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.
>To Anon. 7:55 a.m.
That was a nasty and ridiculous statement to me, and insulting to say to a near 26-year CFS sufferer. How terrible for you that you have to resort to childish, hostile remarks.
I'll read what I choose to read, and say what I want to say, and ask what I want to ask.
You are not the monitor of this blog. You don't want to bother with common human courtesy, just want to vent awful stuff and tell everyone else too bad if you don't like it. You're holding people hostage to this nasty stuff.
Well, I'm not intimidated and I'll keep reading and posting.
I have this disease, and followed the WPI/Mikovits story for two years, like most of us. And now want to know what's happening.
And I have a right to do that, read any blog and ask questions.
It's too bad that you have to deal with people, especially people with CFS, in that manner.
And, yes, I've got lots of books on CFS and read lots of material.
>In Vitro Infidelium,
Assuming you live in the UK and are subject to the NHS and the nanny state, I'm awfully glad it's you and not me who lives there. You seem to think doctors are full of superior wisdom and always know what is best for their patients. You seem to believe that official guidelines are always right. This unbelievable inflexibility and paternalistic approach have made the NHS the horror of the Western world (particularly in regard to ME/CFS, but also in general).
It is true that patients are allowed to make unwise choices in the US, and that doctors sometimes go along with things they think are somewhat dubious, as long as they don't think they are especially harmful. That is a small price to pay for the open-mindedness and flexibility that permit a doctor and patient to collaborate and experiment to find what helps the patient most. Sarah Myhill would never have been prosecuted or censured in this country, unless she had demonstrably willfully or negligently harmed patients.
You will notice, if you watch for a while, that the treatments that actually help people tend to emerge in the US, not just because of our big pharma industry, but also because our medical system is not hamstrung by rigid treatment guidelines based on what the textbooks said 10 years ago. How is it possible to move forward, without meaningful clinical experimentation? No one would know what to do research on if they couldn't try things out.
A system like that in the UK, with all the doctors marching in lockstep and afraid to exercise their curiosity or intellect, will kill medical progress dead. That doesn't serve any of us.
When the XMRV test came out, I talked with my family doctor about it (not a ME/CFS specialist). He said, as most US doctors would, that he thought it was probably a waste of money given the current state of knowledge, but that he would happily order it for me if I wished (at my own cost, of course), since there was no great harm in it as long as I kept my expectations low. I decided that I agreed with him that there was no real point at that time, and I'm glad I made that choice, but I'm even more glad that I HAD the choice. In the US, we look to our doctors for guidance, but we are happy to take responsibility for our choices.
>To Anon 7:55 a.m.
There is some serious bullying here. Too bad.
It's not going to work.
I've read tons on CFS, and as someone who has had this darned disease for nearly 26 years, I have a right to ask questions and read more information on research. The right to know is fundamental, and to ask questions.
>Taking the page back to a serious discussion on science.
An assays that is not clinically validated and none of those in the negative studies were, is not able to determine whether a person is negative or positive. Examples. You don't let astronaunts into space without checking their suits are first airtight. Or you don't tell a person they are not infected with HIV with an assay that is not clinically validated. Racaniello, Mikovits and Singh have all repeated this is a fact and naturally it is otherwise there is no way you can know that a person is negative.
The blood working group paper was a failure. The blood supply is exposed and it is very doubtful protection will be forthcoming any time soon as their is no quick high throughput assay. Use of other assays in the blood study are there to assess how many positives the quick high throughput assays missed. They missed plenty. Interestingly, Abbott labs did not use their other assays in this paper that has found positives previously. Either way a study of only 14 patients is not a screening of the blood supply. It is far to small. But it does fail as a pilot study due to poor contamination control exposing a portion of collection tubes to infection and failure to screen the controls as negative. The "controls" tested positive by serology would be positives as that cannot be contamination.
>Patients and the public have a right to see questions asked. Failing to use assays known capable of detecting a positive and look for the viruses discovered is a crime against humanity. That is not science and is incompetence.
>So, let me get this straight, RRM. Osler's Web is a shitty conspiracy story because…a few 'inconvenient' details are left out? Facts, you say? Care to elaborate? If, as someone else suggested, this might include the stories of those who have recovered…where are these people? Who exactly has recovered? Why has the CDC not brought them forward or investigated what might have made them better?
How is David Tuller biased?
Ah, but this isn't what you're most interested in, is it, now. What you're most interested in is criticizing Mikovits, mostly through arguing with two or three patients. Fascinating stuff.
Now, since those two or three patients keep spouting variations on the same theme endlessly, for months on end, let's assume for the sake of argument that you're right and they're wrong. About Judy & XMRV or whatever you want to call the virus, and the assays used to detect it.
You're right, and they're wrong.
Okay. Now:
They are patients suffering from a disease that is just about impossible to describe, let alone live with. It's baffling to contemplate why they might spend the time arguing the same points over and over, but they do. And, for the sake of argument, assume they're wrong.
Your stake is?
You have someone who's sick with this? Your sister, you said?
After you have the courtesy to let us know what 'facts' were left out of Osler's Web, after you take a moment to explain why you would consider Tuller to be 'biased,' perhaps you can do us all another favor.
I can't understand why these patients keep arguing the same stuff over and over, but it's a HELL of a lot more understandable than trying to figure out why YOU would spend well over a year now arguing with them.
Unless, that is, you have spent time arguing against a laundry list of people who have done far more damage against patients suffering from this disease than Judy Mikovits could do in a hundred lifetimes. People with names like Straus, Wessely, Reeves, White, Sharpe, Chalder, Crawley…
…and those efforts should be easy to point to. I mean, it doesn't make sense you'd argue online endlessly about Mikovits with people literally trapped in their homes (if not beds) but not spend any time on people who dictate policy that decrees that all these patients need is CBT & GET. Or the Lightning Process.
Does it?
Unless, of course, you hold the position that Mikovits (again, assuming that you are correct while she, Ruscetti, and anyone else who disagrees with you must therefore be incorrect) has been more damaging to those with this illness than the people I named.
I certainly don't want to take any time away from your crucially important, not to mention scintillating, arguments about 'clinically validated assays'. But, hey, maybe you could throw me a bone here.
>didnt kathy d tell a sick, anonymous poster to "take rsponsibility for (their) own health"? and now she is whining about people being rude to her? LOL
>How could CFS be caused by EBV if many have CFS and have no exposure to EBV, inculding Eric Moldwarrior?
>"didnt kathy d tell a sick, anonymous poster to "take rsponsibility for (their) own health"? and now she is whining about people being rude to her? LOL"
No, that was "Sally." But, heck, it takes a special kind of person to mock sick people who are not as anonymous as others, especially healthy people.
Keep laughing.
>Whoops..hehe sorry Kathy.
>I didn't tell anyone to "take responsibility for their own health." Nope, not me.
It would be fine to attribute quotes to us, if they're correct. But I would never say that to anyone. I don't blame people who are ill with CFS or anything else. Nope.
This disease has no known treatment that helps. I know, I live with it every day. If anything helped, I'd try it.
And the medical establishment, with a few exceptions, like the blogger here, isn't helping us.
Curious' post was very interesting and good.
I'd like to have seen Wessely's face when the Norwegian study of Rituximab came out, and their surmisal that this is an autoimmune, i.e., wholly physically based disease. Not that I'm promoting Rituximab, only that I'm promoting the fact that their studies show that it's a physically caused disease, which probably affects B-cells.
I have a good doctor, thankfully. But so many are not help, and are, in fact, causing harm by not understanding what CFS sufferers go through.
And, really, I can't take seriously these Anonymous posts, except if they're sympathetic to those of us with CFS.
Have no idea what axe they're grinding. What good does it do those of us who are ill, except exacerbate the symptoms? Is that the goal?
>@Terrilyn 11:32 PM
Strongly agree. Express your disappointment, question what has happened in light of what is known, speculate (if you must), but don't cross the line into denigration and slanderous remarks about others based on little more than hearsay and the fact you feel disgruntled. It's not cool.
Andrea Whittemore (who I do not know from Adam) has the absolute right to privacy in regard to what medications she is or is not taking. We all do. That is how it works and that is as it should be. Whether or not you have donated money to the WPI (and I have) or invested yourself emotionally in the XMRV discovery (I did to a large extent) you do not have the right to know what medication Andrea Whittemore is taking, or even to speculate about it publicly. You're crossing a line into a place you have no right to go. You wouldn't do it face to face in the harsh light of day (you would be way more wary of what you said) and you shouldn't do it under cover of the internet either. Those types of comments are an embarrassment to us all.
This blog used to be a good place to gather and discuss the science and exchange useful information, something it could be said that we need perhaps more than any other sick community. It's recently become little more than a place for people with an axe to grind to vent their malice and victim complexes. Anyone with a positive comment to make is either ignored or shot down in flames for fear of it turning back into a decent discussion forum and away from a misery loves company or an I-know-more-than-you-do for amateur sleuths and would be scientists who don't actually know anything for certain.
I've always thought the internet to be the ultimate forum for sociopaths. I think there are a few in attendance here.
>Lisa's blog is good. Agree.
We should be able to discuss CFS and whatever questions we have — for those of us who actually are sick and are not virologists or pseudo-virologists. There should be a free flow of discussion.
Have no idea what the problem is in doing that.
And it isn't humorous to slander someone or misquote them. That's the bully in the school playground.
I must say maybe I've missed the action, but I'm on a lot of blogs on different issues, and no one is mean-spirited.
It's kind of awful that one place where those of us with this darned disease, who have to live with it on our backs daily, have to deal with this negative stuff.
Maybe some people enjoy it, but the majority of us — who are ill — don't. We want to ask and learn about the disease which afflicts us. Why not?
My question is that I wonder what helped Andrea Whittemore, as I wonder what helps anyone with this disease. Some people recover. How? What helps? I do not expect her to reveal her private treatment, but perhaps someone in a general sense could mention what works, not in relation to her.
>"Andrea Whittemore (who I do not know from Adam) has the absolute right to privacy in regard to what medications she is or is not taking. "
Yes I agree, but not if you have already announced it on Facebook.
>"Have no idea what axe they're grinding. What good does it do those of us who are ill, except exacerbate the symptoms? Is that the goal?"
Okay Kathy, I'll say it. Take responsibility for your choices. If reading things you don't like to hear or face makes your symptoms worse, then why are you reading them? Hell, why am I reading them?
We might start to recover at least some of our health if we stopped.
I have a friend who's gone back to work after 9 years of ME/CFS. He had one relapse 2 years ago, but is back at work again. One thing he has NEVER done is read these argumentative, draining bitch-fest blogs.
I think I'll follow his model. Finally.
>I thought I would learn something and I have.
Unfortunately, mean-spirited stuff is in the mix.
By the way, Llewellyn King says in a post in June of this year, at his White House Chronicle, that Andrea Whittemore was treated with Ampligen.
I'm just reporting the news. I didn't write it.
>And, as to the question, I guess I expect a free flow of questions, comments and responses, with mutual respect and consideration, as exists on other blogs I frequent on many topics — so we can learn more about this disease.
>Andrea was previously treated with Ampligen, but not now she isn't.
>"It’s just not sufficient to show that something can detect something in a plasmid template. It’s hard to know if it’s going to detect something in a matrix that’s as complicated as blood or cellular DNA. So I think that’s probably one of the biggest reasons for why people find different results.."
Not sufficient!
Won't know if it will work on an integrated virus in blood!
The big reason for the negative papers!
No science without clinical validation!!!!!!
>If there's no clinically validated test,then there's no proof of XMRV present in CFS patients either.
Can't have it both ways.
>@anonymous 8:57
"Andrea Whittemore (who I do not know from Adam) has the absolute right to privacy in regard to what medications she is or is not taking. "
"Yes I agree, but not if you have already announced it on Facebook".
Did she really announce it on Facebook? Or is that also hearsay? I don't follow her online so have no idea whether she did or not. If she did though, it still does not follow that she has relinquished her right to privacy or is obligated to provide details about her treatment. It just doesn't. She still has the right to decide how much she wishes to disclose.
It also doesn't follow that the door is now open to denigrate, abuse and public vilify her. Apart from the fact that it's not the way to go about things in a civilised society, it's not smart from a legal standpoint. Slander is slander in any medium.
>If a person already reveals to all and sundry what treatment they are on, then it is already public knowledge. That is not the publics fault.
>“In my view the CDC paper should not have been published without a proper positive control, eg patient samples known to contain XMRV. If I had reviewed the CDC paper that's what I would have asked for.” Racaniello
So none of the negative papers should have been published either. The positive controls are also proven to not be prostate cancer XMRV or VP62/XMRV variant. The gag sequences are polytropic. The virus host range is still to be uncovered through full sequencing. This us all on hold with Mikovits being held up by the civil case.
>@anonymous 10:29 PM
"If a person already reveals to all and sundry what treatment they are on, then it is already public knowledge. That is not the publics fault"
I wouldn't be powering ahead on the basis of that premise. There are a few issues to consider on that front. The first one being, did the person actually disclose the information? Can it be argued that she did not? What constitutes disclosure? That's the sort of basic information that can get skewed among the misinformation that abounds on the internet. The lawyers will know exactly who said what of course.
>I kind of think its OK to speculate about what Andrea Whittemore is taking..I mean, many of us are literally dying. Sometimes you have to bend your principles a little.
I also think it is in very poor taste to appear on television and state you are better, clearly in an attempt to solicit donations for WPI, and not reveal to millions of sick people, how you got better.
I have nothing against Andre personaally, I am sure she is a lovely person and obviously does care a great deal about the CFS community; but when so many are at death's door, people cannot be blamed for trying to survive.
>@Curious
I have really nothing to add to what I've said about this previously. Thank you for questioning my motives and apologies for not making sense to you.
>@ Anon November 28, 2011 10:22 AM
Show me yours, and I show you mine.
Why I think I'm infected with a retrovirus ? Well:
1. Anything that can matter is ruled out.
2. It's chronic(acquired it 2007)
3. Symptoms don't say it all, but there's acombination of HIV and HTLV symptoms.
4. A retrovirologist honoustly thought I was infected with HTLV. She performed an HTLV-test only used for research purposes(Inolia?), and it was negative.
And now your answer(s):
– What makes you so sure to rule out a retrovirus, while my retrovirologist contact person from the Rega-Institute, Belgium, tells me they find new viruses each and every day. And I assume some of them are also retro… ?
– Why trying so hard to disprove it ? The harder you try, the more people might think the opposite ? Since new viruses are detected every day, and so much is unknown in micro/molecular biology, your discourse of denial a retrovirus involvement is not appropriate, tmho.
>Oh, you're quite welcome, RRM. A shame you're not willing to share more with us, though. What's a conspiracy theorist to do?
No, really–how tantalizing is it to consider how many years you have doubtless spent unleashing 50 posts a day on the internet, arguing that biomedical research in ME/CFS should be funded, rather than, um, let's just say, other initiatives. Think about it. The book one could write just on your crusade to prevent scientific misconduct in XMRV research is formidable–but access to your efforts against Wessely's evil minions would be HOT, baby! I can see it FLYING off the shelves!
Oh, just one thing: your selective outrage is duly noted. Heck, if I didn't know better, I'd think I was corresponding with the milkman of human kindness. I can't wait to see what you're going to do next to help patients.
You are free to take that any way you please–that, and a sincere wish that your sister improves in her struggle against an unspeakably horrible illness.
Have a great day.
>Didn't the WPI always say that they would be open about anything they find that helps patients, so that we did not have to travel to Nevada and could get the same treatment from local doctors? So how can they be closed-mouthed about the treatments that they claim are helping get people out of wheelchairs and back to normal lives?
>@ Agatha
Some data to back up your assertions would be good, as it is you appear as ill informed about your own Nation's health performance as you are about the UK's. Try http://www.nejm.org/doi/full/10.1056/NEJMp0910064 and http://www.nytimes.com/2010/10/21/opinion/21orszag.html
as start to your education. No health system is going to be perfect, and each has to be tailored to a given populations needs but at five times the size of the UK with a budget to match it's to be hoped that the US research does come up with more 'cures' than the UK. The ideas however that physicians complying to patients poorly comprehended demands improve health outcomes or that the US system provides significatly faster general availability of effective novel treatments are patently false.
Arguments about 'evul' NHS (cypher for British/Socialist/European and all things bad) versus US Healthcare (cypher for freedom/choice/apple pie and all things good) are irrelevant to the VIPdx test being ordered by UK doctors – a legal responsibility exists (whether that is approved of or not) and any doctor (is the suggestion that the blessed Dr Myhill might be involved ?)who ordered the VIPdx test would seem de facto to have a good practice case to answer. It seems a pretty simple equation -if UK doctors had exercised their well established duty to patients, then several hundred UK M.E/CFS sufferers would be a lot less poorer than they are now with consequent advantages to their health.
>WOW, now Dr Myhill has a case to answer!
Wow, In Vitro, you are SOME piece of work.
Sun will out soon, better crawl back now.
>@Anon:November 29, 2011 4:07 AM
Agatha brought up Myhill, I couldn't see the relevance unless the implication was that Myhill was one of those 'good' doctors who were signing off on the VIPdx tests. It is the case that Biolabs which was reported on M.E/CFS forums as acting as a UK purchaser for the VIPdx tests, and of providing a phlebotomy service to facilitate the test, is featured on Myhill's website.
My response was to a post in which Agatha called for responsibility for healthcare choices on the part of patients, but such responsibility can only be exercised where there is transparency, and that seems absent in the processes applying to the ordering of VIPdx tests for UK patients. Doctors, including those who promote services on proprietry websites, have a duty to foster transparency. Dr Myhill may be wholly incidental to the ordering of VIPdx test for UK patients. However opacity frequently arises where services are given endorsement by a doctor without specificity. As an example, in the case of Myhill's 'approval' of Biolabs, it's not a huge leap to see those patients who credit Myhill with especial competence, as having seen by association, Biolabs as an appropriate vector for the purchase of the (as it turns out) seemingly diagnostically worthless VIPdx test. Asking patients to be responsible is one thing, but to then demand suspension of scepticism about a doctor's motivation is perverse.
>The assays from Lombardi et al are clinically validated, as they used a previously clinically validated assay. Those from the negative papers are not.
The blood working group paper is invalidated.
As these viruses are accepted as capable of infecting humans where do they originate from? The 22rv1 explanation in Paprotka et al. is now known to be smoke and mirrors.
>"The blood working group paper is invalidated."
You can say that a thousand times more if you want to. It won't be any more true then than it was the first time you posted it.
>In Vitro, now you also admit an assay must be clinically validated. Thanks for that. So when are all the journals going to retract those poor papers and get everyone the answers they deserve?
>Questions regarding in invalidated BWG paper.
If the control tubes are exposed to 22rv1 how did they not become contaminated when the argument is that it just happens?
If no PBMCs were prescreened and controls cannot be declared negative there were no controls. So how can any assay have been said to have incorrectly identified a positive?
All the labs who had optimised to vp62 were only capable of detecting a spiked sample and not the viruses discovered. So they were not optimised to detect other MLVs as they were not optimised to even prostate cancer XMRV.
>Lol RRM, Billy and anyone else posting raw Lombardi data on the web after the date the materials were claimed to have been stolen is being investigated. That is what law enforcement officers do. They follow the evidence. So come on RRM which famous anti-science anti-retrovirus researcher have you been in contact with?
>Dear In Vitro Infidelium,
It's Agatha here, and I just want to make it clear that you are putting words into my mouth and distorting my meaning. First off, my only knowledge about Dr. Myhill is from what I have read from mainstream news sources on the internet, according to which she was nearly driven from her practice because of innocuous attempts to help her ME/CFS patients, such as giving vitamin B12 shots. I have no knowledge of her stance on XMRV testing, and I never said that I did. What I was saying was that I think it is pretty scary when a doctor has to constrain their practice of medicine to precisely what is in some sort of centrally ordained guidelines in order to continue practicing medicine.
I don't think you can even imagine the freedom of doctors to practice medicine as they see fit here in the US. For example, I didn't have to go "shopping" for a "good" doctor, as you imply. My ordinary family practitioner said he would be happy to order the XMRV test for me, although he thought it would be a big waste of money. I agreed with him about that. I'm glad he told me his opinion, but also glad that he didn't bar me from a legally available test. It would have been a different matter if insurance was going to pay, but that was not the case. It would have been my own loss. We have oversight here in the US, but only to keep us from being harmed by dangerous pharmaceuticals or procedures or devices, not to save us from our own stupidity. And that's fine with me.
I'm delighted that my doctor doesn't have to look over his shoulder to see if some government agent approves of his practice of medicine. If I choose an alternative doctor, who believes in homeopathy and acupuncture, whom does it harm? (It just so happens that my doctor is quite mainstream, but I'm glad I have the choice.)
The US health system has plenty of flaws, but its flexibility is not one of the flaws I've heard mentioned. In fact, it is it's greatest strength, so cherished by Americans that it we worry about reforms that might diminish that flexibility. On the other hand, we all recognize the need for reform.
You may have noticed, however, that the NHS is never used as anyone's model for reform. That is not because it is "European" or "Socialist," as you suggest, but because it is a nightmare for patients. The NHS has the worst reputation of any health system I've heard of, and not just among ME/CFS patients. When Americans look around the world for models for reform, we mention the Canadians, the French, the Danes, but never never the NHS.
>LOL — anonymous @ 8:41 — what about people posting the raw data before the material went missing from the WPI, or before Mikovits even got fired — are they being investigated too? I posted the raw data on the internet on September 30th, nobody has contacted me and asked me how I beamed into the WPI from 3,000 miles away. You are obviously making stuff up — like usual. Why don't you stop spamming Jamies blog with the same idiotic statements.
>"I'm delighted that my doctor doesn't have to look over his shoulder to see if some government agent approves of his practice of medicine."
Agatha, it is actually much worse than that in the UK. That sentence should read: "I'm delighted that my doctor doesn't have to look over his shoulder to see if some low life troll approves of his practice of medicine."
>@Anonymous November 29, 2011 8:41 AM
"That is what law enforcement officers do. They follow the evidence."
Agreed. Which is why it was not me who got arrested by law enforcement officers.
>Gosh dragging Dr.Myhill into this is really not on.
Dr. Myhill uses Biolabs to do a lot of her patients tests. Please would you like to call her office and clarify what tests she recommends her patient do through biolab before making such a tenuous irresponsible link.
>I am also very curious about Curious's questions to RRM.
I missed RRM's previous explanation of why he never seems to fight on our behalf.
Are you aware of the cohort problem, RRM?
>Let's ask that question of all the others.
Why are you making comments that WE ARE WRONG all the time instead of fighting on our behalf?
Of course, you can each claim that you are fighting denialists left and right in secret.
Maybe with a Spandex jumpsuit in primary colors.
That's convincing!
>I can't get on the new forum. It never shows me the captcha. I can't register.
Also, where is "Show unread posts since last visit"? Do you have to read every single forum individually?
Grr. I liked SMF.
>@ V99/Gerwyn etc.
RRM and others are NOT being investigated. This is you making stuff up, saying it repeatedly, and spreading crappy, wrong information around the Internet.
Why? What value to patients to convince them of bald-faced lies?
(I have to say this is a good one though, cos we can see you doing it here in front of us. Real-time lying).
>"what about people posting the raw data before the material went missing from the WPI, or before Mikovits even got fired — are they being investigated too?"
Anyone who posted the raw Lombardi data should and will be investigated. Not the published gel or slide.
>"@Anonymous November 29, 2011 8:41 AM
"That is what law enforcement officers do. They follow the evidence."
Agreed. Which is why it was not me who got arrested by law enforcement officers."
Two inherent problems with that statement. Have you, Billy etc been traced yet? Remind me was Mikovits even charged with anything. And has a crime been committed? Was anything stolen?
>"RRM and others are NOT being investigated. This is you making stuff up, saying it repeatedly, and spreading crappy, wrong information around the Internet."
Materials are alledgedly stolen and you think the police won't trace who was posting raw Lombardi data on the web. Ha ha!!!!!
>Anonymous lie spreader — please provide some proof that the raw data was stolen — a statment from Mikovits, a statement from the WPI. Why are you arguing over this — you just sound like an imbecile at this point.