Watching Harvey Alter, Judy Mikovits and John Coffin on YouTube struck me as life immitating myth. Spock, Kirk and the Klingon. Yoda, Skywalker and Darth Vader. God, Moses and Pharaoh.
Here is the tape of Dr. Alter as King Solomon, one of our dragon slayer, Dr. Mikovits, and another of Dr. Coffin trying helplessly to close Pandora’s box with this unbelievable statement: “I see the next step as leaving the virus that we know as XMRV behind.”
Dr. Coffin’s conclusions don’t make any sense to me. Let’s for a moment say he is correct and XMRV was created in the lab in the early 90’s. It is still a xenotropic MuLV related virus, capable of infecting human cells. Why does he think it couldn’t have infected humans in the lab and gotten out that way? Because there were sick patients before the event? A more likely explanation would be that there was already something else out there before this one. It’s not clean and neat, so let’s all close up shop and go home for another couple of decades. Even he said there could be another retrovirus. And why pray tell isn’t he looking for it? The patients have something consistent with retroviral infection. You won’t find it unless you look.
The discussion of the name is a sad one. I don’t have much of a stake in the name. I don’t mind CFS that much and I don’t think it’s going to go away. I think of the word fatigue the way materials, like metal, can become fatigued. I don’t like ME much either because I think it’s stigmatizing in another way. It implies we’re all brain damaged, encephalopathic, and I believe the damage is mostly reversible. I like non-HIV AIDS.
The case definition discussion also seems besides the point to me. My belief is that the presence of infectious retroviruses is the only true biomarker for the disease and we don’t know what is there yet. There are clearly XMRV negative people who are clinically indistinguishable from the positives. Those people shouldn’t be excluded from a diagnosis. Like Hep C used to be non A non B hepatitis, I think our disease should be called non-HIV AIDS. Personally I think that the people excluded by this or that set of criteria mostly do in fact have the disease. Another problem with definitions is that it is a relapsing remitting process. People who meet a set of criteria today, may not tomorrow (thank God).
Case definitions and new names aren’t going to save us. The only biomarker for the disease is the detection of the responsible retroviruses. For now, that is XMRV, but there will be more. Until then, we can only measure downstream effects, cytokines and NK cell profiles, inflammatory markers, a few other things that demonstrate how sick we really are.
Our down and dirty survey is producing fascinating unanalyzed data. We’ve already refined the questions slightly based upon what’s coming back to produce a more complete picture and thank you to everyone who has responded to requests for further clarification. We will report. For now, the impression from reading the surveys is that many CFS patients have family members with CFS and associated diseases. Please spread the word and encourage everyone with the disease to reply, whether you have an affected family member or not. If any statisticians or epidemiologists are interested in participating, please get in touch.
I thought this article about Google’s founder inspiring and relevant to our predicament: Sergey Brin’s Search for a Parkinson’s Cure.
>I will be curious to see if since Dr. Coffin feels our disease could have another HGRV involved or another retrovirus besides the retrovirus he knows as XMRV if he will be looking for that retrovirus. If he cares about patients you would think he would be motivated to do so.
Keith
>I found Dr. Coffin's Plea to patients offensive. I thought both Mikovits and Coffin were off-base, but I won't get into too much detail.
It sounds like Dr. Coffin does read blogs, and I emailed him as well. So if he doesn't read my email, hopefully he reads this.
Dr. Coffin was practicing pseudoskepticism. I don't believe that he is working for the common good, because if he was, he wouldn't use such tactics. His motivation is to shoot down XMRV as fast as he can. It is evident, and disgusting.
This is shameful and this should not be tolerated by patients, whether XMRV proves to be a contaminant or not.
http://en.wikipedia.org/wiki/Pseudoskepticism
In science, the burden of proof falls upon the claimant; and the more extraordinary a claim, the heavier is the burden of proof demanded. The true skeptic takes an agnostic position, one that says the claim is not proved rather than disproved. He asserts that the claimant has not borne the burden of proof and that science must continue to build its cognitive map of reality without incorporating the extraordinary claim as a new "fact." Since the true skeptic does not assert a claim, he has no burden to prove anything. He just goes on using the established theories of "conventional science" as usual. But if a critic asserts that there is evidence for disproof, that he has a negative hypothesis—saying, for instance, that a seeming psi result was actually due to an artifact—he is making a claim and therefore also has to bear a burden of proof.
– Marcello Truzzi, "On Pseudo-Skepticism", Zetetic Scholar, 12/13, pp3-4, 1987
My email to Dr. Coffin wasn't angry. It was sincere. If I got some type response from Dr. Coffin (I get responses from Judy), I probably wouldn't be as critical.
He says the comments on blogs make him hurt. He's the one initiating the political battle, so I say let it rain.
Advocates shall not let him shoot down XMRV until it is either proved or disproved!
>Adding to my comment above:
I thought Dr. Alter was excellent.
>Uhhh… nevermind?
I guess my comment was deleted?
Alright.
>Blogger has a spam filter that I have no control over. I don't moderate the comments, but put everything through.
Jamie
>Thanks for this, Dr. Jamie. I like your take on Dr. Coffin. However, I have to respectfully disagree regarding the importance of case definition.
No doubt XMRV causes illness. No doubt EBV causes illness, and no doubt enteroviruses, HHV6A, and a myriad of other viral, bacterial, and fungal pathogens cause illness. But in order to determine which pathogens are involved in which illnesses, we need to have appropriate case definitions.
Peterson's cohort, for example, had some very specifc manifestations. If the manifestations of that cohort cannot be explained by one (or a combination of several) pathogens, then those pathogens are not responsible for that disease..at least not entirely.
In that example case, without proper definiton, we may be identifying a pathogen and its illness-making architecture, but we are STILL not identifying the cause of that particular illness.
>Another fascinating blogpost. Thanks for your thoughts!
>fwiw- I encourage you to use the term for the disease that you like. Which is what I do. For now I like ME. I actually prefer non-HIV AIDS, though I haven't used it to avoid confusion with ICP, which is, as I understand it from Osler's Web, a subset of ME with low T-cells which was first called non-HIV AIDS. Ms. Johnson reported that it had it's official name changed very quickly by CDC to ICP in order to reduce public concern.
You could refer to it, for example, as non-HIV AIDS/ME/"CFS" (hereinafter "non-HIV AIDS"). I think it would catch on quickly and do us a lot of good. As I believe you agree, we aren't going to get much help until the public is concerned for it's own health (and noone's going to be concerned they might get fatigued). I would certainly very happily join you in the new nomenclature!
Best,
Justin
>Proofing that XMRV can be an lab-contamination is not the same as proofing that is a lab contamination. Furthermore, it does not disproof that people can be infected with XMRV and MLV-related viruses. And as he even points it out himself: It is relatively easy for this virus to spread, what leap of faith (or is it imagination?) is required to think that Gamma-Retroviruses jumped from mice to men? Maybe around ten thousand years ago, when humans started agriculture, and humans and mice were living closer together? Maybe 50 or 100 years ago, when humans started to culture viruses for vaccines? Or is this the problem? Because this line of thinking is disallowed?
And oh, I wanted to make one XMRV-unrelated point: I think there are other diseases from the CFS spectrum. I think the "alternative" diagnosis of "adrenal fatigue" might be gradual onset CFS. I think there are more "non-CFS" or "CFS like" diseases out there, that are either misdiagnosed, psychopathologized or dismissed by doctors. For now, focus on CFS and continue your excellent job, but keep in mind that there is more (I think you already have Autism on your radar).
And back to Coffin: It is awful how many doctors simply won't acknowledge what it means to have CFS. I haven't had contact with many doctors, but everyone either psychopathologizes me ("see a psych"), or thinks I'm deconditioned ("do some sport"), or both. I went to the department of infectious diseases here at the University of Hamburg (UKE), and I couldn't find someone who would at least look at the current research in CFS you guys are doing (or Klimas, or Montoya, or Komaroff, or, or, or, or). Three weeks ago I have written a short and precise mail to Nicole Fischer (who was a co-author on the 2006 XMRV paper and supposedly works to create a XMRV-Test at the UKE), but haven't received a reply…
>Something just doesn't make sense. It's a good thing Alter was there to slow Coffins rant down. Alter seems to be the only level headed one of the retroviralogists right now. He is willing to have the conversation with a true unbiased approach. I get the impression that Alter would like to believe the contamination camp and be out of the whole controversial mess but his gut instinct tells him otherwise. Coffin still couldn't come up with answers to many important questions if the contamination stuff is true so how do you say no more work is necessary on xmrv. Maybe his statement about another HGRV cross reacting is revealing. Once again showing both integration sites would at least settle the debate about it being a human virus. I'm looking forward to seeing the new gene mapping stuff by chronix. I couldn't believe how Mikovits was kicked around. Coffins ego is getting the best of him and Mikovits frustration is getting the best of her. Besides constantly having to defend her work she also seems to understand the patients situation so much better than most of the doctors there and like the patients is pissed off and wondering why they still dont try to do something. The one thing I took from it all was there will be no hope for treatment for a long time. I was not impressed by Bateman and her fatigue clinic. Reminds me of Tietelbambs clinic and I have wasted a lot of money there. I was going to try Ampligen but decided to wait because I thought the cavalry was on its way. We are still going to be POW's for a long long time. Guess I'm off to Tahoe.
>Another well-though out post, Jamie. I completely agree that Dr. Coffin's conclusion didn't match his data (whether you believe his data or not). It almost seems as if he has gotten caught up in the controversy and isn't thinking like a scientist anymore.
As for the name, I agree there, too. I don't like "the f word" because it is so inadequate to describe the flu-like lack of energy we feel, but at this point, the name CFS is actually becoming more well-known and recognizable. I don't like it, but I think finding the root cause of our illness is more important than what we call it. ME would be fine with me…if people knew what it meant.
I don't think that non HIV-AIDS is quite accurate, either. AIDS stands for Acquired Immune (or Immuno-) Deficiency Syndrome. With CFS, our immune systems aren't strictly deficient – it is a complex immune system dysfunction, with some parts underactive and some parts overactive. So maybe we need a new name that reflects that somehow. I would be happy with any name that includes mention of immune dysfunction because that seems to be at the heart of our illness.
Glad to hear your informal survey is going well. Are you familiar with the family study that the NJ CFS Association conducted in 2006? They were the first to show conclusively that CFS occurs at a higher rate in families and household members and hence has both genetic and infectious components. Here's a summary:
http://www.prohealth.com//library/showArticle.cfm?libid=12013
Can't wait to hear the results of your survey!
Sue
>"it is a complex immune system dysfunction"
You mean immune deficiency?
I can understand why one wouldn't want to see themselves as immunodeficient. It's a scary label to carry around.
I wish it was legal for doctors to use dark field microscopes. I, myself, am loaded with intracellular organisms (seen in RBCs and WBCs). Antibiotics seem to help clear it up and help with symptoms to a point, but doesn't get rid of infection. I mean, the slide goes clear, but if I stop, everything becomes parasitized again.
I doubt I am unique, but thanks to our overlords, I don't think many have the chance to see the severity of the situation themselves.
Some think it's a all a bunch of reactivated viruses. Well, it's both bacteria and viruses (of course I don't know if this is true in all cases). If what I see isn't a immune deficiency, I don't know what is. My white blood cells are worthless.
It seems like not usually lethal AIDS if you ask me. Like AIDS, it seems that it may take one or more pathogens to activate CFS. Other than a different set of biomarkers, I see more similarities than differences.
>Jamie – I just about dropped my laptop when I read your preferred name for ME/CFS! ha ha
I have been reading several books on the amazing similarity of AIDS and ME/CFS and was, to be honest, stunned!
I do think the illness needs to be renamed. Not because it will help get a causal link or research moving but for those suffering with the illness. ME or CFS is not recognized by the VA. I can't tell you how many times I have been told they don't believe in it.
I have had treament at civilian hospitals stopped the minute they find out I have this illness.
I recently had a paramedic laugh when I mentioned I had ME/CFS and then start commenting on my breathing issues in whispers so I could not hear him, all the while chuckling and laughing. It was absolutley humiliating. But I tried to not allow it to bother and focused on trying to stay calm until my breathing was righted.
So for me the name is very important and a credible name with education for doctors is a number one priority.
I think those who see doctors or specialist who understand and believe this is real, don't struggle as much with the name. However, for Vets or those of us who don't have that ability, the name allows us to be mistreated, demeaned, and creates a barrier to adequate and appropriate treatment.
I really appreciate your honest and your willingness to continue to connect with us here and to share your perspective.
I'm always amazed how the internet has provided this incredible family and connection for so many of us here.
>Great article once again. Thanks,Lynn
>I think it is essential to identify the subsets within the current umbrella term (thanks to psychiatric "thinking") and then address the naming of each illness. Only by moving forward from the current position can we make any progress, and this is why we have been stuck in muddy water for the last 25 years.
>I agree with A. Robertson's view. I think it will be very important to try to clearly identify subsets. For example, post-exertional illness is a very striking and terribly bizarre and disabling symptom that likely would help with identifying a subset that may constitute a distinct disease. Likewise, those with overactive immune systems (like me: I haven't had a cold in 7 years, despite having young children who go to school) must be different in important ways from those with immune deficits. Orthostatic intolerance is another example. These sorts of factors could help us to identify completely different illnesses, or could just be variations of one illness, but we certainly don't know yet.
>What strikes me about many people who post comments, here and elsewhere, is how many have multiple medical conditions, which seem to vary quite a bit from person to person but commonly include the likes of chronic Lyme D.
Apology if I've got this wrong, but if I read one of Ali's recent posts here correctly, Jamie has lost a bit of her intestine and (if I haven't misunderstood one of Jamie's posts) Jamie also has some difficulty swallowing.
While it seems likely that Jamie knows perfectly well what effect these extra issues might create for her (e.g. intestinal surgery might compromise absorption of some nutrients, and difficulty swallowing is a symptom of several medical conditions that are not related to ME/CFS), and she is sure that they are not contributing to her poor health, one can assume that less-than-vigilant medicos don't bother about possible additional contributory factors when their patient has ME/CFS.
Take a look at this horror story about the effects of gastric bypass surgery for one previously healthy young woman:
http://backacrosstheline.blogspot.com/
Note: I'm not suggesting this is the surgery that Jamie had, but it's a sobering story nonetheless.
It also seems to be fairly common for PWC to have a history of poor health, or regular infections, in childhood.
I seem to have one of the "purest" cases of ME/CFS I know of. No co-infections/conditions, (unless, of course, its discovered I have a retrovirus; I'm saving my pennies on that test until its better validated), no history of childhood infections.
I think identifying subsets is essential, even if the subset simply identifies groups of people with similar co-conditions. These conditions must have potential to influence outcomes in studies, one would hope a control group would be selected that had the same condition/s (minus the ME/CFS) as the subjects.
I'm personally not for the name "non-HIV AIDS", at least not until its certain a retrovirus causes the pathology and causes immune deficiency. Maybe one of the subsets will end up with that name, but IMHO AIDS has been a curse of a name for those with HIV; why would we want to attach the acronym to our condition?
The link to the article "Sergey Brin’s Search for a Parkinson’s Cure" was first posted here by Justin on April 6, 2011 8:58 PM, in the 'Informal Family Survey' post. On 7 April 2010 I posted a comment in three parts (due to its length), but only one comment was published until today (the other two were caught in spam folder I presume). Some of you might find the info interesting; it took me quite a while to compile the comment, so I'm keen for my effort not to disappear into the ether.
>Thank you Jamie for another great article!
The link you posted on Parkinson's research by Google's cofounder is fascinating as well – long but worth reading.
Most pertinent bits:
" Brin is after a different kind of science altogether. Most Parkinson’s research, like much of medical research, relies on the classic scientific method: hypothesis, analysis, peer review, publication. Brin proposes a different approach, one driven by computational muscle and staggeringly large data sets. It’s a method that draws on his algorithmic sensibility—and Google’s storied faith in computing power—with the aim of accelerating the pace and increasing the potential of scientific research. “Generally the pace of medical research is glacial compared to what I’m used to in the Internet,” Brin says. “We could be looking lots of places and collecting lots of information. And if we see a pattern, that could lead somewhere.”
In other words, Brin is proposing to bypass centuries of scientific epistemology in favor of a more Googley kind of science. He wants to collect data first, then hypothesize, and then find the patterns that lead to answers. And he has the money and the algorithms to do it.
… “It just goes to show that when you apply our newfound computational power to large amounts of data—and sometimes it’s not perfect data—it can be very powerful.” The same, Brin argues, would hold with patient histories. “Even if any given individual’s information is not of that great quality, the quantity can make a big difference. Patterns can emerge.”
Brin’s tolerance for “noisy data” is especially telling, since medical science tends to consider it poisonous. Biomedical researchers often limit their experiments to narrow questions that can be rigorously measured. But the emphasis on purity can mean fewer patients to study, which results in small data sets. That limits the research’s “power”—a statistical term that generally means the probability that a finding is actually true. And by design it means the data almost never turn up insights beyond what the study set out to examine.
Increasingly, though, scientists—especially those with a background in computing and information theory—are starting to wonder if that model could be inverted. Why not start with tons of data, a deluge of information, and then wade in, searching for patterns and correlations?…"
>Why would we want a subset CFS or some vague umbrella term? ME is a valid, independent established dx that has the features that most are describing. What is important is to remove ME the CFS associations. ME/CFS will only continue to confuse and misrepresent.
>In my opinion, the best 'name' for this illness is CIDS: Chronic Immune Dysfunction Syndrome, because, well, that's what happens when one becomes ill. Your immune system becomes dysfunctional.
This is well documented in CCC-defined cohorts, and M.E.
>Unfortunately Dr. Mikovits probably doomed any future possibility of ANY funding from the CDC or NIH when she lost her cool and told Natelson his wasn't "a good study" because it was based on only 2 samples.
Totally unnecessary, very disappointing and extremely unprofessional.
>Anonymous, If people lost funding when anyone "lost their cool" about something, no one would get funded. Happens alot. Why wouldn't she get annoyed when he was trying to use this as proof positive – and it was on 2 samples. Getting annoyed for a valid reason should not be used against anyone. Actually, taking it all into account (and things like the like the bogus contamination theories), I think she has demonstrated remarkable restraint.
>————————————–
Understanding Chronic Fatigue Syndrome
ChronicFatigueSyndromeSupport.com
06-06-2003
…
By Jill McLaughlin
Chronic fatigue syndrome (CFS) disproportionately affects women, but
has long been under-recognized and under-diagnosed. CFS is now one of the most common chronic illnesses of our time. It is also one of
the most misunderstood. Private and government research is shattering many misconceptions, showing chronic fatigue syndrome to be a major public health problem.
Although there is no known etiology and no known diagnostic marker, there is substantial objective, well-documented evidence of central
nervous system, (CNS), immune, endocrine, cardiovascular, and autonomic nervous system abnormalities which indicate that CFS is
biologically, not psychologically, determined.
The leading model of CFS pathogenesis is rooted in scientifically identified abnormalities in the brain (central nervous system) and
the immune system, both of which affect and alter the function of the other.
-Jill Mclaughlin
>Erik, Of "some" CFS. Which, 8 yrs later, has proven the point that it has not worked. I and others do not think that it will work with XMRV either, which currently is the main concern. But what is really being described *in this article* should not be labeled/diagnosed as CFS, as people continue to report they are being dismissed, laughed at and written off as nut cases. We've had this discussion many times, most people understand the situation and context and I will not disrupt the rest with the continuation of it.
>Jill,
I hear rumors that "ME" has not achieved universal belief by it's mere utterance.
Do you consider "ME" to have similarly "failed"?
Is is within your power to "move on" from something you once "understood",
and now say that it cannot be?
>I don't think it's a good idea to call this disease non-HIV AIDS. First of all AIDS was first used to define the disease caused by HIV. Secondly there are some diseases that were once called non-HIV AIDS, they are essentially CD4 T cell lymphopenias. I don't think you can generalize all CFS cases as CD4 T cell depleted. Moreover as the recent research shows CD4 T cells are not the only cell type that are subject to killing by HIV, so AIDS is a more complex disease than just CD4 T cell depletion.
>Erik,
ME is not a belief, it is a recognized disease with a history of well defined outbreaks. CFS is a belief – a collections of symptoms which may not relate in any meaningful way or may relate to almost anything.
Nothing will happen by the mere utterance, only by recognition and education and removal and disassociation from the false CFS constructs, which is what people are objecting to with this new round of ME/CFS nonsense.
ME has not failed, we have failed to do the above.
Of course we can move on from that which has not worked or where we understood one part but the other part continues to undermine our understanding.
>Jill, for the umpteenth time, "CFS is a syndrome", a concept clearly laid out in the very beginning of Osler's Web… where you can't miss it:
Page 6.
"a syndrome is a collection of uniquely presented symptoms and physical signs for which a cause has yet to be found. A disease, in contrast, is manifestation of illness for which medicine has an explanation".
By your logic, AIDS would have been a "belief" before HIV was discovered.
And despite your "belief" that ME is different because it's not a syndrome but a "disease"…. I ask you.
Do you KNOW the cause of ME?
>Do I know the cause of ME? Well I would say that I probably do know the cause — XMRV. *Didn't say I could prove it — yet :)
It will not be the cause of many cases of CFS (as CFS is a mixed bag of many different fatiguing illnesses/conditions). This is what muddies the waters and derails us. So lets say we must be as specific as possible and properly recognize those with ME and properly diagnose, test and treat them.
But regardless, there are many diseases for which the cause(s) are unknown.
>It would be great fun to watch you explain to the Nobel Prize nomination committee, how you'd like to see Dr Judy win it, despite that little thing of finding XMRV in a "belief" rather than a real disease.
—————————————-
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits1,†
+ Author Affiliations
1Whittemore Peterson Institute, Reno, NV 89557, USA.
Abstract
Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines after their exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.
>I like “Non-HIV AIDS” as a new name for CFS. Granted, some parts of the CFS immune system are overactive, not deficient, as Sue Jackson points out (See April 11, 2011 7:59 AM). However, that ought not to preclude the designation from consideration. It would seem that the immune system’s overall deficiency in excluding and destroying microorganisms warrants the name, irrespective of its underactive and overactive components. Non-HIV AIDS denotes that urgency and grave concern are in order, reactions that the label "CFS" fails to inspire.
>Erik, Don't worry, Dr. Judy is well aware and understands the problem with CFS.
It was found in some cases of CFS. But CFS is so broad, others will have different things in there, so it isn't a real disease.
But if a retrovirus won't do it… how many media reports were watered down to things like "virus found in chronic fatigue." We just cannot get any traction with anything.
>There was never problem with "understanding CFS".
It was all laid out quite clearly in Osler's Web, so anybody who wants to know what CFS is can easily do so. Anyone could have asked the prototypes for the syndrome too. It's not like everyone has died or disappeared.
The only problem is in "ethically challenged" individuals who attempt to fight the CFS pioneers by saying that CFS is not what they say, not a neurological illness, or even has anything to do with the entity CFS was based on, but can be anything that anyone else believes it to be.
The only thing that is confusing, is why confusion-spreaders conspicuously reveal themselves to be driven by a dishonest agenda, when they are so easily seen for what they are by anyone who reads Osler's Web.
Don't such "people" CARE about their inevitable unveiling?
>Ever since the moment this "CFS" syndrome was created, I dreamed of a place where science prevailed and straight out FACTS dominate the discussion.
If not HERE, then WHERE?
>Jamie writes, "Let's for a moment say he is correct and XMRV was created in the lab in the early 90's. It is still a xenotropic MuLV related virus, capable of infecting human cells."
Jamie, that says it all. Keep fighting for all of us!
>i found the discussion on definition to be one of the most important of the conference, but unfortunately, it was just that, a discussion. I thought, why aren't they putting a small working group together, because without it, all the studies are basically worthless. then i thought, and who would be on that group and what would their agenda be? and then i didn't think anymore and felt hopeless. it's hard to feel hope for the future when we're subjected to the likes of the two days at nih, and the stress of it all just made me feel sicker.
>you said there was probably something before the 1990s? do you mean XMRV or another retrovirus?
Thankyou.
MECFS sufferer.
>Let's screen my blood at the location of Dr. Coffin's choice with today's standards. XMRV shouldn't be an issue, right? Then I would like for Dr. coffin to accept my blood transfusion. Would he be 100% confident to accept my blood? At 38 YOA I entered the "body for life fitness contest" and reached a fitness age of 18. At 39 YOA I became pregnant. At 41 YOA I became sick with no explantations. At 44 I mitral valve heart repair and went right to fulltime disability pension post surgery. The symptoms continued to get worse and now at almost 5 years disbaled and 49 YOA, this past 6 months got even worse. It was only this Jan 2011 I was diagnosed for CFS, though they belive it started in 2002. My VIPDX blood labs have not returned yet. Any guess what you think their gonna find, still want my blood now Dr. Coffin?
>"What strikes me about many people who post comments, here and elsewhere, is how many have multiple medical conditions, which seem to vary quite a bit from person to person but commonly include the likes of chronic Lyme D."
Ignore the CDC. CFS is multiple medical conditions.
Look up what can cause a sed rate of 1 with a number of infections and inflammation. Well, as far as I know, the only thing that can cause a sed rate this low is idiopathic cardiomyopathy and sickle cell anemia. Of course CFS isn't listed because according to our wonderful government, there are no biomarkers (what a joke!).
Whether it's really Lyme disease, Rickettsiae, Chlamydia pneumonia, etc, the herx reactions can be very similar so one could easily mistake one for another. And it may be hard to identify the culprit, because in my opinion, our antibody responses to each can we quite wonky.
It is of my opinion that once there is an effective treatment, we're going to see unanticipated moderate to severe IRIS reponses due to the large number of pathogens. I don't think CFS patients or even doctors for that matter even understand how infected they are. If they want an idea, just take a large dose of something broad spectrum (against viruses and bacteria) like monolaurin and see if it doesn't knock their socks off. Of course when it does, they will probably call it a bad reaction, allergic reaction, or something along those lines.
>Osler’s Web
Antecedent Epidemics page 215:
Canadian clinician Byron Hyde reported in the fall 1989 issue of his newsletter to sufferers, “To my knowledge, there are only five diseases that have a pathological low sedimentation level: myalgic encephalomyelitis (the British, Australian, and Canadian term for the chronic illness) sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia, hyper-fibrogenemia.”
—————————————-
The zero sed rate was the first abnormality to be picked up by Dr Cheney and Dr Peterson during the '85 "mystery illness" epidemic, because this was part of a standard blood panel.
Dr Peterson told me "Doctors are taught that the lower, the better, but a ZERO sed rate is too low. This is an abnormality".
-ErikMW
>ErikMoldWarrior:
Was your sed rate zero way back when you first became ill, and if it was, did it rise beyond zero once you figured how to avoid the triggering "stuff" and became much more functional?
Anonymous April 16, 2011 10:10 AM:
One of my Drs, who has good knowledge of ME/CFS, has many ME/CFS patients, a member of Drs own family has the condition, Dr doesn't think ME/CFS is psychosomatic, nor due to laziness etc, etc, etc, i.e. Dr doesn't dismiss symptoms lightly (most of Dr's patients have good opinion of Dr) and on and on and on ….
(It's a shame we need to "prop up" the source of any form of information that 'true believers" might disagree with, lest the message become lost in a tirade about how the messenger is an incompetent idiot who knows nothing.)
This Dr worked for some time in isolated aboriginal communities in outback Australia where STDs (including Syphilis) are common.
A few years ago (not sure about current situation), the Dr enabled those ME/CFS patients who wanted to try the MP to do so by provision of requisite scripts. I opted not to try the MP.
I mentioned one day to Dr how many of those that were on the MP talked about all the Herxing they were having. Based on Dr's experience in aboriginal communities, Dr didn't think the ME/CFS patients (the ones that were Dr's patient) experienced genuine Herxheimer reactions. When you give someone with Syphilis antibiotics you see a genuine Herx reaction.
>Yes, right from the get-go.
Haven't looked, but that would be a good one to know.
I had hoped to get some help researching this, but that appears to be an unreasonable thing to ask, judging by the quarter-century of absolute refusal.
>Jill said: " CFS is a belief – a collections of symptoms which may not relate in any meaningful way or may relate to almost anything."
If that isn't insulting, I don't know what is.
Doctor, I need to make an appointment. I have a belief.
>"Although there is no known etiology and no known diagnostic marker, there is substantial objective, well-documented evidence of central nervous system, (CNS), immune, endocrine, cardiovascular, and autonomic nervous system abnormalities which indicate that CFS is
biologically, not psychologically, determined."
I have some problems with this logic. (although I can see why it is said -so often)
Firstly an illness could be psychogenic and cause a myriad of physiological symptoms in all the systems mentioned, namely central nervous system, immune system, gastrointestinal system, endocrine system as well as cognition, memory and emotion. Technically one cannot rule out that ME or CFS or non-hiv aids, (whichever name you prefer) is not caused by psychological processes (in full or part).
The evidence SUGGESTS that (AT LEAST IN SOME CASES) (IT) is an immunological dysfunction which in turn causes many disturbances in other systems.
Even if the illness(or subset of it) is shown to be caused by psychological processes (cognitions) (behavioural responses to stress) it does not mean that:
1. the illness can be cured by psychological processes such as cbt or psycho-supportive actions, such as physical exercise.
2. the person caused their own illness.
3. the illness is all in the mind or imaginary
4. psychological research into cause will get us anywhere. Psychological research into this illness set should be focussing on the symptom parameters in order to better define the "syndrome" Just as Leonard Jason is doing. Psychology cannot hope to identify the cause of this illness – even if it is psychogenic.
5. the illness in all its subtypes is any less of a disease than AIDS
The syndrome (ME) (CFS) etc is nothing but a set of symptoms with some of the people showing biochemical markers which indicate immune dysfunction which in turn causes cns etc symptoms and some signs of physiological abnormality and unusual (co)infections. The more biochemical and physiological markers we find the better. The stronger the association with pathogens the better. The stronger the association with toxins (such as pesticides) the better.
These symptoms are real and very disturbing. What concerns me is the Medical response to this ailment. That is deeply disturbing to me. If the illness is psychogenic then it is even more disturbing to see the medical profession behaving in this way to people with a serious disability – whatever its cause! This comes from a VERY bad habit of Medically trained (Psychologically ill-trained) professionals down-regarding psychological illness. So, to me whether this illness-set is psychogenic or not does not matter. My points 1-5 stand in logic if not common sense.
Unfortunately, what we see being played out with this illness is the history of bad-medicine and I was shocked to hear Prof. Coffins statements. Although I do see where he is coming from – I think? A lot of research is needed to better identify biomarkers.