Bringing the Heat: An ME/CFS Blog From Phoenix Rising

January 24, 2011

Bringing the Heat: An ME/CFS (Chronic Fatigue Syndrome) Blog From Phoenix Rising

XMRV Buzz Jan 18th and 20th

Posted: 22 Jan 2011 05:59 PM PST

Dr. Mikovits Talks – Part II - we now have two accounts of Dr. Mikovits talk. Lannie has finished up her account and a Carnes has provided her overview as well. As often happens both contain bits the other does not. a reported Dr. Mikovits said that 30% of adolescents who have tested positive for XMRV will go on to develop a severe case of infectious mononucleosis (glandular fever in some countries) and will not recover; ie will go on to develop CFS. Dr. Mikovits also reports that, while ARV's have not been the silver bullet hoped for, that as patients on them do improve a bit – antibodies to XMRV start showing up – indicating that their immune functioning has improved. Most people on ARV's, however, have not improved. If you've improved on Rich Van Konynenburg's methylation protocol – you'll probably be happy to see it recommended and others might want to give this pretty unexpensive option a try.The WPI has found two variants of XMRV – one of which, if I got it right, is similar to the pMLV's Alter found. Retesting has shown that about 30 & of XMRV positive patients have both. The list of diseases XMRV has been found in has grown and grown and now includes FM, Lupus, Lyme disease (very strongly), peripheral neuropathy, autonomic neuropathy, some lymphomas, MS, Parkinson's, ALS, dementia….This report appeared to come from a medical practice that is testing its `neuro-immune patients' but apparently not others so there is no information on it prevalence in non neuro-immune disorders. The most exciting statement was Dr. Mikovits statement that with regard the second-guessing that she `expects the politics will go away shortly'

Dr. Mikovits and Annette Whittemore Talk in Santa - Lannie has provided a nice overview of the first part of Dr. Mikovits, er Annette Whittemore's talk (Annette had to step in for a bit when Dr. Mikovits plane was delayed). The dangers of sample freezing were mentioned again….could such a simple (but perhaps overlooked) factor be causing the negative results? We also heard that XMRV infection rates in families seem to be evenly split between men and women and a closer look at those original samples found a second strain of XMRV in about 30% of them. For more check out the overviewhere.

The Canada Studies – a Key Figure Shows Up? - in the look at the year ahead in CFS a set of very interesting Canadian XMRV Studies were missed. These studies, done in full communication with the WPI, were started last July and involve Dr. Stein, Dr. Tyrrell and Dr. Houghton at the University of Alberta.Dr. Houghton is an intriguing figure. He was nominated for the CFSAC panel last year by the CFIDS Association of America and was accepted. He kind of snuck in under the ME/CFS Community's radar but he may be the most celebrated researcher yet to serve on the panel. A former Lasker award winner for the discovery of hepatitis he was described in this way by the Pres. of the Univ. of Alberta.

" Houghton's discovery of the hepatitis C virus is one of the most significant biomedical breakthroughs in the last 20 years. His work is the foundation of research to improve and save the lives of millions of people around the world. Having him as part of our already impressive team of scientists and the recent establishment of the University of Alberta's Li Ka Shing Institute of Virology together propel the University of Alberta to the forefront of research into virus-based diseases."—Indira Samarasekera, president, University of Alberta

He has no background at all in CFS and Kim McCleary was pleasantly surprised he accepted their offer. He was quite intrigued by EBV connection at Science Day and clearly touched by some of the stories and openly talked about wanting to get the pharmaceutical industry involved in a study. In the past year he received the Canadian Excellence Chair for Virology and he joined the newly established Li Ka Shing Institute of Virology which received $75 million dollars in grants at the University of Alberta. In his interview he talked about doing three things; two involved hepatitis C (170 million people around the world are infected) and the last was uncovering new viruses at play in diseases. No mention was made of CFS or XMRV but he is involved in the Alberta XMRV studies. In any case, connections do matter and one wonders if Dr. Houghton might have gotten connected to CFS at a very opportune time.

His presence at the CFSAC panel is an illustration of the increasing prominence of many of the members. With Dr. Lipkin, Dr. Singh, Dr. Holmberg and an HIV head at the Univ. of Pittsburg all nominated to the panel (by the CAA – no other nominations are known, if any were received) hopefully more major figures will soon be joining Dr. Houghton.

Related posts:

XMRV Buzz – The Buzz From Spain, Dr. Mikovits Branches Out The Buzz From Spain – Cristina Montane relayed a report...

XMRV Buzz: Racaniello Retracts/ Jumps In/Retrovirologist `Superteam' To Form Rebuttal/Annette, Judy on Nevada Newsmakers Dr. Racaniello Retracts Statement About XMRV and CFS – showing...

XMRV Buzz (11/28) – Dr. Cheney, BWG Meeting, Newsweek…. Dr. Cheney Reports - in his latest newsletter – or...

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Be-ing and Accepting (Quality of Life Blogs #2)

Posted: 22 Jan 2011 05:55 PM PST

In an exploration of be-ing it pretty quickly becomes clear that we are never alone in this world…we are always, always `in it' with something. Whether it's how our body feels or our thoughts about the person at the grocery store or the dishes in the sink or our general situation we're always in the world `with something'. We're always in a `dance' with something.

The Right vs Wrong World – Generally we interpret what we are in a dance with by deciding if its right/wrong. If it's right then we're OK with it but if we're in a `dance' with something that we interpret is `wrong' our minds go into overdrive – registering complaints, anger, frustration, etc. about something they believes shouldn't be. We protest, we get angry, we feel hopeless……we basically struggle like a fly on pin against this something that just shouldn't be there….but is..ME/CFS and other chronic illnesses obviously provide an enormous amount of ammunition for that.

It's an understandable reaction… It is, after all, indisputably `wrong' to be ill and `right' to be healthy. Being unhealthy was not supposed to be part of the picture. But does saying so again and again help at all? Or does it tie us up into more knots of frustration and anger? And deflect us from the grace of just being? How can you just `be' with something that you're committed to having be wrong? You can't.

You can make the argument, on the other hand, that anything that is is perfect…Why? Because it is….. In fact according to people who have experienced it enlightenment is simply accepting that everything is just the way is and is not the way it is not.

In this scenario pain and illness are not necessarily `wrong'…In part each is an inevitable part of existing in a highly complex physical body in which things can and do go wrong. Being with strangely functioning body is an inherent part our experience as humans. In his experience off enlightenment Alan Watts `got' that the world, including the dark sides of it, was perfect just the way it was. Werner Erhard, whom I am more familiar with, built his work out of a similar experience.

"To the individual thus enlightened it appears as a vivid and overwhelming certainty that the universe, precisely as it is at this moment…is so completely right….the mind is so wonder-struck at the self-evident and self-sufficient fitness of things as they are, including what would ordinarily be thought the very worst, that it cannot find any word strong enough to express the perfection and beauty of the experience"Alan Watts

Another Choice – That kind of experience obviously doesn't exist in a right/wrong world. We always have the opportunity to choose to interact in a different manner. What if we interact with the problems in our lives – and everybody has many of them, sick or ill – on the basis of whether we accept their presence or not? Instead of assessing whether an event is right or wrong we can, if we wish, choose to asking ourselves whether we can `accept it' or not? Can we allow it `to-be?' That orientation has the possibility of making us alright with the world just as it is -which is probably a valuable thing to do – given that the world is not likely to change itself on our account.

Included in that possibility is the possibility that we aren't willing to accept or allow things to be – which is fine as well. It doesn't work to make accepting things the `right' thing to do. The point is see if interacting into the world in this way is helpful or not. Does it increase one's quality of life?

If you let something be it will let you be

West vs East – Particularly for those of us in the West this seems backwards. In the West `acceptance' has connotations of weakness. We are, after all, the doers….we don't accept things – we fix them and that way of be-ing in the world- that there is a fix for a problem – is a superlative accomplishment of the West. It is an accomplishment , though that leaves us absolutely flailing when we find something that we can't fix. We are a first world country in terms of knowing how to fix something and we are third world country in dealing effectively with things that we cannot fix.

If you're in the West and you have a medical problem that cannot be fixed – you may actually be in worse shape mentally than if you're in a poor third world country – because we have not developed have the mental tools to accept situations like that. We've never really developed the muscle of `acceptance'. Doing so almost goes against our grain as human beings.

Accepting/Not Accepting in ME/CFS – Accepting does not mean throw out the `fix-it' ethos. Accepting one's condition does not mean one cannot take actions to change it and there are certainly actions to take – seeing Doctors, reading books and communicating with people. But while those actions have been taken (and while they are being taken) it may be that the most fruitful thing to be done with ME/CFS is to accept it…..again and again and again and again….

Happiness is accepting what isWerner Erhard

If I accept something I can be with it – which is probably a very valuable thing to do in a condition that, in part, is characterized by increased activation of the fight/flight response. This is a disorder in which getting riled up has few benefits. This is probably a very good disorder to practice `acceptance' in.

The Past Week – Over the past week I have engaged in the practice of `accepting' everything that comes into my life. I don't argue with anything…I don't rail against its appearance….I consciously accept everything…and it's helped….

I walk into a store..my shoulder hurts – I accept it and move on…..the organic cabbage is really expensive, I feel my system start to protest……I accept that…..as I walk along I think how behind I am on a paper…I accept that I'm behind…there's five people in line…..darn….I waver..and then accept that the line is longer than I had wished ……I feeling fatigued–I accepted that instead of protesting it and I relaxed…my thirty year history with ME/CFS — -I'm not quite ready to accept that – so I accept that I couldn't accept that yet and move on

And so it goes -over and over again…the first couple of days were mostly about accepting painful or disturbing body sensations. As I went on it got a bit deeper and I starting noticing moods and thoughts. I, for instance, feel kind of amped up …..I decided to call that `worry' which may not be entirely accurate, but something about it was right, though, because distinguishing and accepting I was in state of `worry' helped some of it to fade. Being able to distinguish my mood – and name – and accept it allowed it to fade. Distinguishing is an important tool that Buddhists use as well.

We do not notice, and therefore do not take into account, what is omnipresent. And therefore, your various already-always-listenings are difficult for you to discern for yourself. They are, so to speak, hidden from you. And what you don't distinguish runs you.

I found that when I let these things be- when I saw what they were, brought them up to consciousness and accepted them…they tended to let me be. Those things I couldn't accept -I accepted that I couldn't accept them….Things weren't a bed of roses but I was more relaxed – me and the world have made a bit more peace this last week.

Interestingly as I continued to accept the bad stuff over the next couple of days….at times good things began to come into my frame….. – I accepted the beauty of a tree I had never noticed….the dark tones of my Rooibos tea and the steam swirling off it in the sunlight……I accepted the beauty and richness of that….something I would not have noticed before. Acceptance was unexpectedly moving me into a deeper appreciation of the world – into just be-ing in the world.

I love the imagery of drops of water dripping into a huge underground cistern of calmness and acceptance and by practicing and practicing acceptance I can slowly fill that cistern up. If I don't practice and allow the everyday judging and rightness and wrongness will remain. But I think if I practice I can very slowly replace that one with a happier and somewhat healthier one. …

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