Top reasons ME research is an opportunity

We're having a meeting next week with a Senior Policy Advisor from Health Canada. She already had a meeting with a ME patient a week or so ago, and it was via that patient that Millions Missing Canada is getting this meeting.

Part of our messaging is to frame ME research as an opportunity for Health Canada to be a global leader in ME research.

So our task is to have some examples of how ME research represents an opportunity to get in on the ground floor of what is sure to be a fast growing and impactful (even outside ME) line of research.

So, what are the most compelling new areas of research that are emerging via ME research? If you had control of the purse strings, where would you direct ME research funding?

 

It is a unique opportunity, i believe it will widen our knowledge to autoimmunity, inflammatory processes and many many other functions.

 

The SCMI Ramsay research awards for 2016 have already produced results that will be built upon, so there's 4 examples. You could maybe ask UK ME/ CFS biobank for a list of projects that they have supplied samples for.

 

Thanks, I just checked them out - but its not obvious to me (and my adled brain) how each of those projects may represent a big research opportunity - or, I guess what I'm actually trying to get at, is a new field of study.

I was thinking along of the lines of Metabolomics: metabolism a new field of study (true?), it fits with the hypometabolism Naviaux found in ME, it fits with our lived experience of ME; metabolism exists in every cell (true?) and every person so has very broad applications, its mitochondria not hypochondria - it will be easy for a policy wonk to envision how investing in early metabolomic ME research may be a wise investment that will pay dividends beyond ME.

Is Younger's work a new field? Or maybe Scheibenbogen's work on autoimmunity? What about Ron Davis's work? I really don't know, my brain is not up to that kind of analysis.

The other challenge is putting research into accessible / plain language - for me and the policy advisor - and then hopefully for her bosses.



@mariovitali

Iirc, your research is from the machine learning angle - is that a new field of study in the ME context? If so, how would you characterize the potential benefits of investing in that approach? (Maybe the autoimmunity and antiinflammatory processes you mentioned?)


Thanks folks - I'm not being as clear as I'd like, but you're helping me clarify aspects of the concept of 'ME as research opportunity.'

 

Machine Learning is being used for Pharma Research (e.g https://benevolent.ai/ ). I believe that over the next years, Machine Learning algorithms will be scoring the most probable Biological Targets so that the development costs of a drug are brought down to a minimum and this will be used by all major Pharmaceutical companies.

I began using Machine Learning methods for ME/CFS in 2011 (i work as a Data Scientist since 2000) . I wanted to identify the common characteristics of "Symptom-free" vs "Symptom-full" days (this was discussed at my presentation at the LSHTM) and that analysis helped identify key aspects of this theory.

If you've been following my posts you will recall this network Analysis snapshot :





Some nodes are not being disclosed because i have reasons to believe that these computer algorithms have solved a more profound problem. In any case we will have to go slow, proving the worth of this approach on a step by step basis.


Edit : The benefits come from bringing down costs and the time required to find a cure for any disease or syndrome

 

LINKING ALL OF THESE FINDINGS TOGETHER. We're edging up on the time when we can begin taking a look at results in the context of each other. We would need a large gov't investment to get it done.

On the smaller scale, metabolomics, immune cell function, stem cell research/iPSCs, and a genetics study of a useful size are all imperative.

 

I don't know how much weight this would bring but: how much research out there has this much potential to have this huge of an impact for so little money? Medical research is absurdly expensive, rarely pays off, most of it is poor quality, leads to nothing, has no impact on the world, not for lack of trying but because they have already mapped the easy stuff and are trying to work at the edges of knowledge.

This is an opportunity to have a direct, massive impact on millions. How much research can actually make that claim with confidence? There is so much potential for breakthrough, to have a huge impact around the world as a leader in a disease whose sufferers have been abandoned, stigmatized, ostracized. It can be a modern Normandy, liberating the equivalent of France's population during WWII.

Maybe that's not significant for authorities. There is so much unknown about what we will find, even outright denial that there is anything to find. But to believe that is silly and goes against everything we know about science, its history and its progress. The reason we haven't found anything is because we have faced hostility and funding was systematically rejected. We haven't made a breakthrough yet because the effort simply hasn't been sufficient. But that also means that the first ones to make that effort will pay off massively because of what was accomplished over the decades on shoestring budgets. There is so much to capitalize on, to build upon.

 

It is an opportunity because of the rare team of people leading this. The stars are aligned for so long. We really need one billionaire willing to step forward and plant both feet in this - somebody who gets this is an opportunity to move quickly for good returns.

Funding from the Canadian Government from beginning until the point the money moves is normally a slow process - 2 or 3 years.

 

I really want to know the identity of the molecule causing the energy deficit in Ron Davis' nanoeedle. I would guess he would be happy to work with a Canadian team if they had a mandate and funding to identify it.


ME is obviously an immune mediated disease, it represents something about the immune system we don't understand and need to elucidate. Is it a defense mechanism, is it autoimmune, is it genetic, is it a system gone haywire, is it maladaptive (obviously but from an immune functioning perspective), is the mechanism involved in other immune diseases that would help understand them better. Possibilities include MS, lupus, fibromyalgia, Ehlers Danlos Syndrome and probably a few others.

Guidelines for early diagnosis could also be an aim in itself.


Are they also interested in patient outcomes, from research into available treatments to early diagnosis and treatment that may lead to remission in early stages (or late stages), can early intervention and pacing keep people working longer or not have to end up on disability (if saving money is a goal which it often is). Also people diagnosed with ME may have other diseases that are treatable and if a protocol was developed those people would be able to treated and return to their lives and vocations.

There are drugs that are anecdotally helpful and low cost, determining their effectiveness rates scientifically and methods of action could lead to guidelines that don't yet exist. An actual clinical study of Ampligen would be useful.

This is off the top of my head, i'll have to give it some more thought in the next couple days when my head stops spinning (had to go to Toronto neurologist again yesterday, this month just sucks for me with more visits still to come).

 

Sorry if this is repeating anything. Haven't read thread and wanted to get down thoughts first.

Perhaps setting up a research funding stream for ME could also be used as a test case for a more interdisciplinary approach to medical research in general with the idea that this would be a template for all future research of this type. Especially as it seems to be that the gut and the brain have some close interconnection that is not well understood. ETA: and hormones are possibly a connection between the two.

I've read that inflammation also is an issue in cancer research (and because I'm science illiterate I can't be very specific) but I think the area of auto/immunity and inflammation are not very well understood areas of biology and that there are an increasing number of illnesses that are affected by these factors.

Genetics probably also play a role and 'precision medicine' would seem to be the way of the future.

Canada has been collecting longitudinal data on Canadians health. It's possible they have some idea about the incidence of chronic illnesses as percentage of population. Looking into the future, these could be prevented and healthier Canadians can contribute. It should also be noted that (for example) I filled out one Health Canada form that was collecting data but did not do follow up surveys so there is probably (like me--there is a longer story to that) a lot of people who do not get included in the data.

I don't have a clear idea if the following are of any use but include them in case someone finds something useful in them.

http://www.cihr-irsc.gc.ca/e/documents/inflammation_report_en.pdf

http://www.cihr-irsc.gc.ca/e/49032.html

 

A good example of how even small countries can make a difference is the work at Haukeland and now the rest of Norway.

Canada and Norway have a lot of things in common, including a similar government/public funding and health care system. Proves it can be done, and that it can really make a difference.

 

Top reasons ME research is an opportunity:
1) opportunity for government to affirm that equality is one of their most imprtant value
2) ME shares many symptoms and presentations with other diseases such as Ms, some rheumatological diseases, some neurological diseases. It is an opportunity to compare diseases and better understand the role of inflammation, autoimmunty and gender differences at a cellular level, perhaps at system biology level.
3) for the researchers, they would be entering a field where they could make great discoveries that could impact a number of diseases.
4) the opportunity to establish a new medical specialty and build medical hubs that meets the needs of patients
5) the opportunity to recognize the mistakes, the let downs, the stigma and opportunity to turn the page and to make it right for patients.

What kind of research is needed?
1) Research on biomarkers of illness.
2) Brain inflammation- correlation of cognitive issues with brain inflammation- correlation with other neuro-inflammatory diseases. Several studies need replicated, which provide a starting point and opportunity for new researchers to enter the field.
3) T-cell clonal expansion: is this disease an auto-immune disease?
4) Energy metabolism: cause or downstream effect? Homogeneity or heterogeneity?
5) POTS co-morbidity: is it auto-immune, downstream effect of ME or separate entity?
6) patient registry and national biobank (brain and tissu bank should be explored)
7) Genetic research: is it a hereditary disease? Are there genes mutations making it easier to get the disease?
8) sex differences. Then: what is the role of sex hormones in disease trigger and disease maintenance.
9) clinical trials: drug trial options could and should be explored while we are awaiting research to catch up. Understanding mode of action and approving medicines with designation for ME would increase reach to patients and could help many in avoiding worsened course of illness.

 

Looking just at NK cells alone, labs report that they are also testing low in cancer, primary immunodeficiency, viral infections, HIV/AIDS, post-cancer syndromes, malnutrition, autoimmune disease; and high in malaria.

I mean, you want to advance global medicine, why would you consider not studying ME? Counterproductive to ignore stuff.

 

What is it they are looking for, specific projects to study or reasons to allocate more money or something else?

 

Also there’s this:
http://mefmaction.com/docs/CCHS_Stats_2014.pdf

I don’t think it’s saying ME (and fibromyalgia) are inherently worse than other diseases, just that if you neglect to study and treat people, they do badly.

 

Milo's list is a good starting point. I think showing them the breadth of research needed might be useful. The reason I mentioned SMCI awards was to demonstrate to them how quickly results had been obtained ( there will of course be failures) .Prustys research about HHV releasing a mitochondrial inhibitor needs replicated.

 

I was just reading a thread started today and it occurs to me that it might have some utility on this subject.

That is, there is increasing study on aging and how to prevent aging from occurring. If we could find some good data/research to use as an example of what processes happen to people with ME and how that might relate to the study of aging then that would be gold.

It might be worth asking the question of an ME researcher, especially if they have a colleague who works in the area of aging. (although the meeting being imminent it might not be possible be it could be hinted at and an offer to do some follow-up on the topic maybe?)

 

Thanks folks, for all the comments and brain storming, very helpful for informing and discussing with the policy people so they can clearly envision a path forward.

That's the key question: What will affect change? What reason(s) will actually move the government? What will they (the party, the politician) gain?

It took 50 years from the time Prime Minister Pierre Trudeau famously said in regards to gay rights, "There's no place for the state in the bedrooms of the nation" until his son Prime Minister Justin Trudeau apologized to the LGBTQ community for the institutional harm perpetuated by the government and its 'fruit machine'.

The government's own data about ME shows very high prevalence, lowest quality of life, highest unmet health care needs, and lowest / currently zero research funding. So that's the objective facts - but they've had this data for decades and it has not moved the needle.

For all intents and purposes, the ME community doesn't even have the government acknowledgment that ME exists. Acknowledging there is a ME problem would be a first step. Will it then take 50 years to get an apology for perpetuating harm on people with ME?

__________

Ultimately its about establishing long term working relationships, so the goal for this initial meeting is to have another meeting to further discuss the ME crisis, and potential solutions as opportunities.

 

How about linking in with work done on microRNA by Prof Alain Moreau who recently presented his findings at Stanford and CMRC2018? Health Canada is likely to feel safer looking at options involving Canadian researchers already established and internationally respected in the field of ME research, rather than starting from scratch. I believe microRNA is a fairly new field of research - not just in ME but new full stop – and it could have implications not just for ME but all sorts of other diseases which would probably make it more appealing to any funding body.

 

So my guess is you need to convince them that ME exists (use their own data plus other data), its been maligned by the psychosomatic camp who publishes flawed research (some examples and/or a David Tuller open letter/takedown(s) would probably be good to have on hand), that real research is slowly happening in other countries but in Canada needs money to help patients and policy support (with some examples of teams who need funding if you have them) and that they have the power to make progress on our behalf.
It may also help to have a list of what you would ideally like them to do or work towards. Sometimes the very direct approach works, if they look reluctant near the end of the meeting ask what they want to see to be convinced.

Do they control purse strings or are they just writing recommendations for someone else?

Also some reverse psychology may be something to consider, explain that most patients have trouble getting diagnosed (spending years or decades doing so losing functioning that might have kept them well longer), they usually lack documentation and are often denied disability, can they also help with this. They might say no we can't because thats not our area but it puts an idea in their head that they have to do something.