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Article: Report From the OFFER 2010 Conference

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I put a sticky on the back of my driver's license (which says I'm an organ donor) that I will donate for XMRV research only.
 
Dr. Singh's study with participants all giving blood at the same time and with identical handling and blinded analysis, especially in combination with her autopsy study, should answer a lot of questions.
Agreed.

One member of the panel thought the age of CBT was probably over and that future behavioral approaches to ME/CFS would focus on mindfulness training aka John -Kabat-Zinn and awareness training to try and bring down the autonomic arousal a bit.
Hah. Replacing one pseudoscientific technique with another...
 
I feel like crap when I try that kabat-zinn meditation tape stuff......grr, all good n fine for some but its a way to put responsibility back on patient, which is fine, but if you have a retrovirus ya hope for a little more help from yr doc too.....
 
I'll let you know what I learn as I have raised this topic, not with Dr. Singh but with Dr. Bateman's clinic (I've instructed my wife to leave my body at the clinic, either over night or on a weekend :worried::ashamed:). The Univ. or Utah has a body donation program but it dose not appear to be geared towards something as specific as naming a particular research topic or scientist.
Hi, Rrrr, Hi, CBS:

I'm a patient of Dr. Bateman's, as well. I'm also an organ donor, and worried about it. I would be happy to leave my body to ME/CFS research...maybe the University of Utah could start a program specifically for ME/CFS patients to leave their bodies to Dr. Singh.

I'm a little worried that the delightful receptionist at the Fatigue Clinic might be freaked out if I just had someone drop me off after hours...
 
I put a sticky on the back of my driver's license (which says I'm an organ donor) that I will donate for XMRV research only.
Hi, Laurel:

Did you have to change anything with the DMV to make it so the sticky will be honored?
 
I enjoyed your post. Help me understand what your saying about doesn't progress past a certain point. I know my illness has increased in severity for the past five years and I've had CFS since 1986. I'm now recliner or bed bound most of the day.
Thanks. :sofa:
My own orthostatic intolerance has very slowly increased over several decades. I now count the number of hours I can spend upright, sitting or standing, to decide if I am getting better or worse. In my case this has been so slow doctors try to blame everything on natural aging, even when I was down to two hours upright a day.

What I was thinking about concerned the neurological disease, and common medical distinction between progressive disease and remitting/relapsing. If you want an authority on this, consider Dr. Komaroff's statement that the neurological disease in apparently not progressive. From the patient's standpoint, deterioration can continue, which suggests to you the disease is progressing. This is likely due to complications, including secondary infections and their consequences. A secondary viral infection of heart muscle could have very bad effects, but it could be treated separately and would not be counted as a progression of infection by the original virus.

On those high-resolution MRI scans showing 'unidentified bright objects' in the brain, the multiple scattered punctate lesions may come and go, but they generally do not grow as large as in MS. Infections in the brain are serious matters. When a progressive infectious disease reaches the brain, the downward spiral can be dramatic. I've been trying to come up with an explanation for how a disease can go far enough to produce those small lesions and stop without (usually) continuing all the way to dementia and death. The fact that you are discussing this on-line indicates at least part of your illness has not progressed in that sense.

A continuing infection affecting the central nervous system to a limited extent over a period of decades is not something modern medicine generally expects to see. This is another way ME/CFS breaks paradigms. Doing so also reveals which assumptions amount to rules of thumb and which are based on actual understanding. I'm afraid considerable contemporary expertise does not involve much thinking.
 
Did you have to change anything with the DMV to make it so the sticky will be honored?
It matters much more that your next of kin know your wishes and/or that you have all these things taken care of in your will and other end-of-life documents. Your driver's license saying you are an organ donor really only matters in the absence of ANY other information about your wishes - the hospital would have to get permission from your next of kin for organ donation anyway.

http://www.medscape.com/viewarticle/552691

DMV organ donor designation has increased the number of organs available for transplantation, according to the researchers. However, DMV designation is not legally binding, Dr. Christmas reminded meeting attendees, and 20% of families in this review refused to honor the donor's wishes.

"Many family members are hesitant because they don't know the patient's wishes," Dr. Christmas commented. "This can be important to know [ahead of time] because it may affect end-of-life care. Discussion after the fact may not be helpful.
 
Hi anciendaze

I was thinking of starting new thread but I have limited information, so I didn't think it worth it. The Bond University study in Australia has found putative bio-markers that are still present six months later. They have a paper that is being submitted for publication. I have nothing more I can add - I am not even in their study.

I too think there is huge problem with biochemical and neurological noise in evaluating CFS. So many systems and pathways are disturbed that I suspect there would be thousands of such pathways in many patients, they key is in finding pathways that are usually stable over time.

I do think that some pathways are more critical than others. If we can identify enough critical pathways, we should be able to devise strategies that correct them. However, who with long term CFS hasn't heard of/experienced multiple treatments that seem to help and then stop working, or even become a problem? Could this be because they are treating noise, and not causal pathways?

Bye
Alex

There have been problems finding biomarkers that have bothered me for some time. What you have said here is sufficiently close to something I've predicted that I'm going to go out on a limb and state a wild idea which has been kicking around my head for a while.

It is possible for even a small idealized system to exhibit chaotic behavior. This makes it unusually sensitive to perturbations. It can have periodic behavior of any period, and switch periods dramatically for no apparent cause. Over a long time it can look completely random, even though it is deterministic.

Instead of having a nice simple model with noise introduced by outside interactions we could be seeing a model which is inherently noisy, even if you narrow things down to a minimum. If this is true, the noise we have been rejecting as bad data may be the most significant part of the signal. The pathology could start with XMRV infection introducing a limited amount of noise into biochemical signalling.
 
It matters much more that your next of kin know your wishes and/or that you have all these things taken care of in your will and other end-of-life documents. Your driver's license saying you are an organ donor really only matters in the absence of ANY other information about your wishes - the hospital would have to get permission from your next of kin for organ donation anyway.

http://www.medscape.com/viewarticle/552691
Thanks, urbantravels. I shall stop worrying about the possibility of becoming an accidental organ donor.

Kim
 
Great reading Cort - and much understanding of the processes.
 
I also recall (semi-comatose) that Viruses take years to unravel and an eminent Biologist saying this is the Century of Viruses - how lucky we are to have many eminent "on the case".
 
There have been problems finding biomarkers that have bothered me for some time. What you have said here is sufficiently close to something I've predicted that I'm going to go out on a limb and state a wild idea which has been kicking around my head for a while.

We tend to look for a kind of Platonic world with clear and simple behavior complicated by the ugly complexity of external reality. In some cases this works fairly well. I'm beginning to think this is one where it does not.

This makes a great deal of sense. While I would like to have a simple disease with one root cause which will be solved by a magic bullet, that's a lot to hope for. Nature is not so generous for the most part.
Even if -MRV is to the disease we have I suspect that it is not the whole story. For example, what % of people come across whatever virus family is involved and clear it like a flu? It's said that most people recover within the 1st 6 months, but after that complete recovery becomes increasingly rare. So maybe co-factors ... or just luck ... must be present for the immune collapse & neurological smackdown to develop.

I can an M.E like episode lasting a couple weeks and then clearing (diagnosed as a "mono-like illness) with no obvious effects afterwards, and a period where I'd have brain fog suddenly arrive, stay a few hours and disappear without a trace. No PEM then and I did not have ME/CFS - exercise felt good and produced results. But maybe one of those episodes was wrestling with this virus and clearing it??

It just seems like there is less true science in medical research and more atomized thinking than the subject - health of actual people - demands. Focusing on a molecule is useful if the goal is to develop a drug, but what about understanding how the whole immune system works and how to heal it? The molecule at a time model has real value - e.g. discovering the polio virus and creating a vaccine for it but we still can't heal the people who got polio before the vaccine - they're mysteriously wearing out decades later after recovering from the initial attack. From the outside, not being personally involved in either research or politics I get the feeling that this isn't about healing. Not at an individual level - there are researchers who know and care about actual people, but at the level of what's driving the research. I have a nagging feeling that this may turn into a vigorous campaign against some virus family but NO cure for people who are sick now.

Am I imagining something or do we need to set up a banner at NIH "It's the humanity, s-- err, smart folks".
 
Thanks much Cort for this remarkably comprehensive written article. Regarding Spinal Cord Compression Subset mentioned, I thought I would copy and paste a recent post I did which seems applicable to this topic.

Best Regards, Wayne
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Originally Posted on 10-23-10 by Wayne from This Thread

I suffered with chronic intense pressure and pain in my head for years. To me it felt like my head was inside an anvil. I did three significant things that have reduced this chronic pain by about 75% over the past 2-3 years.

1) I went to a chiropractor who did cranial/sacral work. He gently tried to move my "locked-up" cranials with limited success. Since that didn't work, he used a technique (not sure what it's called) where he inserted a balloon-type device into my sinuses and inflated it. This caused my cranials to finally "unlock". This was a huge step for me.

2) I had a one-time alignment of my atlas (uppermost cervical vertebra) using a technique called Atlas Profilax; sometimes spelled Atlasprofilax. It was an even bigger step for me than the cranial sacral. I posted extensively on my experience at the time on this thread entitled,

"Atlas Profilax Worked / is Working Very Well for Me".

3) I had an asymptomatic root-canaled tooth extracted and replaced it with a bio-compatible bridge. It not only reduced my headaches, but my chronic nausea as well.

Headaches can be caused by so many things, but I would highly recommend you consider seeing an Atlas Profilax practitioner ($250 for a one-time alignment). The atlas alignment they do is unlike any other. I suspect many on this board have chronic pressure on the 12 major cranial nerves exiting the brain stem and which pass through the atlas. This can cause so many problems. For me, I discovered it was a major contributor to my headaches.
 
Thought I would post another item that I think could be relevant to the Spinal Cord Compression Subset. This is an old post of mine on the ProHealth board a couple years ago.

Best, Wayne
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4/1/08 1:44 PM Bio Cranial Therapy - Major FM Relief Story - AtlasProfilax

Hi All,

I just started researching Bio Cranial therapy in the past couple of days and am getting a similar feeling about it that I first got with Atlas Profilax (from which I eventually experienced remarkable results). The similarities between these two modalities are that they both address structural issues (in different ways) in the cranial/upper cervical area. The following is the first paragraph of a story about a woman's amazing results with this therapy, written by her husband Mark Ridder.

"My wife has suffered with debilitating Fibromyalgia for 9 LONG YEARS of chronic pain with virtually no relief. Thanks to God’s good grace, she has recently found miraculous relief from debilitating and disabling pain." This link will take you directly to this couple’s remarkable story.

In this story, Mark Kidder describes their excruciating ordeal with doctors and therapies of all sorts over a 9-year period.. A therapy called Bio Cranial therapy finally gave her relief from her pain. She is now apparently back to full health. What’s remarkable is that this therapy only takes a few minutes to perform.

I researched Dr. Stuart Marmorstein's (D.C.) website (this woman's Bio Cranial practitioner) the past couple of days and have been impressed with this man and his approach to wellness. His focus on addressing structural imbalances in the Atlas and cranial areas is very much in line with my own success with Atlas Profilax.

But Bio Cranial therapy addresses imbalances differently by affecting the very tough sheath surrounding the brain and spinal cord called the dura mater. This dura mater can become constricted and cause all kinds of pains. Because of its proximity to the pituitary gland, it can also adversely affect our endocrine system. Dr. Marmostein claims to have completely cleared up his own long standing hypothyroidism from having this therapy done.

Dr. Marmorstein posted a 15-page article on his website entitled “How to Get Better...Really Better...with the Head to Foot Approach”. You can go directly to this .pdf file by clicking here. If you choose not to read the whole article, I would suggest at least going to page 10 where he discusses the nature and importance of the Dura Mater.

I've long had an interest in the "structural" aspect of ME/CFS and FM. I think for many to most of us structural problems are a contributing factor, for others, it is a big factor, and for some of us, it can be a huge factor. I feel I belong in the latter category, based on my own experience with Atlas Profilax, and various kinds of cranial therapy.

There's much more to this, but I would encourage anybody who has had an interest in Atlas Profilax or other types of gentle upper cervical chiropractic methods, to do some research on this modality. I expect to follow up on this further, and will post more as I learn more.

Regards, Wayne
[This Message was Edited on 04/04/2008]
 
No cycles to break

I'm always fascinated by how circular ME/CFS is. What I mean by that is how many of our symptoms are caused by our symptoms. For example, pain creates tension. Tension creates more pain. Pain stops sleep, bad sleep leads to exaustion and pain. So much seems to depend on breaking those cycles.

Last week I started a very gentle yoga class sponsered by the Irish ME Trust. I've done yoga for years but now I can just do the gentle stuff. One woman who had never done yoga had a look of wonderment on her face at the end of the class, she wanted to take the teacher home, hopefully that meant some cycle was broken or at least interrupted for her.

As with many of us I'm sure, I get well meaning friends and family making 'suggestions' of what to do to get over this. I always say now that in an ideal world....if I had the money I'd not work, line up therapists, get some seriously good nutrition in a warm climate. Of the people I know, those who have managed to cut that work stress seem to stabilize to a greater degree and don't seem to have so many peaks and troughs.

Paddy
Pardon my scientific nerdiness (I know you were just taking in general but I thought I would point out a few things that might be helpful to understanding the physiology of these illnesses.)

Although the cycles you mentioned may be the case for most "normal" folks or folks with other diseases, in our case we are actually MORE susceptible to stress due to the easily stiffening muscles (can you say "lockjaw light"; from micro-circulatory dysfunction) and the loss of stress fighting hormones over time (when your body is running on glycogen and adrenaline because it basically cannot use aerobic energy sources, the body ramps up adrenaline production to compensate and this is likely the source of the shrinking adrenal glands found in research.) Due to these things we are more susceptible to stress and tend to avoid at all costs. But we generally are not in the typical spiral of stress and worsening symptoms that most would expect; if anything it's the opposite because we would get so much worse quickly (when even smiling hurts you can imagine what happens when we get stressed.)

The pain is really caused by two elements: the micro-circulatory dysfunction causing our muscles to accumulate and load up with metabolic byproducts (a lot like the idea of having lactic acid in the muscles but on overload/hyperdrive) and the hyperalgesic component (light, sound and general hypersensitivity, etc.) which is centered in the brain (mostly in the dorsal horn where sensory info passes from the spinal cord to the brain.)

More and more I have come to think that the CNS dysfunction in most ME patients is a secondary, ischemic phenomenon caused by the blood flow issues in the rest of the body and the excitotoxic damage in the brain that results in hyperalgesia, and the micro-seizure that causes the alpha-delta wave sleep anomaly and all of the cognitive symptoms is actually a result of the circulatory problems and not the cause (although I do think this mostly applies to virally mediated ME and may not be the case with some subsets such as Lyme; with direct CNS infection.)

This may also explain why folks with spinal stenosis also have FM. It could very well be that the pressure on the dorsal horn of the spinal cord is causing the hyperalgesia (and cognitive symptoms) whereas in ME, it seems more likely that we have a "bottom up" caused ischemia that affects the dorsal horn. This is also the part of the brain most affected during meningitis and encephalitis (possible due to swelling like with spinal stenosis but I haven't confirmed that yet; but it is known that there is dysfunction regarding TNFa in the dorsal horn of meningitis and encephalitis) which explains why seem to be so many similarities between ME and these other infectious illnesses.

Between the diastolic cardiomyopathy and the resulting micro-circulatory dysfunction (which also secondarily causes problems with blood pressure when we go into the "raggedy ann/andy state--which is similar to what happens to an athlete when they "hit the wall" or "bonk" with corresponding loss of blood pressure and energy due to running out of glycogen; i.e., "neurally mediated hypo tension" should be called "metabolically mediated hypo tension" because the loss of blood pressure is actually caused by this process of running out of gycogen,) we are not getting enough blood flow to the brain and this has major consequences. This is most likely why ME is an infectious disease but it is not working in the normal infectious immunological manner, the infection primarily affects the heart and everything else follows from there.

I hope that helps understand how the disease works a little more and helps explain that in many ways, the normal physiological processes that one would expect to be at play are not happening or occurring on ME and in many ways are often the opposite of normal. It's because of the physiological damage that we have less ability to tolerate stress, not anything inherent. Everything we can do to minimize stress is good; it just isn't going to help as much as just keep us from getting worse (I'm sure I'm preaching to the choir here, but hey, what the heck.) Salutations, K.
 
Hi, Just to give the flavour of the complexity in this, there are more than two causes of pain in CFS - I suspect there might be dozens if not hundreds, but at least a few anyway.

Circulation and central nervous dysfunction are only a part of it. We have increased sensors for pain and fatigue in peripheral tissues (remember the Lights' research?) and we have increased usage of inflammatory hormones - which will induce pain directly. How many such hormones - many I would say, we don't know enough to say more yet. And all this without touching on nerve damage, or spinal sensitization etc.

This is very very complex, and we wont have a complete answer in the lifetimes of the long-term patients, but we are likely to have some answers very soon.

Bye
Alex
 
synapse13 - I found your explanations very interesting. I've long thought that blood flow is one of our problems.

What do you think of CCSVI as a contributory factor in ME and the so-called 'Liberation treatment' as a therapy?

Jenny