Friday, February 15, 2013

Citizen Scientists

I sit on my little perch here in the cold of Minnesota and wait. Much of the activity surrounding this ME/CFS disease is a waiting game. Time slows down for a patient advocate.

I have noticed over time that many patients do many things to try to alleviate symptoms of their illness, to "get at" parts of this illness. I have also noticed that most of these people are doing different things -often with very little overlap. The tendency from the patient's or advocate's perspective is to hear about something - and then add it into the regimen. Usually this does not bring much success, although often some people hit on something that works for them, at least for a while. Often this something is not transferable to others. Patients who have done this for many years have "seen it all", and have given up this kind of behavior.

This illness is complex and certainly must be individualized. In stepping back and looking at the entire picture, certain basic avenues of attack seem more important than others. Perhaps different people would choose different items off of the list, but four items seem to me to be most structurally fundamental.

These items are sleep, diet, hormone balance (especially thyroid) and gut ecology.

I believe all new patients should focus on these items.

For all patients, these four underlying structures should be considered prior to starting any heavy-duty treatments. I learned this from Dr. Dale Guyer. Dr. Guyer believes that the patient needs to be prepared for treatment. This boils down to an effort to strengthen the immune system. Dr. Cheney is one doctor who believes in pre-treatment. Dr. Klinghardt seems to be another. Most ME/CFS/Lyme doctors go straight into the drug thing - often with uncertain results.

The order of doing things also takes on some importance and has to be individualized.

Notice that we are not necessarily talking about cures or treatments that cure. We are speaking of stabilizing or strengthening the immune system. (This isn't exactly new information.)

I wish that I knew ten years ago what I know now. Instead I was directed towards useless testing and a random combination of drugs and supplements that were guaranteed to fail. If my daughter had known to do these four items in the first year of her illness, she would not be as sick as she is today.

Another way of saying it is that there are basic treatments available today. Perhaps they are not full treatments - perhaps they would be better labeled as "partial treatments"  -  but they could be recommended to all newly diagnosed patients with ME/CFS or Lyme disease. The fact that this treatment information is not on the CDC website is "a slight oversight", and it belies an intention - an intention that is not in the interest of ME/CFS/Lyme patients.

Sleep is a difficult item. Not enough is known about sleep and ME/CFS - and there are not enough options for achieving the level of sleep that is necessary to regain immune function. Patients have to juggle various medications and try to reach some sort of balance that gives them partially restorative sleep. This is very difficult. Xyrem, a drug that should be the "go-to drug" for ME/CFS, is tightly controlled by the FDA because of social abuse in the larger world. Xyrem is known to provide stage four sleep. A new sleep medication is coming from Merck. It will be interesting to see what Suvorexant will be able to do.

Diet can be approached in a variety of ways. Mostly dietary choices involve restrictions, which often can be quite stringent - and patient compliance is difficult. However, there is a great deal of information in the literature and online concerning diets for chronic illness, diets that can be individually tailored. Getting the diet right, like getting the sleep right, is hard work. Various diets cited by patients include Myhill's Paleo Diet, or the GAPS diet or Terry Wahls' diet - or some combination of these, along with others. The name of the game is restriction and eating quality food - again on an individualized basis.

It is important that the patient deal with thyroid problems, especially hypothyroid situations or Hashimoto's thyroiditis, which seems to stalk ME/CFS patients. Correcting thyroid, which takes time and ongoing adjustment, can help with many other things.

Gut Ecology
The "biggie"is gut ecology. A large component of the immune system exists in the gut. It is possible that much of what happens in ME/CFS is related to the biome of the gut. Tests exist today to try to sort this out - especially the Metagenomics test at The problem with this test is that no one knows how to read it - and no baseline has been established. De Meirleir is rumored to be publishing something, but it is not here yet.

Things are moving fast in the microbiome world. Among other things citizen scientists are running projects that are open to the public, that are open to you and me. Indiegogo has two separate citizen scientist groups running large scale microbiome testing on human beings. They can be viewed here and here.

Yesterday I communicated with one of these citizen scientists. His response follows.

"We are a citizen science project, not a clinical test. What this means is that we will be enabling people to sequence their samples, create surveys and compare themselves to the general population as well as subpopulations who answer the surveys. The test that you pointed to is using similar sequencing techniques.

The big difference is we are building a large community of people (with over 2,000 people we are almost 10 times large than the biggest study to date)! Over the next several months, we are sending out kits and launching the survey platform. Our vision is to empower patients with both rare and common conditions to conduct their own studies of the microbiome as citizen scientists.

If your daughter signs up we will absolutely compare her sample to the norm as part of our service. As well, if other people (at least around 20) with her condition do sign up, we could begin to be able to achieve some statistically meaningful results about the correlations between both her symptoms and her condition and the microbiome vs the general population."

I find this fascinating - and it is something that is within reach. It seems that this group - Ubiome - wants to conform to one of my needs - to find out how my daughter's gut biome relates to the norm. It also seems that this biome project might be able to determine if ME/CFS/Lyme patients have a particular profile. It should be noted that a recent gut biome study in the Netherlands found that type 1 susceptible children were missing a significant biome grouping compared to the norm. 

So far, I have ten patients who want to do this. I am interested in patients who have tightly defined ME/CFS/Lyme.

The information on ubiome is here. The cost is modest. We can essentially run our own trial. I would be interested in hearing from those ME/CFS/Lyme patients who want to do this. 


  1. Whittemore Peterson Institute has just received their genomic sequencers same process at the University of Nevada. Chris you should contact Dr. Lombardi.

  2. While I think that sampling the biome will be another (small) step to understanding health and disease, I'm afraid there is no such thing as a patient with "tightly defined ME/CFS/Lyme". Many conditions ("sub-groups") hide under these label(s).

    It is a hen and egg problem, I'm afraid. Until we have a better understanding about at least some of these conditions, such an attempt with 20 poorly known ME/CFS/"Lyme" patients (and they are poorly known, until we have clearly identified sub-groups) to try to identify commonalty will be a waste of time, money and resources.

    So unless you enroll 1000 patients and start finding commonalities in at least 200, you are going nowhere. If you take 20 ME/CFS/"Lyme" patients, you will find 10 different diseases, no matter how stringent your criteria are (CCC, ICC - doesn't matter).

  3. Very interesting, Chris. I will post the link on Phoenix Rising.

  4. I echo Tony's comment about well characterized patients. Even if I have a Canadian Consensus diagnosis from 3different drs, I know of others who have the same diagnosis, but very different disease than me.

    i also wonder if the results need to be interpreted as an event in time instead of the results representing each one of us as sick patients, on an average day. we would never know unless we opt for repeat testing. I am also wondering how our own experts would welcome the results, and how interested they would be in this.

  5. CFS was coined because the CDC had nothing in their medical literature that explained a few clusters of illness that Dr Peterson and Cheney called for help with in 1985.

    These were the people the new syndrome was based on.

    Whatever the prototypes for CFS have, can't help but be "CFS", for it is the illness of the prototypes that CFS is representing.

  6. Apparently, people don't want any particular group to be unequivocally "CFS"

    Since this is the case, go ahead and thank yourselves for creating the disagreement that allows Deputy director of the FDA, Admiral Sandra Kweder, to says is the reason why ampligen can not be approved for CFS.

    You've done it! Made it impossible.

    Without an "Agreed upon definition", there is no means to test any drug (ampligen or otherwise) for efficacy.
    And the FDA doesn't want powerful drugs given to an illness whose defining quality or definition is "Whatever"