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Why does 5AZA matter?

Lee

Messages
82
Parental approval of the doctor, does not justify risky, painful, clinically unnecessary, organizationally-unapproved spinal taps on children.

it does not justify risky, painful, clinically-unnecessay, oganizationally-unapproved research colonoscopies on children.

It does not justify taking a half million pounds money from attorneys suing the manufacturer of the vaccine he was criticizing, and failing to disclose that blatant conflict of interest.

Parental testimony was irrelevant to those charges.
 

currer

Senior Member
Messages
1,409
I can see parallells here.

When people with ME wanted to trial Antiretrovirals the medical establishment jumped up with one voice and blocked it.

When we would gladly give tissue for testing, we are not allowed to because it is "too risky"

Just what are these interests that are so eager to block research into these two illnesses?

Incidentally, the autism parents said their children had improved following the investigations and treatment. No-one had previously considered their gut symptoms worth investigating.

Lee, think of what you are saying from an ethical perspective. This is children's lives and futures we are considering here. Why do you want to stop research that will help them? Dont you have children of your own?

.
 

Lee

Messages
82
Of course. I must be an unethical evil man who wants children to suffer and die.

Yes, this is children's lives and futures. Bad science is BAD FOR children's (and other's) lives and futures. BAd science is bad for the prospects of my friend with ME/CFS. This is why bad science upsets me.

Wakefield directly harmed children, with medically unnecessary painful invasive research procedures. Indirectly, his bad science caused MMR vaccination rates to plummet, below herd immunity levels in many areas, causing a return of measles outbreaks that had become exceedingly rare. Children got sick, some has serious permanent nerve problems as a result. Some children died as a result.

I do have children of my own, and the effects of bad science is very much a concern of mine. I'm also quite disgusted when people stoop to 'don't you care about children' as a discussion tactic.

i want ME/CFS research to move in productive directions. I'm happy to see the multi-infectious agent screening effort still moving forward. I'd love to see good, well designed efforts to look for metabolic and immune correlates of ME/CFS, to help garner more clues about what causes it, and how to effectively treat it. I'm in favor of efforts to help people ameliorate the symptoms impact now, to whatever small extent we can, while we don't have effective treatments - and some of the CBT approaches strike me as being potentially useful here, and I'd like to see good research continue there as well. I'd like to see a pool of money made available for researcher-originated ideas, so that scientists immense creative insight can be brought to bear on trying to understand this disease.

And I don't want to see more money and time and resources and scientists insight and creativity thrown at bad science chasing a virus that isn't there an cant be found, instead of pursing directions that might have some chance of paying off.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi have no real opinion on Wakefield as I have never felt the need to research the facts, and wont draw a conclusion without research.

MMR may or may not cause issues including autism - all vaccines can cause issues.

Measles definitely causes issues. If it crosses the blood brain barrier it causes measles encephalitis. This is fatal for about one in four and causes neurological damage for about half the children.

I had measles encephalitis when I was 7. I have never been right since.

I do not recall the prevalence of measles encephalitis however. The issue would seem to be whether or not its more common than autism or other issues following vaccination. This should be a matter of epidemiology, but again I have not researched this.

What I can say is that vaccines are dangerous, but so is not getting vaccinated. As vaccination levels drop epidemic risk rises. Major epidemics can disable or kill millions. This is not as simple as vaccines are dangerous and so are bad. This is a complex issue, and I expect the debate will continue for years or decades into the future.

Bye
Alex
 

Mula

Senior Member
Messages
131
As Dr John Coffin was the peer reviewer of the paper I will try and discuss Science magazine and him as one, maybe I should include the editors in this as well. It was Coffin/Science/editors who made the alteration to the attached labels of the blot in the paper. Dr Ruscetti and Dr Mikovits are not responsible for the absence of 5-aza or the code switch, as the decision to not have this information rested with Coffin/Science/editors. Every variation so far is real, so please don't use the word fake.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
This is a good summary of what happened in cartoon form yet it contains a lot of good information.

http://darryl-cunningham.blogspot.com/2010/05/facts-in-case-of-dr-andrew-wakefield.html

Very good Barb. Thanks.

Edit:

Talking of Wakefield - though what it has to do with this thread is beyond me - I notice that LBRB posted another cracking piece about the latest:

The Wakefield Rehabilitation: http://leftbrainrightbrain.co.uk/20...LeftBrain/rightBrain+(Left+Brain/Right+Brain)

Seems that some had been getting excited by the mention of Wakefield's previous papers by Lipkin. Rather too excited as it turns out.
 

jace

Off the fence
Messages
856
Location
England
Mula, do you have a source for this information?
As Dr John Coffin was the peer reviewer of the paper I will try and discuss Science magazine and him as one, maybe I should include the editors in this as well. It was Coffin/Science/editors who made the alteration to the attached labels of the blot in the paper. Dr Ruscetti and Dr Mikovits are not responsible for the absence of 5-aza or the code switch, as the decision to not have this information rested with Coffin/Science/editors. Every variation so far is real, so please don't use the word fake.

Wakefield did not criticise the MMR vaccine as a whole, but rather the early batch of MMR that was bought cheap by the NHS when it had already been shown to be causing real problems in Canada, and was therefore withdrawn there. Before they could buy it (for about 1/3 the price of the safer alternative) the NHS had to indemnify the manufacturers against public liability for it's administration.

Personally, I believe that vaccination has to be used judiciously, and that giving multiple vaccinations to children and babies with compromised health is foolhardy. I believe that vaccinations make a lot of money for pharmaceutical companies. Follow the money.

barbc56, do you really expect us to take that unreferenced cartoon seriously? Where is the evidence to back up their assertions? The small exploratory paper, co authored by Wakefield, really touched a nerve, didn't it?

This is anctedotal evidence. The plural of anctedotal does not equal data. Even the authors of Wakefield's paper, wanted their names taken off and did not want to be associated with it.

http://www.youtube.com/watch?v=DHrgYxqcU0w

So all of the traceable parents of the children involved, 9 out of 12, publicly backing Andrew Wakefield, and none of the twelve parents voicing any concern = anecdotal evidence? Really?

More from the Wakefield story http://goldenhawkprojects.blogspot.com/
 

Mula

Senior Member
Messages
131
Mula, do you have a source for this information?


Wakefield did not criticise the MMR vaccine as a whole, but rather the early batch of MMR that was bought cheap by the NHS when it had already been shown to be causing real problems in Canada, and was therefore withdrawn there. Before they could buy it (for about 1/3 the price of the safer alternative) the NHS had to indemnify the manufacturers against public liability for it's administration.

Personally, I believe that vaccination has to be used judiciously, and that giving multiple vaccinations to children and babies with compromised health is foolhardy. I believe that vaccinations make a lot of money for pharmaceutical companies. Follow the money.

barbc56, do you really expect us to take that unreferenced cartoon seriously? Where is the evidence to back up their assertions? The small exploratory paper, co authored by Wakefield, really touched a nerve, didn't it?



http://www.youtube.com/watch?v=DHrgYxqcU0w

So all of the traceable parents of the children involved, 9 out of 12, publicly backing Andrew Wakefield, and none of the twelve parents voicing any concern = anecdotal evidence? Really?

More from the Wakefield story http://goldenhawkprojects.blogspot.com/

Dr John Coffin would be the source.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
As Dr John Coffin was the peer reviewer of the paper I will try and discuss Science magazine and him as one, maybe I should include the editors in this as well. It was Coffin/Science/editors who made the alteration to the attached labels of the blot in the paper. Dr Ruscetti and Dr Mikovits are not responsible for the absence of 5-aza or the code switch, as the decision to not have this information rested with Coffin/Science/editors. Every variation so far is real, so please don't use the word fake.

Mula, do you have a source for this information?

Dr John Coffin would be the source.

But Mula, do you actually have a source for that information, that we can all refer to?

If not, then we can't rely on that information.
 

Mula

Senior Member
Messages
131
But Mula, do you actually have a source for that information, that we can all refer to?

If not, then we can't rely on that information.

Dr Coffin is reliable enough. There is no published quote available, but he can be reached through his Tufts email address.
 

kurt

Senior Member
Messages
1,186
Location
USA
Probably nobody is reading this thread anymore, but anyway, I just ran into the following posts and want to respond (and no, I was not avoiding them, just had other things going on and never read them before now).

Kurt says, in his post #75

Well knock me down with a feather! I've never heard this before! Is it true Kurt? Is there any substantiation available? I've heard that Mikovits worked in a yacht club bar before, but a vitamin salesperson is a new one on me.

Actually, I am doubly surprised, in that her career so far with Ruscetti in the NCI labs and gaining her PhD hardly seems to leave time for such commercial endeavours. Mind you, many students do a bit of bar work to fund their studies...

Leela, doesn't Kurt work on computer based training or some such?

Having some experience with MLM design and development, I can assure you that Kurt's statement may not be entirely valid. Mikovits may be assigned executive saleperson membership, but that doesn't mean she has even seen the product. Many MLMs stack their tiers and assign sales to dead memberships, to boost profits, or to optimise operational efficiencies etc. His statement can be interpreted as a slur and a strong indicator of his intent: it undervalues and trivializes the work Mikovits has done for ME/CFS and will continue to do.

Speaking plainly, it is difficult to understand why many members go out of their way to sink the boot into WPI and Mikovits, particularly when WPI's efforts have raised the profile of ME/CFS beyond what anyone else has been able to do in decades. Irrespective of whether WPI and Mikovits marketed themselves badly, or were sloppy, they did more for us than any other agency, political and research, by a country mile. And if sloppiness and bad marketing is what it takes to lift up this community, then bring it on. It is both transparent and petty when forum members fail to acknowledge this, or do so backhandedly, and regularly post on these threads just to denigrate researchers and spread negativity about promising research.

Yes this is true, JM is executive level sales, her photo is on a pharmanex website, so that would be something she would submit. I don't know what her sales volume would have to be for that company, but it is a successful firm, so probably not trivial as Rusty suggests. But my point was not to 'smear' Judy because I think taking side jobs, no matter what they are, is a respectable thing to do. I did side work when I was a researcher (before ME/CFS). My point was simply to show that she had marketing experience, and I was as surprised as you to learn this, because how would she have time? But also it answered a question I have had about why has she been so successful with patients. Marketing skills might explain part of that. Anyway I think this is a legitimate point to raise, it has been raised.

Leela, why do you care what my profession was? I do have a background in research methods but not virology, my area was interdisciplinary, including cognitive and systems sciences....but that background does not help much with the ME/CFS or this discussion, I study out the issues like most other patients here. And nobody has the upper hand, I have read posts by patients claiming to know biological sciences that contained obvious errors. So I check facts for myself, I read many studies and my conclusions are my own.

Not sure how you get from the first statement to the second statement. Most of what you are saying is very vague and is noteable by many omissions. If we are to educate specialists, then I suggest a few pertinant facts should not be omitted.

If we exclude the VP62 plasmid, then there is no evidence whatsoever that a well designed PCR could not find HGRVs. If the negative studies focussed on VP62, then they should be negated themselves. In the BWG it appears that the WPI and VIPdx did not used their regular assays, supposedly because of the constraints of the BWG. So their assays have not really been challenged. The WPI lab assays in particular have not been challenged.

Furthermore by only mentioning PCR, you neglect to mention that other methods, eg culture and serology, have not been challenged. Again WPI and VIPdx by necessity culture the virus, as they acknowledge it is difficult to find in the blood. All you are really saying is that so far the negative studies and the BWG have supported what WPI has been saying all along: the virus is hard to find in the blood and you need good assays.

There is no proof yet that the virus is transmitted by blood; there are plenty of other vectors: placental transmission, vaccination, tissue transplantation, semen etc have not been ruled out. As for blood transmission, there is evidence that indicates that HGRVs are present in the blood during amplification stages only, and retreat to tissue reservoirs, during non-amplification periods, so they may only be transmissable by blood during the amplification period.

Finallly, very strong models for a single retrovirus to cause different pathologies already exist. There is also new evidence that newly identified HIV strains, as yet unidentified by PCR, can have unique pathologies, thus providing an explanation for different subsets of ME. This behavior is also well characterised in MLV studies. In fact what the latest HIV study has found is that multiple pathologies, caused by multiple strains, can co-exist in a patient.

The PCR is what matters the most in the whole situation because that is where you prove the sequence and organism is what you say it is. Other tests are dependent on the PCR's validity to varying degrees. So when there is doubt about PCR, you stop there and work that out. You are repeating arguments that I have also repeatedly addressed, but that is all over the forum, so maybe you have not read my responses. The VP62 issue is about a strain and not a family. WPI tested the strains (gag, env), many of the 0/0 studies tested the family (pol). Thus the studies using VP62 pol gene have tested for the MLV family, while those using the VP62 gag or env genes have tested for the strain. This is an important distinction, between the genes, that means the VP62 issue is not as clear as might appear, if labs used its pol gene they should find ANY MLV strain.

I am not aware of any precedent for a blood-borne retrovirus like XMRV to be transmitted by any casual contact, that is probably why WPI ran a blood transfusion study, they knew they needed blood-borne transfer models. This is also true in animal RVs, they are generally blood-borne. Anyway, all the transmission routes you mention are valid for retrovirus, but not common in ME/CFS epidemiology, and that is a point I first raised two years ago, and have mentioned from time to time. It is a problem with the MLV/HGRV hypothesis in ME/CFS. I'm not saying there is no possible solution to that problem, just that a novel transfer mechanism would have to be discovered if this is the cause of ME/CFS.