Letter to Dr. Coffin

[its ME Jeff]

I sent a letter to Dr. Coffin and would like to share it in hopes that others will write a similar letter to him.

Hello Dr. Coffin,
I will spare you my sob story about this horrible illness (ME/CFS), but I will tell you that I would not wish this illness on my worst enemy. There are millions of us out here dealing with this and that many people can't possibly be all head cases. There has to be some infectious agent causing this. Every single one of us will tell you that we are infected with something. That being said, surely you must see how absolutely desperate we are for answers. We need strong researchers that share our conviction that there is something there.
As an XMRV + patient, I was shocked to hear you say we should move on from XMRV. How could any good scientist say anything like this with so many unanswered questions still on the table and so many studies still in the works? That's not science, that's a biased opinion. Why Dr. Coffin? Why?

 

[Rrrr]

very good! thank you.

 

[omerbasket]

I agree with you, but I hope that people would stop thinking that Coffin is the judge. He CAN be wrong, he is not better than Dr. Mikovits, and his record is not as good as the records of Drs. Ruscetti and Alter.

 

[toddm1960]

If you leave Judy's XMRV out of the discusstion, and talk only to coffin's (escaped from a lab) XMRV. He's telling us it's out there, but we should walk away from all reseach into this retrovirus? With that statement is he also telling us it's harmless to humans? Has he even checked lab workers for it? Could some of these lab workers be the "pedigreed negitives" used in the BWG study? coffin's XMRV needs to be studied just as much as Judy's, but his view is to kill all study of XMRV.......why?

 

[Boule de feu]

It's funny the impression i get from all this. It feels like he has been hanging out with the wrong crowd for a little while...
or he knows something we don't know and he does not want us to know. It's not 'clean clean'
He used to be a very good CFS activist.
It feels like he's has changed sides for some reason.

 

[Boule de feu]

Coffin does think there is an infectious agent. I don't think he is denying that.

 

[jayhawk]

I dont feel that your message to Dr Coffin is entirely fair or likely to be fruitful long term for ME patients. I dont believe he has suggested pyschobabble for a cause of ME? has he? I also dont think everyone would say they believe an infection is the only plausible cause for ME. It might be on the top of a logical list of theories but not quiet as being suggested here. I would say he isnt my favorite guy to see at these meetings anymore but I dont question his motives. I remember at the beginning of the XMRV research the patients were praising him..but now that he isnt saying what XMRV supporting patients want him to say he is being....

I would, however, like to say to Dr Coffin that he should not dismiss XMRV at this time, he can leave it behind but please don't do anything to stiffly the research and that I would love to see him pursue his own research into viral causes of ME...be it looking at other retroviruses or whatever his interest my lead him.

 

[Boule de feu]

I"m saying it seems that he has changed sides because of this.

John Coffin on XMRV and how it is infectious in humans...

One year ago - February 14, 2010

PART 15
http://www.youtube.com/watch?v=SQw257wLV-4&feature=youtube_gdata_player

AND

PART 16
http://www.youtube.com/watch?v=OirYsFktu1I&feature=youtube_gdata_player

I haven't listened to the whole thing but there are some sentences which seem to contradict what he is saying today.

Part 15 -
4:56 In the case of CFS, the association is MUCH CLEARER than in prostaste cancer because... they can get LIVE VIRUS out of PBMCs and plasma (Does he think that prostate cancer XMRV is also contamination?)

5:22 It's quite hard to isolate a LIVE VIRUS this way, it tends to be coated in antibodies, and it tends not to be in pretty good shape...

6:12 the VIRUS that you ISOLATE is INFECTIOUS for a number of human cell lines...

around 9:00 he is talking about how XMRV has different mutations

9:25 XMRV is INFECTIOUS in HUMANS

9:30 he is talking how anti-virals would not work (because of low mutations) but it would be great for vaccines

The best is found in part 16, at around 2:00

He argues why XMRV can't be a contaminant.

Look at his cartoon (2:44)! What happened to that XMRV ancestors theory?
he says - GOT TRANSMITTED TO HUMANS

I stopped at 3:05. Too exhausted (red cheeks, fever, sore throat). Can't keep going.


Wasn't he involved in the blood transfusion story?
I'm not sure if he was the one shouting how dangerous XMRV was for the population.
It would be easy to find that out by looking at other videos.
What made him change his mind?

 

[Sing]

It's funny the impression i get from all this. It feels like he has been hanging out with the wrong crowd for a little while...
or he knows something we don't know and he does not want us to know. It's not 'clean clean'
He used to be a very good CFS activist.
It feels like he's has changed sides for some reason.

Thanks, Boule de feu, for your take on Coffin plus all the research about what he said before. Maybe his name is suggesting a line of approach to him. Just joking but it wouldn't be the first time that a name suggested a course of action to its owner.

 

[Boule de feu]

Woooooo.... You are not being nice but - shame on me, I had the same thought. LOL

I had written all kinds of nasty remarks to my post too, but after reading jay hawk's message, i decided to erase them all. LOL

One thing that Coffin says at the beginning of the PART 15 video is that he is not an expert in CFS. (Omerbasket is right!)

I think we should keep that in mind.

 

[dsdmom]

One thing that Coffin says at the beginning of the PART 15 video is that he is not an expert in CFS. (Omerbasket is right!)

I think we should keep that in mind.

Then why invite him to speak @ the state of knowledge of ME/CFS?? Seems like he was there just to dispute Judy. Why only Judy? Why weren't there opponents there of other researchers? Say, someone disputing Chia or klimas or light? Why is only Judy being disputed? When all research can be called into question for any reason...because Judy's research has made the most headlines? Hogwash .seems odd they just had a non cfs expert to dispute Judy.

 

[jayhawk]

I think you have a good point dsdmom. It seems like there has been a history of bringing in non-CFS/ME experts who coincidentally always have a nay saying message. I do think its a good idea to invite "outside experts" to bring in fresh perspectives and for recruitment but it seems like something is off here in regards to these goverment sponsored meetings/conferences. That being said, I do have to say after looking at the agenda that they brought in some really good participants... so I cant fault them completely.

 

[Boule de feu]

Maybe they wanted to avoid what happened at the CROI meeting.
All negative results. I guess that by inviting Coffin, they were showing that they are not biased.
They wanted both sides of the XMRV story.

 

[Boule de feu]

Coffin seems to like the attention and to be where the controversy is.
However, I don't understand why he did change sides.

 

[Snow Leopard]

Because that is the way the evidence is pointing. Until fresh evidence of chromosomal integration in uncontaminated human samples is discovered, scientists are going to be increasingly sceptical as to whether any humans are actually infected.

Saying that a virus could in principle infect a human because it can infect human cell lines is not the same thing as saying that humans are infected. Secondly, even if they were, more concrete evidence is required to show how such a virus actually causes human disease.

 

[Boule de feu]

Because that is the way the evidence is pointing. Until fresh evidence of chromosomal integration in uncontaminated human samples is discovered, scientists are going to be increasingly sceptical as to whether any humans are actually infected.

Saying that a virus could in principle infect a human because it can infect human cell lines is not the same thing as saying that humans are infected. Secondly, even if they were, more concrete evidence is required to show how such a virus actually causes human disease.

So, if this is the case, why would he turn around and say to forget about XMRV?

 

[ukxmrv]

Because that is the way the evidence is pointing. Until fresh evidence of chromosomal integration in uncontaminated human samples is discovered, scientists are going to be increasingly sceptical as to whether any humans are actually infected.

Saying that a virus could in principle infect a human because it can infect human cell lines is not the same thing as saying that humans are infected. Secondly, even if they were, more concrete evidence is required to show how such a virus actually causes human disease.

The Science paper still stands. Nothing has happened to disprove or shed serious doubts.

What exactly does Coffin provide for us? Does he bring the science forward in a way that would explain why XMRV is doing inside patients, test-tubes or whereever it is?

Is Coffin going to look for this other Gamma retrovirus that could possibly be in patients that he acknowledged? Is he contributing toward a possible cure for this possible retrovirus? No, and he should be.

Coffin is not producing anything meaningful that would contribute to my understanding of my disease or a cure being found for it.

Let him put his money where his mouth is.

 

[Boule de feu]

If i remember correctly, he is working on something right now. He is trying to get to the bottom of this.

 

[Doogle]

From the comments I have heard from Coffin, I disagree that he believes we are all head cases and there is no infectious agent. His opinon about contamination is his opinon. Obviously he has put in a lot of money and time to try to justify it. He may be right or he may be wrong, but calling his opinion biased is putting a judgment on it that may not be correct. Alter explained that the blood working group and Lipkin studies will probably add the most definitive data one way or the other. I don't understand why Coffin is continuing to research XMRV. He claims it is a drain on his resources and his hypothesis is nailed down as far as he is concerned. Fine, if he thinks it's a dead end why should he spend more time on it?

I do agree with ukxmrv:

What exactly does Coffin provide for us? Does he bring the science forward in a way that would explain why XMRV is doing inside patients, test-tubes or whereever it is?

Is Coffin going to look for this other Gamma retrovirus that could possibly be in patients that he acknowledged? Is he contributing toward a possible cure for this possible retrovirus? No, and he should be.

Coffin is not producing anything meaningful that would contribute to my understanding of my disease or a cure being found for it.

Let him put his money where his mouth is.

If Coffin really wants to help us, why doesn't he start to work on the numerous other viruses that could be making us ill?

 

[toddm1960]

Remember the more revolutionary your scientific discovery is......the more and the harder current sciend fights back. That's what we're running into again, just like 1991 with Elaine's discovery, and just like every other giant discovery that changes current thinking. Now lets also not forget to see who's fighting the most.......the people making the most money from current wisdom or who it will cost the most if thinking changes.