Whoever participates in this will get a very big feather in their cap.
Monday, February 25, 2013
I remember well the ME/CFS researcher Jonathan Kerr. Many people might not remember that he wrote a paper on enteroviral involvement in ME/CFS, a copy of which can be found here.
“The role of enterovirus infection as a trigger and perpetuating factor in CFS/ME has been recognized for decades.”
Soon after this, Jonathan Kerr "was disappeared" from ME/CFS research. I wonder where he is? I miss his efforts on our behalf. The more I think about his departure, the sadder I get. In the last few years we have lost a number of serious ME/CFS researchers. These losses have been distressing.
On a less disturbing note, we might put forth the idea that ME/CFS research has never been so broad and far-ranging as it is today. Some would say that we are making progress, and that hope stands right around the corner (probably leaning against a wall, whistling - or smoking a cigarette).
In this world of optimism, one astonishing item continues to be set aside or ignored: the enteroviral association with ME/CFS established by Dr. John Chia. Something needs to be done about this. Dr. John Chia's critical work should be put center stage. Dr. Chia holds in his hand a key to unlock a part of this illness.
Recently there has been a fine set of video interviews with this unsung hero of ME/CFS. Part one can be seen here with the others following. These interviews are conducted by Llewellyn King, who speaks with a knowledge and ease that is admirable. Llewellyn King’s series ME/CFSAlert has focused on many clinicians and researchers. However, this four-part interview with Dr. John Chia is the best. It is worth viewing these videos more than once - for the key points to sink in.
Ten years ago, Dr. Chia’s son Andrew became sick with what turned out to be ME/CFS. In his desire to help his son, Dr. Chia did what many smart people do - he turned to the past (history) - and studied the early literature of ME. Things fell into place for Dr. Chia as he reviewed the older, known connection of ME/CFS to enteroviruses. Enteroviruses fit the picture.
Early clinicians in the field, especially Ramsey and Richardson, suspected enteroviral involvement. This belief held particularly true in the UK, where the disease is known by its proper name - Myalgic Encephalomyelitis (ME).
If one wants to get a real fright about the seriousness of this illness and what enteroviruses can do in the human body, read John Richardson’s “Enteroviral Medicated EncephalomyelitisSyndrome Pathologies”.
In time, the pursuit of an enteroviral association with ME/CFS lapsed. There are several reasons for this.
In 2007 Dr. Chia and his son Andrew Chia reignited this enteroviral idea and published a paper demonstrating a strong association of enteroviruses in ME/CFS. The surprising and convincing aspect of their study was that they were looking at real human tissue – stomach biopsies. This is hardly ever done in ME/CFS research.
As a researcher/clinician, Dr. Chia has constructed a world of his own. He has gathered his profound insights through making no great new discovery. He has just connected the dots. His studies are the product of persistent, dogged effort. As he says, his work is not sexy. Dr. Chia and his son continue to build research into enteroviral involvement in ME/CFS.
Since his paper was published in 2007, no one has tried to substantiate or replicate his work. Why? How can his be?
Dr. Chia has left “something of significance” for us sitting on the table in plain view. To get further with this it needs to be taken up by someone else. No thinking is involved. All it needs is the hard work of replication.
(InvestinME has done a great service in elevating Dr. Chia’s research. They invite him to speak each year. Unfortunately, his research efforts are at a standstill with his ideas gaining no traction. What is Dr. Chia supposed to do – replicate his own study?)
Anyone familiar with the research world of ME knows the implications of nailing down one corner of the illness through substantiating an association with an infectious agent. Let me repeat that: if you nail down one corner of this illness with an infectious agent, you nail down the whole thing.
Instead, everyone wants to go in their own direction and solve this illness on their own. Is that the idea? - Everyone comes up with their own idea that will never be substantiated? Is this how real science is done today? Does the ME/CFS research world have to be that constricted?
Why doesn’t the Whittemore Peterson Institute (WPI), Mt Sinai ME/CFS Center, Ben Natelson, Peterson’s Simarron Research Foundation, Klimas’ Nova Institute for Neuroimmune Medicine, the Chronic Fatigue Initiative, Kolgenick’s Open Medicine, Jose Montoya at Stanford, or the CAA, step up to the plate and substantiate Dr. Chia's work?
The most likely person to pursue the enteroviral connection in ME/CFS is Ian Lipkin at Columbia. Lipkin has an inquisitive nature. I would be surprised if he is doing tissue biopsies, which seems the way to go.
It is time for someone to make a serious effort to replicate Dr. Chia’s work - and to find out what exactly it means.
Nothing would get the government agencies or the drug companies interested faster than scientifically demonstrating a viral association to ME/CFS.
You can petition the government as long as you want but nothing will change until the science is built in a coherent fashion. Giving them a replicated study of Dr. John Chia’s work would be a very good first step. It would put a sudden halt to the research merry-go-round of the last twenty-five years.
Whoever participates in this will get a very big feather in their cap.
Whoever participates in this will get a very big feather in their cap.
Monday, February 18, 2013
Just today I was speaking to a friend about Llewellyn King's gifts at interviewing people. Here is another example of his fine work, another section of an interview with Dr. John Chia. Dr. Chia is one of the very finest minds working in the field of ME/CFS.
Friday, February 15, 2013
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."
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.
Friday, February 1, 2013
Here is the third section of a very fine interview with Dr. John Chia. The interview is conducted by Llwellyn King. Mr. King does us a great service in conducting these ME/CFS Alert interviews, and presenting ME/CFS information with such clarity. Clarity is something that is in short supply in this illness.
This interview should be required viewing material for anyone who is interested in this illness. Dr. Chia has a firm grasp on a very significant aspect of this complex illness. His ideas are attached to solid evidence - also something that is in short supply in this illness. It is always surprising to me that more clinicians and researchers are not assisting Dr. Chia and his ideas, which incidentally are not new ideas, but take us back to the very first studies of this illness in the UK.
It would be nice to have some validation of Dr. Chia's ideas through other clinical studies involving other clinicians and researchers. Perhaps I am just not privy to this information, but it seems that Dr. Chia is working on his own here - and to me this is a problem, as he has what looks like a significant part of the answer.
I wonder what Dr. Chia would think of Anatabloc? I wonder if he uses it with his patients?
I have written in other posts about Dr. John Chia - for those who might be interested.