Next up, some idea about sleep betterment in ME/CFS.
Sunday, July 23, 2017
Most people would agree that good, solid sleep is essential to recovery, or stability, in ME/CFS. Some doctors talk some about sleep, some not at all.. My idea has always been – Correct the sleep and set the stage for recovery or betterment. This is easier said than done.
One basic question is how do you get objective information on sleep quality? If the patient is able to move, one could have a sleep study done. But this is only a short cross-section slice of a big picture and it is difficult to do every night. Believe it or not, sleep studies are different on back to back nights. To be really effective, you would have to do a string of them and maybe every month.
So - what is the next best option, something that is a little more practical? My son Peter bought his sister a Beurer SE80, a home use sleep sensor. This sensor is one of a number that are on the market. All of these type of sensors use movement, respiration and pulse in tracking a patient’s sleep. There are more sophisticated items coming down the line. It is a rapidly moving field so one needs to pay attention.
The Beurer SE80 is a six-inch flat disc, placed under a mattress, near the heart of the patient. It is plugged into the wall. It records its information on a device - an IPhone or IPad or other - via Bluetooth. The recording device has to be within 25 feet of the sensor. Various reviews of the Beurer SE80 complain about the program, that it doesn’t archive, blah, blah, blah. In my opinion, it generally records and makes available the necessary information. It is not perfect, but it is very useful.
The sensor is turned on when the patient is about to go to sleep. The sensor detects when the patient falls to sleep. The sensor tracks when the patient is asleep, when the patient is awake, or away from the sensor (out of range, from movement or getting out of bed). Through movement, breathing and heart rate, the sensor calculates (guesses at?) estimates of deep sleep or Slow Wave Sleep, REM and what they call light sleep. It gives results both in a percentage and time breakdowns. It tracks average overnight heart rand respiratory rate
In the roughest sense, one can get an idea when the patient goes to sleep, how long they sleep, when they awake, when they get out of bed, when they go back to sleep and when the sensor shuts off. On a good night, a patient might turn the sensor on at 11, go to sleep at midnight, move immediately into slow-wave sleep, cycle through periods of REM, and wake up. The time awake is noted and records when the patient goes back to sleep. My particular patient sleeps in stages, first sleep, second sleep and often third sleep (in the morning). Certainly, everyone is different in this regard.
The first question one might ask is how accurate is this device? How accurate especially are the deep sleep and REM categories? To this I can only answer, I do not know.
However, like with pedometers, I have learned to pay more attention to consistency or predictability than accuracy. It you wear a pedometer - like the Fitbit - every day, day after day, one gets the sense of consistency and reliability. Anyone with this illness who is able to move should be on a Fitbit pedometer. It is the only objective device available to ME/CFS patients, a device that will track regression and improvement. I remember standing in astonishment with the tall Rituxamab fellow, as he laughed at my suggestion to use a pedometer on his Rituximab patients. His first argument was that it was too expensive. Then he said that it wouldn’t work. I just turned away, wondering where this guy left his brain?
We started using the Beurer sensor a year ago now, using it every day. About 10% of the time it does not record all night, for various reasons – thunderstorms, internet or Bluetooth failure, low battery - and sometimes for no apparent reasons.
Over this time, a year, I have gotten a pretty clear picture of my patient’s sleep, both in its ups and downs. 400 sensor reports gives you a feeling of what is going on. With the information gathered from this sensor, I seek means for achieving improved sleep.
Next up, some idea about sleep betterment in ME/CFS.
Next up, some idea about sleep betterment in ME/CFS.
Saturday, June 3, 2017
Recently, the 12th Invest in ME conference in London ended. This ME/CFS conference is three days of serious research discussion and presentations. It is one of the best conferences on difficult diseases. The sponsors Richard and Pia Simpson exert an extreme effort to put on this conference, a conference which expands in scope every year. These two individuals are extraordinary people.
One wonders, with all the comprehensive research at this conference, if Dr. Chia and his Enteroviral research were even mentioned at the Invest in ME conference conversations this year?
Is it possible that the low level of response to his research will continue indefinitely? Let's hope not.
Dr. John Chia knows that enteroviruses are a cause of ME/CFS.
I first met Dr. John Chia at the Invest in ME conference many years ago. Dr. Chia made a presentation on enterovirus and ME/CFS. He has made several other presentation at Invest in ME and I have written about him before, here and here and here and here.
Recently I came upon the NIH RFI request sent out this spring. Various people responded and the publication of responses can be found here. Dr. Chia's is the third response down, talking about his subject - enteroviral involvement in ME/CFS. The real question is if anyone - specifically the NIH - will pick up the thread.
Dr. Chia made a three-hour presentation on Enteroviruses at the IACFS/ME conference in the fall of 2016. In it, he makes the case that he has been making for many years now.
Dr. Chia keeps working on enteroviruses involvement in ME/CFS. He is undeterred and is committed to continue until there is a solution. In the meantime, Dr. Chia treats patients with oxymatrine. A certain percentage respond. He also uses Epivir in some cases. More recently he recommends dihydroquercitin and specifically Swanson's Russian Rejuvenator. Dihydroquercitin appears to inhibit coxsackie b4 virus and stabilizes mast cells. It has various other activities - anti-inflammatory, neuroprotective, combats oxidative stress - that you can read about online. It suppresses the release of histamine.
Dr. Chia has no problem with the recent metabolome data coming from Naviaux, seeing it as a step in the process of ME/CFS. He believes that a number of drugs might modulate the cellular function in the brain but eventually the viral replication or related mechanisms will have to be inhibited. This will come with anti-virals against coxsackie B and Echo viruses. It is known that two European companies are working on a anti-viral coxsackie drug, but they keep their work very quiet. The companies working on this have extra motivation now, knowing that their market for this drug is greater than originally thought.
By sheer chance, my daughter started doing the ARUP coxsackie antibody test in 2005. Only in 2007 did I hear Dr. Chia state the importance of doing this specific test. My daughter's antibodies to CVB4 and CVB3 have been at the top of the range for ten years. To me this means something, as opposed to many other test results, which are indeterminate. I know a lot of people with ME/CFS - and a good number of doctors who try to treat it. To all of them I urge doing the coxsackie antibody test via neutralization at ARUP. Amazingly, I have yet to convince one patient or one doctor to do this test. This in itself says something - and it is not good. It appears that they just do not want to know.
More can be read on Dr. Chia and enteroviruses on the Phoenix Rising forum and another one on PR here.
There are a number of interesting responses in the NIH RFI cited above. For instance check out Dr. William Weir's response. It is the second one from the top.
Saturday, May 27, 2017
Each year I feel more ignorant regarding the research going on with ME/CFS. I know a lot about a lot of things but I know very little about bio-chemistry. It puts me at a great disadvantage, so do not expect scientific insight in this report. I see myself as an observer.
In the fall of 2014, I attended the Lyme conference in San Diego. It was the usual mixed-bag of a conference, except for one noteworthy encounter that I observed. At the instigation of Dr. Neil Nathan - Dr. Nathan, Dr. Judy Mikovits and Dr. Eric Gordon met with Dr. Robert Naviaux. Dr. Naviaux is a mitochondrial/genetic researcher who runs a lab at the nearby University of California San Diego. At the time Dr. Naviaux was doing trailblazing research on Autism. As far as I know, this meeting was the beginning of Dr. Naviaux's interest in ME/CFS. (Previously a number of people, including the incredible Rich van Konynenburg, a close friend of Dr. Nathan, felt there might be some association between Autism and ME/CFS.)
Dr. Naviaux's Autism research in 2014 included this and this. A year later there was this intriguing study and also this similar study. Dr. Naviaux proposed early on that a 100 year old drug named Suramin might have some activity against the "cell danger response" in Autism.
Today came a new study that moved this treatment to a small group of young boys. The study was published in Annals of Clinical and Translational Neurology. The purpose of the trial was to test the underlying theory about a cause for autism and to assess the safety of Suramin. The results were quite striking, but right on target for Dr. Naviaux's supposition regarding Suramin. There is an article about this new study here. Also there is a youtube video of Dr. Naviaux speaking of this study and its participants. Additionally Dr. Naviaux answers questions on today's study here.
Dr. Naviaux has provoked a shift in the underlying cause of Autism - towards a metabolomic signaling breakdown. This is a seismic shift. Time will tell us how real this is.
There is some thought that the purinergic signaling in ME/CFS is also aberrant. I first heard of this in a presentation by Dr. Geoffrey Burnstock at a 2011 Invest in ME conference in the UK. Next week the 12th Invest in ME conference will be held in London. Invest in ME does an excellent job at promoting serious ME research. Perhaps Dr. Naviaux will attend this conference? There he could meet Donald Staines and talk about Vasoactive Intestinal Peptides and other neuro-peptides. In this business of ME/CFS, there is never any assurance that the right people are talking together.
More recently, Dr. Naviaux has focused on ME/CFS. He has communicated with various CFS physicians and researchers, including Dr. Paul Cheney. Dr. Cheney has long promoted the notion of ME/CFS being a "Dauer state" or a self-protecting down-regulation. Dr. Cheney's protocol leans towards correcting a hampered metabolism in his patients.
Dr Naviaux and his research is connected to the Open Medicine Foundation. He works closely, as well, with Dr. Ron Davis at Stanford and Dr. Eric Gordon at Gordon Associates.
The post below reviews Dr. Naviaux's important study on ME/CFS patients in 2016. Yesterday, Dr. Naviaux did a follow-up webinar sponsored by the CDC. The slides can be found here. This presentation includes this: "hallmarks of a low energy state: anxiety, restlessness, irritability, fear of change, OCD behaviors, sensory and chemical hypersensitivities, meltdowns, and bouts of hyperactivity and even seizures." Sounds familiar.
It is worth noting that Suramin has various actions.This fact intersects nicely with some past, supposedly failed, research in ME/CFS.
All this is pretty amazing stuff. Dr. Naviaux's ideas seem to be reshuffling a number of hypotheses about these serious ailments.
As with all research, the biggest obstacle to moving forward is money. I have followed type 1 diabetes research for 25 years. It is a tough road for innovative researchers to get enough money to actually do the work, especially if the researcher is seen as an outsider - and when there are unseen or undeclared forces standing in the way.
Fifteen years into my daughter's illness, her caregivers and I struggle to make her better. Hope is not the answer. Research and treatment are. Dr. Naviaux's work is most welcome. All those connected to the illness need a little practical results and direction in order to gain some traction.
Meanwhile, patients and advocates are left to struggle on their own. All, according to their abilities and finances, try to find a way out of this disease. In my limited experience, different things work for different people - and some enterprising or lucky individuals can actually get better.
****It is worth noting that there has existed for some years now a comprehensive urinary metabolites test that measures 70 different metabolites. This organic acids test is available from Great Plains Laboratory and other labs. I see the OAT as a crude precursor of Dr. Naviaux's metabolic studies. However, it is an existing instrument with actionable information. The patient, advocate or even a doctor can learn to read this test and make decisions.