CBD

This post is preceded by 2 posts on sleep. These three posts are designed to be viewed together.

I started to get interested in medicinal marijuana about five years ago. There were a few examples of ME/CFS patients who used various marijuana medicinals for pain, inflammation and sleep.  Most resided in states where medical marijuana was legal or about to become legal.

Cannabis has over 70 cannabinoids of which the most well known is THC, the psychoactive part of the plant.  A second component or cannabinoid has recently received a good deal of attention. It is CBD or cannabidiol. CBD is believed to have various medicinal activities.

The Federal government continues to list marijuana as a schedule 1 drug. One very great consequence of this is that research into marijuana is severely and intentionally restricted. With more states legalizing marijuana, the bigger states are starting to do some research into this plant. Research continues in Israel, Spain, UK and Italy, but it is, predictably, underfunded.

Anyone who wants to engage this subject is going to have to proceed on their own, guided by trial and error.

In reality there are two allied plants, cannabis and hemp. Cannabis is loaded with THC, while hemp has very little. Both have a great many other cannabinoids including CBD, CBN, CBG, and CBDa.

CBD from marijuana has always been touted as the gold standard of CBD. Some propose that in order to be effective CBD needs to have a certain amount of THC with it. Marijuana CBD is restricted to states where marijuana is legal. It appears that Mary's Medicinals makes good products. 

About five years ago, there were only a few companies that produced CBD from hemp. These CBDs were legal, but their quality was challenged by many, including the marijuana CBD makers. Also the FDA objected to the claims of some of these hemp CBD producers.

It remains to be determined if hemp CBD is as good as marijuana. However, certainly things have radically changed in the last few years; there has been an astonishing amount of sophisticated hemp CBD that is available through the Internet. Hemp CBD is legal in all 50 states.

There is a growing body of positive anecdotal information of hemp CBD use, but there is very little of what one might call real science. This might change but I wouldn’t hold my breath. The main claim for both forms of CBD is that they reduce pain and diminish anxiety. Hemp CBD has been called “calming drops” by my own daughter.

The question remains. Will CBD be useful to ME/CFS patients? We are about to find out, as more patients are giving this a try. As with almost everything with this illness, the process is wholly trial and error. Additionally, every treatment must be individualized.

The present choice in high grade, organic hemp CBD is quite surprising. At one end one finds Mary’s Nutritionals pure CBD. This has been heated and refined to take all terpenes and additional cannabinoids out of the solution, leaving only pure refined CBD oil. This oil is at the expensive end of the spectrum. One can find similar CBDs at RSHO with their RSHO-X - no trace of THC, pure organic hemp CBD.  At the other end of the spectrum is raw unadulterated, unheated hemp CBD, also organic, some grown in the US.  A good example of this can be found at Nu-Leaf. These products have CBDa and CBD along with terpenes and all the cannabinoids in the hemp plant, producing what is referred to as the "entourage effect". The entourage effect is the supposed but unknown interaction of all the cannabinoids and terpenes working together.  In between, and cheaper, is a heated, partially refined CBD that can be settled on in various places. Read about this at Endoca.

As there are arguments as to whether THC is necessary to make things go, so there are arguments between the use of pure refined hemp CBD oil versus the raw plant oil with all the terpenes and host of cannabinoids that work together to create the “entourage effect”. The positive way to look at this is that there are many options to try.

In addition to oil, there are pastes, extracts, pills, crystals, gels and suppositories. This industry has exploded. Put a Google alert on hemp CBD and start reading.

The rationale for using CBD in ME/CFS lies in the thought that ME/CFS might be connected to an Endocannabinoid Deficiency. Here is an article on the Endocannabinoid system. Here is another one. Finally, here is an interview with Dr. Ethan Russo on CBD and Endocannabinoid Deficiency.

The study of the Endocannabinoid system can be said to have begun by the Israeli scientist Raphael Mechoulam with the discovery of the psychotropic cannabinoid THC in the mid-1960’s. (Dr. Mechoulam remains the foremost marijuana researcher in the world.) Further research identified the brain receptor CB1 in the early 1990s, quickly followed by the discovery of a second receptor CB2 located throughout the human body. With these discoveries the Endocannabinoid System was identified, leading to discoveries that this very system helps regulate a host of processes in the body - and the awareness that deficiencies might have some connection to chronic illness. 

With so many dysregulations and disconnects in this strange illness of ME/CFS, it is worth considering that these patients suffer also from Endocannabinoid Deficiency System. The supposition is that these deficiencies, these Endocannabinoid deficiencies, can be corrected – with CBD or other cannabinoid items. Certainly the symptoms of Endocannabinoid Deficiency seem to shadow ME/CFS symptoms.

There is additional study and use of other cannabinoids from hemp and cannabis for seizures, sleep, pain, anxiety, migraines, wound healing, and the rest. You name it and some cannabinoid is reputed to help treat it. THCa is in the raw cannabis plant. If one heats THCa it converts to THC. The straight marijuana plant can be treated in a cold fashion (unheated) - and the THCa preserved. THCa is a non-psychoactive compound, which is reputed to have many of the qualities of CBD. CBN is another interesting cannabinoid. CBN can be increased in the marijuana plant material by aging the main product, exposing it to sun and light for a long time – months. Converted into a medicinal, either a tincture or a salve, CBN is reputed to have high sedative effects. Others say that the sedative effect of this aged product comes from the aged terpenes. CBG is another cannabinoid that is gaining interest, also for the same properties – its calming and sedative properties.

My main interest at the moment is in these various cannabinoids as sleep enhancing agents. Not to beat a dead horse, but a good sleep sensor is very helpful in seeing changes wrought by different compounds in different arrangements. A pulse and oxygen saturation monitor also could be helpful, in conjunction with low-dose oxygen. A sleep sensor can separate out and determine sleep initiation, sleep duration, length of sleep entirety or sections of sleep. This can be immediately obvious and adjustments made based on the sensor readings.

So the world is working its way back to cannabinoids, which does not make everyone happy. There is a great battle going on, and it is not difficult to identify its outline and terrain. Where this will go we do not know. The surprising thing is that cannabinoids have been used as medicinals for thousands of years before being put out of business in the US in 1934 and then really put in the slammer by Richard Nixon in the mid-1970s.

Both ME/CFS physicians Paul Cheney and John Chia have used CBD with their patients. 

Here is an additional blog that has information on CBD.

What is written about is educational in nature. It is not medical advice. Please consult your physician (if you have one) for medical advice. 

IACFS/ME - and then Mission Delores

At the end of this year's IACFS/ME meeting I headed out on foot to the Mission District and to visit an old favorite: Mission Delores. Over the years, I have come here often, as well as many of the other missions up and down the coast of California. (The mission system was sort of the CDC of the late 18th and early 19th centuries)

Mission Delores and its cemetery are featured in a mistily mysterious scene in Hitchcock's "Vertigo" - one of my favorite films. I am going to watch it again when I get home.

The day was sunny and warm and the sweet smell of dope wafted through the air in the Mission District - as the locals were seeking their medicinal or medical improvements. Crowds of people flocked to a local park to see a concert of the Rollin' Snows or the Scoobie Doos.

The IACFS/ME conference ended Sunday afternoon. The IACFS/ME conference was four, very long days, running March 20-23. Always I find this conference too long - and too broad in its reach. I suppose I understand why the planners do this, as they have a large constituency to please or honor - but they include so many items that I consider to be auxiliary. To me parts of this conference are like watching a bad movie over and over - or falling to one's death off a very tall building.

I come to these conferences as an observer - to watch and listen. I don't think of myself as a participant, but more of an outsider or outlier. I am in the process of my own illness discovery. I figure that I represent my daughter, who cannot be here.

Over time I have learned to be very selective in going to lectures. This time I think that I went to five. I am happier just looking at the poster papers, and talking to old and new friends. This is my fourth IACFS/ME, and it functions as a touchstone of sorts. I just wish it were more focused. I have learned what a focused conference can be. I saw it at the Stanford Conference, I see it at Mt. Sinai, and I see it every year at the Invest in ME conference in London.

Am I giving a mixed message here? Yes I am giving a mixed message.

Dr. John Chia delivered two important talks. It has been seven years since Dr. Chia's pivotal paper was published showing enterovirus protein found in stomach tissue of ME/CFS patients. No one has followed up with this paper. It just sits there with its weight of ME history leaning on it. Meanwhile Dr. Chia continues his superb research - on his own, in virtual isolation. Dr. Chia gave two talks in a section on "Virology Research", chaired by Dr. Jose Montoya. (I hope that Dr. Montoya was listening.) The first talk was entitled "Chronic pelvic pain (CPP) in patients with ME/CFS is associated with chronic enterovirus infection of ovarian tubes" and the second was entitled "Pathogenesis of chronic enterovirus infection in ME/CFS - in vitro and in vivo studies of infected stomach tissue". Regarding the second study, "Of 24 mice injected with VP1+, and RNA+ stomach biopsies, 2 died in two weeks and13/20 (66%) spleen specimens tested positive for VP1 where 1 of 10 controls tested positive for VP1 by immunoperoxidase staining."

("If they do not believe in death, then what do they believe in?"). Of course there is the possibility that these mice died of sneezing fits - or committed suicide.

There was considerable interest during the question period and Dr. Chia answered a host of questions. He also made a hard-nosed presentation, and defense, of his research over the years, stating that "I have spent considerable time trying to convince people that I am right. Now it is time for others to prove that I am wrong". Perhaps soon we will finally be able to answer this question, whether Dr. Chia is right or wrong. I am betting on his being right.

Dr. Maureen Hanson's team gave a talk, "Plasma cytokines in ME/CFS patients and controls before and after a cardiopulmonary exercise test." Dr. Sonya Marshall-Gradisnik's team gave a presentation on NK cells. There has been a string of exciting research coming out of this lab.  Dr. Gradisnik will also be making a presentation in May at the Invest in ME conference.

It seemed a great oversight that Dr. Carmen Scheibenbogen was not giving a talk or a poster paper. I don't think she was even here. I could say the same about other UK or European researchers. Nothing was presented or mentioned about Dr. Joseph Brewer's recent work in mycotoxins. This seemed a slight oversight. Dr. Brewer made a recent presentation at the Lyme conference in October and will follow up at the next ILADS conference. So someone besides myself must know of his existence?

Where were research concerns involving gut ecology, the metabolome, mitochondria, lipid membranes (Yes, it was great to see Dr. Garth Nicholson's poster paper), mycotoxins and a host of important subjects? What world do these people live in? What illness are they studying?

The strength of this conference lies in its poster papers. This year there were several exciting presentations. I took note of Dr. Maureen Hanson's gut biome study in ME/CFS. Dr. Hanson will be giving a talk at the Invest in ME conference this May. She will be able to trade notes with Dr. Simon Carding, who is also working on a gut biome study in ME/CFS. Dr. Hanson reminded me that her colleague, Dr. Ruth Ley, works mostly in the gut biome arena. Incidentally, there seems to be a percolating effort to have ME/CFS patients do their biome study through Ubiome. The objective would be to publish their own biome study. Is this a good idea or what? - and it all sounds vaguely familiar.

There was another study out of Griffith University of the team of Dr. Sonya Marshall Gradisnik. Nancy Klimas and her group had an entire host of poster papers. I hope these poster papers become readily available.

The most interesting poster papers were two by Dr. Paul Cheney. Dr. Cheney has always contributed one or two important poster papers. One yearns for Dr. Cheney to be given a chunk of time to make a full presentation of his ideas. Dr. Cheney does best in three-hour slots of time, so he could have a morning session, a break for him to rest for a half-hour (but does he need it?), and then an afternoon session. This could go on for two or three days. And then maybe we could have a comprehensive conversation of what might be happening in this illness. But, of course, this is not going to happen. Instead we have to content ourselves with Dr. Cheney's self-published studies, and with Dr. Cheney's riveting explanations in front of his poster paper. He gives it willingly and repeatedly.

Asked what he does for his patients, Dr. Cheney says that "he stabilizes them".

I witnessed a few snippy engagements and comments, which are always interesting to me - and which I will keep to myself. I watched old adversaries be cordial and even respectful to each other.

The conference awards dinner had an especially good feeling to it. Nancy Klimas got a top award, which she certainly deserves. Dan Peterson gave the Keynote Address and took us on a stroll down memory lane. He described the history of IACFS/ME meetings, in the process recognizing many individuals in the audience, including Hillary Johnson, the gifted writer. Dr. Peterson showed a short video with 1990's video snippets of the early heroes in this struggle - Komaroff, Cheney, Bell, Klimas and Peterson himself. It was a hoot to see Nancy Klimas as a young clinician/researcher. This video was a lot of fun. Dr. Peterson has a special skill, either natural or developed, of getting the flow going in a positiive direction.

I was surprised, really surprised - and pleasantly surprised - to see Pia and Richard Simpson of Invest in ME receive an award. Never were there two people who have less interest in awards. Instead, they are interested in science - and money to fuel research. So if you have extra money, after giving to John Chia's EV Med Research, write a big check to Pia and Richard Simpson and Invest in ME.

Now that Richard and Pia have been recognized by IACFS/ME for their stupendous efforts, maybe the steering committee of the IACFS/ME group can select a group of "Important People" to actually make the journey to the upcoming Invest in ME conference - and thus learn a bit about how to organize a meaningful conference.

One thing that always, always irritates me about this IACFS/ME conference is the lack of attention to the severely ill. In fact, I have trouble connecting the severity of my daughter's illness with anything that happens at this conference. I do not think that most of the people who attend this conference have the slightest clue as to the true nature of this illness. They look at the half-sick, always at peak times, and draw their conclusions - if they only did a little more exercise.

And it is my belief that they do not want to know. I have observed the displeasure incurred by Dr. Kenny De Meirleir at an Invest in ME conference for presenting videos of very seriously ill patients from Norway, and for the testimony of a young woman who lived in the same house with a severely ill sister and had not seen her sister for four years. And then there is the whole anxiety about showing Voices from the Shadows. It is a very profound and great video, but it is seen as a downer. Well, this illness is a downer.

There is something so frightening about the core of this illness - from which almost everyone turns away. A little of this "ground zero"can be seen in Natalie Boulton's and Josh Bigg's extraordinary film. Dr. Montoya had the wisdom, the courage to show "Voices" at the Stanford Conference. (Dr. Montoya understands, he has learned this.) These totally isolated human beings hold the key - or a key - to the essential nature of this strange and devastating illness. Why are they not studied? Why does everyone turn away? Can we move forward if we are a bunch of cowards? If one is careful, blood, urine, saliva and feces can be removed from these patients (in some cases). If one wants to know what tests to do, I and others can tell you.

The efforts here at the conference and elsewhere to engage or embrace the severe ME patient is pathetic - really pathetic - and this means something.

Maybe this is all an age-related problem? Maybe I am just unable to see all the connecting parts at this conference and put them together? I will have to ask others, back in NY, like Jay Spero, if this is the problem, if this is my problem. In the meantime, I am in a hurry. I am not interested in the one-hundred year fix. I am less interested in stasis and more interested in dynamism, as reflected perhaps in what Dr. Skip Pridgen announced yesterday. Was Dr. Pridgen at this conference?

A number of serious clinicians did not go to this conference - Dr Eric Gordon, Dr. Kenny De Meirleir, Dr. Ritchie Shoemaker, Dr Derek Enlander, and Dr. Joseph Brewer. One has to ask why?

Mt. Sinai conference - Rich van Konynenburg

The upcoming conference at Mt. Sinai (on Sunday November 20, 2011) is a step in the right direction. This conference, the first of the new Mt. Sinai ME/CFS treatment and research center, embraces the serious exchange of treatment and research ideas in ME/CFS. There are some new names here, and we look forward to hearing from them. There are also some more familiar figures. The interaction should be illuminating.

The conference will start at 11 and will feature five half-hour presentations by Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. Eric Schadt, Rich van Konenynburg and Dr. Merriam Merad. After a lunch break there will be a panel discussion with the participants. (Judy Mikovits was scheduled to join the panel discussion, but will be "unable to make it" as she was arrested on Friday, November 18th in her hometown in CA on a fugitive from justice charge.)

I was pleased to see the name of Rich van Konynenburg among the speakers. Rich is an "independent operator" in the ME/CFS world - and one of the best. Over the years, he has developed a very convincing biochemical explanation for the part that methylation blockage and glutathione depletion play in ME/CFS. Rich has existed on the periphery for too long. He needs to be brought into the discussion. Rich is a welcome addition to this list of speakers, and perhaps this exposure will get some traction for his ideas.

I have followed closely the work of Rich for a good number of years now. Rich has presented poster papers at each of the major ME/CFS conferences (and at various other conferences). Once in a blue moon, he is actually invited to speak, and to present his thesis on the connection of the methylation blockage and glutathione depletion in ME/CFS. His ideas are firmly based in biochemistry and very well might play an important part in understanding and penetrating this illness. Certainly Dr. Enlander believes in the reality of methylation blockage, and his formula for treatment involves elements either borrowed from Rich's theory or coincident with it. Other clinicians also are paying more attention.

Rich's presence at the recent IACFS/ME conference was very noticeable, as he seems willing and able to talk individually with people without prejudice. He is on his feet all day of the poster conferences, presenting in a nutshell his complex set of ideas. Why he has never been given a time slot to directly address a conference session I will never know. His ideas need further exposure.

Here is a article by Rich van Konynenburg on Phoenix Rising. A revision of the original simplified protocol and a discussion can be found here. Discussions of the methylation protocol can also be found on various ME/CFS forums.

The first time I observed Rich van Konynenburg in action was at the 2007 IACFS/ME in Ft. Lauderdale. At that point, attendees to the conference could come to an open microphone and ask questions directly to the panels. In general the panel members "froze up" with the clarity and persistence of Rich's (and others) questioning. It was obvious that the "ability" of the panel members to engage unfamiliar territory was limited. Rather than trying to come to terms with what Rich was suggesting, they changed the format at the next conference to written questions - and in this way the organizers could control (and eliminate) the questions that were more penetrating or "difficult". This "technique" is used more and more today by important people who are averse to things "entering in". My response has always been, "Let's hear more from this fellow".

Recently, Rich gave a three-hour long lecture at a conference in Sweden. It is available online in three sections and they can be accessed in the following videos. I recommend viewing it in parts, as it is well worth watching.

Treatment for this complex, yet measurable, dysfunction is relatively simple, and can be found in various places on the internet. Rich himself engages on various forums, discussing with patients and advocates the specifics of his ideas, disassociating himself from giving medical advice.

It becomes obvious that his interest in ME/CFS is a labor of love. Certainly he cannot be accused of making money off of his idea, as he is always "on his own dime". Instead we find that his motivation to "get involved" is similar to many others in this field. He has a friend who has the illness.

Rich also is free of the usual entanglements - as he is neither an academic researcher nor an ME/CFS clinician. Instead his background is in electrical engineering. In his retirement, he has turned his fine mind onto the problem of solving or getting to the source of ME/CFS. Actually, like other important contributors to the mechanisms of ME/CFS (Dr. John Chia comes to mind here with his revisiting of older UK research of enteroviral involvement in ME/CFS), these ideas on glutathione depletion are not new, but borrowed from practitioners in autism. Rich had the insight to see the connection. We will all benefit from his insights.