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The Fight is on...Imperial College XMRV Study

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Gert, thanks for the YouTube videos about Autism

Where's our Robert Kennedy? You can just substitute “CFS” for “Autism” and “Stratton” with “Reeves” and have him give the same speech and it will still make sense and be true.

I like the term “tobacco science”. Gotta remember that one and “biostitute”. Those are good. A "biostitute" is a scientist or spokesperson for science or in our case "science", who doesn't disclose the millions of dollars of transactions behind the scenes that are affecting "studies" and other propaganda put out with ulterior motives and interests.

I didn't realize that Autism is virtually unheard of in the Amish and in home schooled kids.

CF wrote: Yeah, actually if I can find my own post, I will put a warning. Sorry, I didn't see the really foul language until after I reposted the link.

Thank you CF. I really appreciate it.

Mithriel wrote: Well, the science WAS done, the physical abnormalities piled up but what happened? Findings were either ignored or dismissed with interesting but a very small study which needs replicated.

They stopped replication studies by making sure money was not made available and prevented studies from being published.

They have quietly used CFS to make a paradigm shift in medicine which will impact everyone.

Thank you so much for explaining this so concisely Mithriel. I know all this but I have trouble putting it into coherent thought let alone typing it out. I find the last statement I quoted by you the scariest of all.

Mark, I'm pondering your excellent ideas and Rachel, thank you for your A+ research, explanations and stunning conclusion in Post #1122 further up this page. Wow!

Xanadu, it says "1991" in the upper rt. hand part of the page.
 

flybro

Senior Member
Messages
706
Location
pluto
http://www.ncbi.nlm.nih.gov/sites/e...=Citation&defaultField=Title Word&term=Sharpe[author]%20AND%20Chronic%20fatigue%20syndrome.%20A%20practical%20guide%20to%20assessment%20and%20management.e

Gen Hosp Psychiatry. 1997 May;19(3):185-99.
Chronic fatigue syndrome. A practical guide to assessment and management.

Sharpe M, Chalder T, Palmer I, Wessely S.

The treatment of CFS requires that the patient is given a positive explanation of the cause of his symptoms, emphasizing the distinction among factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse). Interventions are then aimed to overcoming these illness-perpetuating factors. The role of antidepressants remains uncertain but may be tried on a pragmatic basis. Other medications should be avoided. The only treatment strategies of proven efficacy are cognitive behavioral ones. The most important starting point is to promote a consistent pattern of activity, rest, and sleep, followed by a gradual return to normal activity; ongoing review of any 'catastrophic' misinterpretation of symptoms and the problem solving of current life difficulties. We regard chronic fatigue syndrome as important not only because it represents potentially treatable disability and suffering but also because it provides an example for the positive management of medically unexplained illness in general.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Mark, Rachel

Please see my post #1123. Can you check and confirm that I am right in saying the new PlosOne paper doesn't reference Sharpe 1991? They cite Sharpe 1997 (ref 9), which is

Sharpe M, Chalder T, Palmer I, Wessely S (1997) Chronic fatigue syndrome. A practical guide to assessment and management. General Hospital Psychiatry 19: 18599. http://www.ncbi.nlm.nih.gov/sites/e...ractical guide to assessment and management.e

Cheers

No, you're right, thanks Xanadu. Gerwyn posted that as the reference for the questionnaire in the IC paper, but now that I come to check, it is the 1997 paper that is referenced in the IC paper, presumably misread as 1991.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
I want to address the way WPI has been approaching the PR side of this XMRV study/campaign.

Firstly I want to clarify that I have utmost respect for the whole WPI group. I am not a detractor in any way. They are fully investing themselves in this with what I believe are purely compasssionate and philanthropic goals. I am, however, not convinced that they are spending wisely the enormous political capital they have gained with this study.

This political capital belongs to all of us, anyone who has suffered directly or indirectly from CFS or related diseases. And we have an interest in how it is spent. In this case WPI and R&R Partners are making a gamble, and I can fully understand why, they are trying to raise awareness and understanding and to soothe the anxiety many of us are feeling. We all know that this is a good and just cause. But I think they are making a miscalculation with how much they invest.

Hypothetically, if their findings are ultimately verified, then they would have overspent. The implications of these findings would necessarily bring awareness and understanding on their own. An infectious retrovirus linked with cancer and chronic debilitating disease in more than 4% of the general population (presumably more than 4% as the testing methods are more refined). Thats big news no matter what PR efforts you put behind it. So it would have basically been a wasted investment.

On the other hand, if proven wrong, the results of making too much noise now would certainly come around to bite us in our rears. I think its safe to say most of the world is pretty skeptical and cynical about the idea of CFS. If we're proven "wrong" again, with all this fanfare and acrimony, we may have used up our last chance to cry wolf.

So basically we are making an investment to gain dividends we would have gained anyways (not a good investment in my mind) or to completely lose it.

I think we should be a little more quiet with public announcements etc. and put everything we have into opening up co-operation and communication within the scientific/medical community and government agencies. This investment would prove fruitful no matter how the science turns out on this particular finding.

Doing it this way, if we imagine the worst case scenario, there would be less of a backlash of negative opinions, in fact we could very possibly still end up ahead in that arena. And we would have built solid relationships to move the science forward.

Right now we do have a big stick, so let's speak quietly. At least for now.
 
D

DysautonomiaXMRV

Guest
What is very wrong, is that the British media leap on this Imperical College study and announce things like the BBC do like this:

''Research finds no proof that a virus is the cause of ME.''
Link

If only the BBC had waited for ' like for like ' studies (which are being completed in 2010).
And then their headlines could be accurate, instead of misleading.

A British right wing newspaper, the Daily Mail even ran a poll asking 'Do you think ME is a genuine illness'?

Thankfully, due to many complaints an apology was issued.

Quite incredible how eager the wolves are to bite the lame who spot the animal trap of XMRV biting into their ankles...
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
A few years ago, the Gibson report, drawn up by a group of MPs after a lengthy inquiry, called for the fact that SW and co were involved with the insurance companies and the DWP who stood to gain by making CFS a mental health issue to be investigated. This was not done.

Go to the MEAction site and you will find all the information you need. Please don't demand it to be all posted here, there are pages and pages of it.

Mithriel

Surely there's a simpler way, I can look at any paper and see the declaration of competing interests?
 
T

thefreeprisoner

Guest
But that depends on the authors being honest about their competing interests. Sadly not everybody is honest, especially if their professional reputation depends on them covering a few things up - it's human nature.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
I

Within this I find nothing in the Contents section that specifically deals with competing interests with insurance groups. Following a search of the document using the word 'insurance' I find a general comment indicating how CFS is defined by both the DWP and insurance companies. Under section 6.3 I then find a general comment suggesting advisors to the DWP, unnamed, have had consultancy roles with insurance companies. UNUM is mentioned in particular.

Cort's origional mail, which prompted my question, made a general reference which if substanciated would be off concern. The Gibson report however doesn't address this question, it does not investigate the advisors concerned to establish if they are indeed influential in CFS research. It does not investigate whether they are influential, i.e. the consultancy roles allow influence, in policy decisions with those insurance companies.

If, as a group, are indicating that there have been, or are ongoing, conflicts of interest with influential government figures then it should'nt be a throw away accusation, a given, it should be something that we can immediately and beyond any doubt provide supporting paper work for.

That's all I'm looking for.

I suggested in a previous post that this should be apparent for any given individual, from their papers of interest and influence, as competing interest at the time of publication requires such notice to be given.
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Surely there's a simpler way, I can look at any paper and see the declaration of competing interests?

Hi Holmsey.

I guess that approach will work fine so long as all researchers are always honest and thorough and self-critical in making that declaration. But people do seem to tend to differ in their assessment of what's relevant and what's not. Surely some level of public scrutiny and investigation is appropriate? As regards Members of Parliament, I wouldn't expect you would argue we should all just trust their expense claims, for example...

I think SW's past (and ongoing?) work with insurance companies is not in dispute, no? What I haven't seen yet is any indication of what money SW is said to have received for what alleged services provided. I guess it would take an investigation to find out those sort of details.

However I have read a lot of the info and I've still yet to see a definitive 'smoking gun' snippet that confirms SW receiving significant sums of money from insurance companies. One isn't looking for essays in these matters, just simple, clear and verifiable facts. I don't myself really doubt that SW has these competing interests, but I don't see much clarity on precisely what those interests are.

How's your conversation with SW been going btw? Last I heard, you asked him a number of questions (suggested by forum members) and he seemed to clam up at that point. Some of the issues seemed to be what he's likely to regard as 'old chestnuts' that he's fed up of refuting, but there were also some sharp and crucial questions on the threads you were pursuing with him, as I recall. I felt that was an important conversation you were having there, so I hope it isn't finished...
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Holmsey, since this is of interest to you and would be useful to have as a resource on the forum why don't you research it for us.

Mithriel
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Hi Holmsey.

I guess that approach will work fine so long as all researchers are always honest and thorough and self-critical in making that declaration. But people do seem to tend to differ in their assessment of what's relevant and what's not. Surely some level of public scrutiny and investigation is appropriate? As regards Members of Parliament, I wouldn't expect you would argue we should all just trust their expense claims, for example...

I think SW's past (and ongoing?) work with insurance companies is not in dispute, no? What I haven't seen yet is any indication of what money SW is said to have received for what alleged services provided. I guess it would take an investigation to find out those sort of details.

However I have read a lot of the info and I've still yet to see a definitive 'smoking gun' snippet that confirms SW receiving significant sums of money from insurance companies. One isn't looking for essays in these matters, just simple, clear and verifiable facts. I don't myself really doubt that SW has these competing interests, but I don't see much clarity on precisely what those interests are.

How's your conversation with SW been going btw? Last I heard, you asked him a number of questions (suggested by forum members) and he seemed to clam up at that point. Some of the issues seemed to be what he's likely to regard as 'old chestnuts' that he's fed up of refuting, but there were also some sharp and crucial questions on the threads you were pursuing with him, as I recall. I felt that was an important conversation you were having there, so I hope it isn't finished...

Hi Mark, hope you're keeping well.

I'll make this a kind of general reply. So first up, my correspondence with Simon Wessely, hi Garcia, nope he didn't, it just occured to me. Mark, I made a couple of posts which I beleive covered all of those things I was asked to discuss with him, only one of which really got answered, I also indicated that he's backed off and give 'my' reasons why I think that may be.

Since then I've had two mails, one was a copy of a mail to his secretary asking that she dig out the book in question regarding the 'disgusted' quote, and or a specific paper which includes that same quote. Don't know what his intentions are once he has those, hopefully I'm to be offered an opportunity to read it for myself, at source. The other was the response to PlosOne with regard to ours and other critisisms of the Imperial College study. I didn't mention or post that as it had already been posted by another user, but both posts were just copy in's.

Mark, Mithriel and theFreePrisoner,
But that depends on the authors being honest about their competing interests. Sadly not everybody is honest, especially if their professional reputation depends on them covering a few things up - it's human nature.

I appreciate that, but of course there is us and similar groups pouring over evey paper, even writing to publicists suggesting that authors have done exactly that. Then there are other proffessionals who are 'in the know', fall out with them and there are potential disciplinaries, and of course the publications, most of whom stand upon reputation alone. Quite a few safeguards in my opinion. I've also taken some particular claims on and posted back the view from the otherside, as given to me. In respect of all of these there's a clear opportunity for anyone who 'knows' rather than just 'states' differently to provide the killer shot from that smoking gun, to date it's not happened.

A question for you, is it your position then that I can't trust such authors but I can trust what I read in any posting on this site, or any other similar site with more surity of that being honest and without alterior motive?
I've come to the conclusion that there's a degree of missinformation, rolled out with such efficiency and with such regularity on ours and other sites that I'm at the point I beleive nothing until I see it at source, then I can decide for myself if I beleive it states or indicates that which is suggested about it.

Such dissinformation may be greeted with a hearty cheer on each occassion it appears but of course the down side is that as a group, we make enemies of people who are genuinely trying to help us, who may or may not have it wrong, who provided such work with genuine motive and not the array of alternate motives we dream up with such dissinformation as their soul support. People like those involved in the topic of this thread for instance, Imperial College.

We also do great harm to the general cause, which is as I understand it, to get to the bottom of CFS thus allowing for treatment and hopefully a cure. We harm this because we provide anyone who would sidestep that goal with an opportunity to dissrespect anything we say by quoting the things we have always got wrong, and the right things are just ignored. I wonder how often an MP has asked questions on our behalf to be fobbed off with a few easily disputed quotes and the general suggestion that we're overwrough with our illness.
 
Messages
63
if substanciated would be off concern

I
Cort's origional mail, which prompted my question, made a general reference which if substanciated would be off concern. The Gibson report however doesn't address this question, it does not investigate the advisors concerned to establish if they are indeed influential in CFS research. It does not investigate whether they are influential, i.e. the consultancy roles allow influence, in policy decisions with those insurance companies.


Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy

Peter D White, Michael C Sharpe, Trudie Chalder, Julia C DeCesare and Rebecca Walwyn for the PACE trial group
http://www.biomedcentral.com/1471-2377/7/6


Competing interests

PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company. MCS has done voluntary and paid consultancy work for government and for legal and insurance companies. TC has done consultancy work for insurance companies, is the author of Coping with Chronic Fatigue published by Sheldon Press and co-authors Overcoming Chronic Fatigue with Mary Burgess published by Constable and Robinson. RW and JD have no competing interests to declare.

General Information

This document describes the PACE trial, which was designed in collaboration with Action for M.E. and funded by the Medical Research Council (MRC), the Department of Health (DH), the Department for Work and Pensions (DWP) and the Scottish Chief Scientists' Office (CSO) and provides information about procedures for entering patients into it. Representatives of each of these funding bodies are members of the Trial Steering Committee (TSC) and therefore have contributed to the design of the study, the decision to submit the manuscript and have approved this manuscript.
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Holmsey, since this is of interest to you and would be useful to have as a resource on the forum why don't you research it for us.

Mithriel

Mithriel, my interest is in keeping things real, posting as fact that which is verifyable fact. I've used a few examples along the way one of which seems to be a cornerstone claim to the 'I hate the Psyc school' and I do intend seeing that through to conclusion.

With regard to an archive, I'm up for that, how about it Cort, are we legally allowed to reproduce papers of interest, or can we find some other way, an archive of links to documents rather than comment on documents perhaps?
 

Holmsey

Senior Member
Messages
286
Location
Scotland, UK
Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy

Peter D White, Michael C Sharpe, Trudie Chalder, Julia C DeCesare and Rebecca Walwyn for the PACE trial group
http://www.biomedcentral.com/1471-2377/7/6


Competing interests

PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company. MCS has done voluntary and paid consultancy work for government and for legal and insurance companies. TC has done consultancy work for insurance companies, is the author of Coping with Chronic Fatigue published by Sheldon Press and co-authors Overcoming Chronic Fatigue with Mary Burgess published by Constable and Robinson. RW and JD have no competing interests to declare.

General Information

This document describes the PACE trial, which was designed in collaboration with Action for M.E. and funded by the Medical Research Council (MRC), the Department of Health (DH), the Department for Work and Pensions (DWP) and the Scottish Chief Scientists' Office (CSO) and provides information about procedures for entering patients into it. Representatives of each of these funding bodies are members of the Trial Steering Committee (TSC) and therefore have contributed to the design of the study, the decision to submit the manuscript and have approved this manuscript.

xanadu,remember that my original question was simply 'what interests' I wasn't suggesting Cort was lying I just wanted to be sure there were indeed 'competing interests'. But thanks, a clear example of authors including in the paper of interest their competing concerns. Clearly in this instance the opportunity is there to take those competing interests to task via MP's overseeing groups etc. if the general feeling is that those other interests have or potentially have influenced the outcome.

I've mentioned it before, I work for an Insurance company and have through my health care provision seen four seperate specialists and been offered supportive treatments, none of which were Psyc specialists. I mention this because proving someone has another interest and proving it is detremental to their other works are two different things.

By the way, even though I work in IT and not an area where I could have influence, I still have a mandatory requirement to repeat company ethics training on an annual basis and from the contents I can assure you that there is no way on this earth that any 'specialist' is being offered payment purely on the basis that their advice of research saves the company money. As a company we hang people out to dry if they fall fowl of the law rather than reward them.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
I've mentioned it before, I work for an Insurance company and have through my health care provision seen four seperate specialists and been offered supportive treatments, none of which were Psyc specialists.

Holmsey, what specialists did you see and what treatment were you offered? Also have you been offered any treatment on the NHS? If not why not?