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.
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 Redlabs.be. 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 redlabs.be 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."