The Mouse That Roared: Patient Advocate

[shannah]

shannah just loves the way Chris pulls no punches - well worth the read.

Excerpt:

.....

"The news today was not good for ME/CFS patients - not good for their health. For the moment the largest exposure (what is most suspicious) of these "smoke 'em out" retro-virology papers is the timing. These scientists chose to have their XMRV contamination studies released five days before Christmas, a time when ME/CFS patients are under the greatest stress of the year. ME/CFS or XMRV-related illness is a stress-related disorder of the first magnitude, and many patients, like my daughter, go down for the count during this time, and take weeks to recover. It is a very sad and painful time for ME/CFS families and friends. ME/CFS is a very nasty illness with a great fragility and unpredictability to it. These virologists, in their little ivory towers, are can only think of these patients, as "complainers", resenting the "harassment" email activity of these desperate patients, now desperate for twenty five years and counting."

http://cfspatientadvocate.blogspot.com/2010/12/mouse-that-roared.html

 

[WithHope]

I have loved many of the patient advocate blogs - but as a fellow patient advocate and long time carer - I have to disagree with the general tone of this one.

As the famous HIV Doctor -Marcus Conant said - and I think he is bang on: "Don't blame your adversaries - bring them (your adversaries) in, don't cut them out. "

I think the single biggest challenge the patient and advocate community face is generating scientific inquiry and interest. Patients and carers alike have extremely limited energy and resources and I am convinced that any energy we do have should be focused on engaging more and more scientists to help solve this riddle. Not undertaking character assassinations. Whilst there have been shocking politics historically in the ME/CFS field that have directly resulted in the ill health of millions (as pointed out in Olsers Web). I do not believe that Coffin and co are engaged in some far reaching conspiracy to unseat WPI. Whether or not Coffin personally thinks deeply about the suffering of HIV & ME/CFS patients is not the point. He is a serious scientist and we need serious scientists to solve not just the riddle of XMRV but ME/CFS more broadly.

 

[LJS]

This post by the PA is ridiculous, it has a negative conspiratorial tone to the whole thing. To suggest that Coffin, Stoye, or Huber know XMRV exists in CFS patients and are putting up opposition just to get the WPI out of the game is ludicrous and just plan crazy. They are just like many scientist, they think they are right and are letting there ego show. The same thing is happening with Judy, she thinks she is right and said some things she should not have. The papers published today have valid points and may turn out to be true, we will not know for awhile. Alter summed it up nicely at the BWG, he said that both sides think they are right and are overly biased so no side is able to come to middle ground or accept the possibility that they are wrong. Just because you believe XMRV is not present in CFS does not mean you are part of a conspiracy to hide the truth from the public, are a evil person, or just trying get all the attention on yourself.

Articles like this do a lot of damage to the image of CFS; if anyone who does not have CFS reads this blog post they are just going to walk away thinking the CFS crowd is a bunch of nut cases.

 

[Angela Kennedy]

This post by the PA is ridiculous, it has a negative conspiratorial tone to the whole thing. To suggest that Coffin, Stoye, or Huber know XMRV exists in CFS patients and are putting up opposition just to get the WPI out of the game is ludicrous and just plan crazy. They are just like many scientist, they think they are right and are letting there ego show. The same thing is happening with Judy, she thinks she is right and said some things she should not have. The papers published today have valid points and may turn out to be true, we will not know for awhile. Alter summed it up nicely at the BWG, he said that both sides think they are right and are overly biased so no side is able to come to middle ground or accept the possibility that they are wrong. Just because you believe XMRV is not present in CFS does not mean you are part of a conspiracy to hide the truth from the public, are a evil person, or just trying get all the attention on yourself.

Articles like this do a lot of damage to the image of CFS; if anyone who does not have CFS reads this blog post they are just going to walk away thinking the CFS crowd is a bunch of nut cases.

Why do you keep claiming 'anyone' would think the ME/CFS community are a bunch of 'nut-cases'? I know this is a stick used to keep the community quiet by others, but seeing it on a forum ostensibly of ME/CFS sufferers and their supporters is 'crazy'.

I'm sick of anytime someone makes an objection to some VERY poor science or unsubtantiated claims being raised by people, this irrelevant accusation comes up with demoralising regularity.

 

[Angela Kennedy]

I have loved many of the patient advocate blogs - but as a fellow patient advocate and long time carer - I have to disagree with the general tone of this one.

As the famous HIV Doctor -Marcus Conant said - and I think he is bang on: "Don't blame your adversaries - bring them (your adversaries) in, don't cut them out. "
[QUOTE/]

Yes, Marcus Conant clearly had not even had a glimpse of ME/CFS politics, which is a completely different kettle of fish.

 

[xrayspex]

I am with Angela. Read Osler's Web again and remember what AIDs activists had to do to make things happen......if it wouldnt have been for Don Francis history could be very different. Lets not be niave. Can anyone answer this:

How did 2/3 of the CFS test tubes get contaminated, but only 2-3% of controls did?

 

[LJS]

Why do you keep claiming 'anyone' would think the ME/CFS community are a bunch of 'nut-cases'? I know this is a stick used to keep the community quiet by others, but seeing it on a forum ostensibly of ME/CFS sufferers and their supporters is 'crazy'.

I'm sick of anytime someone makes an objection to some VERY poor science or unsubtantiated claims being raised by people, this irrelevant accusation comes up with demoralising regularity.

Because a majority of people will write someone off as crazy if the other side starts trying to preach a conspiracy theory like the PA is doing in this blog post. This is not some big plot to undermine the WPI then steal the glory. If the WPI turns out to be correct then Coffin, Stoye, or Huber are not going to get the credit; that does not make sense.

I have no problem with patients speaking out, I have a problem when patients speak out with conspiracy theories and character attacks of anyone who disagrees with them.

 

[Angela Kennedy]

Because a majority of people will write someone off as crazy if the other side starts trying to preach a conspiracy theory like the PA is doing in this blog post. This is not some big plot to undermine the WPI then steal the glory. If the WPI turns out to be correct then Coffin, Stoye, or Huber are not going to get the credit; that does not make sense.

I have no problem with patients speaking out, I have a problem when patients speak out with conspiracy theories and character attacks of anyone who disagrees with them.

What's a 'conspiracy theory' in your eyes? Because for some people, just raising objections and showing how others may be acting in bad faith is a 'conspiracy theory'. THAT subjective term is often used to scare people into keeping their concerns silent as well.

As regards 'crazy', again, a particularly easy way to cow a community that already gets written off as 'crazy' on a regular basis, but a claim without substance. At this rate, people will be afraid to say anything in case people think they are 'crazy', character attacking conspiracy theorists.

 

[pictureofhealth]

The only point I would add is that I suspect Coffin and the other scientists actually had no idea what date their paper would be published. In fact, it might have helped Coffin had the paper been published before the mid December BWG meeting.

As I understood it, once a paper is submitted, it is entirely up to the journal editors to decide on the publication day/date, (not the scientists). Their timing is lousy!

 

[shannah]

Well Chris definitely sounds fed up and highly suspicious. Who can blame him? I certainly can relate.

It's been 15 months since the original official announcement (and chatter before that). How many of us thought that we'd be in treatment by now? I have no argument with sincere attempts to get the science right but there are groups that appear to simply be dicking around. It's the politics, the diversions, the manipulations, the egos, the need to be right, the extensive time to organize committees before any discussions even take place. All of these 'business as usual' matters to them are time wasting to us - precious time that some of us have so little of left.

I am glad that Chris is as vocal for our community as what he is. Whether I agree with everything he says is irrelevant. He is intelligent, articulate, bold and loud. We need his voice.

The time for games is over! Being reasonable and patient for so long has gotten us nowhere but sicker. Act up! Use outdoor voices! Desperate times calls for desperate measures!

 

[Angela Kennedy]

The time for games is over! Being reasonable and patient for so long has gotten us nowhere but sicker. Act up! Use outdoor voices! Desperate times calls for desperate measures!

My caveat is that being robust and brave enough to make clear objections IS 'reasonable' in itself. People should use 'outdoor voices' if this means being clear and loud and adversarial where necessary - and at this stage I think there needs to be even more adversarial objections by the community to much of what is going on with regard to ME/CFS, and it's a waste of time being quiet and 'patient' and wheedling to adversaries- but doing this does not have to preclude rationality.

 

[Cort]

What's a 'conspiracy theory' in your eyes? Because for some people, just raising objections and showing how others may be acting in bad faith is a 'conspiracy theory'. THAT subjective term is often used to scare people into keeping their concerns silent as well.

As regards 'crazy', again, a particularly easy way to cow a community that already gets written off as 'crazy' on a regular basis, but a claim without substance. At this rate, people will be afraid to say anything in case people think they are 'crazy', character attacking conspiracy theorists.

Some theories make sense and some do not. Stating that Dr. Coffin disrepects CFS patients. or is playing some little game at the cost of ME/CFS lives or that he thinks people with CFS are 'whiners', or that he doesn't want to find this virus, etc., etc. is, for all that I have enjoyed Chris's posts over the years, way over the top for me....

That is a very shrill post. I don't think it presents us in a good light at all. It suggests that anyone who does not support XMRV is out to get people with CFS....it could state that there are legitimate reasons for researchers to have differing opinions on the subject - instead it suggests that the only reasons to disagree on XMRV are to get CFS patients.

The Dec 20th publication of the Journal was unfortunate but the article suggests that the researchers engineered that without care for the ME/CFS community. Of course the researchers have nothing to do with the timing of their papers publication; that's the journal's decision.

Its an extremely dark post. I obviously have a different interpretation of the events.

 

[Cort]

My caveat is that being robust and brave enough to make clear objections IS 'reasonable' in itself. People should use 'outdoor voices' if this means being clear and loud and adversarial where necessary - and at this stage I think there needs to be even more adversarial objections by the community to much of what is going on with regard to ME/CFS, and it's a waste of time being quiet and 'patient' and wheedling to adversaries- but doing this does not have to preclude rationality.

I agree completely with this....With Chris's post I would argue that it wouldn't work. Going to his peers or to whomever and accusing John Coffin, one of the most respected retrovirologists in the world, -who has maintained an even tone on XMRV - of 'playing games' with ME/CFS lives, is not going to get us anywhere...

Complaining that CFS does not get the appropriate funding or the funding is devoted to the wrong areas; that is another story - I think people will listen to that.

 

[Angela Kennedy]

Some theories make sense and some do not. Stating that Dr. Coffin disrepects CFS patients. or is playing some little game at the cost of ME/CFS lives or that he thinks people with CFS are 'whiners', or that he doesn't want to find this virus, etc., etc. is, for all that I have enjoyed Chris's posts over the years, way over the top for me....

That is a very shrill post. I don't think it presents us in a good light at all. It suggests that anyone who does not support XMRV is out to get people with CFS....it could state that there are legitimate reasons for researchers to have differing opinions on the subject - instead it suggests that the only reasons to disagree on XMRV are to get CFS patients.

The Dec 20th publication of the Journal was unfortunate but the article suggests that the researchers engineered that without care for the ME/CFS community. Of course the researchers have nothing to do with the timing of their papers publication; that's the journal's decision.

Its an extremely dark post. I obviously don't share in that darkness.

I think we have to agree to disagree here Cort. While I would not have written in this way, his comments are - well- fair. They do highlight how demoralised the community has become and how 'scientists' here have not been acting very fairly, in many, many ways, over the past many many years.

I mean, we could start a list of the ways in which 'scientists' have attacked the characters of ME/CFS patients, attacked their motives just for raising objections, performed shockingly bad 'science' that directly harms patients, etc. etc. and we would be here for years just compiling that list. This latest offering from retrovirology is problematic at best, and the press release touted on the BBC is shocking in its irrationality and perversion of scientific process.

So anybody reading that post gets a flavour of how cynical and resentful ME/CFS sufferers and supporters have become because of the years of abuse of justice and scientific process and the damage that has done to bodies and lives? Ooh. Shocking. Just because you don't share it Cort, does not mean it's not there...

 

[Cort]

I think we have to agree to disagree here Cort. While I would not have written in this way, his comments are - well- fair. They do highlight how demoralised the community has become and how 'scientists' here have not been acting very fairly, in many, many ways, over the past many many years.

I mean, we could start a list of the ways in which 'scientists' have attacked the characters of ME/CFS patients, attacked their motives just for raising objections, performed shockingly bad 'science' that directly harms patients, etc. etc. and we would be here for years just compiling that list. This latest offering from retrovirology is problematic at best, and the press release touted on the BBC is shocking in its irrationality and perversion of scientific process.

So anybody reading that post gets a flavour of how cynical and resentful ME/CFS sufferers and supporters have become because of the years of abuse of justice and scientific process and the damage that has done to bodies and lives? Ooh. Shocking. Just because you don't share it Cort, does not mean it's not there...

I don't disagree with that and I'm not saying that the abuse is not there. I'm disagreeing with his dragging John Coffin into that mess. John Coffin hasn't said those things and Chris wasn't talking about CBT and the UK approach to CFS; Chris was talking about retrovirologists like Coffin 'playing games' with CFS patients lives and viewing them as 'whiners', etc....

I think the post does reflect the cynicism at the scientific process that has developed over the years -but sometimes that cynicism goes too far and in the case of Dr. Coffin I think it has dripped into an area where it is not warranted.

And issn't that another problem; when cynicism pervades everything.....when a community essentially becomes anti-Science and decides that everything that doesn't go their way is somehow tainted, the result of nefarious forces or bad scientists...

If XMRV fails its going to be really rough...Its going to be so easy to fall back on the "they were out to get us" mindset. If it fails I hope that the evidence is clear enough that that does not happen and we haven't raised yet another demon to rail against for the next 25 years....another reason to distrust everybody...

Chris's blog is setting us up for that...Its suggesting that Dr. Coffin is part of the fix! If Dr. Coffin is part of the fix then there's no hope.....

 

[Wayne]

I mean, we could start a list of the ways in which 'scientists' have attacked the characters of ME/CFS patients, attacked their motives just for raising objections, performed shockingly bad 'science' that directly harms patients, etc. etc. and we would be here for years just compiling that list. This latest offering from retrovirology is problematic at best, and the press release touted on the BBC is shocking in its irrationality and perversion of scientific process.

Thanks Angela for that succinct and accurate historical perspective, and how it relates to these recently published articles. I'm copying your paragraph and sending it along via e-mail to acquaintances I normally keep updated on the latest in ME/CFS news.

Best Regards, Wayne

 

[Angela Kennedy]

I don't disagree with that. I disagree with his dragging John Coffin in there. John Coffin hasn't said those things and Chris wasn't talking about CBT and the UK approach to CFS; he was talking about retrovirologists 'playing games' with CFS patients lives and viewing them as 'whiners', etc....

I think the post does reflect the cynicism at the scientific process that has developed over the years -but sometimes that cynicism goes too far and in the case of Dr. Coffin I think it has dripped into an area where it is not warranted.

Isn't that another problem; when cynicism pervades everything.....when a community essentially becomes anti-Science and decides that everything that doesn't go their way is somehow tainted, the result of nefarious forces or bad scientists...

I don't know about John Coffin, to be honest. Some of his pronouncements have troubled me. My inner jury is still out on him.

But this is not a community that is becoming 'essentially anti-science' and cynical about everything (you only have to see the expressions of hope on this forum, which sometimes frustrate me, probably because I DO have a (what I think is understandably) a high level of cynicism: and the things 'not going our way' actually do show, demoralisingly frequently, evidence of being tainted, the result of nefarious forces and bad science! I don't care about the scientist's and their characters, whatever those might be: the incidents and claims and absurdities are what matters. Most people in the community are like this most of the time. They are concerned about what is being done, not the characters (though sometimes people's frustrations come through - I can see that -and they make comments about the characters, which I would always advise against).

But if Coffin has constructed the ME/CFS community as whiners in some way - he should be called on it, though it looks as if the PA is actually decrying a lack of respect for the illness in Coffin (and Stoye). Is he right in what he says? I don't know. I have been concerned at Stoye's behaviour I have to admit.

 

[August59]

If Coffin plans to remain a "well respected" virologist it would be to his advantage to distance himself from Stoye. If Stoye is well respected virologist then the "science" is not worthy of pursuing XMRV, contamination or anything related.

Stoye is poisonous to this science and it has nothing to do with his knowledge, it's his manner. If I had grab a microphone from a woman like he did at the XMRV meeting my father would have knock me out (2 times) one for being disrespectful and again for being disrespecrful to a lady.

 

[camas]

Cort, with all due respect, I wish you were less concerned with what Chris is writing on his blog and would address the issue of Trine Tsouderos pulling member comments from this forum as fodder for her latest hit job.

Although this is a public forum, are we as patients not entitled to a reasonable right to privacy? At the very least Esther12 and withhope should have been contacted directly before they were quoted in this article. Perhaps you could have a chat with Ms. Tsouderos's editor?

 

[Jemal]

Cort, with all due respect, I wish you were less concerned with what Chris is writing on his blog and would address the issue of Trine Tsouderos pulling member comments from this forum as fodder for her latest hit job.

Although this is a public forum, are we as patients not entitled to a reasonable right to privacy? At the very least Esther12 and withhope should have been contacted directly before they were quoted in this article. Perhaps you could have a chat with Ms. Tsouderos's editor?

I don't think you can stop them from taking comments from an open forum. I am not sure I would want to stop them even if we could.
The only thing that's bugging me is that the usernames were used as well: this wasn't really necessary and it's uncommon practice I think.