My blog was never about Judy Mikovits. It is about the hypothesis. That hypothesis is on the back shelf until this sordid mess plays itself out, which will now probably take years. Years of studying downstream effects, blinders on again, nobody looking for the source of the illness. Tragic.
Take a look at this, not a paper, a blurb on the bottom of a scientist’s webpage. She is probably afraid to publish amidst all the controversy. Who in their right mind would want to jump into this cesspool? With the fishbowl of vitriol that comprise many of the comments on this blog?
Identification of a novel retrovirus in Benign Prostatic Hyperplasia (BPH)
BPH describes a benign condition experienced by most men as they age, and is a result of increased proliferation (growth) of fibroblast and epithelial cells surrounding the urethra, which over time can form “nodules” and result in compression of the urethra and subsequently obstruction of urinary flow. Symptoms of BPH include urinary hesitancy, frequent urination, dysuria (painful urination), increased risk of urinary tract infections, and urinary retention. Treatment includes surgery and pharmacologic options, although the cause of BPH is unknown. Using tissue from patients who have undergone surgical treatment to alleviate BPH, we discovered that the affected tissue appears to have altered gene expression patterns when compared to normal prostate tissue. This is not unexpected, as the tissue is clearly growing more quickly. However we identified what appears to be increased expression of genes related to an antiviral response. Given the recent findings of a novel virus, XMRV, found in some prostate tumors, we analyzed the BPH affected tissue for viral infection. We found that the majority of tissue from symptomatic BPH patients contained low levels of a virus not previously found in humans. Sequencing confirmed that the virus consists of 2 variants, is not XMRV, and likely produces a protein that has been related to inflammation in other species. Interestingly, the exact virus sequence differs among patients, suggesting that upon infection of the tissue, the virus undergoes replication. Furthermore, sequencing revealed that the virus is likely transcriptionally regulated by androgens, which is consistent with the fact that cell growth in BPH is androgen-dependent and the classic non surgical treatment for BPH is inhibition of DHT (an androgen) production. Both variants of the virus have submitted to the USPTO as a provisional patent, as they may be a therapeutic target for this disease. In addition, we are currently seeking funding to assist in the development of a vaccine, which could potentially eradicate BPH if this novel virus causes the disease, or even if it is just expressed (as a “bystander”) in BPH-affected tissue.
Denise O’Keefe, PhD webpage UPMC
For everybody who has written that I need to admit that Judy fooled me, I still don’t feel fooled. I could be fooled by a psychopath, like anyone. I have been before. I had a lawyer once that fooled me completely. I have reported my impressions of a person I know well, who is passionate and caring and stands up for what she believes. No signs of psychopathy at all. I hope I am right. In the fishbowl we now find ourselves, I’m sure we’ll find out. Everything. It will be like a rape trial. Blame the victim is always a good strategy.
Here is the timeline, since people seem to be questioning what I did when. I read the paper on Oct 9, 2009. I wrote my angry email to the WPI on Oct 28. I was angry for a while, until I met Judy in January. I paid VIP Dx for 2 tests, for my daughter and myself, in early 2010. I couldn’t afford to test my husband or son. I sent specimens to the WPI on a regular basis when we started arv’s, but was never given any results. Some of our specimens were tested, but I don’t know what those results were. It was never reported to me. I was told that some of our specimens were improperly handled by a research fellow who was subsequently fired. I started working as a volunteer for the WPI in the fall of 2010. I started working as an independent contractor in Jan 2011. I worked there for 6 months, mostly from Santa Fe. I made 5 trips to Reno from 3 days to a week. I was fired in early July of this year.
Finding oneself in the position of a whistle blower is a miserable experience. By writing I hope that I have put the WPI on notice of what I would say in court if dragged in. They don’t need a subpoena to find out. They are behaving like thugs. Have they never heard of mediation? I am only sorry that I didn’t say it all sooner. I have mail from people who are angry at me, because they gave money recently. I held hope for a good outcome for longer than I should have. For that I am so sorry.
I also have mail telling me that I should be afraid for my physical safety. That I should ask for witness protection. Witness to what? I wasn’t there. That’s how completely crazy this has become. I would laugh it off, but I would never have believed what has already happened. It is all so beyond the pale. SNR Denton, very expensive patent lawyers, are monitoring my blog again in the last couple of days from Chicago and Kansas City, including the tech department. It is creepy beyond belief. And the money being spent on all this? Where did it come from? Imagine what the tab is by now!
I feel like I stepped in dog shit and will never get it off. Everyone involved has been brought down by it. I don’t know what to do, except keep telling the truth as I see it. As I said, I wish I had done it sooner, but I still held hope for a positive outcome somehow. I can’t believe that all of this is happening. A year ago it was all so hopeful. I am heartsick.
>thanks Jamie – that conversation really wasn't contributing to the greater good
(also acknowledge my part in it.)
>"Yes, that sounds like a splendid idea! Why don't you call the UN and ask them to make it a top priority? I'm sure they will give this all the attention it deserves."
Are you being sarcastic? If yes, do you realise the diseases and numbers potentially involved in this? What good is the UN if they cannot protect the sick from those with vested interests controlling science? People and patients are entitled to have a finding such as this studied, not masked by shoddy experiments and statements. Such viruses will change the species, it cannot be hidden and it is only right to treat the bed bound now. Who has the right to hide this from them or stop them receiving life altering/saving treatments?
>"These features are all necessary parts of scientific self-correction. Frequently, non-scientists view the corrective process as one where people question some results and attempt to perform an exact reproduction of the experiments that generated them. That's not what usually happens. Instead, the best questions usually focus on the consequences of the result—what should we be seeing if this is right?
In this case, various researchers looked at the initial XMRV results and determined that, if they were correct, we should see similar things using different assays and with samples from different patients. When we didn't, the results raised questions about the whole hypothesis. If evidence in the idea's favor couldn't be found by anyone else, it would look shaky even if we assume that the original experiments had all been done properly.
Those sorts of questions, which focus on the consequences and prompt an inexact form of replication, are essential to ensuring that the scientific record remains robust over the long term."
http://arstechnica.com/science/news/2011/11/how-the-collapse-of-a-scientific-hypothesis-led-to-a-lawsuit-and-arrest.ars/2
>You obviously have no better understanding of the UN and its Charter than you and the other Gerwynites do the scientific methodology. I suggest you try the WHO instead. However, my guess is that their conclusion pretty much matches that of every other rational individual on earth re this matter.
>WHO is not part of the UN? News to me.
http://www.who.int/
Why are we talking about this?
>Shut up.
>Thank you Jamie.
I wish the U.N. would stop wars altogether. The costs of them in the last 10 years just in this country reach more than $1 trillion.
This money could be used to research CFS and every other disease quite extensively. And it could provide for health care for all 50 million who don't have any insurance, and for many, that equals no medical care.
And that includes putting back on medications the 9,000 people who have ceased getting their HIV/AIDS drugs due to budget cuts in five states. They've been put on waiting lists. Some have died.
So, research and treatment and medications are needed.
>http://www.salem-news.com/articles/november292011/vaccines-contaminated-se.php
>"To achieve international co-operation in solving international problems of an economic, social, cultural, or humanitarian character, and in promoting and encouraging respect for human rights and for fundamental freedoms for all without distinction as to race, sex, language, or religion; and"
The UNs health arm is the WHO, but this discovery will impact much more and is a humanitarian issue. Here is a further example that any rational person can find and follow.
>"But it would be misleading to suggest that the entire work of the UN system in support of global health rests with the WHO. On the contrary, many members of the UN family are engaged in this critical task. Many health-related matters addressed directly by the General Assembly and the Economic and Social Council, as well as through the efforts of the Joint United Nations Programme on HIV/AIDS (UNAIDS); the work of the United Nations Population Fund (UNFPA) in support of reproductive, adolescent and maternal health; and the health-related activities of the United Nations Children’s Fund (UNICEF)."
>http://www.un.org/en/globalissues/health/
>I don't even know what "side" the "shut up" person was on. Just more uselessness.
The UN suggestion was also obviously intended to be derisive, but if the UN can help, then it can help. Not a bad idea for an insult.
And no I am not on a "side" on Gerwyn, pro or con, except for finding some of the tit for tat annoying and a distraction from the big topics.
>John Herdisms
As I noted on Tuesday I got a direct email from WPI's law firm supposedly clarifying that WPI was not dropping its case against Judy. How did they get my email address and why did they target me? I asked but they never answered. it seemed to me to be a subtle intimidation effort. Can you all pass the word that I'd like to hear from others who got that email please? I'd like to see if there's a common thread here. Feel free to have any others who got it to write to me at johnherd@johnherd.com
>Hi Jamie.
Can I say thank you for doing this blog. It is wonderful. There are few places where patients can find the truth. Trolls are always going to be a part of ME until the wind changes, but their lies are easily spotted. I realise this is a difficult time and everything is now on hold, but our community is diverse enough to find a way through. Stay strong.
>I read in several newspaper articles online that WPI said it's not necessarily dropping its civil lawsuit against Judy Mikovits. And, on top of the criminal charges which exist.
I'm not saying any more. This was in articles.
>Enjoy
http://www.slate.com/articles/health_and_science/medical_examiner/2011/12/judy_mikovits_in_prison_what_does_it_mean_for_research_on_chronic_fatigue_syndrome_.single.html
>The authorities will not go through with criminal charges when ownership of items needs to be decided in a civil case.
@anon 8:45
That journalist now wants people to think they have cfs. They need to learn cfs is a collection of diseases. The article is the usual joke. Don't you think people know Mikovits is not in jail? People also know that with Silvermans data gone the viruses match what Lo and Alter found, and the reason for negative studies is found. Vp62 is not the ME HGRVs. All the negative papers used VP62 to optimise and did not clinically validate their assays. There are NO negative papers on the gamma retroviruses infecting people with ME!
>@anon 3:23 am
Hum, you were up late writing this fascinating summary. It contains the exact information I have been searching for. Can you please elaborate and give links to articles that support your statements? Or if you have a link to someone who has already done this please post.
I felt that the article above was at best yellow journalism, but I have to say the author mentioned ONE thing that interested me – the spinal fluid protein study that distinguished chronic Lyme from CFS. I started wondering what spinal fluid in HIV positive patients looked like compared to CFS. Maybe that would give us a clue as to whether a retrovirus is involved in CFS.
>@anon 3:23am
"the spinal fluid protein study that distinguished chronic Lyme from CFS. I started wondering what spinal fluid in HIV positive patients looked like compared to CFS. Maybe that would give us a clue as to whether a retrovirus is involved in CFS."
There is further research on the spinal fluid project. Since it is undergoing research, I cannot comment further on it other than the fact they are looking through sequencing any potential viruses or retroviruses that may be present to determine commonality or pattern. To date, xmrv has been rule out in the proteins of these patients.
This was an adjunct to Miller's research project which was lambasted or sabotaged by Gerwyn and company and just finally finished.
The research project had nothing to do with what they were claiming of underminding Mikovits and the WPI. They were totally interested in something else, a second stage to the research project, which now some of those who first criticize the project seem to agree and are very interested in the final results.
That is how you can destroy research in finding a cause and cure for this illness by ad hominen attacks on good scientists. Not only do you discourage funding but you chase away good scientists who are really interested in helping the patient community. What we found in this research adds to the body of knowledge. There is a process. These are just stepping stones to indicate further research to eliminate processes that do not look viable and to proceed with those that do. Science has to take its course and it is a process of elimination. @Jamie Deckoff-Jones MD.
http://okeefe-lab.blogspot.com/2011/11/so-lets-get-this-straight-cfs-patients.html?spref=tw
http://jvi.asm.org/content/early/2011/11/09/JVI.06073-11.abstract
Finally, the assays that are used are not just one assay but numerious assays that are very sophisticated but are of a proprietary nature that cannot be disclosed and are broad based as Lo/Alter if not more to capture any potential viruses that shows up. And yes the scientist are aware of lowering the annealing temperatures and adjusted the magnesium concentrations to increase the sensitivity of the assay and about pooling in tissues and the macaques study as well as German study on lung tissue. Some of the assays are calibrated to other than VP-62. They are looking at everything.
That is why the research continues but under the radar to avoid ad-hominem attacks against the researchers to avoid disrupting their research project and to avoid the WPI & Mikovits debacle. Confidentiality will be foremost in their minds and many in the patient community will not hear about it until the research is completed.
>@anon 12:03
Surely you mean the assays are optimised to a clinical positive? If not they are only looking for the synthrtic VP62 never found in nature and unfortunately there is no assay clinically validated for spinal fluid. There is in fact no evidence that MRVs would ever be found in spinal fluid. So any claim of looking for viruses there is flawed as you have no evidence at all that they are. With blood there are two positive ME papers for those viruses, with tissue many more for prostate cancer XMRV. This makes sense as gamma retroviruses preferentially propogate in tissue not blood.
>Science has to take its course and it is a process of elimination.". You cannot eliminate in science, you can only change your hypothesis based on testing it. That said using assays not clinically validated eliminates nothing, as the assays do not work.
>I don't see any shades of gray here. Mikovits, according the affidavits, conspired to have property stolen from WPI. Property which belonged to the WPI. Whether her actions were justified is another story, but the fact that she conspired to commit theft is yet to be refuted.
Grants are awarded to the institution, not the individual. WPI has every right to that research. Mikovits perhaps would be able to negotiate the transfer, in some fashion, of the research to another institution had she left amicably (read: not fired).
Mikovits would be toast in a civil case, and it's lucky for her that the WPI is dropping that, seeing that the burden of proof there is not as steep as in a criminal case. Unlucky for her, the criminal case will still be pursued.
>@Brad
It has only been claimed in a non useable affidavit that Mikovits asked her research assistant to fetch her notebooks. It has not been proven she did, or if she was not entitled to do this, which would not be a conspiracy or theft.
Mikovits was fired over cells, which if part of the NIH funded study she could not give to another lower researcher to use for separate work. Mikovits can also take the grant with her because the WPI does not have a suitable replacement for her position, ie. a principle investigator.
The criminal case against Mikovits has no validity as ownership of materials and what occurred, including RRM and Billy's gel posting, is unknown. The criminal case against them will however. You must have missed Annette state she is going ahead with the civil case.
>It's not necessarily true that WPI dropped their civil suit. That was said in several articles after Dr. Mikovits appeared in court in Nevada.
I can find a source if needed.
We've argued ad infinitum about who has the right to the notebooks. We differ on that. It's a human and moral question, not only a legal question. Last time I checked, we are allowed to disagree with laws. (After all, women couldn't vote until 1920, by law, until it was changed. Lots of laws aren't necessarily correct.) All can be disagreed with.
But we weren't going back arguing about this case.
On another note, it's Dr. Natelson in New Jersey who did the studies of spinal fluid, showing different proteins in people with CFS, than in people with Lyme disease, and also differing from those in healthy people.
>Here's the WPI quote about the civil suit from the ScienceInsider, dated Nov. 29, but it's elsewhere on the Web.
WPI President Annette Whittemore today issued a statement that said its civil case will continue. "The damage to the Whittemore Peterson Institute is substantial and recent news coverage indicating that WPI may dismiss its civil case against Dr. Judy Mikovits is incorrect," Whittemore's statement said.
>for those speaking ill of dr. mikovits….you do realize that if dr. mikovits hadnt done what she did re: xmrv, we would still be without hope and without any attention from researchers, right?
>Yes, I agree with you, Anonymous 12:29. What Dr. Mikovits did and the press around her work brought CFS out of the closet and to public view.
Her work caused more research to take place, and publicized the plight of CFS sufferers, and also brought to the attention of doctors, researchers, some of the media, how serious is this illness, and that many people are debilitated and homebound with it.
It's awfully tough for the medical and research professionals to put this disease back in the deep recesses of the closet at this point, since so much has been said about it.
I was watching one of the segments of the HHS CFSAC meeting Nov. 8-9, where two people phoned in, including an anesthesiologist with CFS.
I suppose if there is time I could watch all of it in increments, but it felt aggravating, that everyone with CFS is allotted a few minutes and then back to business as usual, sweeping it under the carpet. I really hope not.
>@Anon.December 4, 2011 12:29 AM
Your argument is comparable to praising a mugger, whose hospitalisation of a victim, incidentally led to the diagnosis of the victim with an asymptomatic but life threatening condition.
The publication in Science magazine is the essential 'exposure point' and the real work has been done by M.E/CFS focussed organisations actively responding to that; frankly any other smack in the face might have produced the same level of activation, with less attendant long term negative outcome. The reality is that Mikovits/WPI/XMRV has created a potential for long term negative outcomes for M.E/CFS research. That circumstance will only be ameliorated by other researchers establishing credible approaches to the illness.
>"We've argued ad infinitum about who has the right to the notebooks. We differ on that. It's a human and moral question, not only a legal question. Last time I checked, we are allowed to disagree with laws. "
The law doesn't work that way. Murder is not up for debate. But the police are not going to want to get themselves involved in who own research. The issue will have the world watching. It does no good if a research scientist has years of research taken from them.
>@IVD
"The reality is that Mikovits/WPI/XMRV has created a potential for long term negative outcomes for M.E/CFS research."
You appear to have said nothing.
>This isn't murder. Even there, defendants have civil liberties, the right to an attorney, a trial of their peers, the right to call witnesses, present evidence, argue their case.
This is a dispute over intellectual property. People do disagree over these matters. But researchers do have rights, and there are attorneys who will represent them in cases such as this one.
The case will be decided in a legal venue, or cases, I should say.
It isn't good if a scientist has years of research which he or she has focused on and been committed to finishing. No. I agree on that.
I don't think the Mikovits/WPI conflict hurt researching CFS. More people than ever are doing so, in one arena or another. The Norwegian doctors are doing research, the Mount Sinai team set up by Dr. Enlander, and there is research by Klimas, the Lights, Komaroff, Natelson, others, although not in viral causes.
It seems like more research is going on, so I'm hopeful. I just hope I'm still around to benefit in some way.
>This is nowhere near close to murder. However, in this legal system, even murderers have legal rights to a lawyer, to a trial by their peers, to present testimony, witnesses, evidence, to be heard.
This is about intellectual property rights. And researchers have rights to attorneys, hearings, etc. There are lawyers who represent people on these matters.
Yes, it's not good if a research has years of research taken from them, when they've been focused and dedicated to it, and it's their brainpower, time and energy that's involved. My point exactly.
I doubt if research will stop. There is lots of research going on now, but not necessarily on causation.
Dr. Enlander's new staff at Mount Sinai's center on CFS research does include a virologist, along with a geneticist and an immunologist. They sound serious.
And there are many scientists studying biomarkets. Many have had successes.
I'm hopeful. I just hope I'm still around to benefit when research discovers more, including treatments.
>Apologies for duplication, which was unintended. I thought the message was gobbled up by the blogging system.
>Murder was an example of how you cannot change a law post crime. The ownership of research materials will not come under any law as it is too complicated. It's not about morals, but how depriving a scientist of their years of research harms the public by being an obstacle to progress.
>I posted the comment about the spinal fluid study which showed a difference in proteins with chronic fatigue syndrome vs chronic Lyme patients. The key researchers there are Natelson (cfs) and Fallon (chronic Lyme).
My question was whether anyone has ever studied what proteins would show up in an HIV positive person.
I have to add that it would be impossible for them to have "ruled out XMRV" since no one has clearly identified what the retrovirus might look like or how to detect it. Indeed the whole study of spinal fluid proteins was looking for thousands of proteins common to particular disease states both of which are unclear at this time as to cause. For instance, most folks who got bit by ticks have bacterial and parasitic infections combined.
I was simply asking my typical sixth grade teacher type question: Does anyone know what proteins show up in a patient we KNOW has a retrovirus infection?
>Protein research is very new. They would have to identify what is specific to all diseases to make it work. The CFS study failed to use a strict criteria, so the results will change with the next CFS group. It is not known if MRVs would even be found in spinal fluid. It is therefore illogical to look there at this time when the next scientific approach would be tissue studies, where gamma retroviruses are normally found.
>", no single marker has so far proved to be reliable for practical purposes. The mechanisms leading from HIV-1 infection of the CNS to tissue dysfunction and neurocognitive impairment are not straightforward and abnormal levels of CSF markers are often also present in patients with asymptomatic HIV-1 infection or other CNS pathological conditions"
https://login.medscape.com/login/sso/getlogin?urlCache=aHR0cDovL3d3dy5tZWRzY2FwZS5jb20vdmlld2FydGljbGUvNzQxMDI3XzQ=&ac=401
>Jaimie…I miss you….I am not cognitively adept enough anymore to follow all the ins and outs of this discussion. I know I trust you and trust your judgement. Please stay in the loop for us…and try to commnicate what you know and what we desperately try to know.
Leave the whittmore drama to the side if it makes you sick…it would me. But keep your periscope up scanning this vast ocean of ignorance and let us know when you spy something that might help us and our desperately ill children! Gentle hugs and prayers!
>I understand that the protein studies on spinal fluid are just beginning. But it is fascinating that there was a clear distinction between the Lyme and the cfs populations. To me this would strongly suggest that the infectious causes are different. Hey, they even found one Lyme patient who got mixed in with the cfs patients. They could spot this because of the spinal fluid proteins in that one "cfs" patient matching the Lyme patients. Wow! I was misdiagnosed as having cfs when in fact I was infected with borrelia. So what is still going on that makes my case chronic?
My next question would be this: IF HIV patients have similar proteins to CFS patients this might suggest that CFS patients MAIN infection was retroviral. I realize this is confounding since HIV and CFS patients get all sorts of reactivated secondary infections. For a long time I thought chronic Lyme was due to some controlling infection – mycoplasma – retroviral? But now that the proteins indicate the two disease conditions are not the same I think I have to throw out that hypothesis or maybe not. But there is something common to either Lyme or CFS that IS NOT THE SAME. What is it?
Enquiring minds want to know…
>Paula,
More likely treatment resistent Lyme is ME/CFS plus Bb, et al. A doctor recently wrote to me that he had discovered that over-treatment of chronic Lyme Disease is the surest path to more severe ME/CFS. Antibiotics are a double edged sword in patients with IBS and leaky gut already. They should not be used indiscriminately.
Jamie
>Dear hope4today,
Thank you for the encouragement. I am most definitely ready to move on. The drama in Reno is tragic; nothing productive can come from it. I am working hard to keep my focus on the clinical now. I will share my impressions from my practice soon and expect to keep writing going forward.
Aloha,
Jamie
>"But it is fascinating that there was a clear distinction between the Lyme and the cfs populations."
They cannot claim to have a clear distinction when the method for selecting patients is on of exclusion, bringing in many people with different reasons for fatigue along with those who have ME.
"My next question would be this: IF HIV patients have similar proteins to CFS patients this might suggest that CFS patients MAIN infection was retroviral. "
What makes you think there are protein markers for HIV? What makes you think HIV markers, if found, would be a sign of retrovirus and not HIV alone? The immune profile from Mikovits does support a retroviral infection, those from Klimas and others matches EBV infection or depression, but Klimas uses again a CFS criteria.
It is simpler to test for gammaretroviruses in tissue. CSF adds extra complications. The most pertinent being would a MRV even be present in CSF? If it is not there you won't find it, so better to move to the compartments were these viruses are known to be propagate.
>Kathy D said: "Omigod, now it's an international espionage case?
And here we are, a million or more of us who can't get out of bed, go to work, make our own meals, go to the grocery store, etc. Who knew a global conspiracy is involved?
This is the stuff of which good thrillers are written. If only we had the energy to write such a book."
Kathy Dearest,
Are you joking or just completely clueless? And as for 'energy' to write a book, it seems like you have enough to write several novels, judging from the volume of silliness you've posted on Jamie's blog.
Just askin'.
>@ anon 4:25 pm
Let me try to be a bit clearer. I have no idea if an AIDS patient would have a distinctive group of proteins in spinal fluid. This whole field of testing for thousands of proteins is new. I don't know if HIV patients have even been tested in this way. I was wondering if anyone else knew, just because it would be significant if the cfs patients looked like hiv patients. The study indicated that cfs patients' spinal proteins look like Alzheimers and Parkinsons – not good.
As to this study with Fallon and Natelson the most astounding evidence that the patients were indeed correctly grouped was that ONE PATIENT who they thought was only cfs turned out to have the SAME proteins as all the Lyme patients. Surprise. So what is my point? That the spinal fluid testing may eventually be a good clue as to whether the cfs patients do indeed have borrelia or not.
In a perfect world we would have perfect tests for borrelia, retroviruses etc. Right now we don't, so any studies that further the notion that there might even be retroviruses or something else besides borrelia or Epstein Barr are useful.
Oh, one more thing, HIV is a retrovirus. I'm not sure you are clear on this. That's why I think it would be valuable to know what the spinal proteins look like in AIDS. Then, if they were similar we could say, "Oh, this points to cfs being caused by a retrovirus.
@ Dr. D-J Yes, I totally agree that antibiotics can be a disaster worse than the disease. But in my case, I have not had gut problems. In fact, my original gut problems when I first got sick completely disappeared on Zithromax. Go figure. As you know, after one has been sick 16 years and some things clear while others get worse, it becomes a confusing mess.
>"The study indicated that cfs patients' spinal proteins look like Alzheimers and Parkinsons – not good."
There isn't any fixed markers for those diseases. It will take years before such a method will be available, but using CFS definitions will not uncover them as they will change with each set of patients, making the very idea of a patient being selected out for Lyme unimpressive.
We do have good clinically validated tests for MRV viruses. The methods used in Lombardi et al. work. Why are others not using them? They won't work for high throughput or large screening, and do need to be used together, but they do work.
Paula, have a look a protein markers for HTLV and HIV. Are they the same?
>First, are there any such markers for HIV and HTLV. No, there are not at this time.
>”There is increasing concern that in modern research, false findings may be the majority or even the vast majority of published research claims…Conflicts of interest are very common in biomedical research, and typically they are inadequately and sparsely reported…Prestigious investigators may suppress via the peer review process the appearance and dissemination of findings that refute their findings, thus condemning their field to perpetuate false dogma. Empirical evidence on expert opinion shows that it is extremely unreliable…Highly prejudiced stakeholders may even create a barrier that aborts efforts at obtaining and disseminating opposing results…”
Ioannidis JP. Why most published research findings are false. PLoS Med. 2005 Aug; 2(8): e124. http://medicine.plosjournals.org/perlserv/?request=get-pdf&file=10.1371_journal.pmed.0020124-L.pdf
— John P.A. Ioannidis, MD, Dept. of Hygiene and Epidemiology, University of Ioannina School of Medicine, Greece; Institute for Clinical Research and Health Policy Studies, Dept. of Medicine, Tufts-New England Medical Center, Boston
>@anon 5:43
You write:
"There isn't any fixed markers for those diseases. It will take years before such a method will be available, but using CFS definitions will not uncover them as they will change with each set of patients, making the very idea of a patient being selected out for Lyme unimpressive."
Yes, I quite agree with you that there are no fixed markers yet. But look at what they found. The two key researchers – one is the top in Lyme disease, and the other top in CFS – they got a population diagnosed as CFS who had tested negative for borrelia, then they got a population who tested positive for borrelia and had never fully recovered (clearly these had borrelia or chronic Lyme). Both populations had matching proteins to everyone in THEIR group. The ONLY exception was one patient who was in the CFS group but had proteins exactly matching the borrelia group. This patient had Lyme, not CFS, but had not tested positive.
So I think it is likely that the proteins are definitive to some extent and may be useful in diagnosing, at least in diagnosing chronic Lyme. The next issue is what causes these elevated proteins? Especially one wonders what is causing the protein elevation in the CFS group. That is why I wondered if anyone had ever done such a study on AIDS patients. The study mentioned that the proteins in CFS look like the group of proteins found in ALZ and Parkinsons. I did not make that up. You have to read the whole study though. Lots of details when you read it all. Fascinating stuff.
>Brain scans will show the similarities of the disease now, not 20 or 30 years away. CFS is a grouping of separate diseases, including at times ME. CFS is not a disease by itself. So to say they identified markers is ludicrous.
>Common courtesy is needed on the blogs.
Most of us have CFS and we all want to see research succeed in finding causes and treatments that work and aren't toxic.
We have common cause to discuss what's going on with the research studies and findings.
We have different opinions, including on the Reno developments, and on research scientists' rights to their research. That's okay.
Different opinions are to be expected.
But can't we have a free flow of discussion on this or any topic without slander or anger at each other?