS, is still in the first couple years, but has not identified any significant abnormalities in standard blood tests? Is there a path to a firmer diagnosis through tests or are we not there yet and it's best to simply wait and see what the research brings? How would one pursue a practically useful diagnosis? or at least not miss any important differential diagnoses?
Paediatric issues
Does he believe that ME/CFS could be an autoimmune disease despite the failure of the rituximab trial?
Difference in potential energy input vs possible energy output
My wife eats a fairly normal diet, so her energy input is also normal; her weight is stable. But, like anyone with ME, she has far less energy usefully available to her. Do you have any thoughts of where the 'wasted' energy goes to?
General
The press release for your study "Cytokine signature associated with disease severity in chronic fatigue syndrome patients" made the following statements, could Dr Montoya expand on those statements?
I've done a little bit of editing down, if you feel I've misinterpreted your question then let me know.
Bone Marrow
At the recent CFSAC Meeting you briefly mentioned that there may be a mechanism in the bone marrow? Can you comment on that?
T-cells
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?
---
Given your focus on the inflammatory nature of ME/CFS, will your research center be pursuing any drug treatment trials? If so, which ones are you considering and why would you consider these treatments as potentially beneficial?
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.
---
We have seen a number of small scale studies over the years looking for biomarkers including immune system studies and brain scans. There are a few bigger studies as well. Which of the results do you think may be interesting in terms of potential to show core mechanisms and hence are there any that you feel need larger replication studies.
---
Some say the immune system is a little bit like a chaotic system, i.e. if you look at its function at one point in time and then on another, it might be completely different and it might not be forecast in which way. Assuming the immune system is 'chaotic': If the immune system plays a role in ME can a biomarker be found at all?
EDS/MCAS co-morbidity
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?
Disease severity and severity level diagnosis
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.
Commonality of disease mechanism
With millions of PWCs experiencing fundamentally the same illness do you believe there’s some common basis in the malaise or in the etiology?
Questions on research
Is me/cfs becoming more of an area of interest for students and researchers?
---
What are his research plans? What should be the research priorities?
If he was given $25 million for research tomorrow how would he spend it?
Should there be a medical speciality formally responsible for ME and would this help in expanding research interest?
---
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.
Addition: I would like to add encephalitis and meningitis survivors to this list.
Impaired PDH and potential subsets
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?
Treatments
Could he take an educated guess on when effective treatments will be found for us....
---
You said that Famciclovir was not that effective for certain viruses (sample: hh6v), But use vanciclovir for (hh6v), can you please elaborate on what antivirals are appropriate for the known CFS viruses cases: EBV, HH6V, CMV
Food intolerance
Do you think there could be a link between ME/CFS and food intolerances?
About pathogens
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?
---
In 2013, in a call with the CDC, Dr. Ian Lipkin reported finding retroviruses in 85% of samples sent to him from your lab. We have not heard any follow up over the years. Has this been explored at all? Do you think retroviruses play a role in ME/CFS?
Useful tests in a clinical setting
What would be your advice to someone who fits the criteria for mild/moderate ME/CFS, is still in the first couple years, but has not identified any significant abnormalities in standard blood tests? Is there a path to a firmer diagnosis through tests or are we not there yet and it's best to simply wait and see what the research brings? How would one pursue a practically useful diagnosis? or at least not miss any important differential diagnoses?
Paediatric issues
- Could we ask what his diagnosis process is - as it is a process of exclusion what testing is done and which tests would be "core" given post glandular fever onset with stress prior
- Can he define the differences between CF and CFS in a paediatric setting (it tends to be interchangeable here)
- For diagnosis, treatment and research could he confirm the understanding of PEM - there seem to be some idiosyncracies around this here
- Can he advise re experience of children being severely affected - we now have a situation in UK where PEM will be used as a diagnostic feature of PAWS (pervasive arousal withdrawal syndrome - essentially a means of redefining Perfasive Refusal Syndrome for severe ME in children as a psychiatric illness as it is not accepted that it exists) - could he clarify his understanding of PRS/ PAWS in relation to ME and if he has any experience of same.
Does he believe that ME/CFS could be an autoimmune disease despite the failure of the rituximab trial?
Difference in potential energy input vs possible energy output
My wife eats a fairly normal diet, so her energy input is also normal; her weight is stable. But, like anyone with ME, she has far less energy usefully available to her. Do you have any thoughts of where the 'wasted' energy goes to?
General
- Why do many of us suffer from heat and cold intolerance?
- Do you feel politics has played a role in holding back ME research? If so, then what suggestions do you have to move forward?
- What keeps you motivated to continue your mission to help PwME?
- What can PwME be doing everyday to support new research?
The press release for your study "Cytokine signature associated with disease severity in chronic fatigue syndrome patients" made the following statements, could Dr Montoya expand on those statements?
- "‘Solid basis for a diagnostic blood test’"
- "More generally speaking, the study’s results hold implications for the design of future studies of disease, including clinical trials testing immunomodulatory drugs’ potential as ME/CFS therapies."
Sharon Rousseau
Established Member
So sorry I missed deadline, i haven’t seen anything on epigenetic changes from toxins that carry down the bloodline for generations. Ie) GWI shares same symptoms as ME, are the same epigenetic changes showing up in their offspring making them susceptable to ME plus? Or, do round up chemicals on corn, wheat and soy prolong our disease? I realize too late for Q&A, how would you feel about doing a poll here, asking pwME what types of toxic chemicals have you and parents been exposed to? Cheers to a cure in 2018
.
Andy
Retired committee member
Perhaps we can save these for the next opportunity then (obviously assuming we get one). And in the mean time, any member can set up a poll of their own in a new thread, it's part of the options that are available when a thread is created. It should be pretty much self-explanatory but there'll be plenty of forum members who will be able to help out if need be.So sorry I missed deadline, i haven’t seen anything on epigenetic changes from toxins that carry down the bloodline for generations. Ie) GWI shares same symptoms as ME, are the same epigenetic changes showing up in their offspring making them susceptable to ME plus? Or, do round up chemicals on corn, wheat and soy prolong our disease? I realize too late for Q&A, how would you feel about doing a poll here, asking pwME what types of toxic chemicals have you and parents been exposed to? Cheers to a cure in 2018
Skycloud
Senior Member (Voting Rights)
My 73 yr mother was regularly exposed to DDT and and played with asbestos when she was a child from the way she tells it. She's very healthy but 3 of 4 children have 'issues'. A poll could be interesting if you want to set one up. Not sure what it would tell us in relation to ME though, it's a big complicated subject.
eta : To be fair to my mother I should add that I've had exposure to plenty of toxic compounds as a painter, especially when I was at art school where I often made own paints and other substances. Can't blame everything on my mum.
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Sharon Rousseau
Established Member
I remember as a kid fogging trucks for flies were frequent in summers. Probably DDT have to check it out. I had an exposure to pesticides from plums causing hair to fall out, plus plus.
My aunt had 2 occupations with chemical exposure
Hairdressing in 1960s - early 1970s ( dyes etc)
Floristry 1970s to 2010 - widespread pesticides
I think this background affected liver and immune functions. She did seem to be more prone to infections and take longer to get over them.
She now has severe ME. We think the trigger were the vaccinations she got to go on the retirement holiday of a lifetime to India.
Sing
Senior Member (Voting Rights)
Oh, thank you! I had a small guess that might be it but since usually things on forums tend to be spelled out, I thought I must be missing something. I am really looking forward to the interview and appreciate that we had a chance to brainstorm questions ahead of time!
Andy
Retired committee member
Sorry, for not making it clearer Sing. Our plan, initially, had been to livestream it but, quite frankly, we're not quite up to speed with all that is needed to do that yet. I've just finished the video call with Dr Montoya, so as Trish says, I'll need to tidy it up, add a few captions and such like and then post to our Youtube channel, so it will probably be at least a few days yet.
Samuel
Senior Member (Voting Rights)
that definitely needs correction.
pwme report more courses than r-r, including all four commonly described ms courses and many more besides those.
Joh
Senior Member (Voting Rights)
Thank you so much for your work, @Andy! It must have been exciting to talk to Prof. Montoya and I'm grateful to him (and all of you who organized it) and very much looking forward to watching the video. Bonus points if he's wearing the adorable @Graham-style flat cap that he was wearing at the CFSAC meeting.
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