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The Fight is on...Imperial College XMRV Study

Abraxas

Senior Member
Messages
129
Actually, the Reno Gazette article itself mentions that a story about McClure's study will appear in the print version of "Science" on Friday. I noticed a tiny blurb in the upper right corner that says that the print edition of Science will feature a longer version of the lousy Sam Kean article we already saw in "Science Now". So I guess that's how McClure will appear in the print edition tomorrow. That was a dreadful article, and now I wish I had written in to complain about it!
(He says, taking for granted that the editors of "Science" would have read his letter and said "My God - He's right!")

Hi Dr Yes - you're right I didn't notice that bit. Pehaps it would be worth a letter of complaint following the extended version tomorrow anyway?!
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Science tomorrow

I would imagine that the MEA is relying on this and does not have a corroborative source.


From: "Dr. Marc-Alexander Fluks" <fluks@COMBIDOM.COM>
To: <CO-CURE@LISTSERV.NODAK.EDU>
Sent: Thursday, January 14, 2010 11:30 AM
Subject: [CO-CURE] RES,NOT: XMRV Update: Science magazine will publish story on CFS and XMRV


Tomorrow, Science magazine will publish a paper where Myra
McClure says she has not found no link between XMRV and CFS.

This is important because the Lombardi paper was published
in Science.

--------------

I'll ask Tony B.
 
W

wornout

Guest
This is my first time on here. I've been reading this post. I'm a fan of WPI.

I think the way they have responded is appropriate.

this comment has stuck with me

"Nobody but erv seems to think that the politics and controversy means that the science is bad - everybody knows that, in the end, the science will have to stand or fall on its own merits"

Science has always been involved in politics and contoversy. I think most people would agree the world is round and not the center of the universe. How about stem cell research. I could go on but I'm to worn out.

"In the end, the science will have to stand or fall on its own merits" I disagree with this too. Science is based on funding. If you don't have the funds to support your research it will fail regardless of it's merits.

I think we are extremely lucky that WPI being privately funded has made this major break thru. Where have are government funds been going?

I think it's great that the Public is involved. Although things are still being kept from the public it is getting harder and harder to do that when people speak out.
 

parvofighter

Senior Member
Messages
440
Location
Canada
Letters to Science Magazine - if they give IC air time

Here are a few links so you can be ultra-responsive, in the event Science Magazine gives air time to the IC study:

Science Magazine Feedback page: http://www.sciencemag.org/cgi/feedback
Letters to the Editor: http://www.sciencemag.org/misc/editor.dtl

Instructions for Science Letters to the Editor: Full addresses, signatures, and daytime phone numbers should be included. Letters should be brief (300 words or less) and may be edited for reasons of clarity or space. They may appear in print and/or on the World Wide Web. Letter writers are not consulted before publication.
Letters to the Editor may be submitted in the following ways:

  • Online (preferred): www.submit2science.org
  • By fax: 202-789-4669
  • By postal mail:
    Science
    Letters Department
    1200 New York Avenue, NW
    Washington, DC 20005, USA
We strongly encourage electronic submission.

I'm out of commission tomorrow, and possibly this weekend. Feel free to copy/paste from my letter to Science (Science-Based, @ http://www.economist.com/user/Science-based/comments ) if you wish. Just make sure you tailor anything to the actual Science paper, if it appears.

Go get'em!:D
 

Kati

Patient in training
Messages
5,497
Here are a few links so you can be ultra-responsive, in the event Science Magazine gives air time to the IC study:

Science Magazine Feedback page: http://www.sciencemag.org/cgi/feedback
Letters to the Editor: http://www.sciencemag.org/misc/editor.dtl

Instructions for Science Letters to the Editor: Full addresses, signatures, and daytime phone numbers should be included. Letters should be brief (300 words or less) and may be edited for reasons of clarity or space. They may appear in print and/or on the World Wide Web. Letter writers are not consulted before publication.
Letters to the Editor may be submitted in the following ways:

  • Online (preferred): www.submit2science.org
  • By fax: 202-789-4669
  • By postal mail:
    Science
    Letters Department
    1200 New York Avenue, NW
    Washington, DC 20005, USA
We strongly encourage electronic submission.

I'm out of commission tomorrow, and possibly this weekend. Feel free to copy/paste from my letter to Science (Science-Based, @ http://www.economist.com/user/Science-based/comments ) if you wish. Just make sure you tailor anything to the actual Science paper, if it appears.

Go get'em!:D

Parvo, have I told you lately that you're wonderful?:hug::D:victory::hug:
 

CJB

Senior Member
Messages
877
This is my first time on here. I've been reading this post. I'm a fan of WPI.

I think the way they have responded is appropriate.

this comment has stuck with me

"Nobody but erv seems to think that the politics and controversy means that the science is bad - everybody knows that, in the end, the science will have to stand or fall on its own merits"

Science has always been involved in politics and contoversy. I think most people would agree the world is round and not the center of the universe. How about stem cell research. I could go on but I'm to worn out.

"In the end, the science will have to stand or fall on its own merits" I disagree with this too. Science is based on funding. If you don't have the funds to support your research it will fail regardless of it's merits.

I think we are extremely lucky that WPI being privately funded has made this major break thru. Where have are government funds been going?

I think it's great that the Public is involved. Although things are still being kept from the public it is getting harder and harder to do that when people speak out.

Welcome to the forum. I agree with you 100%. The WPI research has already helped me. I printed the press release and showed it to my doctor on my last visit. It nearly knocked him off his chair. It's a whole new game for me. I know he is not accepting their findings as fact, but it is a CLUE and that's more than we've had to go on thus far. He's no longer going to be trying to convince me to try more anti-depressants.

It IS getting harder and harder to attribute CFS symptoms to neurosis. That's huge and it's important.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
This is my first time on here. I've been reading this post. I'm a fan of WPI.

I think the way they have responded is appropriate.

this comment has stuck with me

"Nobody but erv seems to think that the politics and controversy means that the science is bad - everybody knows that, in the end, the science will have to stand or fall on its own merits"

Science has always been involved in politics and contoversy. I think most people would agree the world is round and not the center of the universe. How about stem cell research. I could go on but I'm to worn out.

"In the end, the science will have to stand or fall on its own merits" I disagree with this too. Science is based on funding. If you don't have the funds to support your research it will fail regardless of it's merits.

I think we are extremely lucky that WPI being privately funded has made this major break thru. Where have are government funds been going?

I think it's great that the Public is involved. Although things are still being kept from the public it is getting harder and harder to do that when people speak out.

Hi wornout. Welcome. I think you may have misunderstood what I was saying there, because from what I can tell we're basically in agreement. I meant that those who cast doubt on the WPI's study because of the wording of the press release are mistaken, and that the study will stand or fall based on the science and not the personalities involved. People believe that the world is round because it is, in fact, round, not because the PR for the round lobby was better.
 
W

wornout

Guest
Thank You CJB and Fresh Eyes for your welcome. Sorry fresh eyes for the misunderstanding. I don't know who had the better PR for the round lobby. Those that believed the world was flat may have given those that believed the world was round the ships hoping they would sail off the edge of the world. Imagine their surprise when they came back. LOL
 
K

kim500

Guest
No reputable researcher, scientist or grad student makes those types of statements in the linked article. I don't give that person a second of my time because they obviously are so enraged that they are not thinking clearly. Also people who rant like that are not likely to become connected in the 'real world', who would hire a loose cannon like that?

Agreed. I wish erv luck in the job search. She may have her fans among science colleagues, doubtless she's the life of the party at the annual conference, but she's not doing herself any favours in future job search by mouthing off madly on her website. She may persuade a virology department to make her a job offer (esp. if she's got a powerful mentor behind her), but uni admin.and deans will not be amused and won't approve the offer. erv is the kind of job candidate with a big sign on her back: 'Lawsuit waiting to happen' - from future victims of erv's bullying (students, staff, colleagues) to who knows what fights she'd start herself. Not likely she'll get the job. Best of luck to her.

charityfundraiser - relax, erv is not the one to worry over.
 

anne_likes_red

Senior Member
Messages
1,103
Agreed. I wish erv luck in the job search. She may have her fans among science colleagues, doubtless she's the life of the party at the annual conference, but she's not doing herself any favours in future job search by mouthing off madly on her website. She may persuade a virology department to make her a job offer (esp. if she's got a powerful mentor behind her), but uni admin.and deans will not be amused and won't approve the offer.

If virology doesn't work out for her she's always got vile-ology. :Retro smile:
 
T

thefreeprisoner

Guest
Vile-ology - hahah! Love it.

Laughing at this great joke prompted me to say something I've been wanting to say for a while on this thread but not really knowing how to say it.
We have to be careful not to make the same mistake as ERV.

If we let anger get the better of us, people watching this debate will feel the same way about us as we do about her.

IMHO the best way to defeat the psych lobby is through ridicule and classic jokes like the pearly gates one in this thread (preferably of the non-personal sort though), not vivid descriptions of the torture or pain some of us would like to inflict on them.

I think if anybody needs to vent their rage, in full view of the public - politicians, scientists, relatives - is the wrong place to do it.
And certainly no death threats to the CDC, Wessely or White. That will kill our case faster than the baggage handling machine at Heathrow.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Actually, the Reno Gazette article itself mentions that a story about McClure's study will appear in the print version of "Science" on Friday. I noticed a tiny blurb in the upper right corner that says that the print edition of Science will feature a longer version of the lousy Sam Kean article we already saw in "Science Now". So I guess that's how McClure will appear in the print edition tomorrow...


Sharp eyed Gibbon. Then that is quite possibly the source of Marc A Fluk's information (on whose Co-Cure mailing the ME Association relies).

Suzy
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
If we let anger get the better of us, people watching this debate will feel the same way about us as we do about her.

That concerns me deeply, when I read these threads.

I also believe that the best way to beat the psych lobby is to be more reasonable than they are until the science proves them wrong. The science itself will be enough vindication for me.
 

flex

Senior Member
Messages
304
Location
London area
That concerns me deeply, when I read these threads.

I also believe that the best way to beat the psych lobby is to be more reasonable than they are until the science proves them wrong. The science itself will be enough vindication for me.

The only problem with that is they are not going to pack up shop when the science proves them wrong. They are already rolling out CBT to MS patients. They want to dual code in the next DSM ie/ MS + functional somatic disorder. They have a machine to make peacan pie, if peacan pie goes out of fashion they will just make apple pie!

They want to be in every area of medicine doing evaluations of peoples "mental health". They are in schools and work places with their manipulation diagnosing children with every "disorder" they can think of. 5 million American school children go to school eveyday on a pill for ADHD practically by order of the state. Dont give your kids Ritalin and risk the state taking them into care for "parental medical neglect".

They believe that period pain is hysteria (fact) and not being good at maths is "mathematics disorder". There is even a disorder in the DSM which is based on a patient being delusional if they disagree with a psychiatric evaluation.

The scientists can battle out the science of ME but I really think this is a much bigger issue than people realise.

As I stated in an earlier post, " the wheels of science must be allowed to motion without corruption applying the brakes!!

England used to be ruled by the church and the state, now it is the psychs and the state!!
 

flex

Senior Member
Messages
304
Location
London area
Vile-ology - hahah! Love it.

Laughing at this great joke prompted me to say something I've been wanting to say for a while on this thread but not really knowing how to say it.
If we let anger get the better of us, people watching this debate will feel the same way about us as we do about her.

IMHO the best way to defeat the psych lobby is through ridicule and classic jokes like the pearly gates one in this thread (preferably of the non-personal sort though), not vivid descriptions of the torture or pain some of us would like to inflict on them.

.

I was just wondering if you were refering to my frontal lobotomy comment. It was an ironic statement about the history of psychiatry when psychs, not brain surgeons would perform lobotomies on people with "maladaptive behaviours" by hammering chisels into their brains via their eye socket. There was a famous psyche who went around the country in the 50s and 60s in a camper van performing this procedure on a drive up basis on children as well as adullts.


Shocking. don't you think!!

Of course they dont need to do this so much nowadays with psychotropic drugs, CBT and GET being such worthy practices!!

Ps. glad you liked the Pearly Gates gag
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
The scientists can battle out the science of ME but I really think this is a much bigger issue than people realise.

I agree with you on this, flex. Looking into the whole DSM-V thing, I got a glimpse of an Orwellian future where everyone is on mandatory psych meds. It's bigger than just CFS.

That said, I also agree with those who think it wise to tone down the rhetoric on here. Unfortunately, the burden is on us to impress the public with our utter sanity and stability. It's unfair, but that's how it is.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
It's always troubled me when people here have talked about the WPI having Science magazine in their corner. They don't. I wouldn't be surprised if Science magazine were also unimpressed by the way the WPI has been responding to McClure.

If you want the WPI etc to speak in an aggressive manner, to accuse others of deliberatly skewing their results for fraudulent reasons, then you should not be surprised if a lot of scientists are turned off by such talk. I think that some people here spend too much time talking to those of a similar viewpoint to their own, and are now being surprised by the way those not a part of any CFS community are responding. Remember how angry people here got when Wessely said something like : "I don't think we'll find XMRV amongst most CFS patients." You'll note that he wasn't stupid enough to say "I think that these results are part of a fraudulent campaign to allow the metnally disturbed to go on pretending to be ill." That's why he's respected within the medical community, and a lot of CFS patients are seen as nutters. Maybe we having something to learn here?

Esther, this is a Message Board not a Scientific Journal.


Esther wrote: It certainly seems the ERV has got her nose knocked out of joint by some CFS commentators, and is now reacting badly.

It's not our fault that she's a foul-mouthed rude blogger.

Also, can I respectfully ask that you and others provide a warning about the use of foul language and extreme abuse towards our best researchers if you post her Blog here again?

I'm still deeply disturbed and upset by her most recent Blog that someone else here encouraged me to read all the way through. I knew better too and now I'm full of regret and frankly, anger.

I realize this was probably done in innocence so I just ask for future warnings on these kinds of postings.
 
Messages
13,774
Esther, this is a Message Board not a Scientific Journal.




It's not our fault she's a foul-mouthed rude blogger.


Sure, and people here are free to post whatever they want. That doesn't alter anything else I've said.

The comment of mine that you quoted does not blame anyone for ERV seeming to take a dislike to CFS patients, but if you look at her posts, this is what seems to have happened. (Although I think she'd have made use of wide range of colourful language even if this had not occured though.)

I think that her responses have been unreasonable. I think that a lot of people's reactions to CFS are unreasonable. I can see why some might want to attack them for this, and I can see why some would want to try to guide them to a greater understanding of CFS. The trouble with going on the attack is that it makes people less willing to give your arguments a fair hearing - but some people won't give you a fair hearing anyway. People are free to respond however they choose.