The Independent newspaper - Study that 'solves' chronic fatigue blocked

[SOC]

Is a pretty good newspaper. What if they are right and the Alter study is seriously flawed? They are more than hinting here that the embargoed paper will never see publication, and that higher ups in the DHHS/ NIH will spike the paper. I guess we are never going to know much about the FDA research. Looks now like any CFS/XMRV link is a complete long shot, and government funding will dry up for any further studies of CFS and XMRV.

At least those prostate cancer research folks will probably get some funding to research XMRV, and maybe come up with a good diagnostic test for it. Even so, XMRV is now a human retrovirus without a disease, and it will probably stay that way for some time.

If they are right and the Alter paper is seriously flawed (which I doubt, given the calibre of the scientists involved), then we will all take a deep breath and keep on keeping on. We have few other choices.

For me, evidence is against the Alter paper being seriously flawed, but we have to wait until we can see the paper.

Once there's a good diagnostic test for XMRV, by whatever path, things will get better. There's enough people willing to believe we are truly ill, that we will be tested. Things will happen.

 

[zerothehero]

Hi Guys,

I just registered and this is my first post on here. I just emailed this message to the news editor of the Independent:

Dear Editor,

"Study that 'solves' chronic fatigue syndrome blocked"

Thank you for breaking this story in the UK in the Science section of todays 'Independent' online. However, one line in the article has angered many ME sufferers, and I fear your correspondent Steve Connor may have been misled by his anonymous sources:

"...scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV".

There is great anger and intense controversy surrounding the suppression of the allegedly positive FDA/NIH study. I would suggest that Mr Connor check out the following article from Hilary Johnson, the author of "Osler's Web"

http://oslersweb.com/blog.htm?post=718351

Sincerely,

 

[biophile]

The US government can suppress their own findings but not that of other groups

What if they are right and the Alter study is seriously flawed? They are more than hinting here that the embargoed paper will never see publication, and that higher ups in the DHHS/ NIH will spike the paper. I guess we are never going to know much about the FDA research. Looks now like any CFS/XMRV link is a complete long shot, and government funding will dry up for any further studies of CFS and XMRV.

A concerning possibility, but it is still just remains a single quote from an anonymous source. Both sides of the argument will continue to be calling the other's research "seriously flawed" until the scientific process (hopefully not the political process) deems a winner.

Are there not other positive studies in the works too or at least fair attempts? The current research efforts into XMRV/CFS are too decentralised for the DHHS(CDC) to fully suppress the findings of other research groups. In this case they are controlling the release of their own findings, but if they attempted to suppress the positive findings of other groups outside their umbrella, that would set off much louder alarm bells for the mainstream scientific community.

At least those prostate cancer research folks will probably get some funding to research XMRV, and maybe come up with a good diagnostic test for it. Even so, XMRV is now a human retrovirus without a disease, and it will probably stay that way for some time. The British Psych lobby is probably doing nip-ups right now . . .

As conflicted findings are also occurring in prostate cancer research, a good diagnostic test for XMRV in prostate cancer, assuming a blood test, should reignite the issue for CFS if it went cold. If XMRV turns out to play a major role in CFS, the CDC and other groups that proudly cannot find XMRV in CFS (while promoting "childhood abuse" and "abnormal illness beliefs" as the most significant factors) have just stepped into a huge pile of steaming shit and the ME/CFS/CFIDS communities are not going to let them forget how much they stink.

 

[kwietsol]

Welcome to the Forums, Zerothehero. And thanks for your email to the Independent.

 

[Daffodil]

does anyone have any word on the GSK study?

 

[V99]

Agreed.

Why put a hold on a flawed paper? Let the world see. Why would a paper by Alter be so flawed? Let the world see. Why is it ok for the CDC to publish their seriously flawed paper? And why is it ok for them to not attempt to replicate the 'Science' study? Who would have seen the paper if it has not been peer reviewed? Therefore who can the quote be from? Or is it anyone from the CDC or the three negative studies, then it is a conflict of interest. Why do more test if it is obvious that it is seriously flawed? Why the hold?

 

[Anika]

Blood "donations" for good XMRV studies

We need to be sure that there are some good samples for researchers to study. Researchers need samples from a good cohort, and properly drawn and stored blood samples. Did I read somewhere that fresher may be better?

I think a lot of us have been reaching into our pockets to make whatever donations we can to support research. But, actually signing up to participate in studies is also important. My thanks to those who have participated in CFS research.

I had been meaning to sign up for the Biobank sometime this summer, but hadn't got around to it. However, with the story that came out about the CDC and NIH/FDA papers, last week, I made signing up a priority. I hope that most of the patients of the four doctors (Lapp, Klimas, for sure, and is it Bateman and then another Dr I wasn't familiar with?) have signed up for the active study, which sounds like it may cover or include XMRV (though I didn't see that mentioned at the CAA Biobank web page).

We need to make sure that good researchers have the right blood, and run the right tests.

 

[Levi]

Well,

It would be interesting to do a study that turns the tables on all the various Zero/zero studies that have been published so far invisibly by the psych lobby.

"For this study, patients were recruited from internet forums that focus on CFS. All had been privately tested for XMRV and found positive by either PCR or antibody testing methods prior to being surveyed by email and invited to our clinic where M.D.'s confirmed the diagnosis using the Phoenix Rising Self-Diagnostic criteria for CFS, which operationalizes the Canadian/Fukuda/Oxford CFS definitions and was deemed equivalent by a site "sticky poll" vote majority. Fresh blood samples were obtained, divided, and sent to six different labs using FDA certified testing methods (employing the NIH embargoed study protocols). All XMRV tests were 100% positive from all six labs. Since XMRV positive patients were used as controls, they tested 100% positive too."

Lets think of a catchy title for the study like "Lack of infection with XMRV NOT FOUND in Chronic Fatigue Syndrome and Not-so-Healthy Controls"

We need to make sure that good researchers have the right blood, and run the right tests.

 

[Forbin]

"...scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV".

I would bet that the "serious flaw" that these "scientists" are complaining about has to do with their definition of CFS.

Note that their complaint is that Alter's paper cannot support "a link between chronic fatigue syndrome and XMRV." Most likely, they're not complaining about his findings of XMRV in patients; rather, they're complaining that people with the neuro-immune symptoms of XRMV infection cannot possibly have their definition of CFS.

This argument over the definition of CFS is going to be the last bastion of the scoundrel when XMRV is found in patient cohorts. Mark me, the CDC and their familiars are going to eventually insist that being positive for XMRV excludes you from having true CFS.

They will then be "Shocked! Shocked!" to find that a "previously unrecognized" illness caused by XMRV is on the loose. They'll probably call it C.N.C.F.S. - - "Certainly Not Chronic Fatigue Syndrome."

Remember, in August 1992, Reeves and the CDC insisted in the Annals of Internal Medicine that the patients in the Lake Tahoe outbreak of 1984 did not have CFS or "any other clinical entity." Thus, Reeves et al. have done nothing wrong by missing XMRV all these years because they've been busy studying "true" CFS.

 

[pollycbr125]

I honestly cannot see how a paper that was practically in print could be so seriously flawed ? Yeah right it got through all the peer review and other hoops it had to jump through with such serious flaws didnt it . I think not , it wouldnt have even got past the first post.

They seem to forget this paper was leaked and many of us and many top scientisits have already seen the original slides . Do they honest to god seriously think they can bury this . Yes many of us are very sick and the powers that be are probably hoping that we are all gonna crawl back to our sick beds with a flea in our ears , but I really do not think they have realised just how powerful we can be even from our sick beds . The wonder of modern technology the laptop being one , small , light and easily transportable . My laptop is my best friend if you like it goes everywhere with me ( in the house that is as I dont get out much) I will continue to spread the word on XMRV and attempt to correct the disinformation that is being spouted even from my sick bed .

I for one am not gonna give up without a fight , well im not gonna give up end of , I want my life back before im too old to appreciate whats left of it . Keep up the good work folks , we may be on our uppers but we arent destitute just yet . And we are most certainly a force to be reckoned with

 

[VillageLife]

[WIKI][/WIKI]

I for one am not gonna give up without a fight , well im not gonna give up end of , I want my life back before im too old to appreciate whats left of it . Keep up the good work folks , we may be on our uppers but we arent destitute just yet . And we are most certainly a force to be reckoned with

hugs Polly! Your right we can't give up! And there are 17 million of us, not forgetting our friends and family who will also support us. (that's a lot of people!)

 

[VillageLife]

My boyfriends just been out and got the independent newspaper, if you manage to buy it, the article is on (page 12)

 

[natasa778]

This argument over the definition of CFS is going to be the last bastion of the scoundrel when XMRV is found in patient cohorts. Mark me, the CDC and their familiars are going to eventually insist that being positive for XMRV excludes you from having true CFS.

They will then be "Shocked! Shocked!" to find that a "previously unrecognized" illness caused by XMRV is on the loose. They'll probably call it C.N.C.F.S. - - "Certainly Not Chronic Fatigue Syndrome."

Forbin you are probably right!!!

That is soooooooo ridiculous that it MUST be something that CDC embraces. Remember Gebels' words on good propaganda (or was that someone else), said that the bigger the lie the easier it is to sell to the masses.

 

[pollycbr125]

My boyfriends just been out and got the independent newspaper, if you manage to buy it, the article is on (page 12)

So it is actually in print then and not just on the web. I begrudge increasing their coffers when they write crap like this

 

[pollycbr125]

I urge everyone to go make a comment on the Independent article . It doesnt have to be long , short and sweet and straight to the point will do . We need to get the message out that we will not allow the xmrv research to be buried

 

[bullybeef]

If anyone feels up to emailing the independent, here are a few emails addresses.

S.Connor@independent.co.uk
newseditor@independent.co.uk
m.king@independent.co.uk

 

[Min]

To send a letter for publication, email:

letters@independent.co.uk

including your address and telephone no (these will not be published, only your town)


I'm surprised at the tone of this article, the Independent are usually very good about M.E.; it does have a hint of weasel.

 

[SOC]

I would bet that the "serious flaw" that these "scientists" are complaining about has to do with their definition of CFS.

Note that their complaint is that Alter's paper cannot support "a link between chronic fatigue syndrome and XMRV." Most likely, they're not complaining about his findings of XMRV in patients; rather, they're complaining that people with the neuro-immune symptoms of XRMV infection cannot possibly have their definition of CFS.

This argument over the definition of CFS is going to be the last bastion of the scoundrel when XMRV is found in patient cohorts. Mark me, the CDC and their familiars are going to eventually insist that being positive for XMRV excludes you from having true CFS.

They will then be "Shocked! Shocked!" to find that a "previously unrecognized" illness caused by XMRV is on the loose. They'll probably call it C.N.C.F.S. - - "Certainly Not Chronic Fatigue Syndrome."

Remember, in August 1992, Reeves and the CDC insisted in the Annals of Internal Medicine that the patients in the Lake Tahoe outbreak of 1984 did not have CFS or "any other clinical entity." Thus, Reeves et al. have done nothing wrong by missing XMRV all these years because they've been busy studying "true" CFS.

Yup, I'm beginning to think the same thing. Then it might be possible that Alter et al are expected to rewrite the paper to describe us as a patients with a certain set of symptoms, rather than CFS patients. Alter's paper would be published without specifically stating the connection with CFS and PNAS, DHHS, CDC will all be happy.

Maybe we'll finally get to stop calling ourselves ME/CFS patients. [wishful thinking]

 

[Rivotril]

Yup, I'm beginning to think the same thing. Then it might be possible that Alter et al are expected to rewrite the paper to describe us as a patients with a certain set of symptoms, rather than CFS patients. Alter's paper would be published without specifically stating the connection with CFS and PNAS, DHHS, CDC will all be happy.

Maybe we'll finally get to stop calling ourselves ME/CFS patients. [wishful thinking]

that's their escape they have build in for years indeed:

they never accepted the canadian criteria, and research which showed low NK cell problems, RnaseL problems and opportunistic infections. They just put everybody in huge group (includiing depressive people etc) which was labeled fatigued.. so their selection also included CCC patients ,but many other people as well.

If they were really honest and real scientist who want to solve ilnesse, why didnt they do any research on these neurological ill people for the last 30 years??? The 5000 studies who show psychical problems in ME/CFS are out there for years, and they didnt do the smallest thing to undertake further actions: they just "fit" them in their own garbage ME/CFS CDC criteria definition
and when things go wrong for them, then they will indeed just say: okay these are not ME/patients but these are people ill suffering from a virus, so we have done our job...

but if they work this way: how can they all (CDC/weasly, vander meer) just say that they tried to replicate the Science study, because they themselves say that they are studying a totally different illness!!!

science study is about patients who have ilness A, and you are going to replicate it with a cohort with people who have illness B???? and call that science?????

they have the problem that, even in the cdc people, there will be found XMRV
dont forget that WPI also found about 30% XMRV in the samples of Kuppeveld, which were selected by the awful oxford criteria...