New Paper - Gammaretroviruses - Maureen Hanson, David Bell

[Bob]

Hi, ukxmrv. This is an interesting statement. Would you expand on what this means? Has there been friction between those who come down with ME/CFS from an epidemic and other patients?

Thanks.

BarbC.:>)

FYI Barb (But I don't necessarily agree with all of it):
http://forums.phoenixrising.me/inde...ndon-conference-2012.12701/page-3#post-271650

 

[ukxmrv]

Barb,
There has been a long history of friction between some epidemic ME patients (I am one) and some later CFS patients. There has been seen both in the local support groups and online. I'm not aware of anyone writing it up as a paper or a book. It started around the time that the term CFS was invented. It was particularly prevelant at the time of the earlier retroviral sagas.

That's what led to the old question - "can ME and CFS patients ever work together"?

Anyway, back to the point of this thread again. If we ME epidemic patients would like retroviruses investigated why do you think that is a bad thing?

I'm sure that the Bell patients in the latest paper would want to know why their blood shows different results to other patients. I've sure that the patients in New Zealand who showed retroviral activity in their blood would like to know what it was.

If they showed RT would other ME and CFS patients also show the same and why has no one apart from the NZ doctor looked? He wanted to continue research but no one would fund him then.

These are real people we are talking about here. I don't want to see this happen ever 10 or 20 years without it being investigated. Scientists aren't doing the basic things such as following up to see if there is RT in patients. Some scientists when they condemned XMRV were quite happy to admit that there may be a RV - so why aren't they looking for it by doing the tests to see if there are signs of one?

You haven't explained the part about "holding back progress" and how patients with an interest in seeing any retroviral link explored would be doing this?

I'm not sure what your horse is in this race and why you continue to show an interest in how others would like done about their valid concerns around ME and CFS research?

 

[barbc56]

Ukxmrv, Thanks for refreshing my memory. Of course, the Hummingbird blog and followers. I forgot all about that. Facepalm!

You haven't explained the part about "holding back progress" and how patients with an interest in seeing any retroviral link explored would be doing this?

As far as I'm concerned, the questions such as the one you and others have been asking me the last several pages are just not relevant to the topic at hand.

There seems to be a distinct pattern that a group of posters have developed towards someone who doesn't agree with their take on things. When a person posts another view they are followed by posts with what I consider contentious questions, sweeping generalizations, complete with unfounded negative implications about the person who has posted a different perspective.

I feel these type of posts are neither constructive nor add anything to the thread.

There are others here, that hold these very same views but know how to debate in what I think is a more appropriate manner. I am more likely to answer such question from these people.

I have made it perfectly clear what my views are so you should be able to figure out what I meant. I will continue to add my two cents worth to anyone who posts, whatever their view, but only when I feel it is relevant or adds to the conversation.

Take care.
Barb C.:>)

 

[Mark]

There seems to be a distinct pattern that a group of posters have developed towards someone who doesn't agree with their take on things. When a person posts another view they are followed by posts with what I consider contentious questions, sweeping generalizations, complete with unfounded negative implications about the person who has posted a different perspective.

I feel these type of posts are neither constructive nor add anything to the thread.

There are others here, that hold these very same views but know how to debate in what I think is a more appropriate manner. I am more likely to answer such question from these people.

I quite agree Barb. I have noticed in passing, in this thread I think, a couple of insinuations and questions about your motives for posting, and those questions may have verged on personal attacks and may have been moderated if they had been reported. These constant questions about why you are posting on this subject are inappropriate ad hominem attacks and I would like to see them stop. Please feel free to report them as and when they occur.

The question you quoted above doesn't seem a good example of that, though:

You haven't explained the part about "holding back progress" and how patients with an interest in seeing any retroviral link explored would be doing this?

I think you said something along the lines that patients still interested in retrovirology, HGRVs etc were "holding back progress", and a discussion of whether and how that's the case seems reasonable, but of course you're not obliged to answer questions of any kind.

 

[barbc56]

Thanks Mark. I feel that I have explained the above if not in this post in others why I would like to see the research take a different direction. I was responding to Jace so my answer was sort of tongue in cheek and trying toshow that what one person thinks is hindering progress is anothers progress.

Jace wrote:

You cannot have a definitive study. That is politics, not science. Science is a process of seeking to get as close to the truth as possible, but one cannot ever say "It is this way, and there is no other way" as our understanding of the natural world is continually evolving. Unless, of course, you want to shut the door on progress...

I probably should have cited Jace's quote but my post was right under his. Lesson learned there and I will go back and change that.

What I wrote was taken out of context with an added spin.

As far as I recall I didn't say anything about a definitive study but did say that the upcoming LIpkin results should answer a lot of questions. Might even raise a few.

Do I believe the research into HGRVs shoud be stopped? No, I just think it should not be a high priority at this point in time according to the science. Nothing has really come up to show other RVs, viruses are out there. In my opinion, while it's still a possibility I don't believe it is very probable.

I would like to see more research into our immune systems.

So I was in a damn if you do and damn if you don't situation and decided not to continue as it wasn't worth it and not contributing to the thread.

As far as personal attacks, I feel that they are more telling about the posters rather than myself. I try not to give other people the power to upset me and it really took years to get to this point. I prioritize what issues are worth debating or continue to debate.

It took this damn illness to see that it is imparative to prioritize as I have limited energy. If I prioritize, I can focus on other issues.

Unfortunately, personal attacks whether implied or outright sometimes stops me from reading or responding to some posts but I try to keep that to a minimum.

Take care.

Barb C.:>)

 

[ukxmrv]

Hi Barb

You said

Quote
Ukxmrv, Thanks for refreshing my memory. Of course, the Hummingbird blog and followers. I forgot all about that. Facepalm!

Not sure what you meant by that. I have no input into Hummingbird and am not sure what you mean by "face palm"? The Hummingbird blog is the work of one patient and I am not a "follower".

 

[barbc56]

Hi Barb

You said

Quote
Ukxmrv, Thanks for refreshing my memory. Of course, the Hummingbird blog and followers. I forgot all about that. Facepalm!

Not sure what you meant by that. I have no input into Hummingbird and am not sure what you mean by "face palm"? The Hummingbird blog is the work of one patient and I am not a "follower".

A Hummingbirds Guide to ME. Jodi Bassett is the person who writes the blog. She has been active in this community for 15(?) years or so. It was the first time I had heard of any discord between people sick after an outbreak verses an individual who gets cfs/me after an illness. She doesn't believe the latter group has ME. She has written a book and many articles but she may not be known to everyone as she is based in Australia.

Sub-grouping or refining or renaming ’CFS’ will only waste another 20 years. There is no such distinct disease/s as ‘CFS’ – that is the entire issue. For the benefit of all the patient groups involved; the bogus disease category of ‘CFS’ must be abandoned and patients with M.E. must again be diagnosed with M.E. and treated for M.E.

http://www.hfme.org/meoverview.htm

Certainly food for thought. It's been years since I have gone to her site and your post refreshed my memory. Thanks.

Sorry about the font size on the quote. I can't change it.

Barb C.:>)

Facepaolm means

The act of dropping one's face / forehead into one's hand. Usually accompanied by a "thunk" or a cr a cry of "D'oh!"

http://www.urbandictionary.com/define.php?term=facepalm

I couldn't find a smilie to go with the expression.

 

[ukxmrv]

I'm still at a loss to understand the relationship between the views of the author of the hummingbird site and my own posting. Not sure what you were trying to say there.

If you have a look on the internet in general you will find lots of information on the different criteria and groups. For example Dr Lenny Jason's work on how the different criteria overlap and don't overlap.

It's a common and mainstream theory that there are different groups under the CFS banner. Nothing "face palm" as far as I can see about it.

It may be that the Bell cohort returned a different finding in the Hanson paper because they are epidemic patients. It may be that the New Zealand patients who showed signs of RT returned this finding because they had an epidemic of ME in that country. Maybe if they tested another group of CFS patients the same finding wouldn't be there. We don't know and I think that we should know.

It is my feeling that these patients deserve to have an answer. We don't know but as the Hanson paper demonstrates it may be pertinent that the epidemic patients had a different result from those at a CFS clinic. Could be a difference in handling or some other explanation but an explanation is warrented.

 

[Mya Symons]

This is important because it is only fair to emphasise again that nobody knew about these risks before Lombardi et al, in that the levels of contamination of lab products with XMRV and related MLVs are now extremely widespread. That's significant because again it shows that Dr Mikovits could not have been expected to expect this to be the case - it is a shock to everyone. It's an even more significant point, IMO, because the completely unexpected and unknown spread, which has been going on for 15 years or more, ofthis particular lab-created retrovirus that infects human cells, is a big surprise finding, and it is surely an important one - and should be bigger news. How much more of this has been going on? And has any such agent, ever in history, infected anything which has been distributed for human use (such as specific cell lines used to grow vaccines)? The scale of this problem and the length of time it has been occurring, by the law of averages suggests: Almost certainly, yes. No pathogenic example has yet been identified, but that is not to say that one does not exist. Sporadic cases of H1N1-induced novel forms of narcolepsy, anyone?




Two points I've recently highlighted elsewhere on these forums are re-iterated again here.

It is still unknown whether unkown retroviruses are inciting factors in ME/CFS. Obviously, but seems to need stating.

Most of the studies of ME/CFS samples have not used primers that would detect all groups of MLVs. So MLVs, other than XMRV specifically, have not been much searched for.

And as a final comment: after all this time, after all the analysis in this study, all the experiments performed, it still was not possible to nail the question of whether the sequences they sporadically detected really did come from the patients' blood, or not. That just illustrates how cutting-edge and difficult the science of this is, and shows that there is still a great deal of work to be done before all the mysteries around these viruses will be fully explained.

What about the Mouse Mammary Gland Tumor Virus? I was just reading an article on this. Now some scientists are saying that 2 out of 3 women with breast cancer have this virus in their breast tissue. Could this have spread to humans through laboratory contamination (i.e. contaminated vaccines or cell lines or some other type of contamination)?