Cerebral blood flow is reduced in CFS as assessed by arterial spin labeling

[Lee Ann]

I recently saw a doctor at Vanderbilt. They have a dept that specializes in dysautonomia. They are supposedly the best. I had been told that I had pots and wanted to have a second opinion. I am still waiting on my results. I tried to explain to the doctor (like many times before) that I could literally feel my fatigue in my head. Something is happening or not in my brain! It is REAL. I suggested a SPECT scan to see if my blood flow is abnormal. That went over like a lead balloon. Why don't these people listen? The only relief I seem to have is when I am lying down. Does anyone else experience this?

 

[Lee Ann]

During the beginning of my multitude of lab work, I found that I was B12 deficient. I really do think that played a part in my reactive EBV rearing its ugly head. Who knows how long I had been deficient since doctors never include B12 in a workup. Knowing what I know now about B12 and its importance, I have my children tested.
For about the first 6 or 7 months of B12 injections, my body returned to it's glorious self. It was temporary but it was heaven. Now after a year, I do not get the same effect. It's a total drag.

 

[Sushi]

Hi Lee Ann,

Sounds like you are getting some good testing but we really need docs who can pull all the pieces together and try to make some sense of it. Unfortunately, there seem to be very few--and though the Vandy dysautonomia docs are diligently testing their own theories and finding some things, I don't think even they are willing to look at the whole picture.

For instance your low B12--it is very complicated and not an isolated phenomenon that can be fixed by just taking B12. It is likely that you have a partial methylation block (there are threads about this and RichVank is the expect scientist on board with us here re: methylation). Most people with ME/CFS do (all that have been tested so far).

Keep probing, keep reading. I think the WPI researchers found that most of the people who were positive for XMRV were carrying multiple (like 50?) other viruses.

This is not a one-cause syndrome but more like the row of dominoes falling down. Every abnormality is related to other things and it really takes out-of-the box docs to try to unravel it. No one has full answers yet, but this website publishes anything new almost as it is happening.

Stay tuned and chin up!

Best wishes,
Sushi

 

[Lee Ann]

Hello sushi,
It is VERY difficult to find a doctor who wants to play the role of detective. I haven't found one. Even though I have seen countless (14 I think)
it seems helter skelter. How do you go about being tested for the methylation ? I've been tested for everything else so what's one more.
Thanks for your info

 

[pictureofhealth]

Hi, Dolphin, lono and the group.

It's true particularly in CFS research that the researchers usually don't try to interpret their observed results in terms of a comprehensive model for the pathogenesis and pathophysiology. Most of them are specialists in some particular subfield of biomedicine, and they tend to comment only as their results relate to their subfield. Frankly, most of those who are doing CFS research do not have a broad enough scope in their understanding of biochemistry and physiology to have the confidence to attempt to interpret their experimental results in more global terms.

I have interacted with many of the CFS researchers at the IACFS/ME conferences, and have tried to encourage them to look at CFS more globally, but have not had much success. I think there are several other reasons why they don't do that. One is that it is risky. If you are a professional researcher making your living from it, you need to keep the grant money coming in. To do that, you need to be able to show some results each year, and get them published in peer-reviewed journals. To make sure this will happen, it is safer to propose to do something you are sure you can do, and that is familiar to the editors and reviewers of the journals in which you hope to publish, and that often means measuring the same things you have measured before, but using a different method or doing it more precisely. So that is what is commonly done, over and over.

In my research, I have the advantage that I am on a pension and do not have to rely on grants being accepted. I can therefore take more risks and can take a more global view of CFS, to try to see how all the pieces fit together. If I were in their shoes, I would probably not have the courage to try that.

It can be difficult to get a global view published in peer-reviewed journals, because the editors and reviewers are not comfortable with this kind of thinking. Most of them have been trained in the reductionist approach to research, if indeed they have had any specific education in doing research at all. In this approach, one makes only one small step at a time. Hypotheses are one-liners, and the logic does not proceed until that one small step has been tested and proven. This is very slow, but sometimes it is the only thing one can do in a field where not much is known.

My background is in engineering and physics. In these fields, a "systems approach" to research has become more common, because these fields are relatively mature, and there is a large body of accepted theory that one can use to project one's thinking. With this approach, it is possible to develop more comprehensive hypotheses, making several steps at a time. This is what I have been trying to do for CFS, because I think enough is known to do this now. At this point, I think that the GD-MCB hypothesis is a fairly good working hypothesis, in that it appears to be consistent with or capable of incorporating essentially all the published research in CFS. Of course, I need to continue to modify parts of it as more is learned from new research, but I think the main essence of it is pretty solid at this point, though I would not claim that it is "scientifically proven," which is a very high standard.

A difference I've seen in switching fields is that in the physical sciences, when a researcher does something experimentally, and gets some results, it's considered an obligation when publishing them to try to explain them in terms of available theory, or to suggest a hypothesis to do so. In biomedicine, this does not seem to be the case. Researchers do not seem to feel any such obligation, and in fact, if they do suggest an explanation, they run the risk that the journal editors or reviewers will reject it, because they have been trained not to do this.

Another factor is that many of those doing research on CFS were trained as M.D.s, rather than going through a Ph.D. program. These are fundamentally different. M.D.s are trained to diagnose and treat patients, using approaches that are established and accepted as the "standard of care." They mostly memorize a large body of information, and are trained to use it over and over, and not to deviate from the way they have been trained. This produces a uniformity in medical care. If you have certain symptoms, most M.D.s will diagnose and treat you in the same ways. This can be a good thing for well-understood conditions, but it can be maddening if you have an illness such as CFS, which is not well understood and is not dealt with in the curriculum of medical schools.

A Ph.D. program, on the other hand, is designed to educate a person in analytical thinking and to give them experience in actually doing research. The recent interview of Dr. Burt Berkson, who has both Ph.D. education and M.D. training, is very instructive in this regard. There are some M.D.s who are able to make the transition from their training into being good researchers, but many of the M.D.s I have encountered who do research on CFS have very rigid ideas and very narrow scopes of thinking. It can be very frustrating to try to get them to think "outside their box," because they have specifically been trained to stay inside it. In their practice of medicine, if they deviate from the standard of care, they stand to lose their license to practice medicine, as enforced in the U.S. by the state medical boards, and in the UK by the GMC. The FDA, insurance companies, malpractice attorneys, and peer pressure also act to prevent independent thinking and action on the part of M.D.s (Note what Dr. Myhill is currrently going through in the UK.) It is really not fair to expect M.D.s to make this transition on their own, given their training and the regulatory environment in which they must work.

In fairness, let me also say that a person with a Ph.D. degree alone would not be a good choice for diagnosing and treating patients on a routine basis. They have not been trained to do that, and they are usually not aware of all the pitfalls that can be encountered, as well as not having memorized the detailed body of diagnostic and treatment information that M.D.s have available right off the top of their head. Also, of course, they are not licensed to do that. When I have a serious health issue, I go to an M.D., not a Ph.D., at least not first. I also pay a lot of attention to N.D.s, D.O.'s and various alternative practitioners, because I prefer non-drug treatments where possible.

Incidentally, I disagree with the commonly repeated statement that there are no good biomarkers for CFS. In particular, based on quite a bit of experience at this point, I would say that the methylation pathways panel offered by the Health Diagnostics and Research Institute contains a good set of biomarkers for CFS.

Best regards,

Rich

Thanks for posting this Rich. Its is a real eye opener and incredibly helpful.

I do think the medical mindset is incredibly traditional, 'tribal' almost, which seems strange in a professional world and they are very much influenced by peer pressure and focused on career development (to the exclusion of patient welfare in many cases).

 

[richvank]

Dr. Shoemaker's view on low cerebral blood flow

Hi, all.

Dr. Ritchie Shoemaker has recently published his new book "Surviving Mold." As part of his overall hypothesis for biotoxin/mold illness, he discusses capillary hypoperfusion. He believes that in biotoxin illnesses, inflammation of the blood vessels limits the flow of blood and thus the supply of oxygen to the cells of the brain. He has a series of tests and a series of treatments for biotoxin illnesses.

If a person has reason to believe that they have been exposed to a water-damaged building, such as from an unrepaired roof leak or plumbing leak, or a wet basement, either at home or at work, it would be a good idea to consider biotoxin illnesses as a possibility.

Best regards,

Rich

 

[lucy]

Sorry, I will be off cerebral blood flow topic, but what comes to my mind is related to ME/CFS research and papers.

I have been once reading a report about a case of chronic fatigue in 4 dogs. What is strange to me, that there have been no studies in attempts to induce fatigue-kind of illness in lab animals, such as mice. They do grow cancers, genetically modify them to have illnesses and test the medicine on them. They could surely try to induce chronic fatigue in mice and see if they improve with all the things we get to try, like antidepressants or antivirals.

Or should each of us buy a couple or more of lab mice, inject half of them with our supposedly infected blood and see how they do? I do not want here to insult animal lovers, mice are animals too and probably it would be a pitty to induce the same condition on them.
At least we could post youtube videos of our mice not doing full course of spin-running and sleeping all the time However, I am sure we should not use sloths as test animals.

 

[richvank]

Hi, lucy.

There have been some published papers in which mice were overexercised to try to simulate CFS, but I have my doubts about how well that simulated it. Until researchers have a better understanding of CFS, I think it will be tough to develop an animal model.

If the GD-MCB hypothesis is correct, inducing a partial methylation cycle block in a mouse would make him a good model for CFS. That could be done, but at this point, I doubt whether most researchers are willing to buy into this hypothesis. Perhaps in the future.

Best regards,

Rich

 

[leela]

Not to mention, much like in the macaque study, one may need to wait a very long time before recognisable or measurable signs of
the illness appear. It was not clear after what period the macaques were "sacrificed" for autopsy, nor was it clear by what means they determined that they showed no signs of "fatigue."

From personal experience, I "pushed through" long after getting sick, and even long after getting diagnosed; and while sleeping an awful lot during the early phase, spent a lot of time in denial about the limits on my activity. Unless one were measuring for specific markers, (and who knows at what point they even show up) you'd possibly have to be willing to observe your little mice for years before they started visibly pooping out. There'd also be the necessity to introduce other "triggering" pathogens/toxins, since this illness seems to universally be a
"salade compos" of bugs and critters. A complex situation, for any model, two- or four-legged...

 

[Cort]

Dolphin - what journal and on what topic? Good luck!!!

 

[Dolphin]

Dolphin - what journal and on what topic? Good luck!!!

I'll tell you off-list.
Thanks for the good luck - it took a lot of work and I'll be very disappointed if I can't get it published in some form.

 

[Enid]

Just think it would be marvellous if there were someone who could view "globally" with so much pathology findings in so many "systems". Thanks to PR we see it coming in - the brain, the endocrine glands, the heart/blood volumes, the digestive tract, muscle function etc. - that taken together (we know it all) that these findings should (like any detective - medical) reveal much in tandem.

 

[Glynis Steele]

As low blood volume is mentioned in this thread, I thought I'd send this link, about d-lactic, which states " Renal tubular reabsorption of lactate is reduced by increased urine volume. Oh et al. proposed that D-lactic acidosis may be more prevalent in volume depletion."

http://jn.nutrition.org/content/135/7/1619.full

Glynis

 

[slayadragon]

Hi, Dolphin, lono and the group.

It's true particularly in CFS research that the researchers usually don't try to interpret their observed results in terms of a comprehensive model for the pathogenesis and pathophysiology. Most of them are specialists in some particular subfield of biomedicine, and they tend to comment only as their results relate to their subfield. Frankly, most of those who are doing CFS research do not have a broad enough scope in their understanding of biochemistry and physiology to have the confidence to attempt to interpret their experimental results in more global terms.

I have interacted with many of the CFS researchers at the IACFS/ME conferences, and have tried to encourage them to look at CFS more globally, but have not had much success. I think there are several other reasons why they don't do that. One is that it is risky. If you are a professional researcher making your living from it, you need to keep the grant money coming in. To do that, you need to be able to show some results each year, and get them published in peer-reviewed journals. To make sure this will happen, it is safer to propose to do something you are sure you can do, and that is familiar to the editors and reviewers of the journals in which you hope to publish, and that often means measuring the same things you have measured before, but using a different method or doing it more precisely. So that is what is commonly done, over and over.

In my research, I have the advantage that I am on a pension and do not have to rely on grants being accepted. I can therefore take more risks and can take a more global view of CFS, to try to see how all the pieces fit together. If I were in their shoes, I would probably not have the courage to try that.

It can be difficult to get a global view published in peer-reviewed journals, because the editors and reviewers are not comfortable with this kind of thinking. Most of them have been trained in the reductionist approach to research, if indeed they have had any specific education in doing research at all. In this approach, one makes only one small step at a time. Hypotheses are one-liners, and the logic does not proceed until that one small step has been tested and proven. This is very slow, but sometimes it is the only thing one can do in a field where not much is known.

My background is in engineering and physics. In these fields, a "systems approach" to research has become more common, because these fields are relatively mature, and there is a large body of accepted theory that one can use to project one's thinking. With this approach, it is possible to develop more comprehensive hypotheses, making several steps at a time. This is what I have been trying to do for CFS, because I think enough is known to do this now. At this point, I think that the GD-MCB hypothesis is a fairly good working hypothesis, in that it appears to be consistent with or capable of incorporating essentially all the published research in CFS. Of course, I need to continue to modify parts of it as more is learned from new research, but I think the main essence of it is pretty solid at this point, though I would not claim that it is "scientifically proven," which is a very high standard.

A difference I've seen in switching fields is that in the physical sciences, when a researcher does something experimentally, and gets some results, it's considered an obligation when publishing them to try to explain them in terms of available theory, or to suggest a hypothesis to do so. In biomedicine, this does not seem to be the case. Researchers do not seem to feel any such obligation, and in fact, if they do suggest an explanation, they run the risk that the journal editors or reviewers will reject it, because they have been trained not to do this.

Another factor is that many of those doing research on CFS were trained as M.D.s, rather than going through a Ph.D. program. These are fundamentally different. M.D.s are trained to diagnose and treat patients, using approaches that are established and accepted as the "standard of care." They mostly memorize a large body of information, and are trained to use it over and over, and not to deviate from the way they have been trained. This produces a uniformity in medical care. If you have certain symptoms, most M.D.s will diagnose and treat you in the same ways. This can be a good thing for well-understood conditions, but it can be maddening if you have an illness such as CFS, which is not well understood and is not dealt with in the curriculum of medical schools.

A Ph.D. program, on the other hand, is designed to educate a person in analytical thinking and to give them experience in actually doing research. The recent interview of Dr. Burt Berkson, who has both Ph.D. education and M.D. training, is very instructive in this regard. There are some M.D.s who are able to make the transition from their training into being good researchers, but many of the M.D.s I have encountered who do research on CFS have very rigid ideas and very narrow scopes of thinking. It can be very frustrating to try to get them to think "outside their box," because they have specifically been trained to stay inside it. In their practice of medicine, if they deviate from the standard of care, they stand to lose their license to practice medicine, as enforced in the U.S. by the state medical boards, and in the UK by the GMC. The FDA, insurance companies, malpractice attorneys, and peer pressure also act to prevent independent thinking and action on the part of M.D.s (Note what Dr. Myhill is currrently going through in the UK.) It is really not fair to expect M.D.s to make this transition on their own, given their training and the regulatory environment in which they must work.

In fairness, let me also say that a person with a Ph.D. degree alone would not be a good choice for diagnosing and treating patients on a routine basis. They have not been trained to do that, and they are usually not aware of all the pitfalls that can be encountered, as well as not having memorized the detailed body of diagnostic and treatment information that M.D.s have available right off the top of their head. Also, of course, they are not licensed to do that. When I have a serious health issue, I go to an M.D., not a Ph.D., at least not first. I also pay a lot of attention to N.D.s, D.O.'s and various alternative practitioners, because I prefer non-drug treatments where possible.

Incidentally, I disagree with the commonly repeated statement that there are no good biomarkers for CFS. In particular, based on quite a bit of experience at this point, I would say that the methylation pathways panel offered by the Health Diagnostics and Research Institute contains a good set of biomarkers for CFS.

Best regards,

Rich

Hi Rich,

I think this is a really good summary of the differences between M.D.'s and Ph.D.'s, and about the dynamic of medical science in general and ME/CFS medical science in particular.

Why it is that so much more respect is often accorded to M.D.'s than to other scientists, I'm not sure. There's a sort of mystique about that degree that seems to hold people in awe. Insofar as M.D.'s act in a way that is even mildly within the bounds of acceptability, their opinions are accorded the utmost respect. Insofar as they act in a way that is outside the bounds of acceptability, there is an outrage that they have acted in a way that constitutes betrayal.

In ME/CFS, a very high percentage of M.D.'s act toward patients in a way that indeed is unacceptable, either by dismissing their concerns as less serious than they are, by misdiagnosing them or by offering them inappropriate treatments. This is so common that it's mostly ignored on these boards. On the other hand, the few doctors who treat ME/CFS patients in ways that are appropriate -- regardless of whether those treatments are effective -- seem to be accorded by many respect that suggests that they are in a wholly different and superior classification than anyone else who is studying this disease.

This is especially the case when it comes to the dichotomy between doctors and patients. Here on this board and on others, I very frequently see a quality of thought that seems to me to be at least equal to that of any of the "name" doctors who are studying and treating ME/CFS. But somehow, our "patient" status seems to carry with it a status of inferiority.

Certainly, doctors have specific training that many of us don't have. On the other hand, much of that training goes toward the memorization of existing information, not the ability to create new knowledge. In a field like ME/CFS, the ability to create new knowledge seems paramount.

This has been something that's been on my mind a lot recently, because of the fact that I often have a sense that I and others who are considering specific issues that haven't been much addressed by ME/CFS doctors are just "playing."

That word seems to me to be particularly appropriate, because it has two definitions. One is to "play with ideas," which researchers do routinely. But the other is the "playing" that children do, in ways that are not taken seriously.

This gets me to my core issue here. It seems to me that on these boards, people reflexively think of patients as "children" and M.D.'s as "adults." This becomes especially clear to me when I get outside the ME/CFS community and talk to other people -- certainly people in other academic fields, but even medical doctors who are not focused solely on ME/CFS. When I interact with them, I almost invariably feel like an adult. When I spend time on these boards or with ME/CFS doctors, I feel wholly like a child -- despite the fact that many of the people on these boards (despite whatever cognitive limitations they have) know far more about this disease than at least 99.99999999999% of doctors and just as much as the rest.

This, I think, applies even to patients who actually are M.D.'s. A case in point applies to Jamie Deckoff-Jones (M.D.), who chose to share her experiences on the Internet. People outside the community, including in the news media, seem to have accorded her the respect that they would any other professional in any field. However, within this community, Paul Cheney (M.D.) felt free to publicly criticize her sharing her experiences with patients. I don't think he'd have done that if he'd been thinking of her in the category of a doctor who was treating patients with ARV's, rather than as a patient who was taking them. And the reason that he gave -- which was that other patients might be encouraged to follow her lead -- again suggests that patients are (as subtext) children who cannot make reasonable and responsible decisions for themselves.

This is an unfortunate disease, because it strikes many or most people before they have established themselves professionally. Thus, a lack of self-confidence is perhaps natural. But when even I -- who have no problem interacting with and being taken seriously by even medical professionals once I get outside this realm -- reflexively go into thinking of myself in the position of a child in this community, I have to think there's something very firmly "societal" in place.

Working to get past that seems important not just for me but for others here. I see on this board a great deal of knowledge that even those doctors who have devoted their lives to this field are wholly ignorant about. This most certainly includes information about the toxicity and methylation components of this disease, but a huge amount of other types of information as well. It thus seems to me that figuring out how we can get the information off this board and into the hands of medical professionals who might be able to learn from it, expand upon it in their research and apply it in their practices seems like it should be a priority.

"Systems biology" is a hot new way of looking at medicine, by the way. When Keith Berndtson (M.D.) first started talking to me about it, I was puzzled since it seemed to me that this should be the default approach. As I quickly realized upon reflection, though, obviously it's not. Hopefully that will change.

Thanks again for your thoughts.

Best, Lisa

 

[leela]

Lisa and Rich,

Both these posts express so clearly and effectively some very important points.
I thank you both for composing and posting these most excellent articulations.
How can we disseminate these thoughts further within the medical and research communities?
It comes to mind that a respectable alternative outlet needs to be initiated for publication of studies and theories that don't make the cut with the usual channels.

 

[Dolphin]

The Bulletin of the IACFS/ME is crying out for publications. It isn't PubMed-listed but is open access after a few months.
It would be a pity if it stopped because it could not get enough submissions.

They eventually hope to get PubMed-listed but probably can't do that without a reasonably big portfolio. Not sure if I've said this before on the thread but thought I'd give it a plug. Before that there was the Journal of Chronic Fatigue Syndrome but it was neither PubMed-listed nor open access. Unfortunately it no longer exists.