Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"

eric_s

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But your words certainly gave the impression you think only some people with 'insider status' can 'do science'. I haven't got time to explain Mary Anning in detail to you, but she was a major discoverer of paeleantological evidence who was an 'amateur', and did not get her due recognition because of that. Indeed, you appear to have very narrow beliefs on what the ME/CFS community is 'permitted' to do ('our jobs' - raise money?). By your logic, some of us have not right to be critiquing bad science (you misrepresent that as 'getting angry') but should sit on our hands, or our hair, like Rapunzel, waiting for the prince (Mr 'good science') to rescue us, except for raising funds. By your logic, no-one should have done work showing the flaws of psychogenic explanations, because psychs are 'scientists' (that's an unsafe assumption, but they do claim to be and are accepted by others as such).


I'm sorry, but this shows an (to my mind, by now, inexcusable) ignorance of the rank poverty affecting many ME/CFS sufferers, and possibly an ignorance of the issue of poverty per se. That's even before we discuss that even your unrealistic scenario is still unlikely to be enough of a 'miracle' to get that panacea of 'research' completed. There are people out there living in 'Dickensian conditions' (a key advocate for ME/CFS sufferers' quote actually, not my own) who can barely afford heating or food (one of these has to suffer usually) because of the affects of psychogenic dismissal on benefits.


I'm sorry, but making a literary reference is hardly uncivil, which is what you are implying, and it's unreasonable to expect somebody to 'stop talking this way'.




Which may be why you resorted to accusing people of being paranoid and aggressive. Lack of ability, for whatever reason, to be able to follow something, does not mitigate ad hominem attack on members of this community, which is what you did.

IAd hominem fallacies (whether deliberately rhetorical or errors) do not have to attack specific people. Misrepresenting someone's argument as 'paranoid and aggressive' (or that of more people), rather than explain what's happening, was designed to make the reader believe certain people are 'paranoid and aggressive' rather than merely incorrect in their argument. People, for all I know, may be acting reasonably in their objections, and you won't present the evidence needed to present a case that this is otherwise.



But you not looking for a discussion is futile. You put your opinion in a forum, you might get a discussion!

Regarding the 'Dusty Miller blow-up'. I'm still trying to find out the exact details. What has interested me in the interim is that allegedly, Dusty Miller accused a patient of probably believing in Cold Fusion, as a guilt by association ad hominem!

IF this is true (the smoke and mirrors problem that dogs all internet interaction seems to be particularly bad, with people claiming other people are Miller, Mikovits etc. so it might not be) then Miller's fallacy here is outrageous, and hardly likely to reassure people.

But - I would be interested in other people's careful analysis of what's been going on (I'm not interested in any "objectors are paranoid and aggressive memes". A summary of the argument would do!) I'd actually be grateful for a reasonable summary, it doesn't have to be completely neutral, just reasonable! If anyone can do that - thank you in advance.
I will once again try to explain what i meant...
I did not say who is "allowed" to do science and who is not. This is not my way of thinking. What i said is that you need knowledge, an amateur might have this too. My argument is that the best way of critique is to produce evidence that proves the other side wrong. Who is most likely to produce that evidence? The best qualified scientists.
Yes, psychologists are scientists and they may be proven wrong by science. It's not like all the scientists have the same point of view and also often the view of an individual changes over time.

I am not ignorant of the life of people with ME/CFS (i live it myself) and what i said is not unrealistic. I think we should never have such a defeatist attitude. We have it in our own hands and once again, i believe it's actually not hard to do. Is it unrealistic to save 8 or 9 US Dollars per month in the UK? I am convinced it's not.

Making a literary reference is not uncivil at all, that's not what i was referring to.

I did not "resort" to calling some people paranoid and their behaviour aggressive. It was exactly what i wanted to criticize because in my opinion this is how they behaved and i don't think this is good or helpful. I am very well able to follow something. I read the thread in question, about 20 pages of it. But my time and energy is limited and i do have other things to do.

You expect people to provide you with a summary and analysis. Why don't you go over there and read it yourself?
Do you have ME/CFS? I think in another one of your posts i read you don't, but i'm not sure anymore. If you don't have it, you should not want me to do time and energy consuming work for you, please.
 
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Making a literary reference is not uncivil at all, that's not what i was referring to.
Well then you need to make yourself clearer here.

You expect people to provide you with a summary and analysis. Why don't you go over there and read it yourself?
Do you have ME/CFS? I think in another one of your posts i read you don't, but i'm not sure anymore. If you don't have it, you should not want me to do time and energy consuming work for you, please.
I'm not ''wanting' or 'expecting' anyone to do work for me. I just hoped someone could enlighten me. As it is, I'm getting up to speed myself.

As regards my own health status. Why are you mentioning it? It seems irrelevant. As it is often used inappropriately (in ad hominem) against me in arguments on this forums, I have the right to ask.

I am not ignorant of the life of people with ME/CFS (i live it myself) and what i said is not unrealistic. I think we should never have such a defeatist attitude. We have it in our own hands and once again, i believe it's actually not hard to do. Is it unrealistic to save 8 or 9 US Dollars per month in the UK? I am convinced it's not.
i am sad that your conviction of the money of other people is so solid. Your comments about 8-9 dollars a month shows you do not understand how poor many people are. I really think you need to learn more about poverty as a subject. I will try and put links to information on this for you when I have the time. But you must surely be aware that your relative financial security might not be that of others?

I did not "resort" to calling some people paranoid and their behaviour aggressive. It was exactly what i wanted to criticize because in my opinion this is how they behaved and i don't think this is good or helpful.
your opinion of 'paranoid and aggressive' is merely that. Subjective, unstable descriptions, but designed to persuade people to believe that, rather than the specific objections people were making (of which many, so far, look pretty reasonable). That is an example of ad hominem.

My argument is that the best way of critique is to produce evidence that proves the other side wrong. Who is most likely to produce that evidence? The best qualified scientists.
While this comment sounds reasonable, the problems with it are firstly, how do you define 'best qualified'? I mean - that's an unstable, unquantifiable and subjective generalisation, and a potential irrational appeal to authority. Secondly, we have already seen various examples in the world of ME/CFS alone where highly 'qualified' people have produced examples of poor science (that is, flawed by the standards of the very scientific principle it claims to follow). Thirdly evidence alone cannot be enough. There also needs to be specific rational analysis of flawed and irrational reasoning, and explanation as to why evidence is flawed. Otherwise the reliance on empirical evidence alone could support claims that astrology rules our lives, for example, and rational objections would be futile, because 'the empirical evidence has spoken'!
 

biophile

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Science writers got played and exposed their bias and ignorance

It looks like many science writers derisively swallowed the "XMRV is probably contamination" party line without really understanding what was going on. This whole incident exemplifies how casting doubt is not the same as critical analysis. And it certainly wasn't balanced, it reeks of opportunism at the sight of easy pickings. They got played by the original press release, which clearly went beyond the evidence. They also got embarrassingly owned by the astute comments of mere lay patients.

Where was all the feverish circle-jerking amongst skeptical science writers when the CDC recently (2010) published a study on personality and another (2010) on psychiatric comorbidity, both which used a flawed criteria known (as shown by Jason et al) for selecting CFS cohorts "contaminated" with primary major depressive disorder (eg 38% in one study)? In an earlier systematic review of personality and CFS (van Galeen 2007), depression symptoms in a minority of patients is mentioned as a possible source for elevated personality features in CFS cohorts. Where were the headlines "CDC studies linking CFS to personality features and psychiatric disorders may be fatally flawed"? Instead we got headlines like "Is CFS a personality disorder?" even though the clear majority of patients didn't even have any such disorder.

On another thread we have been discussing how easy it is for psychometric scales and the presence of physical symptoms to create false positives for psychiatric diagnoses in CFS. All this has been known for decades, Jason and others have also written extensively about it. Where were the headlines "Studies linking CFS to psychiatric disorders may be fatally flawed"? The "CFS is somatised depression" argument got debunked a long time ago, yet don't be surprised if you still come across this or equivalent in 2011, even from "Science Based Medicine" writers who believe the prevailing view of CFS is "an emotionally-based, mood disorder (somatization)."

Some people have a massive blind spot whenever it comes to this sort of thing. Biological research gets treated with unrelenting (pseudo)skepticism but the psychological speculations float through without much thought at all. Patients are often accused of having the opposite bias, but we aren't the ones writing supposedly unbiased professional articles for the news.
 

Wayne

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Hi Alfred (ahem, I mean biophile) :Retro smile:

Thanks for your great post. I just checked the comments on the Forbes article and it sure seems Mr. Salzburg is "getting his clock cleaned". Many comments there are top-notch, and his replies do not come across as even remotely credible. In fact, they come across to me as being "emotionally immature". Anyway, last count is over 4,000 views, ZERO recommendations. I hope Forbes takes notice.

Wayne
 

eric_s

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Well then you need to make yourself clearer here.

I'm not ''wanting' or 'expecting' anyone to do work for me. I just hoped someone could enlighten me. As it is, I'm getting up to speed myself.

As regards my own health status. Why are you mentioning it? It seems irrelevant. As it is often used inappropriately (in ad hominem) against me in arguments on this forums, I have the right to ask.

i am sad that your conviction of the money of other people is so solid. Your comments about 8-9 dollars a month shows you do not understand how poor many people are. I really think you need to learn more about poverty as a subject. I will try and put links to information on this for you when I have the time. But you must surely be aware that your relative financial security might not be that of others?

your opinion of 'paranoid and aggressive' is merely that. Subjective, unstable descriptions, but designed to persuade people to believe that, rather than the specific objections people were making (of which many, so far, look pretty reasonable). That is an example of ad hominem.

While this comment sounds reasonable, the problems with it are firstly, how do you define 'best qualified'? I mean - that's an unstable, unquantifiable and subjective generalisation, and a potential irrational appeal to authority. Secondly, we have already seen various examples in the world of ME/CFS alone where highly 'qualified' people have produced examples of poor science (that is, flawed by the standards of the very scientific principle it claims to follow). Thirdly evidence alone cannot be enough. There also needs to be specific rational analysis of flawed and irrational reasoning, and explanation as to why evidence is flawed. Otherwise the reliance on empirical evidence alone could support claims that astrology rules our lives, for example, and rational objections would be futile, because 'the empirical evidence has spoken'!
I don't want to take this thread off topic and i am honestly not very much interested in that kind of argument. Plus i have a big enough workload at the moment (not paid work).

You were asking others to provide a summary. This is a board for ME/CFS. Of course everybody is welcome and it's great to have as many healthy people as possible on the forum and interested and active in ME/CFS. But most of the posters here have it themselves. So i feel that one should not ask people here to do work someone can do probably better by himself. I went over there and read the thread for some hours. That's why i am able to make qualified comments on the subject. Anyone who wants to be able to understand what it is about should do the same.

I did not criticize the questions people have regarding the methods of the Miller study. (An interesting point is that the final details of the method have not even been disclosed yet ;), but hey, it's never too early to go crazy.) Those questions seem to make sense to me, too. But i doubt many people over there can make an informed judgement about that kind of methodology, just as i can't, neither, so i would find it smarter for them to, for example, try to ask some people outside that forum, who actually do that kind of work.
I did criticize the paranoid and aggressive behaviour and yes, that's what it is to me, and i think it is an objective judgement. I don't want people to have that impression of ME/CFS patients. Those forums are luckily based in free coutries and i'm all for free speech, i don't want to take away those people's possibility to express themselves, but i will say what i think about it. Nothing unstable in my opinion there.
The people there had a chance to ask those questions in a civil, respectful and reasonable way. They might have established a contact with Dr. Miller out of which something good could have come. And i don't think i heard "Thank you, Ecoclimber" over there very often. This guy is at least partly providing funding for the study and seems to have initiated it.

Many things in the world can't be put in numbers. This does not mean one does not have to try to find the optimum. Yes, also highly qualified people can make mistakes. But does that mean it's smarter to pick less qualified people? I would say it's not. We need the best we can get and as in so many situations, of course not everybody will agree on who is best.
Of course one needs to do analysis of flawed work, but how will you be able to make a better case? With more or less evidence? I'm sure more evidence will help tremendously. I don't see how any amount of talk will convince the "contamination advocates". But the results of a well enough done blinded study with samples of cases and controls treated in the same way, as will happen in phase III of the XMRV Working Group's effort or the finding of XMRV integrated into the DNA of a ME/CFS patient might help a lot.
We suffer from a lack of evidence about the cause and mechanism of ME/CFS. There is evidence but not enough to explain the illness. If that evidence would exist, we would most probably be in the same position like people with other illnesses, who get way more funding, appropriate care, insurance payments, more respect etc.
I don't see how empirical evidence could prove that astrology rules our lives. Maybe in the UK, ok... Joke aside, as far as i can see, only a specifically handpicked event where the actual happenings conicide with an astrologic prediction could be used to make that case, and this is definitely not the sort of evidence i am thinking about. I don't think this would suffice any scientific requirements and i want solid scientific evidence.

I hope we can stop this pretty soon. I am starting to take some things said here personally, but i don't want to react in an angry way. Just let me tell you this. Your profile says "university lecturer". That's nice and i congratulate you. I do not have the same income like you. I am not able to seriously work. This is not so funny. I live with a budget that is around the minimum every person in my country will get from social security. I live well, but i am not rich. And i can save 100 USD or EUR per year. The UK has a social security system as well, as has every Western European country, as far as i know. It might not be exactly the same in every country, but i still strongly believe that 100 Dollars is possible to save in the UK, too, for most people. But it might take some planning, as in every country.
 

SOC

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Thank you, eric_s, for maintaining civility in the face of provocation.

A valuable piece of wisdom from US Pres. Barak Obama this evening:

"At a time when our discourse has become so sharply polarized — at a time when we are far too eager to lay the blame for all that ails the world at the feet of those who think differently than we do — it's important for us to pause for a moment and make sure that we are talking with each other in a way that heals, not a way that wounds,"

I encourage the membership of these boards to continue to ensure we are "talking with each other in a way that heals, not a way that wounds".
 

Mark

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That sounded like a real hack job on Forbes..having a business reporter tell Science they shouldn't have published a study was an eye-opener for sure.....Good lord!
This terrible piece just showed how the original press release (the contamination papers) can be amplified weeks later by ignorant and prejudiced bloggers and hacks, and turned into something even worse, adding the most basic and misleading errors of fact, and spreading the original disinformation more widely.

The error that the Hue phylogenetic 'common ancestor' was a mouse and not a human cell line was particularly awful - a key detail.

Responding to papers like this, IMO, should be firstly based on scanning through for these key errors of fact. In the case of this piece, every line can be picked apart, which is time-consuming, but the efficient way perhaps is to hone in on the most critical, misleading error of fact and point that out with reference.

We do have a decent response network to this sort of thing, I think, distributed over the web, but it's always capable of getting better...and there is lots of it to deal with...



Objections - raised in order to have a dialogue and come to an understanding have happened in the ME/CFS Forums regarding Miller's study.
I read the whole thread, I tell you. The whole thread. I found myself howling uncontrollably at regular intervals.

So have 'attacks' that use innuendo, twisting words out of context, people trying to 'win' an argument no matter why, people putting being 'right' above finding out what is true....have also happened. Both have gone on.
I respect you for portraying it in such a generous manner...it's been a bit worse too... :)

It's a mix...Its a complicated situation.... the main voice there raised an interesting question about IAP....and it was a legitimate question. Miller's attempt to answer it was not responded to .......that same person also brought up the question of the VP62 clone - another legitimate question.... that same person later said Miller had no experience with MLV's (he has 20 years of experience).........it was a real mishmash, in my opinion, of reasonable questions and unreasonable statements.
Quite.

You have to say there were some important and legitimate issues brought up...but the discussion went nowhere because the offensive and aggressive tone drowned out the researchers' brave and commendable attempt at dialogue.

It seemed so sad: it seems as if our greatest energy and passion and anger is reserved for those who are most actively and positively trying to help us, for some weird reason.

I'd like to see Dusty posting here too, to get a less heated conversation with the ME/CFS community, it's great that he's approached this situation the way he has - I'm loving some of the openness I'm seeing recently and it should be encouraged, not stamped on: we should be grabbing those opportunities with both hands and building bridges; constructive networking with supporters like Dr Miller is crucial IMO.

Miller's full study will, I believe, be out soon and everybody will get a chance to examine it.
It seemed that the full study design hasn't been agreed yet, that's what they were arguing about, and they want to clarify that there aren't any errors or loopholes in that study because it could be a death-knelll for XMRV research if that fails...I think that's a bit overstated, I'm not sure what the worry is over Ila Singh, or Maureen Hanson, or Lo and Alter, or the Bagni group, or any of the other people who are continuing to progress...or indeed the Lipkin and BWG work which hasn't all fallen apart quite yet...but I don't think Dr Miller's is the make or break study, anyway. Still, it's certainly important that the design is right, and it'd be a shame if an opportunity has been missed to review or discuss that design constructively.
 
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You were asking others to provide a summary. This is a board for ME/CFS. Of course everybody is welcome and it's great to have as many healthy people as possible on the forum and interested and active in ME/CFS. But most of the posters here have it themselves. So i feel that one should not ask people here to do work someone can do probably better by himself. I went over there and read the thread for some hours. That's why i am able to make qualified comments on the subject. Anyone who wants to be able to understand what it is about should do the same.
Firstly, if you consider yourself 'able to make qualified comments on the subject' you should have made more qualified comments (!) instead of resorting to subjective (not objective, no matter how much you believe they are) descriptions and failing to provide a clear resume of the problem, or even examples of problematic responses as evidence for your assertion. Secondly, it is not inappropriate to ask someone to give a heads-up on what might be going on, even in an ME/CFS forum!

I did not criticize the questions people have regarding the methods of the Miller study. (An interesting point is that the final details of the method have not even been disclosed yet ;), but hey, it's never too early to go crazy.) Those questions seem to make sense to me, too. But i doubt many people over there can make an informed judgement about that kind of methodology, just as i can't, neither, so i would find it smarter for them to, for example, try to ask some people outside that forum, who actually do that kind of work.
Your 'doubt' about other people's abilities might be mistaken. Has that not occurred to you? How do you know they haven't asked outside the forum?

The people there had a chance to ask those questions in a civil, respectful and reasonable way. They might have established a contact with Dr. Miller out of which something good could have come. And i don't think i heard "Thank you, Ecoclimber" over there very often. This guy is at least partly providing funding for the study and seems to have initiated it.
So you have no problem with the attacks on people's motives and characters perpetrated by anonymous people claiming to be Miller himself, an assistant, and a funder of Miller's work? Do you not see how people were defending themselves against those attacks? (Yes, I'm up to date now!)


Many things in the world can't be put in numbers. This does not mean one does not have to try to find the optimum. Yes, also highly qualified people can make mistakes. But does that mean it's smarter to pick less qualified people? I would say it's not. We need the best we can get and as in so many situations, of course not everybody will agree on who is best.
Of course one needs to do analysis of flawed work, but how will you be able to make a better case? With more or less evidence? I'm sure more evidence will help tremendously. I don't see how any amount of talk will convince the "contamination advocates". But the results of a well enough done blinded study with samples of cases and controls treated in the same way, as will happen in phase III of the XMRV Working Group's effort or the finding of XMRV integrated into the DNA of a ME/CFS patient might help a lot.
You do understand that you are contradicting your previous claims now? You appear to be acknowledging that someone else other than scientists can provide good analysis and important work? Of course someone should use evidence - I've not said they shouldn't! But empirical evidence is clearly not enough, which was your original claim.


I don't see how empirical evidence could prove that astrology rules our lives. Maybe in the UK, ok... Joke aside, as far as i can see, only a specifically handpicked event where the actual happenings conicide with an astrologic prediction could be used to make that case, and this is definitely not the sort of evidence i am thinking about. I don't think this would suffice any scientific requirements and i want solid scientific evidence.
Of course not! I wasn't saying that! You are either misunderstanding me, or misrepresenting me. But I will clarify further. Self-reports of the efficacy of astrology (say the kind of predictions found in daily newspapers) certainly do NOT provide 'proof' of anything. There are many confounding reasons why people would self report such a thing. HOWEVER, such self-reports DO count as supportive empirical evidence (as do real research papers that found correlations between star signs and certain health problems). In fact - in PSYCHOGENIC explanations for ill health, this sort of unreliable evidence shores up the whole edifice! If people in government uncritically believed in astrology the way they do in psychobabble (that's shorthand for a large subject by the way), then astrology could form part of the NICE guidelines on various treatment approaches!

So, if people relied on empirical evidence alone RATHER than the rational, critical analysis of the claims of astrology (correlations can always be found in astrology because of the cyclical nature of the system) - which IS what you were arguing with regard to 'science' in general (which includes psychiatric/psychological research according to many)- we'd all be in even more trouble. We're already in trouble because of the psychiatric paradigm of this illness, which is why you need analysis, not just more experiments 'being done by scientists' to progress in scientific knowledge.



I hope we can stop this pretty soon. I am starting to take some things said here personally, but i don't want to react in an angry way. Just let me tell you this. Your profile says "university lecturer". That's nice and i congratulate you. I do not have the same income like you. I am not able to seriously work. This is not so funny. I live with a budget that is around the minimum every person in my country will get from social security. I live well, but i am not rich. And i can save 100 USD or EUR per year. The UK has a social security system as well, as has every Western European country, as far as i know. It might not be exactly the same in every country, but i still strongly believe that 100 Dollars is possible to save in the UK, too, for most people. But it might take some planning, as in every country.
This tendency of yours to assume things about people is very problematic. I am a university lecturer, but a part-time one, because I am a full-time carer to my daughter. We are pretty poverty-stricken because of this alone, let alone other problems related to chronic illness sufferers and their families. University lecturers often don't get paid very well either, since the introduction of short-term contracts. Again, I really think you need to get yourself educated about how easy it is to fall into a spiral of poverty, when encountered by multiple jeopardies in material and social inequalities, especially in people in this community, disabled, but also subject to psychogenic dismissal. There are many adverse effects of that, and your belief 'most people' can save money is highly problematic at best. I'd say very naive in fact. You are not taking into account the issues around lack of money facing certain communities.

As for taking things personally, please remember your comments here have been quite personalised to me as a non-sufferer of ME/CFS. I'm not being angry though I think they are inappropriate. Instead I am showing you why they are so. I don't like your comment "I am starting to take some things said here personally, but i don't want to react in an angry way. Just let me tell you this." It implies I am making you 'angry'. I am just arguing against you, which is my right. I do have a problem with men indicating I am making them angry- in the physical world it is often accompanied by threats against women for daring to defend their arguments (or their person). While I am not in any fear of that here, I think you should be aware of the implications of your comments, and that you have no reason to be 'angry', even if you are taking things personally. I am trying not to personalise things, though I am making direct critical comments about your arguments. You on the other hand are making comments about my personal circumstances, as if they are relevant to this argument (and somehow negate my argument), which they are not and do not.
 
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Anyone notice how Salzberg refers to it as the 'Mikovits' study? Most scientists would refer to it as the Lombardi study, since he was the first author.
Who else seems to be obsessed with Mikovits? None other than Abigail from the ERV blog. Maybe that is why Salzberg's argument looks like a poor quality facsimile of prior arguments (presumably that's how all the obvious factual errors crept in).
 
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This terrible piece just showed how the original press release (the contamination papers) can be amplified weeks later by ignorant and prejudiced bloggers and hacks, and turned into something even worse, adding the most basic and misleading errors of fact, and spreading the original disinformation more widely.

The error that the Hue phylogenetic 'common ancestor' was a mouse and not a human cell line was particularly awful - a key detail.

Responding to papers like this, IMO, should be firstly based on scanning through for these key errors of fact. In the case of this piece, every line can be picked apart, which is time-consuming, but the efficient way perhaps is to hone in on the most critical, misleading error of fact and point that out with reference.

We do have a decent response network to this sort of thing, I think, distributed over the web, but it's always capable of getting better...and there is lots of it to deal with...





I read the whole thread, I tell you. The whole thread. I found myself howling uncontrollably at regular intervals.



I respect you for portraying it in such a generous manner...it's been a bit worse too... :)



Quite.

You have to say there were some important and legitimate issues brought up...but the discussion went nowhere because the offensive and aggressive tone drowned out the researchers' brave and commendable attempt at dialogue.

It seemed so sad: it seems as if our greatest energy and passion and anger is reserved for those who are most actively and positively trying to help us, for some weird reason.

I'd like to see Dusty posting here too, to get a less heated conversation with the ME/CFS community, it's great that he's approached this situation the way he has - I'm loving some of the openness I'm seeing recently and it should be encouraged, not stamped on: we should be grabbing those opportunities with both hands and building bridges; constructive networking with supporters like Dr Miller is crucial IMO.



It seemed that the full study design hasn't been agreed yet, that's what they were arguing about, and they want to clarify that there aren't any errors or loopholes in that study because it could be a death-knelll for XMRV research if that fails...I think that's a bit overstated, I'm not sure what the worry is over Ila Singh, or Maureen Hanson, or Lo and Alter, or the Bagni group, or any of the other people who are continuing to progress...or indeed the Lipkin and BWG work which hasn't all fallen apart quite yet...but I don't think Dr Miller's is the make or break study, anyway. Still, it's certainly important that the design is right, and it'd be a shame if an opportunity has been missed to review or discuss that design constructively.
Mark, I have to say, now I'm up to speed on what happened there, I disagree with the idea that the "offensive and aggressive tone drowned out the researchers' brave and commendable attempt at dialogue."

The concerns about Miller's intended research are legitimate. The problems of anonymous writers claiming to be funding (who the h-e -double hockey-sticks is 'Ecoclimber'?), or of being Miller himself, or of being Andy, his assistant, coming in with various ad hominems and appeals to authority against the people on the forum, the issues of apparent canvassing for research subjects, and all occuring in the context of a general, perfectly understandable, mistrust generated by the poor science and sinister politics SINCE Lombardi et al in opposition to that paper, are most likely to have caused the problems.

IF that was Miller and his assistant, IF 'Ecoclimber' was a funder, then their behaviour was atrocious. Constructing people as fools, true believers in things like cold fusion, having a go at them for their spelling and grammar I believe at one point? among all the other ad hominems, will have inflamed things. Even saying that, many people kept their cool commendably.
 

biophile

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Wayne said: Thanks for your great post. I just checked the comments on the Forbes article and it sure seems Mr. Salzburg is "getting his clock cleaned". Many comments there are top-notch, and his replies do not come across as even remotely credible. In fact, they come across to me as being "emotionally immature". Anyway, last count is over 4,000 views, ZERO recommendations. I hope Forbes takes notice.
Thanks Wayne. I wonder if it would have been much different even if there was no bias against ME/CFS, because it is easy to get things wrong when a journalist or science writer spends the minimal time and effort to produce their own article on a complex and emerging field. On the other hand, many articles didn't bother to seek adequate opinion or analysis from other sources to provide balance. As ME/CFS becomes more mainstream, I can see more of this sort of faulty journalism (and embarrassing corrections from the patient community) taking place for the exact same reasons. I think there is still a possibility that HGRV will be a dead end, but to me at this stage it is ironically looking more promising after this "contamination" debacle.

Mark said: This terrible piece just showed how the original press release (the contamination papers) can be amplified weeks later by ignorant and prejudiced bloggers and hacks, and turned into something even worse, adding the most basic and misleading errors of fact, and spreading the original disinformation more widely.
The contamination papers and press release are really looking like a house of cards at this point. It made chumps out of people who probably take pride in their critical thinking skills. I think as a community we are remarkably informed out of necessity and this gives us an edge.
 
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Thanks Wayne. I wonder if it would have been much different even if there was no bias against ME/CFS, because it is easy to get things wrong when a journalist or science writer spends the minimal time and effort to produce their own article on a complex and emerging field. On the other hand, many articles didn't bother to seek adequate opinion or analysis from other sources to provide balance. As ME/CFS becomes more mainstream, I can see more of this sort of faulty journalism (and embarrassing corrections from the patient community) taking place for the exact same reasons. I think there is still a possibility that HGRV will be a dead end, but to me at this stage it is ironically looking more promising after this "contamination" debacle.



The contamination papers are really looking like a house of cards at this point. It made chumps out of people who probably take pride in their critical thinking skills. I think as a community we are remarkably informed out of necessity and this gives us an edge.
I think you are right biophile.
 

Tuha

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I'm sorry, but this shows an (to my mind, by now, inexcusable) ignorance of the rank poverty affecting many ME/CFS sufferers, and possibly an ignorance of the issue of poverty per se. That's even before we discuss that even your unrealistic scenario is still unlikely to be enough of a 'miracle' to get that panacea of 'research' completed. There are people out there living in 'Dickensian conditions' (a key advocate for ME/CFS sufferers' quote actually, not my own) who can barely
Hi Angela,

I find a part of your discussion with eric about research funding really interesting even if it starts to be a bit strong. I think I see the things simillar like eric. Now, when we get almost no public funding for cfs research - the money from the patients, their friends and families is the only way how to support the cfs research. of course noone is saying that the patients are able to fund all cfs research but i think it could be an important part with continuing to make pressure on governement to fund cfs research.

I think the problem of this discussion is that it turned into a bad direction. I think eric and noone is expecting that the patients who have really bad life conditions and live in poverty will support cfs research. we have to talk about the patients who are able to do it. it' s difficult to say have many cfs patients live in poverty - there are no statistics. the only statistic which I know is that 25% of cfs patients are housbound (I am not 100 % sure about this statistic). but then it also depends if you get social money, how much, if you live with parents,if your partner has a good job.... so there are many factors. on the other side also the cfs patients who work can live in poverty and are not able to donate.

but I think eric numbers have not to be unrealistic. maybe not 75 % of cfs patients are able to donate but we can also count with multiplication effect - a lot of us have families, friend who could help us also. just an example - the last year, i did a small money collection for cfs research by asking my friends and family and i was really surprised because i got 1000 EUR from them (and I am from East Europe) - i think it can be a possitive example how it can work.

so i think what eric proposed - we should at least try it - we cannot lose anything with trying. I think each cfs patient should check on the end of each month if he is able to donate some money. and if he is not - there is no problem, noone will accuse him - we are on the same boat. there are already a lot of possitive examples that this system can work - just to say the last ones:
- 222 patients funded the ad in Washington Post (12 000 USD)
- spanish patients helped to fund that XMRV Barcelone study

So I think with big campaign on all cfs forums and cfs national organisations it could maybe work - we should be at least able to found some studies.it' s sad that WPI or other researchers like doctor Bell, Cheney dont have money for their studies. today I read that WPi dedicated to cfs research 3 mil. USD (i think this is during all the years - not the last one). a lot of people were exciting about this number but i am not. if we count that they have some really big donnors if we say that 10 000 people donated - I think it's not a big number - they are our hope - we have to try it.
it's really sad if you hear doctor Bell to say that he cannot do an important study because he miss 100 000 USD - i think with the numbers of cfs patients - it should be possible to fund it.

on the end i would like to tell you one example. i think it's in our natural that the people dont want to spend their money on the things like medical research even if it's about their health. i personally talked to 5 cfs patients from my country about the need of personal donations to cfs research. their answer was immediatelly that they dont have enough money. from their look,talk and everything I didnt have impression that they have money problems. just to say it shortly then i tried to talk more about that need and on the end all of them said that they can support cfs research with some money. so i think this is just a problem of discussion that the people have to start to understand that it's important.

then another example. i tried to encourage the people on my national cfs forum to donate. some people said that they live in poverty - again no problem. some people said that they would donate and a lot of people said that they would support somthing but in our country. I think a lot of people from the last group could be potential donnors if we would explain them better the importance.

i think i wrote already too much. i hope that i didnt touch anyone with how i see the things. but we have to see the things also in positive way because we will never try.we have to take our future to our hands. but maybe this topic is for another threat

bye
 

ukxmrv

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I'm really glad that we are talking about this topic. There are many PWME and CFS who could give to research but are simply not doing it. I don't know how to reach these people.

Although most people I know are living in poverty and in conditions that make me cry, there are wealth patients in comparison who pay many thousands for treatment but give nothing to research in the UK or anywhere.

People who are educated and informed about the disease know how bad the situation is. They can use computers, belong to support groups or internet forums and follow developments.

However, there is a large group of patients and their families who can't use a computer due to physical/cognitive problems or who cannot find the right places on the internet for real/relative information. There are many thousands of patients who would not even think to look on the internet for research and have no idea who the researchers are and what they do.

Recently I saw a post to another forum for someone with ME who was asking around about a particular practitioner. This was most likely a charlatan but had been recommended to them. They had a family member willing to pay. There are thousands of patients like this with family money or their own money paying for experimental treatments each week and often doomed for failure. They don't ever mention funding research. Hardly anyone posts to groups asking which is the best charity or research group to donate to.

Hardly any family members raise money for good research. It has also been argued that we have few good researchers to donate to in the UK. I do see however far more sponsored events or requests for donations to AFME, which is a charity I do not support.

In some families the burden of caring for the ME patient is just more then a family can cope with. In others they could do more but are simply not motivated to do so.
 
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I was focusing on the poverty issue here. At least some people have recognised ME/CFSers may be in terrible poverty now!

But, as I've mentioned before, there are other problems with the 'raising money for biomedical research' exhortation.

The first problem is the "patients HAVE to donate and if they do not they are wrong" meme which turns up in these debates. They are already creeping up here- this compulsion to 'donate' or 'raise money', and in Eric's apparent argument, to do this RATHER than actively gear up on the scientific knowledge ourselves and publicly critique the bad science, which many of us are more knowledgeable than journalists and, heaven help us, at least some of the 'scientists' themselves! And these are particular problems because:

The second is the "How dare patients use what little money they've got on things that might make things better for them, but are not considered 'evidence based'" sentiment which is the implication when people start complaining about other people's treatment choices, indicating that money should go to 'biomedical research'. This is cruel. People's health and lives are improving on certain treatments. To expect them to sacrifice this on the altar of 'evidence based medicine', which is what is being implied, is wrong. People's choices are people's choices. I disagree with some of them (LP) for example, but I still cannot presume to exhort other people to spend money on something that may never benefit them (which is always possible-sometimes likely in science, slow-moving as it is at best).

Thirdly, biomedical research costs a LOT of money. It is unfair and unreasonable to blame people for not being in a position to either save or 'raise' money, either because of financial poverty or 'energy' poverty - a massive problem for many in the community, especially considering how expensive research actually is, and imply they are responsible for poor progress in research, something I have seen.

Fourthly, scientific research does not take place in a political vacuum. I actually disapprove of some of the research being deemed 'biomedical': I think it's 'bad science' that causes more problems for the community. That my money might go to 'bad science' (or my daughter's if either of us had any at the end, or middle, of the month!) is abhorrent. I think some of the organisations asking for funding have been guilty of 'friendly fire' on the community also, and therefore I do not want my hypothetical money to go somewhere that I think may be harming the community's cause.

Fifth, Funding by patients can lead opponents to attack biomedical research as being biased by its funders. This happens all over 'science'. Members of the ME/CFS community attack research because it's funded by Linbury or big pharma. While I think we have to weather that and show why research is good (when it is), it does illustrate how raising money for biomedical research would not be the panacea for the community it is sometimes portrayed as.

This is NOT saying to people "DON'T donate or raise money for research"! It is just demonstrating why EXHORTATION is not working for people, and why few people are either in a position, or choosing, to do so. I suspect people are sick of being told to stop taking carnitine, or melatonin, or Q10, or whatever is helping them through difficult lives and disastrous health, while others are sick of being told to reduce heating their house, or their food in order to put that money into 'research' (because for some, this is what is being implied to them), especially when there are other problems such as those I've mentioned above.

Personally, having some experience of seeing some excellent advocacy in action for very disadvantaged ME/CFS sufferers, I would put any money I did have into any practical advocacy funds that were available to help other particularly disadvantaged sufferers . I might also give to particular biomedical research projects I thought were useful (just like Linbury or big pharma do all the time). That's on the understanding that I don't actually have money to give at this time. These may be ways to go in the future for those hoping to raise money and there may be others, but attacking people's choices and demanding they pay-up, which is what some exhortations have become, is actually counter-productive.
 

Tuha

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angela, i think this is a topic where is just difficult to find one best solution. I am the last one who would lead a campaign like "patients HAVE to donate and if they do not they are wrong". i read your arguments and i can understand your attitude. What i say in my opinion - I think that patients should donate if they can but if they will not it doesnt mean that they are wrong. just we can have discussion about, everyone says his arguments without an accusation and on the end everyone can decide what he will do.

i have no scientific background but i think i understand that the science is expensive, there is a lot of bad science, politic issue,...but some of these problems you can avoid. i was for example thinking to contact ESME where is a scientic panel of cfs researchers. they could maybe propose some studies which we could try to fund and then the patients can decide alone which study they would like to support. of course, they can also do bad science but this risk is always in science. for me this risk is acceptable for someone else maybe not and i can understand without accusation. and then the people who like this risk can join this campaign.

So I think that we could try it - i dont say that my opinion is right and everything what I would propose is a discussion about / there will be a lot of people who will say that they dont like it but then there will be a lot of people who just dont think about and maybe with a discussion we can get them for our project. if it will happend i will be happy - the other side maybe not but how i said this topic has not only one right solution.

if i look around all other sicknesses try to find money for the research - and they try to use all sourcess possible - what is pity that we have one big problem - our sickness is not taken seriously so we will not get soon federal funding, no money from healthy people - so the only way are patients donation.

how i see the things, without research money we will not improve our situation. i think we could try to do something for it and that's why this talk is here.
when someone prefere to support an advocacy for disadvantage suffers - it' s also great - how you say our sourcess are limited and we cannot support everything.

the reserch is expensive and sometimes it takes for a long time to get some positive results. but maybe we can be lucky and 3-4 studies can change everything - who would expect one year ago that they will find a possible cause of me/cfs and now we have here xmrv and we are waiting if they will confirm it. maybe the luck will turn to us but in my opinion we have to help it.
 
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... Funding by patients can lead opponents to attack biomedical research as being biased by its funders. This happens all over 'science'. Members of the ME/CFS community attack research because it's funded by Linbury or big pharma. While I think we have to weather that and show why research is good (when it is), it does illustrate how raising money for biomedical research would not be the panacea for the community it is sometimes portrayed as.
Aaagh! Listen out for the demonstration of this problem : ( Again, not saying therefore no patient should fund research, just showing the problems raised...

http://www.youtube.com/watch?v=pXNmrVP7Gi4&feature=player_embedded
 
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angela, i think this is a topic where is just difficult to find one best solution. I am the last one who would lead a campaign like "patients HAVE to donate and if they do not they are wrong". i read your arguments and i can understand your attitude. What i say in my opinion - I think that patients should donate if they can but if they will not it doesnt mean that they are wrong. just we can have discussion about, everyone says his arguments without an accusation and on the end everyone can decide what he will do.

i have no scientific background but i think i understand that the science is expensive, there is a lot of bad science, politic issue,...but some of these problems you can avoid. i was for example thinking to contact ESME where is a scientic panel of cfs researchers. they could maybe propose some studies which we could try to fund and then the patients can decide alone which study they would like to support. of course, they can also do bad science but this risk is always in science. for me this risk is acceptable for someone else maybe not and i can understand without accusation. and then the people who like this risk can join this campaign.

So I think that we could try it - i dont say that my opinion is right and everything what I would propose is a discussion about / there will be a lot of people who will say that they dont like it but then there will be a lot of people who just dont think about and maybe with a discussion we can get them for our project. if it will happend i will be happy - the other side maybe not but how i said this topic has not only one right solution.

if i look around all other sicknesses try to find money for the research - and they try to use all sourcess possible - what is pity that we have one big problem - our sickness is not taken seriously so we will not get soon federal funding, no money from healthy people - so the only way are patients donation.

how i see the things, without research money we will not improve our situation. i think we could try to do something for it and that's why this talk is here.
when someone prefere to support an advocacy for disadvantage suffers - it' s also great - how you say our sourcess are limited and we cannot support everything.

the reserch is expensive and sometimes it takes for a long time to get some positive results. but maybe we can be lucky and 3-4 studies can change everything - who would expect one year ago that they will find a possible cause of me/cfs and now we have here xmrv and we are waiting if they will confirm it. maybe the luck will turn to us but in my opinion we have to help it.
Fair points. BUT one thing - people have been campaigning for years to get biomedical research funded by governments. THAT should not be abandoned - so patients raising money is neither 'the way' to make everything better, nor the 'only' way to be advocating.