August 25, 2010


ME + me :  Good ME-news: Cort & Chas explain all (more or less)

As before, I continue being not well, but I have done some reading and checking of what's being said about and around the Lo/Alter paper (as seems the right way to summarily refer to it) and provide some links with some comments below.

Indeed, yesterday I produced a fairly extensive list of reviewed and quoted links, that still seem a fair sample to me and today I have some more in this context, namely links to articles by Cort Johnson (of Phoenix Rising) and Charles Shepherd (of the ME Association).

First where I left matters yesterday and the day before that, repeated because the first is a link to the Lo/Alter paper and the second a video from the WPI with Dr. Judy Mikovits providing clear explanations and comments:

Now to today's matters, which consist of links to two commentary and explanatory pieces, one by Cort Johnson and one by Charles Shepherd, both with some comments, indeed rather extensively in the last case.


1. "Four Viruses? The Alter XMRV Paper Arrives"
2. "

1. "Four Viruses? The Alter XMRV Paper Arrives"
      by Cort Johnson, on Phoenix Rising

This is a good paper (post, posting, text) by someone who, without being a medical doctor or scientist, knows a lot about ME/CFS and also a lot about XMRV, and who provides a good summary of many things that are involved in various ways, including a photo and description of the career of dr. Alter, who is scientifically far more prominent, far more lauded, and no doubt far more capable than professors Wessely and McClure or doctors Van der Meer and Van Kuppeveld.

I could have made quite a few comments, but then so did others, and as I said the paper (or post or posting) is good and readable.

      by Charles Shepherd, for the ME Association

I was sent dr. Charles Shepherd's paper by email this afternoon, and it seems - see the end of the piece - that one reason to do so, and one reason to put it today also on Phoenix Rising, is that "the technical guy" for the ME Association is having a holiday, implying there is no possibility to upload it to the website of the ME Association (recently renewed, to fairly good effect).

In any case, I can't find it there today, and this seems a good explanation. It probably will be there soon, and meanwhile I had written a number of notes to it, to help my correspondent, which I hear will repeat, since this may be helpful to others. And since I am my own technical guy, I can upload it to my site today, and did .

I will also reproduce the whole piece, with my notes interspersed. In case you want to read it without my interspered notes, here it is on Phoenix Rising - and here with my notes.

Let me make some initial clarifying remarks: I call dr. Shepherd "Chas", because he is named "Charles"; I am not out to get him verbally (really: if I were I would write differently), and indeed believe he did fairly well and means well. But then I do not agree with everything, either in content or mode of expression, and I publish this because others seem to like my comments. And finally, as the original of my text was an email, I have retained the tone that comes with that, and what you get is alternatively Charles Shepherd's text for the ME Association, and my own text speaking for me, with the former in bold black indented, and the latter not.


Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
Authors:  Shyh-Ching Lo (US Food and Drug Administration) et al
Published in the Proceedings of the National Academy of Sciences (PNAS) on August 23rd 2010.
Accompanying commentary by Valerie Courgnaud et al:  http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

I have not read the latter, but I did read the former.

Murine leukaemia viruses (MLV) are retroviruses known to cause cancer in certain mice. In 2006, investigators found that a type of MLV, called xenotropic murine leukaemia virus-related virus (XMRV), could potentially infect humans after finding it in tissue samples from men with prostate cancer.  XMRV is one of a number of MLVs that appear to be transmitted to humans.

This last statement is a worthwile point to make, in general, and because there are some problems with what has and has not been found, and in what terms to refer to what has been found. More below.

In October 2009,  Lombardi et al published the results of study in Science which contained evidence that XMRV was present in a high percentage (67%) of people with ME/CFS and in a small percentage of healthy controls.
Since then there has been a great deal of interest from researchers in a number of countries where ME/CFS is recognised.  A number of research groups have attempted (or are still attempting) to repeat these positive XMRV findings.  
Confirming or refuting new findings is a vital part of the scientific evaluation process and involves other independent research groups trying to either replicate or validate the results.
In relation to XMRV, a true replication study should involve exactly the same laboratory methods and same type of patients that were used in the original Science study.  A validation study gives scientists a degree of flexibility.  In particular, it provides the opportunity for other research groups to try and repeat the findings using what they feel are the most sensitive and accurate laboratory methods they have access to for testing for XMRV.

All correct, except that it is somewhat linguistic. It would have been nice to remark that some of the negative studies were NO good, neither as validation nor as replication, even if they were honest, which I very much doubt in the cases Wessely and Van der Meer were involved in, though - having seen pictures of Chas at a conference with Peter "Pinokkio" White and some other socalled "ME specialists" - my guess is that Chas will never publicly say such things until the proof has passed through several courts. (But then his role and position in ME-land is other than mine. And while Chas has ME, he is far healthier with it than I am, for I haven't been outside Amsterdam for many years, and indeed cannot frequent conferences, even if they were in Amsterdam.)

In the case of XMRV almost all of the first wave of research has involved validation studies.  Firstly, because there is no international agreement about the most accurate and sensitive way of detecting XMRV in blood samples. 

No. Since my reputation is other than Chas', one main reason why at least Van der Meer and Wessely would not do a replication study (and misrepresented what they did in fact), is that they very probably were out to do just what they had said beforehand to the media (!!) would be the result: Find nothing. (And since I read the Wessely/McClure BMJ-editorial, and made mincemeat out of it in March, Chas can take it from me, that was intentional fraudulent baloney.)

Secondly, because these research groups all wanted to move quickly,

Since Chas explains a lot - which is good, in principle - he should have explained why in this case haste would not make waste. Or to put it otherwise: It seems Chas is too eager to play the game of "We Are All Scientists Who Mean Well" with people he should by now know to be dishonest and to have done much harm to many patients. (But I do not have any diplomatic advice, and indeed true diplomats can deal diplomatically with people they despise.)

and the easiest way to do so was to use stored blood samples from people who had been diagnosed with CFS in the past according to Fukuda research criteria.  Stored blood samples from people who met both Fukuda and Canadian criteria (which were used in the original study) are not readily available.

OK, that's fair enough, and Komaroff - at Harvard, not in Canada - seems to have been the source, and the blood, at least in part, from 15 years ago.

Results from four emphatically negative validation studies of varying quality - three carried out in Europe and one carried out by the CDC in America - have now been published in scientific journals.  Results from a further (so far unpublished) study, carried out by Professor Brigette Huber,  were presented at the Invest in ME conference in May 2010 (report available on MEA website and in the August 2010 of ME Essential). 
None of these five research groups - which in the case of the UK included Professor John Gow, Dr Kate Bishop, Dr Jonathan Kerr and Dr Jonathan Stoye and used patient samples supplied by physicians and neurologists including Dr Abhijit Chaudhuri and Professor Peter Behan - have been able to find evidence of XMRV in blood samples from ME/CFS patients, or in the healthy controls.
Although some very valid criticisms have been made about all of the XMRV negative studies, in particular the most recently reported one from America, a number of distinguished virologists who work with retroviruses and XMRV have been involved - so these XMRV negative results have to be taken seriously as well.

OK. Again fair enough - and we wouldn't want to upset our medical colleagues, wouldn't we - but he might have mentioned Mikovits' explanation, that seems fair enough, and indeed ties in with his claim that people were making haste: The others used the wrong synthetic bait, so to speak.

On 23 August 2010 the results from the first follow up study to firmly support a link between a retroviral infection and ME/CFS were published.
This study is clearly an important contribution to the XMRV debate in that it fully supports a link between ME/CFS and retroviral infection.  In this respect it also supports the findings in the Lombardi paper.
However, it is not a true replication study, and in the words of the authors they have not attempted to fully replicate the Lombardi et al findings.

That's a bit misleading: To quote Alter, from a transcript of the press conference:

Dr Alter:
"We think, basically, it confirms the findings of the Whittemore-Peterson Group."

"It does, at least, confirm the findings of Whittemore-Peterson...I think one wants to go back to their studies because they've had more time, and they've done extensive work...so their study is more advanced than ours, but -with that as...er...with them having done the groundwork I think our study is highly confirmatory of their work...

Lo et al have used different laboratory methods and different patient criteria and their findings relate to what are called MLV-related viruses.
The research group have found segments of genetic material (not whole virus) from what they term a genetically diverse group of MLV-related viruses. These sequences are more closely related to those of polytropic mouse endogenous (=arising within or derived from the body) retroviruses than to those of XMRVs - hence the use of the term MLV (murine = mouse leukaemia virus) in the title.  But they all belong to a closely related family of retroviruses.

Yes, and in so far as I have been able to understand, if only the terminology had been just a bit different, "XMRV" might have been called "XMLRV" or "XMLV".

In contrast to the Lombardi et al study, which involved patients who met both Fukuda research criteria and Canadian Clinical Criteria for CFS, this research used stored blood samples from ME/CFS patients who had been diagnosed using either the 1988 Holmes research criteria or the 1994 Fukuda research criteria.  The patients were diagnosed with CFS from the mid 1990s onwards and most of the frozen blood samples were supplied by Professor Tony Komaroff at Harvard Medical School, Boston.  Professor Tony Komaroff is a well respected physician with a longstanding interest in ME/CFS.  In addition, 12 patient samples came from other US physicians whose diagnostic criteria for ME/CFS is not stated.

I don't know Tony like Chas does, of course, and I know of him only as "Anthony", and as older than myself. (And not anybody can call me "Marty", without my protest that is not my name - but OK: These are postmodern ways, that are widely practised.)

The numbers involved were surprisingly small for a study of this nature: 37 patients with CFS and 44 healthy controls.

Is that so? I don't know, but Tony and co. are not precisely secondraters or worse, like McClure and Van Kuppeveld are. I had no expectations about numbers, but did notice the Lo/Alter study was very clear as to methods used - which produces to my way of thinking a far more credible paper than one with a higher number but an unclear methodology.

The healthy control samples came from Washington DC blood donors recruited between 2003 and 2006.
So these results apply to a rather broader group of ME/CFS patients than was used in the Lombardi et al study and the patient sample is probably very similar to at least one of the other validation studies that produced negative findings in relation to XMRV.  As with some of the other validation studies, it is highly likely that a significant number of people who also meet Canadian Clinical Criteria will have been included in this study.

This is not precisely pellucidly clear. No doubt Chas' reason for his last claim is that, both in Lombardi et al and in Alter et al the patients' blood used was from mostly seriously ill persons.

MLV-like virus gag gene sequences (in simple terms segments of viral genetic material) were found in 32 out of 37 (86.5%) of the ME/CFS patients compared to only 3 out of 44 (6.8%) of the (blood donor) healthy controls.

Which is, in spite of the relatively small numbers, strong evidence that MLV/XMRV at least is associated with people with ME in a probabilistically highly significant way and that this fact does need explanation fairly urgently, in view of the seriousness of the disease ME/CFS and in view of the dangers of a bloodsupply that is contaminated with a human retrovirus. Also, it strongly supports the Lombardi findings.

Follow-up samples were collected from 8 of the CFS patients in 2010, and 7 of these again tested positive for MLV-like gene sequences.

I.o.w.: Just like the percentages in the original blood, suggesting a persisting association.

As already pointed out, the evidence in this paper relates to a genetically diverse group of MLV- related viruses with gene sequences that are more closely related to those of polytropic mouse endogenous retroviruses (mERVs) than to those of XMRV.  XMRV is a genetic variant of MLV-like viruses - so this is a subtle but relevant distinction.

I cannot say my semantical problems are resolved by this. And it seems to me Chas overlooks one relevant point: What these things - XMRV, MLV, mERVs - precisely are and do is contentious, so looking too closely at names is not where the real action is and will be, at least.

The authors point out that they have taken exhaustive steps to try and ensure that they have not produced false positive results as a result of mouse DNA contamination, or any of the other potential laboratory problems that come when working with retroviral infections.

It would have been justified if Chas had seen fit to memorize that (1) both the Dutch and the English psy-led BS'ers strongly suggested contamination from mice and that (2) dr. Alter c.s. are at least a few classes and levels better and more prominent than McClure or Van Kuppeveld, as are also their respective universities and their medical faculties.

The authors point out (p5) that the finding of XMRV or MLV genetic sequences in people with ME/CFS, or any other disease, does not constitute definite proof of viral infection.
They then go on to make it clear that further research will be required before any definite conclusion can be drawn as to whether MLV-related viruses play a role in the causation of ME/CFS.   This is a process that is going to take time and further research.

I am so glad Chas went to university! I really would have missed the last statement if I hadn't myself! (I take it he meant well, but then he should formulate a bit better.)

Also, it would have been nice if he had pronounced on what I read dr. Bell as saying about XMRV: That whereas he did not know - at that point in time, some half year ago - whether XMRV causes ME, at least a retrovirus could explain in principle many of the biomedical findings in pwME. And dr. Bell knows a lot about ME/CFS and is a practising MD since many years.

They also state (p6), as has been pointed out in previous MEA summaries on XMRV, that a high frequency of MLV-related viruses (or XMRV)  in ME/CFS patients could reflect an increased susceptibility to viral infections due to the underlying immune dysfunction found in ME/CFS rather than a primary disease causing role in the pathogenesis of ME/CFS.  In other words the retrovirus could just be there as a 'harmless passenger'.

True. But unless the knowledge of retroviruses in general is far less than it is touted to be, the likelihood is that a retrovirus does harm. What is true that there is no proof it does, and that this urgently needs to be investigated, and by capable and honest people also, and not by people with a personal financial interest in the disease, like Wessely (whose whole career is tied up with the medieval lies he has been telling for decades).

The MEA continues to believe that there is no point in spending very large sums of money on arranging blood tests, which may not have been properly validated, for XMRV (or MCVs) outside the UK. 

With this I agree, though clearly all adults are free, in principle, as to what they order by way of the internet. (But as I said before: It seems unwise to me to experiment with this if you have no reliable medical doctor you also trust to monitor you. And it also seems quite probale this will happen, probably especially in the USA, and there will be news about this, within a few months.)

Having a positive result is not, in our present state of knowledge, a diagnostic marker for ME/CFS.  Equally, having a negative result does not mean that you do not have ME/CFS.  Having a positive result will not affect ME/CFS management at present and if this information is inserted into medical records it could in due course cause problems with other health matters such as applications for insurance policies or travel abroad. 

This is all fair and sensible. I also believe that it would have been sensible to remark that if these tests do turn out to be diagnostic, in England they should go by way of the NHS, i.e. be free.

The way in which these viruses might be transmitted from person to person also remains uncertain and sexual transmission is one possibility - as in the case of HIV.  However, if this is a disease causing virus like HIV, sexual transmission appears very unlikely given the fact that ME/CFS appears to be very rare in sexual partners of people with ME/CFS, even after long periods of time.

Well... not with my ex and mine. And indeed, about half a year before meeting my ex I had sex with a woman who complained of having a strange disease related to fatigue. Finally, Chas might have thought of the involvement of a genetic disposition.

The MEA continues to believe that the current uncertainty over transmission of these viruses/viral segments means that people with a current or past history of ME/CFS should not be donating blood

OK: That's the right position.

and we have recently written to the acting Chief Medical Officer at the Department of Health to seek clarification on what appears to be a recent decision to extend the UK ban to people who have recovered from ME/CFS.  Copy of this correspondence:
We find it surprising that the American authorities responsible for blood safety have not followed the UK lead here.

I seem to remember the American authorities take the same view as the English, but I may misremember.

The authors of this paper make no comment or recommendations regarding the use of antiviral drugs.  However,  others (including the authors of the accompanying commentary) are now suggesting that it is time to assess the use of antiretroviral therapy (ART) in ME/CFS in some clinical trials.  It is well accepted that one way of examining the possible cause of a disease is to assess the response to specific forms of treatment.
The MEA has already pointed out on several occasions that this type of clinical trial would have to proceed with great care given the fact that ARTs can have serious side-effects. In the case of AZT, this drug can cause mitochondrial damage - which is obviously very relevant in ME/CFS.  But there are other ARTs becoming available that appear to be active against XMRV and may be much safer to use (eg reverse-transcriptase inhibitors such as tenofovir and emtracitabine).

OK - fair enough.

We have also pointed out that ARTs appear to have very limited effect in reducing fatigue in HIV/AIDS,

Fair enough, but not all pwME have "fatigue" as their main or most difficult symptom.

and that this may be due to the immune system activation that is occurring in this situation rather than any direct effect on reducing the viral load of the HIV infection.  So drugs that dampen down immune activity (eg a tumour necrosis factor inhibitor such as etanercept) may be a more appropriate route to follow.  More information at:
In the UK doctors are very unlikely to be willing to prescribe any type of antiviral treatment on an individual (ie non research) basis. 

As in "In the UK it rains more than in the Sahara"? I mean: A reason is needed, that indeed follows:

This is because the 2007 NICE guideline on ME/CFS specifically recommends that antiviral drugs should not be used to treat ME/CFS. 

But then these guidelines are both medically and morally seriously flawed.

And if anything goes wrong through the use of a potentially toxic antiviral drug, that is in effect banned by NICE, and has not been assessed in a proper clinical trial, the doctor responsible could face legal action even though the patient accepted the risk.

That explains in principle why doctors would rather not, and also why it may take longer to find an effective treatment, for many seriously ill persons.

Investigators at FDA, NIH, CDC and other scientific institutions are in the process of conducting studies to verify the capabilities of the tests used by the different laboratories for the detection of XMRV or MLV-related viruses in blood.  These studies are intended to develop and standardise a highly sensitive and specific XMRV test to better study its association with disease, as well as the possibility that XMRV can be transmitted to blood or tissue recipients.
The UK Medical Research Council's Expert Group on ME/CFS research (of which CS is a member)

Chas should have written out his initials here, I think.

has identified all aspects of viral infection in ME/CFS (including carefully targeted use of antiviral agents) as a priority item for further UK research and we expect that this recommendation will now be translated into action.

OK: That is good news.

The MEA is again making it clear to UK research groups with expertise in retrovirology, and access to reliable patient samples, that we would very much welcome good quality research applications relating to any aspect of XMRV or MLVs.  The MEA is also willing to consider co-funding research applications in this area.

OK: Again good. I'd exclude McClure though, for example.

We are in contact with most of the key UK researchers working on XMRV and we are also assisting with a small UK study that is intending to retest people who already have a positive XMRV result as a result of having this test done in America.


We also need to find out how common these new retroviruses are in people with other chronic disabling conditions, especially those that involve immune system dysfunction.

True, and a good point, although it has undoubtedly not only struck Chas and me.

In America, the paper has been quite widely reported with most of the coverage being supportive.  In the UK there has been very little interest in the press release - apart from the Daily Mail (which carried an on-line story) and the New Scientist >> http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html which includes quotes from Professor Myra McClure, one of the UK virologists involved in a negative validation study.

True, and a curious fact. One possible explanation is that Wessely and co may have asked or insisted on not publishing because then the editors would help the ME-patients to think themselves sick. I'd love to have that in writing or on tape. (If one believes that one is fit for sectioning, not for journalism, and one certainly betrays one's journalist duties, as Wessely betrays his medical duties since decades. (*))

 Lack of coverage in the UK is partly because selected health journalists, who might have reported the story, like to have access to a new research paper well before the information enters the public domain - so they have a day or two to chase around and obtain informed comment on the story. 

OK - that's a possible explanation. But I bet Chas doesn't know much more about journalists than I do, and quite possibly I know more than he does, having worked for a daily paper and indeed having published in it in 1971. (As often, it caused a lot of fuss.)

Health reporters have finished writing their copy for the next days paper well before 8pm in the evening

Does Chas have a tame reporter (f), on the rocks?

- so unless there is a real breakthrough news item they are not at their desks in the evening. The US press conference at 8pm UK time did not fit in with their working arrangements for printing something on Tuesday and the findings would be 'old news' by Wednesday.  In addition, they also had a good headline health scare story for Tuesday morning relating to people being refused an anti-cancer drug due to a NICE ruling.  
Unfortunately, there are health correspondents that I speak to on the more influential papers and journals who are now very cautious about covering ME/CFS stories.

OK, but I hope Chas points out to them, when needed, that real journalists try to report the truth rather than be friends with authorities, medical doctors or patients.

In very simple terms the clinical and scientific community regards published papers rather like goals (of varying quality) in a football match.  So the current score is XMRV and MLV positive 2 (with a spectacular first goal!): XMRV negative 4 (of varying quality) with plenty of time left before the final score. 

We don't all have an IQ <= 115.

The comments so far that I have read, or been given, by experts in this area of virology indicate that everything has been done correctly in this study and that this is a sound piece of laboratory research. 

True, and Chas might have been - should have been, I think - more upbeat about dr. Alter's excellencies.

However, with differing results from differing well respected retroviral laboratories, the clinical and scientific community is likely remain uncertain or sceptical about the link between retroviral infection and ME/CFS.

OK, and fair enough up to a point. The other side holds too, though: There is a very interesting correlation between something much like a retrovirus and pwME, and in principle this could explain many of the symptoms associated with ME. And that correlation better be regarded as established, though its precise import still needs to be established.

Another analogy is fitting pieces into a jigsaw puzzle with a lot of blue sky.  We now have six pieces (ie published papers of varying quality) in place and some strong opinions on either side.  But a lot of pieces have still to be fitted into the picture. 

We don't all have an IQ <= 85. (**) And the usage of inept metaphors and analogies is a fallacy. (Just one sighting of a predicted comet at a predicted place is often sufficient to prove both its existence and its path, or at least change both from very low to very high probability. That is also not a childish analogy, but a piece of maths (look under "Bayesian Conditionalization" on the internet).

Overall, there is no sign of any real scientific consensus emerging as to whether XMRV and/or MLVs are playing a significant role in ME/CFS and many key questions regarding prevalence, transmission and pathogenesis remain unanswered.  

True. But so is the approximate opposite: Many who are qualified - such as dr. Alter, surely more qualified in this matter than dr. Wessely or even dr. Chas - seem so believe the probability is that it will play "a significant role in ME/CFS ".  In any case: There is sufficient reason to insist that the matter be investigated thoroughly.

Things may become a bit clearer as a result on the international meeting on XMRV in September, which will include a session on ME/CFS.  Proposals for further research may also emerge after this meeting.

True. Indeed, if the good reports I read are correct - notably prof. Kurtz - much may have been clarified by December.

This uncertainty and scientific disagreement seems likely to continue until well into 2011 and the current findings are unlikely to have any significant influence on the forthcoming review of the NICE guideline or the increasingly difficult position faced by people with ME/CFS in relation to sickness and disability benefits.

Possibly/probaby, and a fair and due point.

[Our most recent correspondence on 24 August from NICE indicates that they have still to decide on the date at which the review will take place, whether it will be a full review - which could take up to a year, or whether they might delay the review to await the results of further research from clinical trials.

The sentence starts with an unmatched "[". It might have been pointed out that NICE has no rights to try to delay reviews, in view of the fact that it is lousy to start with.

More top quality research is clearly needed here in the UK and the MEA is very willing to consider funding it.

True in principle and noble in principle, but my guess is that the main research will take place in the US. Also, it may well be feared that good and honest researchers in England will be frightened off by the powerful Wessely and Gerada team (***), who seem to have their fingers in much they should not.

FDA Question and Answer on the paper: http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm
Answers to the final three questions, which are of importance to US readers:
9.  Does FDA agree with the AABB recommendation to discourage donation by people with history of CFS?

FDA does not object to the AABB recommendation.  The AABB recommendation is consistent with a long-standing position of the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America that individuals with CFS voluntarily should not donate blood.

See above.

10. How are the differences between the CDC and FDA study results being evaluated?

Differences in the results could reflect differences in the patient populations that provided the samples.  Alternatively, undefined differences in the method of sample preparation could be contributing to the discordant test results.  All of the scientists involved are working collaboratively to design experiments to quickly answer this scientifically puzzling question. 

Nah. That's just too much spin. ("All"? "collaboratively"? As in a sovchoz? Some having implied the others are nuts or liars?)

An independent investigator at the National Heart, Lung, and Blood Institute (NHLBI) set up a test set of 36 samples, including known positives and presumed negatives.  Both the FDA/NIH and CDC labs participated in this test, and the results showed that both labs were able to detect XMRV present at low levels in blinded samples.  Additionally, the CDC laboratory provided 82 samples from their published negative study to FDA, who tested the samples blindly.  Initial analysis shows that the FDA test results are generally consistent with CDC, with no XMRV-positive results in the CFS samples CDC provided (34 samples were tested, 31 were negative, 3 were indeterminate).

Suggesting the sample of the CDC is from another population.

11. What do these findings mean to CFS patients and clinicians who treat them?

Although this study found MLV-like viral gene sequences in a high percentage of CFS patients, this does not prove that these retroviruses are the cause of CFS or of any other disease.  Moreover, other studies have not found evidence of such retroviruses in patients with CFS.  Further studies are necessary to determine if XMRV or other MLV-like viruses are reproducibly associated with CFS, and if so whether the virus is a causative agent or a harmless co-traveler. 

Or a cofactor, if we are going to list logical possibilities (as in "a sine qua non, but not a cause" or as in "an amplifier but not a cause").

The different findings from various studies reinforce the need for more research--including careful analysis of other cohorts of CFS patients from different geographic regions, studies of larger populations of healthy people, and testing of transmissibility of the agents through blood transfusions in animal models.   FDA, NIH, and CDC have and will continue to collaborate with other agencies and groups involved in this research.

Again too much spin or careless copying: As I read it, the Lo/Alter paper is in part written the way it was to protect the CDC, as indeed may be expected in one governmental institution criticizing anothers' findings. (They don't want to rock the institutional boat.)

An independent investigator at the National Heart, Lung, and Blood Institute (NHLBI) set up a test set of 36 samples, including known positives and presumed negatives.  Both the FDA/NIH and CDC labs participated in this test, and the results showed that both labs were able to detect XMRV present at low levels in blinded samples.  Additionally, the CDC laboratory provided 82 samples from their published negative study to FDA, who tested the samples blindly.  Initial analysis shows that the FDA test results are generally consistent with CDC, with no XMRV-positive results in the CFS samples CDC provided (34 samples were tested, 31 were negative, 3 were indeterminate).
Summary prepared by Dr Charles Shepherd
Hon Medical Adviser, MEA
NB:  There will be a delay in placing this item on the MEA website because our webmaster is away on holiday for the next few days.
25 August 2010

P.S.  Let me point out for those who do not know that I have an MA in psychology, and a BA in philosophy, and that I am - I believe - older than dr. Charles Shepherd.

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.


As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

(*) I have been told, by people who have met prof. Wessely that he has a charming patter and presentation of self. Acccordingly, he may take in many. What I have seen and heard in videos of him does not suggest he is a strong character or a really able talker. But then it is rarely or never the best or indeed the good who do the worst and the bad.

(**) Notably, I don't. It's not even as deeply fallen as the current Dutch academic norm for Dutch academic excellence! And yes... I am well aware that dr. Shepherd writes for a variegated public, certainly not all or mostly  geeks, but on the other hand he does try to explain fairly complicated matters, and in such a case I find it myself a bit irritating to be talked at as if I am hardly capable of rational thought.

(***) A man-wife team, that has elbowed and manoeuvered itself in several top positions in the English medical world, for no intellectual or moral reason whatsoever that I can see - if a high intelligence, real honesty, and a high morality are the principles by which in England medical persons are given power, status or influence, for I have seen none of any of that in the Wesselys.

Maarten Maartensz

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