Who can I 'trust' on HGRV without understanding every detail myself?

Today I'm posting a bunch of comments I've been working on for weeks. This is my first blog post, which I'm using to post a large comment here rather than bloat up a forum thread.

For two years I have been mostly fence sitting on the XMRV/HGRV issue, I was not willing to devote too much time and effort into understanding it until the science was more established, because it may have not panned out and I had to focus on other aspects of ME/CFS instead. So XMRV turned out to be recombinant contamination and there are still some unanswered questions regarding HGRV? I'm still open to new developments, but many of us for whatever reason do not follow the science in great detail and we can see from our limited understanding that the situation is not looking too good in general, and I doubt it is all just politics or incompetence. It also seems that even the professional critics are still allowing the possibility of another (non-MLV related) retrovirus in ME/CFS.

As for "gelslidegate", when I looked at the slide from Jamie's blog and the original graphic from the 2009 Science paper, the two images in question looked essentially identical to me, all the same noise pattern etc, which is supposedly highly unlikely to occur by chance. I have experience with image manipulation but I'm not a virologist so I was waiting for further details to unfold, I was open to an alternative explanations like a sloppy mistake. Ruscetti later confirmed that they are the same images afterall, but there was a labelling error he attributed to "pressure" and patient codes having been changed since then. Another remaining issue is the azacytidine. I'll wait for what the Science journal has to say after completion of their investigation.

I don't feel any particular loyalty to WPI or Mikovits etc, but I wanted them to have a fair go. Screams of "FRAUD!!!" from the peanut gallery do seem premature at this stage (Oct 2011). Some people have wondered why others in the ME/CFS community have suddenly "turned" against the WPI and/or Mikovits in general, but as far as I can see it goes beyond that, we also have the BWG results, questions about the accuracy of VIPdx commercial testing, the partial retraction of the 2009 Science paper, the firing of Mikovits, the pending investigation by Science, not to mention the mounting (but still circumstantial?) evidence of contamination in the original paper. Feel free to accuse me of being ignorant about the reality of HGRV, I don't have the capacity right now to investigate every single claim from both sides.

[EDIT: I won't significantly alter the blog text, but I have since looked into the issue further and have become more suspicious about it, but I need to look further and won't make judgements when there are details about the situation still pending. See this post: http://forums.phoenixrising.me/show...mbardi-2009...&p=214217&viewfull=1#post214217]

I don't really want my money back from the WPI though, I donated to help speed along the outcome, whatever that is. I thought I would be disappointed for the ME/CFS community if XMRV and HGRV turned out to be a dead end, but the whole saga has raised the profile of ME/CFS in some way or at least help put it in the spotlight. We have more mainstream scientists interested in ME/CFS now, which is encouraging but still not happening fast enough. Anyway, however, then there is the issue of what Cort and others have mentioned, an unknown degree of losing researcher interest (of which some is probably hearsay and/or the result of self-fulfilling hearsay).

[EDIT: A lot has happened in the years since I wrote this post. Serious concerns have been raised about the WPI. I do want my money back now!]

Ecoclimber claims that "prominent retrovirologists" have judged the entire ME/CFS community on the alleged negative behaviour of a few individuals. These researchers sound a little judgemental then, although harassment and threats are serious so it is understandable why some are quite concerned. However, we as a community we have seen too many accusations of harassment without much evidence, along with the potentially libelous conflation of legitimate critique with criminal activities, although I tend to believe some questionable harassment is probably occurring because it is common on the internet these days and ME/CFS is no guarantee of sainthood..

Back to the existence of HGRV, on one hand we have proponents churning out arguments to support the existence of HGRV, and on the other hand a crowd of skeptics claiming all these are just bullshit borne from the Dunning-Kruger effect. I wouldn't be surprised either way really, I do not know whether the proponents are a reliable source of information, but solid arguments are just as important as qualifications. At the same time, a lot of supposed skeptics seem to make up assfacts whenever ME/CFS is discussed and I doubt many of them are generally more informed about cutting edge retrovirology than they are about more established aspects of ME/CFS research which they apparently don't seem to have much understanding of either. This of course doesn't take into account qualified scientists who may be commenting on the slide issue. I guess the BWG Q&A on Phase III would be a good starting point?

"Trust" is in short supply in the ME/CFS community when it comes to the medical establishment and controversial issues, so who do or can I trust? Unless individuals are willing to confirm and understand every detail for ourselves, either we can't comment on the situation with much confidence or at some stage we must commit an appeal to authority. I think that if the Lipkin study has taken aboard all that we have learned recently and still doesn't find an association with HGRV and ME/CFS, then as far as I'm concerned it is basically over for HGRV, not that I wouldn't be open to new evidence of course. But who is willing to bet their livelihoods that there is no HGRV in CFS? Suppose some of us start a family soon and it turned out that our partners or children just happened to become infected with HGRV and became ill years later, who would be responsible if we took the advice that HGRV doesn't exist in ME/CFS?

Like others I'm desperate for answers and HGRV is a simple hypothesis which could potentially tie together the unexplained abnormal findings in ME/CFS, but unless it is easy enough to treat, frankly I don't want to have a retrovirus and part of me would be glad if HGRV was a dead-end, originally having an OK tolerance I've become sensitive to medications and have seen my health decline because of them, so the thought of taking more serious and expensive drugs with the possibility of risking what limited function and quality of life I have remaining is frightening.
Likes: MeSci

Comments

Hi biophile, from a scientific standpoint don't trust anyone. The process sorts itself out in time, but that can be a long time if the wrong theory becomes dominant. This is not about trusting individuals. This is about patience for those things that take time like research, and advocacy for those things we can do something about. That includes more funding for research - all biomedical research into ME and CFS. Bye, Alex

Edited: yes you can edit blog posts. I am not sure you can edit an original blog starting post after some time has passed however.
 
Great article. You have articulated much of what I feel and wonder. I hope that researchers continue on even if Lipkin doesn't find anything though.

I no longer "trust" the scientific process to sort it all out. I've learned it is also about politics and media coverage to me. The media has been partisan around XMRV research in my opinion and that has played a big part in ruining my trust.
 
Hi markmc20001, politics can indeed lead to dominance in science of the wrong theory. In time it will get sorted, as an incorrect theory should eventually show it is inadequate. This can however take decades, time which I do not have.

I am not sure that media is biased against XMRV so much as against anything that contradicts their pet views about ME and CFS, of which XMRV is just one issue. Very few journalists bother to do enough research to form a sound opinion about anything ME related. There is definitely a co-ordinated media spin in the UK though, but for the most part the UK media appear to be duped by it not orchestrating it. So they are instrumental in spreading the spin, but are not themselves the source for the most part (trolls masquerading as journalists are of course the exception, here we call them shock jocks when they are on talk back radio).

This is not a simple thing, even if HGRVs are ultimately shown to be the cause. We don't even fully understand the common cold. How about MS or type 2 diabetes? Once a cause is identified we can expect a succession of new and better treatments over time. An eventual cure is likely but nobody can predict when that will be even after we have a cause.

Bye
Alex
 
I'm neither stupid nor ignorant, but I still can't make much sense out of anything regarding this illness. I can't even figure out if ME and CFS are two acronyms for the same disease, or if they are supposed to be two different diseases!

Meanwhile, it is clear to me that most 'scientific research' is just plain junk designed to consume grant money. A few minutes scanning abstracts in the NIH database will confirm what a waste most of it is. I have yet to see a study that doesn't end with, "Our conclusion is that more research [money] is needed."

At the same time we have all these doctors promoting pills and procedures based on junk research trumpeted by the mass media, while the research showing the snake oil does more harm than good is buried. Is there no end to the corruption in this so-called 'civilization'?

I have been assigned to yet another new primary care MD in two weeks, after I specifically asked for a nurse practicitioner by name. I was told I couldn't see an FNP because the last provider I saw was medical doctor, who told me all I need is a therapist and exercise.

Do I really want to drive 70 miles round trip to see another useless MD, or should I just stay home and wave a magic wand?

Alex wrote, "An eventual cure is likely..." Really? How many chronic diseases have cures? There's not near as much profit in actually curing disease as there is in treatment regimes that continue until every last nickel is squeezed out of the patient, preferably until their last breath.
 
Hi Jimels, chronic diseases frequently involve complex biochemical interactions. The proteome research is still early days, even the genomic research is still early days. A cure is almost certain, not just likely, baring a fall of civilization, but I can't tell you if it will be five, twenty or a hundred years. Treatment on the other hand exists now, some of it moderately effective for a subset of patients. That is the real problem, all treatments so far only work on subsets. Antivirals seem to have the largest subset for those defined under Fukuda or stronger definitions.

We still do not understand type 2 diabetes, and CFS or ME often have this or insulin resistance as a complication. Molecular disease research was delayed by lack of appropriate technology. Without PCR and computers plus all the automated lab systems that now exist, all research was slow and manual. This automation revolution is only just starting, but I think it mostly traces back to the mid to late 80s - so it still has not reached maximum effectiveness, all of it is still more or less new.

As to chronic diseases that have been cured, many pathogen induced chronic illnesses are indeed curable such as tuberculosis. The cure follows research based on the cause. Without a cause nobody knows what to research. If some pathogen is shown to be a cause, then research can begin toward a cure. If on the other hand the pathogen is a trigger, or the illness is purely biochemical, then the biochemistry has to be understood first for a cure unless we get lucky. This is not easy, and takes time. Its one reason why finding a single pathogen cause would be great, we will get to a cure faster. On the other hand, even without a full understanding of the pathophysiology we can still develop treatments. The success rate of some treatments is very high now, typically antivirals. Most patients respond and slowly improve. Look at Lerner's research, and Montoya. Most doctors dismiss it or are ignorant of it however as the studies are small and underpowered, due to lack of funds mostly.

Your point about funding issues with chronic disease I mostly agree with. Research funding on less fatal chronic disease is tiny in comparison with fatal diseases, and CFS or ME are at the bottom of the list. However this applies to treatments as well as understanding physiology or developing cures. Drug companies mostly fund drug therapies. They can't do that until someone finds a physiological basis to develop a drug, and that research is usually in the public sector, including universities. Public sector research funding is way too small, it has no social priority. So society complains about more and more disabled causing costs to government, but massively underfunds research into the physiology of the chronic conditions that are costing so much money. This is social insanity in my view. Private industy has almost no incentive to research the basic science, it has to be patient or government driven. Once the basic science is done and shows a target for the drug companies, they then pour money into drug development.

On CFS, its a superset that includes ME. ME itself might be a set consisting of at least two different diseases. You can't figure out the relationship because the science is not done yet to show definitively what that is. CFS under most definitions is multiple diseases with similar symptoms in my opinion. ME is probably one disease with two or three subtypes, but it might be that the physiology subtypes represent different but similar diseases.

ME and CFS research funding is miniscule. Most studies are tiny and limited, because funds are limited. So it all progresses very slowly. As we understand more of the physiology of ME and CFS, we will be able to target even limited funds better and better, and so the research will accelerate. This is already happening in my view, but there is still a long way to go. However, a primary task of advocacy is to promote research funding. Things move slowly. Without funding things move so slowly that glaciers look like Speedy Gonzales.

Bye
Alex
 

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