Article: A Man From Whom Viruses Cant Hide - Chang Lee/The New York Times on Dr. Ia
- Thread starter Phoenix Rising Team
- Start date
"First, the interpretation he made of Wakefield's research could have gone either way and he chose to take the interpretation most supportive of the current medical system. Second, I've heard he likes to steal the work of other people and claim it as his own."
The same sentiment can be expressed as
"The evidence showed that the defendant may or may not be a witch and the judge chose to take the interpretation favored by liberals and socialists. I've heard that the judge himself reads everything printed about witchcraft and likes to present ideas of other people it in his own highly paid speeches. I do not need to offer any evidence nor provide any examples, because from his failure to convict the defendant (whom we all know is a witch) we know that the judge is a witch sympathizer or perhaps a closet witch."
I've learned nothing about Dr. Lipkin from your post, but when I hear spluttering rage and ad hominem attacks directed against someone involved in a rational pursuit it makes me think that the target is doing something right.
Re Mark at #14
Your post brings up a deeper issue: At a time when we know that 'authoritative' sources of information and individuals in the government possessing considerable power lie, and lie in ways that materially undermine our well-being how do we know whom to believe?
I don't think there is an easy answer. "Believe nothing" is equal to "believe everything"; neither approach evaluates for truth. Without at least some personal knowledge of a subject of interest it can be very hard to untangle truth, lies, and the ordinary fog of uncertainty where the truth is not known with surety by anyone.
I also think we should not get totally fixated on XMRV. We know this disease is real, we're pretty sure there's at least one infectious agent involved and it wouldn't be at all surprising if it turns out be an AIDS-like phenomenon caused by at root by retrovirus and affected by a legion of factors which promote or suppress the virus, and perhaps the retrovirus is XMRV.
The last 2 make a ton of sense, but that doesn't mean they must be *the* answer.
Unfortunately this quite real and crippling disease has gotten a strange treatment from the main research driver on Earth - the US government. Having a cause for the disease that said beast is forced to recognized would create some activity, but it could simply result in the beast chasing XMRV and placing zero effort on curing M.E. aka CFIDS.
Your post brings up a deeper issue: At a time when we know that 'authoritative' sources of information and individuals in the government possessing considerable power lie, and lie in ways that materially undermine our well-being how do we know whom to believe?
I don't think there is an easy answer. "Believe nothing" is equal to "believe everything"; neither approach evaluates for truth. Without at least some personal knowledge of a subject of interest it can be very hard to untangle truth, lies, and the ordinary fog of uncertainty where the truth is not known with surety by anyone.
I also think we should not get totally fixated on XMRV. We know this disease is real, we're pretty sure there's at least one infectious agent involved and it wouldn't be at all surprising if it turns out be an AIDS-like phenomenon caused by at root by retrovirus and affected by a legion of factors which promote or suppress the virus, and perhaps the retrovirus is XMRV.
The last 2 make a ton of sense, but that doesn't mean they must be *the* answer.
Unfortunately this quite real and crippling disease has gotten a strange treatment from the main research driver on Earth - the US government. Having a cause for the disease that said beast is forced to recognized would create some activity, but it could simply result in the beast chasing XMRV and placing zero effort on curing M.E. aka CFIDS.
I really do hope Lipkin is the man he has been presented in the New York Times article. I'm just informing you what our community's experience has been with him. Now, could that be just bad luck? Certainly! But if our community was excited about a researcher who'd had a hand in going after Dr. Elaine De Freitas and shutting down a promising line of inquiry I would hope you would convey your concerns.
All the best,
Kent Heckenlively
Sean:
This is from a critique of Lipkin and Hornig's work on the measles virus and autism. It raises issues of the quality of their work in controversial areas. The critique seems to center around two important areas, patient selection (a problem I know your community has complained about in regards to researchers) as well as where in the gut they took biopsy samples. Specifically, Wakefield and his group took gut samples from 91 children with autism and certain gastrointestinal symptoms and found evidence of the measles virus in 75 of the samples. The CDC/Lipkin/Hornig study took only 25 samples and only from 1 who matched the patient profile Wakefield used. Not surprisingly, all three labs found the measles virus in the gut sample from that child.
It was probably inappropriate for me to mention the fellow member of our community who claims that Lipkin likes to steal work. I do not have verification for that, so I will say again I should not have mentioned it, and kept it to myself.
I am hopeful that any intemperate remarks on my part will not prevent civil dialogue between our communities.
All the best,
Kent Heckenlively
The recent CDCsponsored study
Problems
Many people only read the abstract of a publication and the very first sentence of the
abstract of the recent study is wrong:
The presence of measles virus (MV) RNA in bowel tissue from children with autism
spectrum disorders (ASD) and gastrointestinal (GI) disturbances was reported in 1998
Wakefield never mentioned measles virus (MV) RNA in his February 1998 landmark
article. In addition, the statement does not even adequately summarize the first
paragraph of the publication that states otherwise:
Beginning in 1998, Wakefield and colleagues reported intestinal
abnormalities, including reactive lymphoid hyperplasia in ileum, in
children with autism and other developmental disturbances [1][8].
These findings, combined with parent-reported associations of timing
of onset of behavioral abnormalities with MMR administration, led to
the hypothesis that MMR contributed to autism pathogenesis [1].
Subsequent studies from this group reported MV RNA in bowel
biopsies and peripheral blood mononuclear cells (PBMC) from children
with ASD [9][12].
A more accurate first sentence would have been:
In 2002, Uhlmann, Martin, Shiels, Wakefield and OLeary reported finding evidence
of measles virus RNA in 75 of 91 intestinal biopsies from children who developed
autism and had certain typical gastrointestinal (GI) findings following MMR
vaccination but that would have obviously created a problem right off the bat!
For those readers who would have wondered: How come the U.K. study had 75
positive cases and this CDC-sponsored study from Columbia & Harvard had only
one? the authors of the new study could have certainly not been able to blame
OLeary, his laboratory and his findings.
So why were the findings so different?
75 out of 91 vs. 1 out of 25
The answer to that question is SELECTION / SELECTION: Selection of the cases
and selection of the biopsy site
In the British study, the highly-focused team of Andrew Wakefield carefully studied
the cases that fulfilled the study criteria and the matched controls.
In Boston (see Subjects Characteristics), The clinical indications for
endoscopic/colonoscopic procedures commonly noted in both AUT/GI and GI groups
included recurrent abdominal pain (RAP), gastroesophageal reflux, vomiting, and
food allergies.
At the Royal Free Hospital in London, an experienced pediatric gastro-enterologist
performed the procedures and obtained the biopsies under fluoroscopy from the
affected areas of ileocolonic lymphonodular hyperplasia in children known to have
the new variant of inflammatory bowel disease. The result: His biopsies yielded
impressive findings.
In the CDC-sponsored study,
Biopsy material was obtained from terminal ileum and cecum under direct supervision of the
team gastroenterologist. For analyses of MV RNA, four random samples were taken from
superficial mucosae of ileum and cecum. Additional specimens were acquired at sites
indicative of inflammatory GI lesions, if present. All samples intended for RNA analysis were
frozen immediately in coded tubes
The first sentence suggests that the team gastroenterologist did not perform the
procedure himself but supervised a fellow or a resident - who obtained the biopsy
material.
When an attending surgeon supervises a resident performing a surgical procedure
such as an appendectomy, he or she effectively assists the doctor in training by
standing on the other side of the table and helping at every step sponging,
retracting, tying etc
Supervising a colonoscopy with biopsy (s) on a small child is totally different of
course. There is not enough room at the foot of the operating table for two adults and
all the attending can do is scrub, gown and supervise.
But why were cecum biopsies obtained in this study?
Didnt the study gastroenterologist know that the pathological entity that Wakefield
described was called ileal lymphonodular hyperplasia?
Didnt the team read the British paper where it is clearly stated that the MV RNA
was predominantly detected in dendritic cells in reactive follicular hyperplastic
centres in ileal biopsies from affected children?
Didnt anyone remember that Wakefields team did not find evidence of measles
virus protein in biopsies from the colon including the cecum?
The real problems with the site selection were that:
A: All the unwarranted cecal biopsies were effectively useless
B: Because we do not know how many there were, we cannot even start to
guess what impact they had on the study results.
Let us now examine the second sentence in the above paragraph and the statement
four random samples were taken.
I take that statement as meaning that the biopsy samples were obtained in a random
fashion and therefore not necessarily from the involved and inflamed areas. I am
obviously not a surgeon but I strongly suspect that a surgeon investigating a lump in
the breast of a woman would not be taking four random biopsies in that breast or
the other breast.
I would dare say that when one takes random biopsy samples, one is likely to get
random results unless the pathology is diffuse and widely spread.
Lastly, let us look at the very next and even more amazing sentence Additional
specimens were acquired at sites indicative of inflammatory GI lesions, if present
for which the only printable comment is:
You must be kidding!
Did Lipkin and friends hope to find evidence of measles virus presence in tissues that
were scarcely or not at all inflamed?
Did they seriously want to compare their biopsy results with those obtained by an
experienced specialist from the reactive lymphoid expansion of very inflamed
intestinal areas?
Which brings us to the puzzling second paragraph of the Discussion?
After the authors assuredly announced in the first paragraph that they found no
differences between AUT/GI and GI control groups in detection of MV sequences in
RNA extracted from ileal or cecal biopsy specimens, they added the following in the
very next paragraph:
Our results differ with reports noting MV RNA in ileal biopsies of 75% of ASD
vs. 6% of control children [10], [41]. Discrepancies are unlikely to represent
differences in experimental technique because similar primer and probe
sequences, cycling conditions and instruments were employed in this and
earlier reports; furthermore, one of the three laboratories participating in this
study performed the assays described in earlier reports. Other factors to
consider include differences in patient age, sex, origin (Europe vs. North
America), GI disease, recency of MMR vaccine administration at time of
biopsy, and methods for confirming neuropsychiatric status in cases and
controls.
Are the authors really saying what I think they are saying?
Are they really telling us that if they had attempted to replicate the Uhlmann study
they would and could have, in all likelihood, obtained identical results?
(Author's note - The Uhlmann study replicated Wakefield's research and confirmed his findings.)
This is from a critique of Lipkin and Hornig's work on the measles virus and autism. It raises issues of the quality of their work in controversial areas. The critique seems to center around two important areas, patient selection (a problem I know your community has complained about in regards to researchers) as well as where in the gut they took biopsy samples. Specifically, Wakefield and his group took gut samples from 91 children with autism and certain gastrointestinal symptoms and found evidence of the measles virus in 75 of the samples. The CDC/Lipkin/Hornig study took only 25 samples and only from 1 who matched the patient profile Wakefield used. Not surprisingly, all three labs found the measles virus in the gut sample from that child.
It was probably inappropriate for me to mention the fellow member of our community who claims that Lipkin likes to steal work. I do not have verification for that, so I will say again I should not have mentioned it, and kept it to myself.
I am hopeful that any intemperate remarks on my part will not prevent civil dialogue between our communities.
All the best,
Kent Heckenlively
The recent CDCsponsored study
Problems
Many people only read the abstract of a publication and the very first sentence of the
abstract of the recent study is wrong:
The presence of measles virus (MV) RNA in bowel tissue from children with autism
spectrum disorders (ASD) and gastrointestinal (GI) disturbances was reported in 1998
Wakefield never mentioned measles virus (MV) RNA in his February 1998 landmark
article. In addition, the statement does not even adequately summarize the first
paragraph of the publication that states otherwise:
Beginning in 1998, Wakefield and colleagues reported intestinal
abnormalities, including reactive lymphoid hyperplasia in ileum, in
children with autism and other developmental disturbances [1][8].
These findings, combined with parent-reported associations of timing
of onset of behavioral abnormalities with MMR administration, led to
the hypothesis that MMR contributed to autism pathogenesis [1].
Subsequent studies from this group reported MV RNA in bowel
biopsies and peripheral blood mononuclear cells (PBMC) from children
with ASD [9][12].
A more accurate first sentence would have been:
In 2002, Uhlmann, Martin, Shiels, Wakefield and OLeary reported finding evidence
of measles virus RNA in 75 of 91 intestinal biopsies from children who developed
autism and had certain typical gastrointestinal (GI) findings following MMR
vaccination but that would have obviously created a problem right off the bat!
For those readers who would have wondered: How come the U.K. study had 75
positive cases and this CDC-sponsored study from Columbia & Harvard had only
one? the authors of the new study could have certainly not been able to blame
OLeary, his laboratory and his findings.
So why were the findings so different?
75 out of 91 vs. 1 out of 25
The answer to that question is SELECTION / SELECTION: Selection of the cases
and selection of the biopsy site
In the British study, the highly-focused team of Andrew Wakefield carefully studied
the cases that fulfilled the study criteria and the matched controls.
In Boston (see Subjects Characteristics), The clinical indications for
endoscopic/colonoscopic procedures commonly noted in both AUT/GI and GI groups
included recurrent abdominal pain (RAP), gastroesophageal reflux, vomiting, and
food allergies.
At the Royal Free Hospital in London, an experienced pediatric gastro-enterologist
performed the procedures and obtained the biopsies under fluoroscopy from the
affected areas of ileocolonic lymphonodular hyperplasia in children known to have
the new variant of inflammatory bowel disease. The result: His biopsies yielded
impressive findings.
In the CDC-sponsored study,
Biopsy material was obtained from terminal ileum and cecum under direct supervision of the
team gastroenterologist. For analyses of MV RNA, four random samples were taken from
superficial mucosae of ileum and cecum. Additional specimens were acquired at sites
indicative of inflammatory GI lesions, if present. All samples intended for RNA analysis were
frozen immediately in coded tubes
The first sentence suggests that the team gastroenterologist did not perform the
procedure himself but supervised a fellow or a resident - who obtained the biopsy
material.
When an attending surgeon supervises a resident performing a surgical procedure
such as an appendectomy, he or she effectively assists the doctor in training by
standing on the other side of the table and helping at every step sponging,
retracting, tying etc
Supervising a colonoscopy with biopsy (s) on a small child is totally different of
course. There is not enough room at the foot of the operating table for two adults and
all the attending can do is scrub, gown and supervise.
But why were cecum biopsies obtained in this study?
Didnt the study gastroenterologist know that the pathological entity that Wakefield
described was called ileal lymphonodular hyperplasia?
Didnt the team read the British paper where it is clearly stated that the MV RNA
was predominantly detected in dendritic cells in reactive follicular hyperplastic
centres in ileal biopsies from affected children?
Didnt anyone remember that Wakefields team did not find evidence of measles
virus protein in biopsies from the colon including the cecum?
The real problems with the site selection were that:
A: All the unwarranted cecal biopsies were effectively useless
B: Because we do not know how many there were, we cannot even start to
guess what impact they had on the study results.
Let us now examine the second sentence in the above paragraph and the statement
four random samples were taken.
I take that statement as meaning that the biopsy samples were obtained in a random
fashion and therefore not necessarily from the involved and inflamed areas. I am
obviously not a surgeon but I strongly suspect that a surgeon investigating a lump in
the breast of a woman would not be taking four random biopsies in that breast or
the other breast.
I would dare say that when one takes random biopsy samples, one is likely to get
random results unless the pathology is diffuse and widely spread.
Lastly, let us look at the very next and even more amazing sentence Additional
specimens were acquired at sites indicative of inflammatory GI lesions, if present
for which the only printable comment is:
You must be kidding!
Did Lipkin and friends hope to find evidence of measles virus presence in tissues that
were scarcely or not at all inflamed?
Did they seriously want to compare their biopsy results with those obtained by an
experienced specialist from the reactive lymphoid expansion of very inflamed
intestinal areas?
Which brings us to the puzzling second paragraph of the Discussion?
After the authors assuredly announced in the first paragraph that they found no
differences between AUT/GI and GI control groups in detection of MV sequences in
RNA extracted from ileal or cecal biopsy specimens, they added the following in the
very next paragraph:
Our results differ with reports noting MV RNA in ileal biopsies of 75% of ASD
vs. 6% of control children [10], [41]. Discrepancies are unlikely to represent
differences in experimental technique because similar primer and probe
sequences, cycling conditions and instruments were employed in this and
earlier reports; furthermore, one of the three laboratories participating in this
study performed the assays described in earlier reports. Other factors to
consider include differences in patient age, sex, origin (Europe vs. North
America), GI disease, recency of MMR vaccine administration at time of
biopsy, and methods for confirming neuropsychiatric status in cases and
controls.
Are the authors really saying what I think they are saying?
Are they really telling us that if they had attempted to replicate the Uhlmann study
they would and could have, in all likelihood, obtained identical results?
(Author's note - The Uhlmann study replicated Wakefield's research and confirmed his findings.)
Hi Kent, thank you for this detailed study information and for highlighting the areas of concern. I agree with the points you have raised and very much appreciate your informed comments in this forum.
I agree. I am not jumping on the Lipkin love fest express so fast. I won't trust him until WPI issues a press release saying they fully support his activities. Until then I'll remain very skeptical of any government sanctioned Hollywood Virus Hunters. He has a lot more to lose by going against the wishes of CDC, FDA, NIAD, NIH, etc whatever they may be.
It certainly was inappropriate, and as a lawyer you should have known better then to rely on unsubstantiated hearsay, especially over such a serious charge.
If you have any genuine questions or criticisms about Lipkin's technical work or his ethics (or anybody else's), then I will defend your right to put them forward in public fora - provided you have some good evidence to back them.
I think maybe it's cause I'm a dog and nobody ever thinks to put the kool-aid in the toilet bowl but I keep missing out on the band wagon effect. (grins)
Most people don't get into the high, high, up positions because they are brilliant, they get their cause they are "good" and because they have friends, and/or know somebody or are in the right place at the right time and are willing to make friends with the right people. I did a bit of research on Dr. Lipkin and he has just about every second tier award ya can get but their are no Lasker awards or equivalent. (grins) And he is a smart guy in the respect that he understood and understands the computer side of research in a way that is not too geeky but can really translate into much needed way utilizing, really utilizing many of the computer based scientific equipment in new and cool ways. Many of us are computer geeks and we know just how much of a Demi-God that can make you among those who struggle with the technology. This seems to be Dr. Lipkin's genius and I applaud him and think he's cool and kinda cute in a geeky (just the way I like em) way.
How ever I have two problems with the way things are being billed.
The first is that Dr. Lipkin will somehow "single handedly" decide that XMRV is there or not there. This is kinda silly. It's kinda like saying that Dr. Lo and Dr. Alter didn't know how to run their test's and so Dr. Lipkin is going to decided if they really were looking at mouse DNA or MLV provirus. Or that all the work that Dr. Coffin has put into developing the assays that differentiate between mouse DNA fragments and X/MLV gag sequences must now be checked by Dr. Lipkin or that Dr. Sandra Ruscetti or Dr. Illa Singh are not capable of creating high quality specific assays that are able to find a virus that they have been working with for over 30 years, in the case of Dr. Ruscetti. It's kinda insulting. I'm not saying it's insulting on the part of Dr. Lipkin, he may be a first class kinda guy, but the way this thing is being build would certainly put my back up if I was a researcher.
The second problem with the entire thing is that Dr. Lipkin does not and has not in the past worked alone on these things. There is no "I" in "Team". (big grins) But this whole set up is being billed as an I kinda research project. Which is a lie right up front, cause we know that Dr. Lipkin is doing the initial testing but the samples are being sent out to the other labs to see 1st if the BWG "gold standard" assay works and 2nd to see if any of the other labs, WPI, FDA, NIH, CDC, has a better or more specific assay that they have had time to work on and to refine. So This effort involves the BWG, the CDC, the FDA labs, the NIH labs, the WPI, that's a lot of TEAM members to be making "I" statements and saying this guy "if he can't find it it doesn't exits" kinda statement.
The whole thing doesn't make a lot of sense. It seems like a lot of smoke and mirrors and delaying since the beginning. I just put this down to yet more mind control for the masses. (yawn)
Most people don't get into the high, high, up positions because they are brilliant, they get their cause they are "good" and because they have friends, and/or know somebody or are in the right place at the right time and are willing to make friends with the right people. I did a bit of research on Dr. Lipkin and he has just about every second tier award ya can get but their are no Lasker awards or equivalent. (grins) And he is a smart guy in the respect that he understood and understands the computer side of research in a way that is not too geeky but can really translate into much needed way utilizing, really utilizing many of the computer based scientific equipment in new and cool ways. Many of us are computer geeks and we know just how much of a Demi-God that can make you among those who struggle with the technology. This seems to be Dr. Lipkin's genius and I applaud him and think he's cool and kinda cute in a geeky (just the way I like em) way.
How ever I have two problems with the way things are being billed.
The first is that Dr. Lipkin will somehow "single handedly" decide that XMRV is there or not there. This is kinda silly. It's kinda like saying that Dr. Lo and Dr. Alter didn't know how to run their test's and so Dr. Lipkin is going to decided if they really were looking at mouse DNA or MLV provirus. Or that all the work that Dr. Coffin has put into developing the assays that differentiate between mouse DNA fragments and X/MLV gag sequences must now be checked by Dr. Lipkin or that Dr. Sandra Ruscetti or Dr. Illa Singh are not capable of creating high quality specific assays that are able to find a virus that they have been working with for over 30 years, in the case of Dr. Ruscetti. It's kinda insulting. I'm not saying it's insulting on the part of Dr. Lipkin, he may be a first class kinda guy, but the way this thing is being build would certainly put my back up if I was a researcher.
The second problem with the entire thing is that Dr. Lipkin does not and has not in the past worked alone on these things. There is no "I" in "Team". (big grins) But this whole set up is being billed as an I kinda research project. Which is a lie right up front, cause we know that Dr. Lipkin is doing the initial testing but the samples are being sent out to the other labs to see 1st if the BWG "gold standard" assay works and 2nd to see if any of the other labs, WPI, FDA, NIH, CDC, has a better or more specific assay that they have had time to work on and to refine. So This effort involves the BWG, the CDC, the FDA labs, the NIH labs, the WPI, that's a lot of TEAM members to be making "I" statements and saying this guy "if he can't find it it doesn't exits" kinda statement.
The whole thing doesn't make a lot of sense. It seems like a lot of smoke and mirrors and delaying since the beginning. I just put this down to yet more mind control for the masses. (yawn)
Well, I am not jumping on the WPI love fest so fast either. I think it is pretty silly to hold the WPI (or anybody else) as the gold standard for anything in this field at this point in time, just because their claims appear to support us.
Confirmation bias and conspiracy theory is a dangerous combination. It is very easy to find a whole grab bag of alleged reasons from the safety of your internet equipped armchair that 'prove' a priori that somebody is biased and untrustworthy and even corrupt. Much harder to find reasons that actually stand up to proper scrutiny. He has not even published anything yet (on ME/CFS), and you are already writing him off? Seriously?
If you don't want Lipkin on the job, then who are you suggesting as a replacement? The list of those who have the technical ability, no history with ME/CFS, and who are willing to subject themselves to this sort of smear campaign, is pretty damn short.
As the founding member of the Starry-Eyed and Goofy over Dr. Singh Fan Club I'd like to make the following statement. Our charter strictly calls for being starry-eyed and goofy at all times. Hey, I bump into walls anyway, I just have an excuse now - for bumping into walls, that is . As for being starry eyed and goofy, well, let's just say the CBT isn't working out.
Sean:
I believe I have now put forward well-founded criticism of Lipkin and Hornig's work regarding the measles virus and the gastro-intestinal issues of children with autism. Specifically, the patient selection criteria as well as the site selection for biopsies. Given that this research was conducted in an atmosphere of a drawn-out legal proceeding against Wakefield and for many was considered the "definitive" study which would either exonerate or support Wakefield I hope you can appreciate how strong feelings ran about the study and its authors.
Now that I've provided you with the information you requested, do you have any comment about the thoroughness of the Lipkin/Hornig measles study?
All the best,
Kent Heckenlively
I believe I have now put forward well-founded criticism of Lipkin and Hornig's work regarding the measles virus and the gastro-intestinal issues of children with autism. Specifically, the patient selection criteria as well as the site selection for biopsies. Given that this research was conducted in an atmosphere of a drawn-out legal proceeding against Wakefield and for many was considered the "definitive" study which would either exonerate or support Wakefield I hope you can appreciate how strong feelings ran about the study and its authors.
Now that I've provided you with the information you requested, do you have any comment about the thoroughness of the Lipkin/Hornig measles study?
All the best,
Kent Heckenlively
As the founding member of the Starry-Eyed and Goofy over Dr. Singh Fan Club I'd like to make the following statement. Our charter strictly calls for being starry-eyed and goofy at all times. Hey, I bump into walls anyway, I just have an excuse now - for bumping into walls, that is . As for being starry eyed and goofy, well, let's just say the CBT isn't working out.
(really big goofy grins) I would definately say the Illa Singh is really good and non biased and she's got really pretty skin and I'd love to curl up with her and let her pet my starry eyed and goofy grined head. I was wondering why you keep running into the wall Otis, now I know.
I second Otis' clarification: just because we're not still writing about that subject does not mean we're any less starry-eyed and goofy. We're just being goofy in our own time.
I, for example, have been racking my brains and searching in vain for appropriate songs called 'Ila'. There don't seem to be any, so clearly one needs writing...it's very hard for me to justify writing a song as a priority task, but just in case there are any musicians out there from whom such a piece could be commissioned, my working title is 'Ila View'. I have also noted that 'Ila' rhymes with 'beautiful smiler' and 'patent filer'. And 'Singh' rhymes with 'ring' and 'ding-a-ling'. It's a work in progress...
I thought this was a very nicely expressed and succinct summary of what I was trying to say before in my rambling way...and I have some further thoughts...so I'll ramble on again...
I answer this dilemma by focusing on the word 'trust' rather than 'believe'. You make the crucial point that the truth is not known with surety by anyone. Actually this is always the case, even in areas of science that are thought to be absolutely solidly nailed down. It's important to remember that science does not deal in truth and certainty and does not and can not deliver it. Scientific knowledge is always at least slightly uncertain and is always subject to further unexpected evolution - there is always an exception, a catch, just round the corner. So what I look for is people who are open and balanced and who don't close themselves off to even the strangest and most unexpected ideas.
Most of all, I look out for the human factors: compassion, decency, tolerance, openness - all the positive qualities that I would look for in other spheres of life when deciding who to trust. It isn't actually terribly difficult to untangle the fog when you view the question through this lens. We all know instinctively who our allies are, by observing their behaviour, and even if the nasty and dishonest guys may sometimes have a better handle on the actual truth of the matter and may sometimes be right, in a situation where everyone is uncertain and where it's important to ensure that all sides get a fair hearing, there's no harm done by lining up alongside the good guys and the underdogs, whilst keeping one's rational and critical faculties intact.
So that's my answer to it: it isn't a question of who to believe so much as it is a question of who deserves the greater benefit of the doubt, and who is behaving in a way that gives legitimate grounds to question their motivations and objectivity.
Nasty, devious, aggressive, arrogant, condescending, unempathetic and disrespectful people are likely to have spent their lives hanging around with people like themselves, and they are likely to be involved in enterprises that are tainted by that nastiness - and I do believe that any scientist's personal traits and biases are always going to run through their work - what they choose to work on, who they work for, and how they manipulate their results. So even though one would assume that all these human factors should be irrelevant to scientific truth, in an adversarial situation they do actually help tell you whose perspective you should be paying the closest attention towards.
"Spluttering incoherent rage and ad hominem attacks" can be a misleading guide though. Oppressed and powerless people are often driven into such states by the powerful when they calmly twist the truth and deceive the majority. Intransigent conservatism often frustrates the honest seekers of truth who are really working on behalf of suffering people. When Wessely jumps straight in and says "I don't think we'll find XMRV...pause...right, there you go, we didn't find it" then the spluttering incoherent rage and ad hominem attacks are a natural response. So great care is appropriate, when quack-detecting and crank-detecting, to avoid the risk of false positives and confirmation bias - witness the case of Dr Sarah Myhill, which will be heard in the High Court this week...
And to me, this political factor, this demonstrably weird response to our illness, is one of the biggest mysteries that remains to be explained. One might explain it through psychological, institutional, systemic factors rather than exposing a deliberate conspiracy to suppress ME/CFS sufferers, but it arises for me as one of the biggest issues that needs to be addressed in the future. Just what is it that has caused unexplained and novel illnesses like ours to be placed at the bottom of the priority pile rather than the top?
I remember all those early days when I sat in my doctor's surgery and realised that what I was describing was clearly not in the medical textbooks, and was therefore something new which might lead to significant scientific discoveries. I naively assumed - oh! how naive! - that after this persisted a few more years, at some point I would become the subject of intense interest from some of the country's top researchers - whisked away to some specialist centre where my bizarre and impossible symptoms would be investigated by those who were looking to push back the boundaries of human knowledge and proactively seeking to find and explain new and emerging diseases and new medical phenomena.
I had reckoned without the complacency and condescension of the medical world. That inability of the medical system to process anything strange or unknown, that capacity to ignore and even suppress what is inconvenient, is a question that will demand explanation and resolution, even after our own mystery is explained. We will all have a responsibility to ensure that what we have experienced should never again happen to the next generation - after MS, and then ME, the next medical mystery must not be written off as imaginary for decades while it spreads unchecked, and those suffering from it must be treated with at least the same respect afforded to those with recognised conditions.
I answer this dilemma by focusing on the word 'trust' rather than 'believe'. You make the crucial point that the truth is not known with surety by anyone. Actually this is always the case, even in areas of science that are thought to be absolutely solidly nailed down. It's important to remember that science does not deal in truth and certainty and does not and can not deliver it. Scientific knowledge is always at least slightly uncertain and is always subject to further unexpected evolution - there is always an exception, a catch, just round the corner. So what I look for is people who are open and balanced and who don't close themselves off to even the strangest and most unexpected ideas.
Most of all, I look out for the human factors: compassion, decency, tolerance, openness - all the positive qualities that I would look for in other spheres of life when deciding who to trust. It isn't actually terribly difficult to untangle the fog when you view the question through this lens. We all know instinctively who our allies are, by observing their behaviour, and even if the nasty and dishonest guys may sometimes have a better handle on the actual truth of the matter and may sometimes be right, in a situation where everyone is uncertain and where it's important to ensure that all sides get a fair hearing, there's no harm done by lining up alongside the good guys and the underdogs, whilst keeping one's rational and critical faculties intact.
So that's my answer to it: it isn't a question of who to believe so much as it is a question of who deserves the greater benefit of the doubt, and who is behaving in a way that gives legitimate grounds to question their motivations and objectivity.
Nasty, devious, aggressive, arrogant, condescending, unempathetic and disrespectful people are likely to have spent their lives hanging around with people like themselves, and they are likely to be involved in enterprises that are tainted by that nastiness - and I do believe that any scientist's personal traits and biases are always going to run through their work - what they choose to work on, who they work for, and how they manipulate their results. So even though one would assume that all these human factors should be irrelevant to scientific truth, in an adversarial situation they do actually help tell you whose perspective you should be paying the closest attention towards.
"Spluttering incoherent rage and ad hominem attacks" can be a misleading guide though. Oppressed and powerless people are often driven into such states by the powerful when they calmly twist the truth and deceive the majority. Intransigent conservatism often frustrates the honest seekers of truth who are really working on behalf of suffering people. When Wessely jumps straight in and says "I don't think we'll find XMRV...pause...right, there you go, we didn't find it" then the spluttering incoherent rage and ad hominem attacks are a natural response. So great care is appropriate, when quack-detecting and crank-detecting, to avoid the risk of false positives and confirmation bias - witness the case of Dr Sarah Myhill, which will be heard in the High Court this week...
And to me, this political factor, this demonstrably weird response to our illness, is one of the biggest mysteries that remains to be explained. One might explain it through psychological, institutional, systemic factors rather than exposing a deliberate conspiracy to suppress ME/CFS sufferers, but it arises for me as one of the biggest issues that needs to be addressed in the future. Just what is it that has caused unexplained and novel illnesses like ours to be placed at the bottom of the priority pile rather than the top?
I remember all those early days when I sat in my doctor's surgery and realised that what I was describing was clearly not in the medical textbooks, and was therefore something new which might lead to significant scientific discoveries. I naively assumed - oh! how naive! - that after this persisted a few more years, at some point I would become the subject of intense interest from some of the country's top researchers - whisked away to some specialist centre where my bizarre and impossible symptoms would be investigated by those who were looking to push back the boundaries of human knowledge and proactively seeking to find and explain new and emerging diseases and new medical phenomena.
I had reckoned without the complacency and condescension of the medical world. That inability of the medical system to process anything strange or unknown, that capacity to ignore and even suppress what is inconvenient, is a question that will demand explanation and resolution, even after our own mystery is explained. We will all have a responsibility to ensure that what we have experienced should never again happen to the next generation - after MS, and then ME, the next medical mystery must not be written off as imaginary for decades while it spreads unchecked, and those suffering from it must be treated with at least the same respect afforded to those with recognised conditions.