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.
Monday, August 29, 2016
The long awaited study from Dr. Robert Naviaux of the University of San Diego was released today. It is a key study in this illness.
You can read about it here and here.
This is apt to be the most important ME/CFS study to date.
An article on healio states:
I was at the ILADS conference in San Diego in 2013. Among the interesting connections that I observed was a meeting between Dr. Naviaux and three ME/CFS researchers - Neil Nathan, Eric Gordon and Judy Mikovits. Dr. Nathan had arranged the meeting, thinking that Robert Naviaux might have an interest in ME/CFS. Neil Nathan, friend of Rich van Konynenburg, had the right instinct on this one. Thanks to him for this connection.
Dr. Robert Naviaux is a mitochondrial researcher at the University of San Diego.
Read about him here.
Dr. Naviaux has done metabolomic work in the field of Autism, which many feel is allied to ME/CFS. Various studies can be accessed online. Basically Dr. Naviaux has uncovered metabolomic dysfunction patterns in Autism, just as he now has in ME/CFS.
It is difficult to put into words just how important this study might be for getting the ball rolling. Not only does it provide a clear framework for metabolomic analysis for diagnosis, but it also points towards further studies in treatment possibilities.
Dr Naviaux works in collaboration with the Open Medicine Foundation, work being done with geneticist Ron Davis and others at Stanford. Their collaboration very well might be a fruitful one for patients with this disease. Here is what Ron Davis says about the study. The Open Medicine Foundation is working hard on a Severe ME patient study and a host of other things. They deserve all the support that they can get, at this critical time.
A word about Dr. Eric Gordon. Dr. Gordon runs the Gordon Medical Center and sponsors research. He has developed a working research relationship with Dr. Naviaux and Dr. Gordon is named on this paper. You can get more information about this study from Gordon Medical here. Dr. Gordon is one of these physicians who is "all there, all the time". If you want to help out, support his fund for a replication study. Replications are never done in ME/CFS and are a big sign of the problem in ME/CFS research. Those of you who are willing to participate but don't want to throw your money away, I suggest backing Dr. Gordon and his efforts.
Interestingly, another long-time ME/CFS physician, Dr. Paul Cheney has long held the belief that ME/CFS was a down-regulation of many body functions - as a protective device, a protection from dying. Hence Dr. Cheney has been careful in what treatments might be applied, careful that he would not make the patient worse. In this way he eschews using therapies like coQ, D-ribose and various other items that might provoke - believing that they might make things worse. In a nice way, this study is a substantiation of Dr. Cheney, whose down-regulatory notions parallel Dr. Naviaux's "playing dead syndrome"
Friday, February 27, 2015
"unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease."
Dr. Mady Hornig and Dr. Ian Lipkin from Columbia University published an important paper today in Science Advances. The study can be read here. Articles on this cytokine study appeared immediately in the Wall Street Journal and the NY Times, written by Amy Marcus and by David Tuller. Both of these journalist have been on top of reporting on this disease for a number of years and their efforts are commendable.
This significant study at Columbia (financed by the Hutchins Family Foundation) - along with the brain imaging of Dr. Jose Montoya at Stanford - will go a long way towards shifting the momentum in research into this serious illness - ME/CFS, otherwise known as Myalgic Encephalomyelitis.
From the Columbia website:
We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn't psychological,” states lead author Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School. “Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers."
"This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says senior author W. Ian Lipkin, MD, also the John Snow Professor of Epidemiology at Columbia’s Mailman School. “The question we are trying to address in a parallel microbiome project is what triggers this dysfunction."
Dr. Hornig will give a presentation on the research at Columbia at the Invest in ME conference in London at the end of May.
Friday, February 6, 2015
I had the privilege of meeting Hugh and Chris Hempel at the Whittemore Peterson Institute in 2009. My son Peter Cairns was filming various individuals with neuroimmune illness, among them the Hempels. The Hemples' two daughters Addi and Cassi, now eleven years old, have Neimann-Pick Disease, a rare and fatal illness.
The Hempels are what every parent of a chronically ill patient aspires to be. Few achieve the level of involvement and focus that they achieve. They have set aside totally their own lives and devoted themselves to the betterment of their two ill daughters. I have followed what they have done over the last number of years with astonishment.
Today I came upon this video unexpectedly. I was surprised to hear Mr. Hempel speak on a subject that is of very great interest to me. Medical cannabis is in the news every day now. There is a great battle going on in America. The outcome is uncertain. The great states of Minnesota and Pennsylvania, two states close to my heart, are moving towards medical marijuana programs. Why does it take so long?
It is painfully obvious that cannabis, especially non-psychoactive CBD or THCa, has certain medicinal properties and has helped, in various non-smoking forms - oils, tinctures, vaped, transdermal, suppositories - a great many chronically ill people, including the two daughters of the Hempels.
Mr. Hempel is doing us all a great favor in presenting his experience at a Ted talk. It also takes a bit of courage, given the nature of the US Government's position regarding medical marijuana. Mr. Hempel lays out the picture, without making extreme claims, only asking for serious research into the potential of this medicinal plant.
There seems to be some use of medical marijuana in Lyme patients. Not much anecdotal experience in ME/CFS is available on the internet. Given CBD's known anti-inflammatory properties, one would wonder, why is this?
Wednesday, December 31, 2014
It is that time of year again. Holiday time and the New Year is the saddest season for ME/CFS patients. While the dance of life goes on for many people, ME/CFS patients feel the heightened sense of abandonment and despair.
We need to try to do more to relieve their suffering.
I have felt for a long time that the key to the illness – should there be a key – lies with the severely ill. These patients at ground zero of this illness need to be studied - and studied in depth.
This is more possible today than any time prior. There are commercially available tests that could uniformly be applied to this patient group. I could list some of them, but I will forgo this at this time. And then there are the research tests that would delve even deeper.
Please excuse the repetition as I quote a few items from my previous blog posts. As Stravinsky said, some things need repeating.
“It is my belief that we, collectively, have to look more closely at the most severely ill ME patients. It is my belief that they harbor, in their severity, the keys to this illness. Most doctors do not see the most severely ill. Dr. Kenny De Meirleir, in his trips into Norwegian homes, treats the very ill. Dr. Paul Cheney and Dr. David Bell also have occasionally seen the severely ill. Perhaps others have - and hats off to them.
But, by and large, the severe patient is isolated from everyone. The severely ill ME patients cannot get to a doctor's office. They languish in darkened rooms, cut off from reality, isolated and often abandoned, and without medical care. It appears that no one cares a whit about them. It is these patients on whom we have to focus our attention - both for their sake and for ours. More effort has to be made to "get in close," although this, in itself, is difficult under even the best of circumstances.
I know of a number of these patients. They have the willingness to participate, through testing, in their own potential betterment - provided that the severity of their situation is taken into consideration. Many already have had testing for immune function, NK cell activity, cytokine disregulation, gut dysbiosis, brain scans and so forth. Consistent testing needs to be applied to these patients using existing parameters - if only to set the stage for future possibilities that will soon arise.
Most people do not want to take a look in this direction. Most people turn away - including doctors. It is time to toughen up - and to consider these patients, and what they are going through. Testing of the moderately ill has not brought clarity. We need to brace up, take a good look and then move in close. While it is difficult it is the only decent and humane thing to do.”
“Until those at the center of this illness - those in darkened rooms - are depicted, embraced and understood, nothing will happen at the government level.
In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos), should be mandatory - to set the stage and to get the participants in the right frame of mind.
There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said no. The government is content to give a grieving altar to the moderately ill and leave it at that.
The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from roofers, from plumbers, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything.”
“And what about the others - what about the really sick ones?
There is really only one way to present this illness, and it needs to be done more often. The face of this illness lies in the presentation of the severely ill patients. This is one of the real values of Laurel's CFSAC video testimony in October 2009. She did us a very great favor to make this video, visually and audibly describing her condition. This courageous and heartrending video that has so much power and dignity. We need to see more of these kinds of videos - images and pictures of the severely disabled. This is where the visual information lies - down near the bottom.
Imagine a patient who cannot stand, who has extreme fatigue and must live a horizontal life. Imagine a person who is functionally blind from light sensitivity and eye muscle fatigue and wears a blinder 24/7. Imagine how this blindness might further limit this person's ability to move. Imagine this person with sound sensitivity so bad that they cannot tolerate the phone ringing or dogs barking outside. Imagine a person whose skin is sore and sensitive to the touch. Imagine a person who cannot focus their thoughts, has short term memory deficit, or can't speak clearly because of neurological deficits ("brain fog"). Imagine a person who has seizures, spasms and twitches. Imagine a person who has lost their sense of smell - or has hypersensitivity to smells. Imagine a person who cannot speak, or cannot speak above a whisper. Imagine a person with a feeding tube, IV medication, and oxygen. Imagine living in a world where things coming in and things going out don't happen. Take a good look. This is ME/CFS at the core. My friends in the UK call it ME. It is worth noting that all ME/CFS patients are on a continuum, shifting whimsically up or down the scale over the years.”
Incidentally these severe patients have measurable abnormalities that characterize the illness.
I have written about the film Voices from the Shadows here. Allow me to quote one part of this review.
“And yet the film does focus on "those who do not back away" - the caregivers. These caregivers are trying valiantly to save their loved ones, but the stress is in their eyes, in their movements. It is a very difficult position to be in, to chose to move in close and support the very ill patient. Moments of interchange between the caregiver and patient are excruciatingly poignant and painful. This illness is terrible for the patients. It robs them of much of life's normal activities and interaction, and yet the caregiver, in his or her giving, suffers terribly also - and this film delivers that message. A properly balanced interaction between caregiver and patient - something that is extremely difficult to get right - is depicted with extraordinary sensitivity by these filmmakers.’
"Natalie Boulton has also done us a great favor in writing and editing her fine book, Lost Voices, a gathering or set of stories and pictures of severely ill UK ME patients. The book was published by InvestinME in 2008. It gives the clearest picture currently available of this illness, and is the most valuable resource for coming to terms with its reality. Otherwise there are various videos on youtube made by patients, and by the providers of these very sick patients. Many of the older videos that I viewed years ago - ones that were quite frightening to me - have disappeared off the internet. Soon we will have additional contributions in this area, and they will be welcomed for what they are - clear documents of the core of this ME/CFS illness.
This, of course, is not an easy subject. It is a delicate issue - this severe private illness that takes place in darkened rooms - and from many points of view. But I think we have to have the courage to put pictures and videos - with clear explanations - out into the world in order to show the serious consequences of this illness. This illness needs a face, a real face.
I was in the conference hall in London several years back when Dr. Kenny de Meirleir showed videos of desperately ill, bed bound patients in Norway. The video was extreme, showing a patient lying in a bed in a darkened room, with a feeding tube, wearing a blinder and ear protectors. The sheets were suspended above the patient due to intolerance of the weight and pain of the sheets. It was a riveting, terrifying video, an image straight out of Dante. At the same time, Dr. de Meirleir had a young woman speak about her "walled up" sister, who she had not seen in four years - even though they lived in the same house. It was easy to sense that this presentation shocked the audience, an audience consisting of patients or those familiar with the illness. It was as if Dr. de Meirleir had done something inappropriate. But for me, it was a revelation, and that moment has percolated in my mind ever since.
How can this illness be presented to the uninformed - doctors, researchers, journalists, friends and families - in a profound way? I think you have to go "to the core". It is like going inside of the smashed nuclear reactor and viewing the exposed fuel rods.
Certainly, at the moment, the face of this illness has not registered with the public at large, and listing a long list of symptoms is not going to cut it. I want a video in my hand that depicts the "very bottom" - a video that I can hand to Dr. Harvey Alter and say : "Dr. Alter, take a look at this." - and hand it to any number of people with the same intention. There is a need to provoke people into the recognition of the true devastation that this illness inflicts on patients - and caregivers.”
Such were some of my comments from the past. If I ever had a conspicuous idea about this illness it is to study the severity of it. Hopefully things are about to change in this regard and I will write more about this soon.
In the meantime, I have five or six ME/CFS friends who have made substantial improvement in the last few years. Most had the illness at a moderate to serious level and were disabled in one way or another, suffering serious consequences to their lives. Each of them pursued various avenues to betterment and there was no commonality to what brought them to some betterment - and a couple to substantial betterment. No commonality, and yet they have the same illness. Their diverse treatments included antibiotics, acupuncture, Valtrex, methylation supplements, uv light therapy, thyroid regulation, dietary changes, Chinese herbs, jin shin jyutsu, ozone therapy - and cannabis. Each had to find their own path through trial and error. This is an important bit of information.
Yesterday I read this article, which I found of interest.