Hoping that everyone can relax a little, here’s yesterday’s song that I couldn’t figure out how to post from my iPhone. We could use a little levity, I think.
When I started writing this blog, it was with a sense of astonishment that the physicians treating the patients, Lyme and CFS, didn’t seem to recognize that they had a new quiver for their arrows. The few that did were quickly censured, or swore a few patients to secrecy. I had been housebound, sometimes bedbound, for years and never expected to return to work, so I didn’t care who I pissed off. Anything was better than the isolation. The good thing about not caring was that I learned to write authentically.
During my 25 years in practice, I didn’t interface at all with the scientific community. Doctors only. I had no idea about the realities of this parallel universe that so impacts what clinical choices are open to us. I thought that the Science paper would be hailed as a great breakthough; scientists and doctors would come together, bringing different things to the table. The pace of progress would accelerate. If only that had happened!
The scientists that I’ve criticized by name were Coffin, Stoye and Racaniello. The first two put themselves out there very early on in a way that appeared designed to stop progress. They also have a long history of publishing things together that minimized the risk, so aren’t clean on the issue and their opinions shouldn’t carry much weight. Dr. Coffin also took it upon himself to try to limit treatment options, my pet peeve.
Professor Racaniello is a media figure, so fair game. I admit to being influenced by hurt feelings in his case, because I wrote to him when I started arv’s, in the midst of the first blush of excitement, wanting to have a discussion with him about the science and he shut me down, much the way Jason did. And to me, the tee-shirt still seems over the top thoughtless, though I think now that he probably didn’t understand what he was doing. There are signs that he is growing, e.g. publishing Dave Tuller’s important piece on his blog.
I was angry at Dr. Singh when she published her negative paper, for the reasons I expressed back then, but essentially the same thing again; scientists trying to call the clinical shots, though in this case I understand that she felt that her former paper was too strongly in favor. I sent her testimonials from patients improving on arv’s at that time. My understanding from Dr. Enlander is that she is back on the case. I thought her a lovely person when I met her and I am glad she is again working on our behalf. The Mt. Sinai initiative is very exciting. It is difficult not to fantasize about Dr.’s Shadt and Lipkin putting their heads together.
And Jason. Sorry Jason, I didn’t mean to hurt your feelings. I hope you learned something from our scuffle. No hard feelings on my end.
I hope I haven’t forgotten anyone. A virtual olive branch offered to all, even those most aghast at my choices…
Believe it or not, there are scientists that share with me, and I protect their privacy. I swear I’ll disavow knowledge of our friendship to my dying day if that’s what any scientist willing to share wants. At risk of scaring off the people we want to be here, there is a tracker on the blog, that allows me to see the IP address, location and the name of the server that loads each blog page, as well as how many prior visits from that address. Institutional servers give the name of the institution. There are at least a dozen readers at the NCI and another dozen who connect from NIH servers in a few different cities. A couple at the CDC in Atlanta. Readers at many universities and teaching hospitals, including a few at Columbia and Harvard. Cancer institutes around the country. Only a few of these people participate in the discussion. This is a potentially powerful thing. When I worked for the WPI, one of things I most wanted to do was establish lines of communication between physicians and scientists with all kinds of points of view. There is little to be learned from consensus when the truth isn’t even on the table. If there is a way to salvage some part of that dream, I’d like to.
Many of the scientists came to read about Dr. Mikovits’ travails, but I am asking them to think about the science with us. In particular, I’d like to know your reactions to Dr. Snyderman’s data. Please adopt a handle and share with us. Your secret is safe with me. I ask you for the sake of the patients that you are now beginning to know, be bold. I realize that you are constrained by the knowledge that a patient community can do what we did, but there are 17 million patients worldwide in the ME/CFS cohort alone, who need creative thinking from you. There is every indication that our disease is reversible until it is very advanced. The unclaimed talent in the patient community is staggering, if only the disease could be calmed, not even cured. Look at me. I am productive after years of being almost unable to care for myself, let alone anyone else.
I would like to put an end to the discussion about the lab science in the Science paper, the WPI, VIP Dx. Nobody knows the answers, including the protagonists. I certainly have no basis for evaluating any of it. I defer to the scientific community to figure it out; discussing it here is not productive. At this point, it is non-contributory and boring. Take it someplace else. This is also not the place to argue about whether Dr. Mikovits should be canonized or not, though she is my friend, and I am very sorry for what is happening to her. But from a clinical point of view it is irrelevant. This blog is about developing a model for treatment and how to best live with the disease.
Thank you to our mold warriors for giving it another shot here, and for keeping it appropriate this time. I for one, think that your experiences of improvement without medication are significant. I also understand why you feel the need to tell others in the hope of reducing their suffering, as well as your frustration when you feel you aren’t being heard. I have been interested in Ritchie Shoemaker’s pioneering work, since 2002 when we shared a couple of patients with Ciguatera poisoning.
And a big thank you to In Vitro Infidelium for the considered comment this morning. No invective or politics at all. Just a reply about the scientific discussion at hand. It was a breath of fresh air. Thank you for the excellent paper by Voisset et al. The quote you lifted in your comment is precisely the point. Although it clearly isn’t a simple, straight forward infection, there is epidemiological evidence that it is an emerging disease of very great proportions, not a stable situation. AIDS isn’t simple and straightforward either, without a test, in that infected people can remain apparently healthy for a long time, or even indefinitely. Only a small percentage of people with HTLV ever become clinically ill from it. Inbred sick mice don’t get sick from their MLV’s, but wild mice and some other rodents can. All I am asking for is that it be studied, not shut down if this attempt fails. Also, that our therapeutic options not be limited by how slow the science will be to unfold, even in a best case scenario in which Dr. Lipkin finds something.
My hat is off to Dr. Lipkin. His finely worded communication to the patient community brought tears to my eyes. The only thing I would take exception with at all was the use of the word definitive. If by some quirk of fate, this study is completely negative, we beg you, use those specimens to take the next step.
Today’s song: Learning to Fly: by Tom Petty
>@ Jamie
I wrote a whole post on why appeals to authority are so unsafe, and why substantive points and rational argument need to 'trump' irrational appeals to authority if science and knowledge of this illness is to proceed correctly. Sadly it never took (or was pre-moderated and disallowed). Diego's comment about the servers is reasonable. NotBilly could be a cleaner, a junior lab technician astroturfing on the side, the guy who delivers the post, or a schizophrenic patient from somewhere in the vicinity. No offence towards schizophrenics, cleaners, or postmen intended: just showing the problems of accepting unsafe claims to authority on face value over substantive argument- which I fear you are doing here.
>@ Angela:
You are absolutely correct and I can't refute what you say from you perspective. I chose to remain anonymous and that is my choice. I realize the disadvantages this brings to the discussion. Only JDJ can suggest my authenticity as she has done a post above. I also understand you can believe who you want.
Having said all this, and knowing I can't convince you, all I can do is warn you. All I want, all any scientists wants when posting on this blog, is for the misinformation about the science to stop. Diego pushes false information to JDJs readers and someone has to stand up to him.
Best wishes.
@JDJ:
"Scientists, since you use RT assays routinely, can you tell us why we don't have an RT assay for clinical use? Why is there not a test for generic retroviruses?"
Sensitivity. RT assays are meant for laboratory testing of mature virus in cell culture media. Bucket-loads of virus. At high enough concentrations, measuring an unknown RT activity against known standard is linear. That an unknown value X can be given a number on a linear scale. In a patient setting, the amount of virus are often so small you lose the linear range of detecting RT. There are other problems too. RT assay can't differentiate between 2 or 10 viruses – it just measures there associated RT. This is easy when one transfects XMRV, MLV, or HIV, specifically into cells – only one virus is coming out of those cells. In a patient setting you loose specificity. Other tests are for more specific and linear for patients. ELISA is specific against known retros and is sensitive. PCR based assays offer the highest degree of sensitivity since it can detect retrovirus infection in a latent state where the is no active viremia.
"NotBilly, Sinbad, other scientists reading, how would you go about the next round of testing for a retroviral etiology of ME/CFS (and ASD), since we have learned some things despite the fiasco? "
Honestly, I think Lipkin has it right. I know he is getting alot flack for working along side Mikovits, and from a scientist's point of view, those criticisms are valid considering the retractions. This is one of the reasons I'm keeping anonymous. Lipkin is a colleague and in all fields, not just science, politics are an important part of the game. Politics does not hinder science, but certain unsaid rules of respect need to be followed.
However, the important thing is Lipkin has available the funds and the technology to look at other retroviruses that may be lurking. Deep sequencing is the way to go and Lipkin is looking. More important though, he has to be open, and actively looking, for other viruses besides the retroviridae family. I *think* he is but not entirely sure.
More to the point – if he DOES find something then we are back at square one in a sense. It says nothing about the virus causing CFS, simply that its there. More or less the chicken and the egg scenario. At least it will be another place to study since XMRV has turned up a dead end.
>Angela,
The history of the illness not withstanding, and the fact that we have a lot to be angry about, I think it is changing. Finally. There are some very fine scientists thinking about us. It used to be a hysterical women's disease. Or burn out (my first diagnosis). That's progress. And I disagree that the patient group needs to understand the details of how a PCR is done, or which cell line expresses virions under what circumstances, in order to follow the ideas being discussed. That is not a productive way for patients to spend time or precious energy. I think your comments verge on paranoia and are an obstacle to progress. That said, it does appear that it is science that has gotten us into this mess in the first place…
And yes, maybe NotBilly is the janitor lying about being a scientist. @@
Jamie
>Diego @January 7, 2012 6:37 AM
The utility of a diagositic criteria set in respect of research depends largely on the degree to which it is accepted throughout the scientific arena. How many of the ICC singatories are actually carrying out biomedical research using the ICC criteria ? And of global relevance M.E/CFS research how many projects are using the ICC ? Far too few to be of current significance.
Your comments are simply reprising the circularity of which I have complained – and actually your argument is not with me but with Paula Carnes to whom I was replying. While I think the ICC is flawed, accepting the ICC as the delimiting factor would resolve the identity issue which is the source of my 'what is it' ? question to JDJ. Your conclusion that "we can't test everybody" is clearly true but that in itself doesn't resolve the arguments of who has the legitmate claim to 'true M.E', or whatever disease description is chosen under the 'single disease causation' paradigm. You are just adding your claim to ownership under the ICC banner.
I see no evidence that JHK is anything other than an ERV and although its reported (unreplicated) potential role as an EBV activator is of probable significance, I don't see what it has to do with either XMRV or the aetiology of M.E/CFS in terms of any current understanding. My interest here concerns what is written about M.E/CFS in the context of scientific research. That RVs, and in my view far more likely ERVs, have a role in some aspects of the aetiology of some cases of M.E/CFS is a reasonable proposition, I'd like to see discussion of that proposition informed by the best available scientific knowledge.
>Jamie wrote:
>I disagree that the patient group needs to understand the details of how a PCR is done, or which cell line expresses virions under what circumstances, in order to follow the ideas being discussed. That is not a productive way for patients to spend time or precious energy.
I couldn't agree more. I note that most of the people discussing such minutiae either aren't sick or are bordering on the healthy.
>@InVitro
The people who created the ICC should use it or they can renounce it. They have not done this. The scientific arena that you mention would actually be those people who created it. There are few researchers involved in ME largely due to limited funds or the refusal to fund research into the disease by those who do control Government funding. I assume one reason may be that some of those who have their name to the ICC cannot use it as they are unable to obtain funding to conduct scientific research using this criteria. That points to the funders having a problem with studying the sickest patients. Another option is their current commitments to use the criteria they will have obtained funding for and the few months that have elapsed since the criteria was published.
" and actually your argument is not with me but with Paula Carnes to whom I was replying."
It what way?
"While I think the ICC is flawed,"
In what way?
" Your conclusion that "we can't test everybody" is clearly true but that in itself doesn't resolve the arguments of who has the legitmate claim to 'true M.E', or whatever disease description is chosen under the 'single disease causation' paradigm. You are just adding your claim to ownership under the ICC banner. "
No disease has ever been discovered by expecting an abnormality to be found when testing everyone. The ownership of the disease can only extend to the use of stick criteria. The CCC again does to a certain extent fit this.
"I see no evidence that JHK is anything other than an ERV and although its reported (unreplicated) potential role as an EBV activator is of probable significance, I don't see what it has to do with either XMRV or the aetiology of M.E/CFS in terms of any current understanding. My interest here concerns what is written about M.E/CFS in the context of scientific research. That RVs, and in my view far more likely ERVs, have a role in some aspects of the aetiology of some cases of M.E/CFS is a reasonable proposition, I'd like to see discussion of that proposition informed by the best available scientific knowledge."
The paper also found RT activity, produced an EM of budding viruses and the sequence is in the genbank. This sequence is a Xenotropic MRV. What evidence in the paper are you citing that suggests an ERV? The study is also published scientific research. How are you suggesting it is not?
>@NotBilly,
" In a patient setting you loose specificity. Other tests are for more specific and linear for patients. ELISA is specific against known retros and is sensitive. PCR based assays offer the highest degree of sensitivity since it can detect retrovirus infection in a latent state where the is no active viremia."
But what if you don't know the specifics of what you are looking for? Why not test for actively replicating retroviruses of all kinds? We have the technology to develop such an assay. As a clinician, maybe I don't care what the sequences are. I have patients that need treatment now, not in 10 years. Why can't I, as a clinician, measure RT? I can get lots of very sensitive tests that tell me much less. I can spend lots of money looking for things to follow, and learn much less. You know the old saying: a doctor's most expensive tool is his pen.
"More to the point – if he DOES find something then we are back at square one in a sense. It says nothing about the virus causing CFS, simply that its there. More or less the chicken and the egg scenario. At least it will be another place to study since XMRV has turned up a dead end."
You mean the finding of actively replicated retroviruses in CFS patients, or even in healthy controls for that matter, would mean nothing to you? Unless it had been fully sequenced and you could identify it with a PCR?
Jamie
>@InVitro
How are you defining the virus called XMRV?
>"But what if you don't know the specifics of what you are looking for? Why not test for actively replicating retroviruses of all kinds? We have the technology to develop such an assay. As a clinician, maybe I don't care what the sequences are. I have patients that need treatment now, not in 10 years. Why can't I, as a clinician, measure RT? I can get lots of very sensitive tests that tell me much less. I can spend lots of money looking for things to follow, and learn much less. You know the old saying: a doctor's most expensive tool is his pen."
I agree with all you said, but as far as I know – RT assays are just not sensitive enough to detect minute traces of virus in human blood. The fact remains, if one has a retrovirus, RT assays won't see it, unless there is a raging infection going on. Not only that, but an RT assay won't give an answer to retrovirus infection that has gone latent and producing no virus.
I guess from clinician's point of view, a retrovirus signal is all you need. Unfortunately, from what I understand, this is hard to come by with current technology. I am not a clinician, however, so I may be wrong on this.
"You mean the finding of actively replicated retroviruses in CFS patients, or even in healthy controls for that matter, would mean nothing to you? Unless it had been fully sequenced and you could identify it with a PCR?"
No way!!! ;)
It would be great if he found some retrovirus, retroviral-like elements, or some other virus. And it doesn't have to be actively replicating for me to think, "huh. No why is this virus here when it shouldn't be"… It also doesn't need to be fully sequences as well, bits and pieces are fine with me. As a researcher, I'm open to all possibilities, including fragments of viral DNA that were in patient samples from 20 years ago.
All I'm saying is that any positive result from this would be a great place to start looking.
Assigning causality of a discovered virus to a disease, IMHO, needs to be taken with great care. The Lipkin study may provide the first step in this process. But just that first step – nothing more.
>@ Jamie,
With respect, calling my points 'verging on paranoia' is merely an ad hominem (as is the notion I write from a place of irrational anger, which is what you are implying), and does not get us very far.
What I am trying to do is to help people in the ME/CFS community analyse the reams and reams of ideology and polemic, attempts to manipulate rather than present reasonable argument, and fallacies of reasoning that is directed at them on a daily basis. I have a certain amount of ability to do this because I am a sociologist with special research interest, training and experience in research methodology (including discourse/textual analysis), gender, and sociology of science. This is not a claim to authority (though it constitutes a claim of expertise).However, if I was a construction worker, what would matter is the plausibility of my arguments, not my educational status. Diego appears to be involved in something similar (he/she has certainly helped ME in understanding the actual technical science, for example).
That said, I am a mother and full-time carer of a very ill young woman. I run around like a headless chicken trying to help my daughter survive, hold down a lecturing position, and support the ME community. This is relevant because I see the old 'anyone who is not an ME sufferer is healthy and therefore cannot be trusted' canard has arisen, sadly: but I also want to explain why practising rational analysis rather than deferring to and relying on claimed authority, or cowering from the massive ad hominem attacks members (and supporters) of this community get on a regular basis, is important for this community. Hence my decision to walk into this fray this afternoon. Because the above is in abundance, and there is evidence that patients trying to contribute to this blog are being shouted down which is a common occurrence.
I am concerned you have resorted to ad hominem as above when I am being perfectly reasonable (if rigorous and blunt, though no more than others here). You are in danger of scaring patients away from this blog.
One more thing – the hysteria diagnosis is NOT gone away for this illness. There is much evidence showing there has been NO 'progress'. Women in particular are in as great a danger of being treated as 'hysterical' or 'neurasthenic' as ever. If you want to find out more about this, I can provide evidence. Do not assume things have got better, especially in the Uk, but with the advent of DSM 5- things are likely to get worse globally in that respect.
>The lymphoma rate in the original Tahoe cohort is currently at one in three.
The CDC first called it "Hysteria", and then renamed it "CFS"
——————————
http://www.psychologytoday.com/blog/science-isnt-golden/201201/top-psychiatrists-again-try-quash-debate
"Doctors often do not recognize their responsibility to identify unfamiliar epidemiological anomalies. In these troubled times of terrorists attempting to gain access to biological weapons, the intransigence and unwillingness of doctors to… respond with scientific curiosity to demonstrable anomalies means that doctors are not the front lines of defense against deployment of biological weapons and consequent "unknown and idiopathic anomalies" that we expected them to be. It means that doctors are the principal obstacle to identification of emerging illnesses."
"Psychologizers" are a THREAT to NATIONAL SECURITY.
>Angela,
I apologize if you were collateral damage. It appeared to me that you were part of the little group of people irritating the patient community on forums all over the internet. If not, I'm sorry.
As for ad hominem attacks, I ask politely a few times (and this has come up before). I have a pretty high threshold for allowing the free-for-all. But I have my limits. At that point, I have two choices. I can say shut up, or moderate the blog. I really don't want to do that. I can't be here all the time and it will stop the free flow of a conversation. There's no reason to stop it, because I am asleep. It's my blog. I always say what I think. Why should I suspend judgement for your peculiar friends? Even though they undermine everything I'm trying to do here?
Thank you for telling us who you are. I respect your point of view, especially as the mother of a patient in the UK. But you are setting up a lose-lose. You leave no way out. Who is going to help you with an attitude like that? Yes, it's more than a little weird that we need help from the same groups of people that we feel have kept us captive, but not necessarily the same individuals. And yes, we should anticipate backlash from the increased awareness, but that doesn't mean it isn't growing. There is a level of media attention now that has never happened before.
I don't want patients to leave, though many seem even more sick of the repetitive and literal nature of the posts, than I am. However, I do want scientists to engage the discussion, not just lurk. And I wish some more doctors would join in. So I wish patients would try to welcome them, even as we ask them to look at some inconvenient and difficult things with us.
Jamie
>@RRM
"…is it possible that in CFS patient sera, the SFFV env protein cross-reacted with something else we have, that we don't even know about? Yes."
Like some exogenous retrovirus that we don't even know about?
>Quote: "The CDC and NICE definitions are diagnosis of exclusion. They are based upon the notion of 'medically unexplained' illness, and as soon as signs of organic illness are detected, it renders a patient NOT a CFS or ME sufferer, according to their own (flawed) logic."
Angela expressed the situation perfectly.
Although not a scientific document, Osler's Web explains what went wrong with the CDC's "science" on page 275 with perfect clarity and accuracy.
As Dr Cheney and Dr Peterson kept informing the CDC about more immune abnormalities they were finding, the CDC kept insisting that each one threatened to take the VERY PEOPLE the syndrome was being based on, out of the CFS category.
The Holmes committee finally just put together the loosest description some outward complaints, and explained that the purpose of the definition was to "maximize chances of identifying persons with a possibly unique medical entity".
That entity being… of course… the one that had all those bizarre immune abnormalities.
>I agree with Dr. Deckoff-Jones and then with Danger Mouse's repeat of:
>I disagree that the patient group needs to understand the details of how a PCR is done, or which cell line expresses virions under what circumstances, in order to follow the ideas being discussed. That is not a productive way for patients to spend time or precious energy.
I couldn't agree more as someone with CFS who gets wiped out with all of these repetitive comments and minutae, which I, for one, as a sufferer of this disease, don't need to see 150 times.
It becomes an individual competition among those posting to see who is right, who can batter down whose points harder, etc. It's a no-win for anyone reading this.
It's a race to see who can get in the Guinness Book of World Records as to number of times a post is repeated. This is not a contest. It is a blog to discuss CFS issues, especially concepts.
And I agree wholeheartedly that we want to look at concepts, not minutae. Could not have been better said.
Is everybody listening?
Please, for our sakes, CFS sufferers, go easy.
And in the cancer/CFS issue, as I posted above, the Norwegian oncologists who are trying Rituximab on people with CFS, began by using the drug on people with lymphoma and CFS. They recognize both of these diseases in one person.
No matter what anything says in a textbook or in a book, the reality is that people can and do have both. Dr. Snyderman, I believe, has a type of leukemia and CFS.
The connections between lymphoma and CFS concerns me a great deal. I have seen that people with CFS have a higher rate of getting lymphomas than people without CFS.
>Our experience indicated that susceptibility to lymphoma was probably part of a broader phenomenon that might not necessarily correlate to overt manifestations of CFS.
Osler's Web
Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.
by Hillary Johnson
Invitation to an Epidemic. page 90
-Incline Village, Nevada-
Starting that fall, Peterson and Cheney began to observe an outbreak of rare immune system cancers not only among people who were ill with the epidemic disease but among other previously well residents of Lake Tahoe's north shore.
During the first week in November a fifty-four-year-old attorney who was a Peterson patient showed up at the clinic with a tumor at his jawline. The man had retired from an active law practice and now dwelt in the evocatively named Zephyr Cove, a community a few miles south along the lakeshore from Incline Village. Peterson sent the attorney to Stanford University's medical center fo rsurgery. Following routine procedures, Stanfords pathology lab biopsied the tumor. Soon afterward, the surgeon who had performed the surgery called Peterson to inform him of the biopsy results. The mass was indeed malignant and the diagnosis most unusual: according to the pathologist who studied the cells, the attorney was suffering from Burkitt's lymphoma.
By the time an astonished Peterson called Stanford's pathology lab to discuss the finding, however, a second, more senior pathologist had studied the lawyer's tumor cells and changed the diagnosis to "undifferentiated B-cell lymphoma." The tumor cells "architecture," the senior pathologist explained to Cheney some time later, did not display the regular, "brick-like" construction of a Burkitt's tumor. The tumor, in fact, failed to fit into any single category of B-cell cancer.
Buried in the parotid, or salivary gland, a standard site for Burkitt's, the tumor had completely destroyed the tissues around it. "It was so distorted,' the doctor remembered, "We asked to have it probed for Epstein-Barr virus, but they didn't have much to look at because it was such a destructive necrotic mass."
The lawyer's diagnosis prompted a flurry of speculation between Peterson and Cheney over whether his cancer might be related to the epidemic. The lawyer had not complained of severe fatigue, Peterson remembered, though there were hints of a problem during the year before his tumor appeared, "He had nothing that was marked,' Cheney said. "On closer questioning,' however, the doctor learned that "he had not been completely normal in the year leading up to to this development. But he would not have said, 'I am very tired.' He would say, "I don't have all the energy I used to,' It was that kind of thing. Nothing marked."
Acting on a hunch, Cheney ordered a magnetic resonance imaging brain scan on the attorney' the resulting image was one of the most pockmarked the doctor had yet seen. In the following months the attorney developed the chronic syndrome.
A week later a second previously healthy patient walked into the Alder Street clinic with a tumor on his neck. This thirty-eight-year-old plumber and handyman in a local casino had been a patient of Cheney's for two years. The plumber's tumor was also in the parotid, or salivary gland, although it was a benign growth, characterized by Stanford as a "mixed salivary adenoma." (Adenomas are, by definition, benign, although they may become malignant.) Nevertheless, the Stanford lab probled the tumor tissue for Epstein-Barr virus at Cheney and Peterson's request and found it to be infused with the herpesvirus.
>Lymphoma rates have risen at 4% a year since 1950. From being a rare cancer to a common one.
http://jnci.oxfordjournals.org/content/93/7/494.full
No-one knows why. This is why I was so interested in your blog, Jamie, because the retroviral hypothesis has the greatest explanatory potential and challenges medical complacency, and I think that is needed.
>NotBilly wrote:
"More to the point – if he DOES find something then we are back at square one in a sense. It says nothing about the virus causing CFS, simply that its there. More or less the chicken and the egg scenario. At least it will be another place to study since XMRV has turned up a dead end."
Paula comments:
Wow, I should have stayed up all night reading here. Just one thought – a lot of patients are concerned that studies are not valid when patients may have depression or personality disorders instead of CFS – whatever the heck that is. I tend to think it really won't matter, because what will happen is that no matter how poorly the patient group is selected, or even if you rule out those who eventually developed cancer after years of CFS, the group will tend to be more highly infected with the pathogen than the healthy controls – if the pathogen is causal.
Also, if you test for several infections IF a retrovirus is the underlying CAUSE these patients will have reactivated infections just like AIDS patients do. Things like EBV, HHV6, mycoplasmas, c. pneumoniae, will turn up with high IgG levels.
Once we find out IF there are retroviruses going on, then we can regroup those patients – cull them out of the herd of us sickies and test further, treat etc.
Remember the study of spinal fluid proteins that accidentally mixed in one Lyme patient with the CFS group? That patient looked just like CFS until they looked at the spinal fluid – it was like the Lyme group, not like the CFS group. BTW both groups were sick and had chronic disease.
The beauty of all this research which I hope to God happens is that then we can study autism, RA. MS. ALS, ALZ ETC and see if these are caused by infection.
>assaying reverse transcriptase activity is a very sensitive method for diagnosing a HIV infection
http://www.ncbi.nlm.nih.gov/pubmed/11176273
>http://www.ncbi.nlm.nih.gov/pubmed/11176273
the above outlines an approach for assaying reverse transcriptase activity in making a diagnosis of HIV infection
common methods are based on elisa and western blot
NOT PCR
>I asked Dr Judy and Dr Lombardi, "Why not just cut through the crap by showing evidence of Reverse Transcriptase to necessitate further research?"
They told me RT levels had not measured sufficiently high enough to be compelling.
>this is another gammaretrovirus which causes disease in cats note which compartment it does not naturally infect
feLv
transmission
– vertically from
infected queens to
kittens
– horizontally among
cats that live
together or fight
viremia
– virus shed in
saliva, nasal
secretions,
feces, milk and
urine9,10
viral Propagation to other tissues
– Targets lymphoid organs (thymus, spleen,
lymph nodes)
– Immune response unable to clear infection
a
>IVI:
Hypothetical patient X becomes ill and is diagnosed with Fukuda CFS. Over time patient X would be a candidate for CCC and now ICC criteria, if it is relevant, but as we know medical science pays attention to Fukuda, but not to CCC/ICC.
At times patient X might actually not conform entirely to Fukuda guidelines, but it is never an issue; and patient X never moves clinically outside CCC/ICC criteria.
15 years after first becoming ill patient X is diagnosed with cancer. Maybe lymphoma; maybe leukemia.
Does patient X now no longer have ME or CFS?
>Curious, it doesn't matter if cancer patients are excluded in studies. We just have to do the studies looking accurately for many infections. We can deal with what CFS leads to later. I agree with you in concept, but really let's just git er done.
>I would like for IVI to answer that question, Paula.
>Ditto! I would like to see anything from IVI deleted, until he does.
>Ha! Yeah, but it doesn't matter if IVI thinks we should exclude cancer patients or not, because the studies just need to be done with or without patients who later develop secondary diseases. Certainly someone like Dr. Snyderman should still be considered a CFS patient. However, you have to think that maybe, just maybe, some aspect of the cancer could conceivably change the research test results in that case.
But, to get boring, it won't matter. If most of us with a CFS label turn out to have certain infections at a high level that is what we want to determine. Okay, I will shut up now.
>No need to shut up, but I wasn't really asking in the context of studies. You say 'certainly' Dr. Snyderman should be considered a CFS patient, but IVI has, unless I'm reading it wrong, stated the opposite. What I want to know is if he thinks only that one should not be diagnosed with both conditions simultaneously…or if he thinks that if you have CFS and then come down with cancer, if he thinks that means you do not have CFS anymore.
I think it's a fair question, especially in light of his comments, and I would like for him to answer it.
>The question is: Why can't people have CFS and lymphoma or leukemia or other diseases, including cancers? I don't get this one or the other thing.
The Norwegian oncologists used Rituximab on people with lymphoma who also had CFS. That's how they thought to use Rituximab on CFS sufferers, because the symptoms of some abated.
Whatever they learn in studying this and B cell involvement should help us. (I'm not advocating Rituximab here, as I know it has risks and I'm very chemically sensitive so I'd probably not take that chance.)
How can anyone rigidly say that someone with one disease can't have another?
David Tuller's excellent article a few months ago told of a woman who not only had CFS, but she tested positive for about five viruses.
I have relatives who have had cancer and also get viruses on a regular basis, symptoms differ.
>Curious is trying to pin down IVI into revealing his flawed underlying philosophy that CFS is defined as an unexplained illness, so anything at all that is ever discovered would take someone out of the CFS category.
Curious knows that IVI can not answer this question without showing that he succumbed to the logical fallacy outlined by Dr Hyde.
http://www.wicfs-me.org/Pdf%20Files/Byron%20Hyde%20-%20Complexities%20of%20Diagnosis.pdf
The Complexities of Diagnosis
By Dr. Byron Hyde
Chairman, Nightingale Research Foundation
Chapter 3 in
Handbook of Chronic Fatigue Syndrome
The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.
>@Curious
"…You say 'certainly' Dr. Snyderman should be considered a CFS patient, but IVI has, unless I'm reading it wrong, stated the opposite. What I want to know is if he thinks only that one should not be diagnosed with both conditions simultaneously…or if he thinks that if you have CFS and then come down with cancer, if he thinks that means you do not have CFS anymore."
I would also like to hear IVI answer that one.
>JDJ @January 7, 2012 7:28 AM wrote: “ Why not test to construction? The rigidity in your logic leaves us with nowhere to go until "it" is solved. It's like building a stairway without seeing the landing.”
It is not “my” logic, I have simply described the process of science, as part of an explanation of why your ‘olive branch’ needs to be set in within a particular discourse if it is to be accepted by those you want to engage with. To pursue your metaphore – we don’t, and by definition can not, know where the ‘landing is’ or even what it will look like until we have built the stairs – the landing must occupy a space which we can’t know until we get there via the stairs. It is precisely this problem that has shaped science over the last 350 years, and is most thoroughly expressed in Popper’s assessment of Theory, which requires that a Theory (hypothesis) must be capable of being destroyed (falsified), and that the force of current knowledge must be brought to bear in the cause of destruction. If the hypothesis remains intact then we have a conditional basis to consider that the hypothesis is representative of ‘real’ phenomena and further hypotheses may be developed from that point. This is the language of science and if you want to engage with scientists some acknowledgement of it is necessary.
Medicine is an applied science, so of course there is frustration where there is an obvious health impairment and pure science is not able to engage to provide a definitive intervention within a timescale that is meaningful to patients. The question then becomes, what are the scientific limits on experimental intervention ? My argument is that there is an axiomatic limitation provided by an acknowledgement of M.E/CFS being a condition with likely multiple causations within the global patient population. This axiomatic limitation is (semantically) obviated by those who argue for a single aetiology, and who consider that single aetiology to be capable of capture by a given illness description or criteria set. There is an incompatibility between a ‘very broad case definition’ and an approach which is open to ‘experimental interventions’ – this is because a ‘very broad case definition’ is far more probable of encompassing multiple causations only a proportion of which could be amenable to any given ‘intervention’. In very simple terms and using ARVs as an example – giving ARVs experimentally to a patient set selected on the Reeves criteria (the broadest currently defined and widely criticised) would probabilistically only benefit a very few while offering significant downsides to many. Those arguing for a single aetiology and a narrow criteria, are at least pursuing a logical consistency within their own terms of reference; the problem is that those terms of reference have little in the way of communicable legitimacy and so are unlikely to command the kind of engagement your olive branch post commends. Rather the result is just a lot more shouting on blogs and forums that most scientists see as abysmal crankfests.
>@ Curious, PC, EMW
PC is absolutely right that “it doesn't matter if IVI thinks we should exclude cancer patients or not ….” What matters in the context of JDJ’s blog post is what science (and specifically scientists), can engage with. There are established criteria for the diagnosis of M.E/CFS – you may not like these criteria, you may have extensive critiques of the established disease descriptions, but these are what scientists necessarily refer to . It doesn’t matter how much you may wish it were otherwise, if you are interested in achieving a discourse that is engaging of scientists then the criteria that govern large areas of research focus have to be accepted as part of the discourse. Even where there is an individual researcher who may wish to adopt a novel disease definition, funding agency conditionality is likely to require reference to the broadly accepted criteria rather than a new description, unless there is compelling science to the contrary.
The current accepted criteria exclude concurrent diagnosis of malignancy and CFS – note Kathy D and others who implied that Fluge et al http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358 included CFS/lymphoma patients, are wholly WRONG. Prediagnosis of malignancy was specifically stated as an excluding criteria – see paragraph “Study design, pre-treatment evaluation, and randomisation” (sigh) it would help if people actually read papers before making claims about them.
Malignancy as a criterion of exclusion in an illness defined solely by symptomology where the symptoms of malignancy have wide cross over with that illness, is inevitable. Malignancy is a definitive condition, there is no way to exclude the known associated symptoms of cancer as being causative of symptoms of M.E/CFS, even where M.E/CFS was a pre-existing diagnosis. There is indeed an apparent and interesting overlap between aspects of M.E/CFS and diseases of malignancy, http://www.ncbi.nlm.nih.gov/pubmed/20032425 but these only serve to confound concurrent diagnosis of the two, not support them. I’m certainly not going to be drawn into a discussion of Dr Snyderman’s health, but to the extent he has made public statements about it and the treatment he is pursuing, I do think he has a duty to make it explicit how his conception of M.E/CFS as a concurrent diagnosis with malignant disease is explicable in terms of the accepted exclusionary diagnosis of M.E/CFS. It’s not a matter of what is right or wrong, it’s a matter of being explicit I terms of scientifically valid propositions.
>IVI, you've fallen into the tautology that the CDC created with people like you in mind.
Not even Byron Hydes warning is enough to tell you that you are fishing in a desert mirage.
"Definitions are not diseases" -Byron Hyde
To understand CFS, you must study the evidence responsible for the creation of the syndrome.
You use the definition as an excuse NOT to do so, just as the CDC hoped you should.
Osler's Web, page 275
"Peterson, not surprisingly, found Holmes response chilling. If Holmes agency persisted in this view, the doctor added, it's surveillance system would generate meaningless data. "If Holmes's criteria is, "no other disease, no immunological abnormalities, no organic brain syndrome,' he's going to find nothing–except crazy people. He's going to prove his own point," Peterson said. "So he doesn't have to spend four hundred thousand dollars proving that. I'll accept his hypothesis before he spends the money!"
>Spot on, Erik.
>This is how it has been for 25 straight years.
People very well know what illness CFS was applied to, yet they fight bitterly to use the Holmes, or ANY CFS definition as a weapon against ever researching that illness.
Show them that it is only their own antiscientific and highly questionable "choice" that prevents them from learning what "CFS" is… discussion ends, and they just show up in another group where you start the battle all over again.
There is no excuse for people to do this, except, perhaps, sheer evil.
>Isn't the recent Norwegian Rituximab story the prime example of that – if it was down to IVI & co that original patient – the lady whose ME/CFS responded to chemotherapy would have counted as a 'real' patient because she also had cancer. Meaning her ME/CFS never got better because it wasn't there at the time of chemo.
Meaning if IVI or someone of similar mindset had been her cancer doc they would have refused trying the treatment on her later, and expanding it to other ME/CFS patients, simply on the grounds that she never had ME/CFS (because she also had cancer) therefore her responding to treatment does not count.
Stupidity or pure evil?
>the above should read: "would NOT have counted as a 'real' patient…"
>This is thread is the embers of dying blog so probably pointless but:
@ Anon January 9, 2012 1:26 AM – most certainly pure evil – see heretical commentary on your fundamentalist religion: http://cfsmirror.blogspot.com/2011/01/saints-and-demons-in-cult-of.html
Not that it will make any difference, because you are so wedded to your own stupidity, but your logic is irretrievably falacious and you really shouldn't confer your limitations on others. No one following the logic of (say) Fukada 1994 – would exclude the possibility that a protein inhibitor used in the treatment of cancer, might also be useful in the treatment of other diseases. What someone employing Fukada(1994) would conclude however is that there's no way to distinguish the symptoms of M.E/CFS from the symptoms of cancer which is why anyonepresenting with M.E/CFS should have common malignancies excluded at the outset. Duh !
Of course were a diagnosis M.E/CFS to have preceeded a diagnosis of cancer, and the cancer to have been successfully treated, and the patient to have noted that symptoms which were absent or diminished during treatment with anti malignancy drugs – recommencing treatment which was well tolerated by the patient, would be a reasonable action on the part of the treating physician. None of which would invalidate Fukada(1994), as demonstrated by its use in the CFS/Rituximab study.
It is a wonderful absurdity how those who support competing fanatical obsessions refuse to acknowledge the logic of their divergence of view, when united with the challenge of dealing with reasoned argument. JDJ advocates using the 'widest possible' case description (now apparently extending to cancer) while others who share her single disease entity proposition, demand that only by the narrowest case description can progress be made. And there's an expectation scientists are to participate in this discourse ? Not so much an appeal to authority as an appeal for perpetual collective idiocy.
>@Anon
"What 9 pre-screen tests are you referring to?"
The pre-screen test performed on healthy by labs in the BWG to ensure they were negative.
I stated "something like 9" by the way, which was from the top of my head.
I have just checked for your convenience, and apparently only 8 pre-screen test were performed on the healthy controls (PCR by WPI, CDC, Lo and Gen-Probe. Serology by WPI, CDC and Ruscetti. Culture by Ruscetti).
…before most of them turned out to be "positive" after all.
>International Conference on HHV-6 & 7 in Baltimore, Maryland, USA
Day 4 – June 23, 2008.
-Daniel Peterson (Clinician Forum Session)
"Antiviral treatment of patients with HHV-6, EBV & Enterovirus:
case reports"
http://www.scivee.tv/node/7030
____________________________________
If everyone with CFS dies of lymphoma, then…
by CDC logic, this would resolve CFS by moving everyone out of the CFS category.
>EMW wrote: "If everyone with CFS dies of lymphoma, then… by CDC logic, this would resolve CFS by moving everyone out of the CFS category."
That's merely a fallacy of 'no possible change'.
Presented with sound epidemiological evidence that there was a 100% coincidence of lymphoma with CFS, there would undoubtedly be a complete reclassification of CFS as a pre malignancy condition and the investigation and treatment of CFS would be assigned to oncology. Of course absent of any such evidence no such change is going to occur.
>Some looked at the disease and drove a stake in the sand.
You would, of course, have to ignore all the other evidence in CFS.
But that doesn't to be a problem for you, as your definition is that any illness which possesses evidence is not CFS.
—————————
http://bit.ly/ry6nMM
Research Article
A brain MRI study of chronic
fatigue syndrome: evidence
of brainstem dysfunction and
altered homeostasis
Leighton R. Barnden1,2,*, Benjamin Crouch1, Richard
Kwiatek3, Richard Burnet4, Anacleto Mernone1, Steve
Chryssidis5, Garry Scroop6, Peter Del Fante7