Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

[V99]

I now see the 'even if it does', no you were just speculating.

 

[cfs since 1998]

Even if it does- it is not a cause.

Not understanding the "it is not a cause" part. I thought the consensus was that we don't know for sure, so how can you say it is not?

Yeah- and he just admitted that the case for contamination is now much less likely. That is part of why he came today.

[A]t this point there are at least two other hypotheses that are equally likely for this virus: that XMRV is a lab artifact, or that it's a bystander.

Giving the three hypotheses equal weight is ridiculous when one considers all the evidence.

I know this kind of uncertainty isn't what people here want. It's not what I want, either. But I also don't want people leaping to conclusions, then using those conclusions to justify taking toxic chemicals and experimental therapies that could do more harm than good.

Before accusing the patient community of fallacious and faulty logic one should note the accompanying commentary in PNAS suggesting starting antiretroviral trials in CFS right now.

Alan is ignorant of the history of CFS, is unwilling to learn about it, and is smugly and self-righteously telling us that we aren't capable of having an informed opinion or making predictions about where the research will lead.

 

[Recovery Soon]

Outsiders (for want of a better word) sometimes assume that we are mostly interested in the psych/organic issue. The truth is that what we really want is research, into all aspects. The obsession with continually studying the brain/mind has diverted attention away from other crucial aspects of the disease. So much is being missed and so much time is being lost focussing on one area. Since when was this a good model for any disease. All we get is CBT and GET studies, with slight tweaks here and there, with no use of objective outcome measures and little honesty in their interpretation.

We get it, V99. You've already won the crowd with the psych argument. So, the next time we have this discussion with "outsiders" we need to educate them in a way that invites more discussion, and doesn't antagonize them when they are trying to build bridges with us.

 

[V99]

Let's walk through this a bit. Alan has come here to try and get us to understand him and so he can understand us. Fair enough. He is obviously puzzled by the reaction he had on his blog. That all makes sense, right.

If Alan were here now I would want him to realise that the reactions that can be displayed by patients has nothing to do with XMRV, that's irrelevant, and it has nothing to do with mental health problems, that's also irrelevant. It's about patients being ignored, it's about expert doctors being ignored, its about the science being ignored. We don't want any biomedical research into thus disease to be abandoned any more. And that is the part which is difficult to grasp, because it requires you to have knowledge on the history of this disease.

 

[V99]

We get it, V99. You've already won the crowd with the psych argument. So, the next time we have this discussion with "outsiders" we need to educate them in a way that invites more discussion, and doesn't antagonize them when they are trying to build bridges with us.

You see antagonism everywhere.

 

[Recovery Soon]

The lab artifact hypothesis is certainly getting less likely, but it still hasn't been eliminated.

You forgot to add the entire quote following the underlined "equally." I think it's clear he is retracting his position in light of the new findings.

Not understanding the "it is not a cause" part. I thought the consensus was that we don't know for sure, so how can you say it is not?

Giving the three hypotheses equal weight is ridiculous when one considers all the evidence.

Alan is ignorant of the history of CFS, is unwilling to learn about it, and is smugly and self-righteously telling us that we aren't capable of having an informed opinion or making predictions about where the research will lead.

1) Are we playing semantics here or what? Of course it MIGHT be the cause. But right now we don't KNOW that it is the cause- hence my wording. Sorry for the shorthand.
2) Smug, self-righteous are all judgment calls that don't seem appropriate in characterizing today's attempt to build bridges. Nor did he suggest you are not capable of making predictions, or are a fool, are crazy, etc...

He came to mend fences, stated his position, and left when attacked.

This is turning into silly season.

 

[Recovery Soon]

You see antagonism everywhere.

And you don't see it anywhere. Maybe one of us is wrong?

 

[cfs since 1998]

Similarities between HIV/AIDS and ME/CFS:

impaired cellular immunity and TH2 dominance
abnormal T cell subset ratios
yeast infections/thrush
herpes virus reactivation
isolation of the rare "A" variant of HHV-6
other opportunistic infections
muscle weakness
malaise
weight loss
chronic diarrhea
fever
swollen lymph nodes
night sweats
low intracellular glutathione
peripheral neuropathy
encephalitis
heightened sensitivy to stimuli
brain lesions
impaired concentration and memory
chronic inflammation
lymphoma

 

[cfs since 1998]

He came to mend fences, stated his position, and left when attacked.

I don't think so. He spent 5 paragraphs explaining to us that we don't know yet whether XMRV causes CFS, which we said we already knew. Obviously he came to "educate" what he sees as a bunch of emotional scientific illiterates incapable of thinking for themselves. He even said so himself (we are emotional and don't know how science works, he said).

 

[Recovery Soon]

Obviously he came to "educate" what he sees as a bunch of emotional scientific illiterates incapable of thinking for themselves.

His wife may be a psychologist- but you're playing one. That characterization of his motivations today is a ten story logical leap.

And those quotes around the word "educate" falsely imply that he said that, which he didn't. This is the second disingenuous quote you've used in the last 3 posts.

 

[urbantravels]

Well, this stopped being fun quite a while before it started being fun.

 

[cfs since 1998]

His wife may be a psychologist- but you're playing one. That characterization of his motivations today is a ten story logical leap.

He said patients are emotional and don't know how science works on TWIV. It is not my leap, they are his words.

And those quotes around the word "educate" falsely imply that he said that, which he didn't. This is the second disingenuous quote you've used in the last 3 posts.

http://en.wikipedia.org/wiki/Scare_quotes

 

[Recovery Soon]

Well, this stopped being fun quite a while before it started being fun.

Scare Quotes aren't fun? C'mon now!

He said patients are emotional and don't know how science works on TWIV. It is not my leap, they are his words.

We're talking about TODAY'S post where he reached out and ate some crow.

 

[biophile]

When I first got sick, I even entertained the notion that I might just be suffering some somatic form of repressed issues - not because I'd heard much about that theory or had it pushed on me by any doctors - just because I wanted to be open to all possibilities of something TREATABLE. Well, I'm working hard on my emotional issues, with some success I think. Anybody at all can use help dealing with the emotional/psychological side of dealing with this devastating illness and all the ways it diminishes your ability to have a "normal" life. To me, there's no question that being emotionally upset makes coping with the disease much harder and to some extent exacerbates the physical symptoms - but I'm also very clear at this point that an improved emotional state, and dealing very clearly and openly with the emotional problems that I do have, doesn't do a thing for my physical disease. I still get flare-ups, bad days, PEM when my state of mind is good (or as good as it gets in the context of how much it sucks to be sick and disabled.)

Yes, good point. There are many stories like yours and mine, where patients were open to psychological factors because they also developed symptoms of anxiety or depression and noticed how mental-emotional states can worsen their physical and (neuro)cognitive symptoms, but then resolution or alleviation of said psychological disturbances did nothing to resolve the underlying condition itself. By the time I was first diagnosed I was OK with the notion of a functional somatic syndrome with psychiatric overlap, something which would resolve over time with exercise and positive thinking. I tried to live my life with that assumption, and I paid a heavy price for such ignorance. Then of course we get patients who report that they had a full recovery after resolving their psychological disturbances. Either they were extremely fortunate, have some special superpowers we don't have (many seem to like to think they do), or they simply didn't have the same condition.

Well, now I guess I know where the big crowds of commenters are coming from whenever I post a blog item about CFS. First, I'd like to thank everyone, or at least almost everyone, for reading and commenting. It's the most feedback I've gotten in the history of my personal blog. [...] <snip>

The outbursts from patients on the blog were totally understandable, irrespective of whether they were appropriate and the best way to get results. Earlier I said that Alan had appeared to close down further learning on the subject and that this wasn't a good sign. Due credit to Alan for coming on here and trying to explain himself on our own turf, this is a good sign IMO, regardless how the conversation goes. Other posters have already made some good points that need addressing.

The crux of the anger Alan is that patients are commonly denigrated and neglected because other people assume the symptoms are "functional" and psychogenic. First, it's like if people were abused for 25+ years in the name of X, it doesn't matter if believing in X is helpful or not, saying "you need X in your life" is going to generate a negative response. Second, using this analogy further on CFS, we have good reason to doubt the impact that X will have on our life and suspicious of those who promote X.

Yes, mental illness is real too and the stigma is unfortunate. Yes, psychological factors seemingly exist for organic diseases too. Yes, rational skepticism is useful. But surrounding CFS there is also what some on this forum have referred to as "reams of psychobabble". The biomedical research is subject to heavy skepticism by default while the frequently flawed psychological research usually goes unchallenged and related speculation is presented as established fact. Double-standards are extremely irritating.

To many, the fields of psychology and psychiatry are more art than science (yes, artists can use science and technology to paint on the canvas). The patient realises that their poor treatment stems from prejudices present in the general public and the health care system, then sooner or later traces much of the psychobabble back to psychologists and psychiatrists, who often appear oblivious to or rarely take responsibility for past mistakes or the impact their claims have on how patients are treated.

During a lack of evidence we can tentatively look towards trends. The trend is, retroviruses cause disease, and chronic illnesses dominated by physical symptoms which are initially judged psychogenic or psychosomatic end up being better explained more in terms of organic pathophysiology. On the other hand it could be argued that the "trend" in CFS is for biomedical research to offer clues but no solid answers. However, many of these clues are seemingly ignored, and throughout history it has always been a hell of a lot easier to paint hypothetical psychological mechanisms for illness than it has been to demonstrate organic pathology of disease using then current standard technologies (and minimal funding).

 

[Wayne]

Second, I'd like to tone this discussion down a few notches.

Thanks for stopping by Alan and making an honest effort to tone down the discussion. I replied to your earlier blog, mentioning I didn't like your tone and thought your writing displayed a fairly contemptuous attitude towards us. I have to say that I don't feel that way about your post here. I thought it showed a lot more sincerity and respect, and I for one appreciate that very much. It feels like you've done about a 175 degree about face from that earlier blog.

Your post here was much more focused on highlighting what you feel to be some of the physical components of this illness. This was refreshing for me (and I suspect most of us) to hear. I believe I understand where you're coming from when you state your views about the way psychiatric illness is generally regarded. And I have to say that I generally agree with your perspectives.

What I think is important for you to understand is that the ME/CFS community has been badly abused by psychologizers and the psychiatric profession for the last quarter of a century or so. If you were to take the time to research some of this abuse, I think you would be absolutely appalled (as would your wife), and you would have a far greater understanding of why many of us have very little patience towards these perpetrators.

To give you just one example, look at this study done by the CDC, "Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study". ME/CFS has had such precious little funding for the past 25 years, and this is the kind of garbage they are spending these limited resources on.

Alan, welcome to this forum. My sincere desire is that you take some time to explore some of the threads here, get a better understanding of this disease, and probably most importantly, get to know some of the people with ME/CFS who visit here frequently. I think you will find many here to have some pretty heroic qualities.

They deal with a chronic, debilitating disease that is considered psychological by the majority of friends, family, doctors, co-workers, etc. This dynamic has created enormous loss for most of them in some manner or another. In short, ME/CFS has upended their lives in almost unimaginable ways, and yet they somehow manage to carry on with courage, resiliency and even humor. I myself find it inspiring to read some of the accounts posted here, and I think you would too.

Thanks again for stopping by. I welcome your participation here at any time.

Best Regards, Wayne

 

[jace]

The Alter paper is very interesting and very thorough, (...) However, the retroviruses the patients are infected with in that study aren't XMRV. So how could XMRV be causing CFS, if the CFS patients in that study aren't infected with XMRV? Yes, the "murine-like retroviruses" Alter finds are very similar to XMRV, but they're not the same. As an analogy, chicken pox and genital herpes are caused by very similar viruses, but their medical consequences are very different. When it comes to viruses, differences matter.

Someone explained it to me thus. MLV is to XMRV as Dog is to Terrier. We are in the early stages of detailed research of this species (if species is the right word) of retroviruses, the third species of human retroviruses to be uncovered. The others are HTLV1 and HTLV2 and HIV 1 & 2 - note the two main sub-groups in each species.

I wonder if you will read this far, Alan Dove. If you do, I hope you see beyond the prejudices that your post here revealed. People with ME/CFS necessarily know a lot about this disease and many of the outgoing and intelligent personality types that are found on boards like this spend a large proportion of their available psychic energy researching and reading everything they can find to hunt for a way out of what is an awful illness, with physical symptoms equal to advanced Multiple Sclerosis and AIDS two months before death.

The other unique information we ME/CFS sufferers have is the inside knowledge that our bodies give us. Many ME sufferers (I give up on the CFS nonsense) are highly educated professionals, scientists and doctors of medicine and psychology. I have met many such on these boards.

The infection, if it proves to be such, is spreading. 3 - 7% of the general population - one study found 10% - infected with this family of retroviruses. You could get this. You would not like it. Your life expectancy would be reduced by 25 years. Your risk of contracting certain sarcomas would increase a whole power of magnitude. You would always (if you are like me) have a noise in your head that made it hard to hear normal speech. And many other distressing physical symptoms. Your heart would begin to fail. Heart disease is often what kills us. All ME patients investigated in one study had severe heart defects.

Hey ho the wind and the rain. Roll on clinical trials - HAART trials, properly conceived and supervised - we want them now. The results of such trials is what will prove or disprove causation - that's how it worked with HIV AIDS.

 

[RustyJ]

Before accusing the patient community of fallacious and faulty logic one should note the accompanying commentary in PNAS suggesting starting antiretroviral trials in CFS right now.

The trouble is some of Alan's ideas are patronising. Anyone who has not experienced CFS cannot make a judgement on whether ARV side-effects are worse than CFS itself. Every time someone makes such a judgement against taking ARVs they are implying that the ARV side-effects ARE worse than CFS.

Not only does Alan not have a good idea of how debilitating CFS is, he probably has little knowledge of the possible side-effects of ARVs.

He may be a nice bloke. Nicer than a lot of us, even. But a lot of what Alan says about the science of CFS, viruses, RV, and the current studies seems to be... well... uniformed. Don't ask me for instances - just read this thread. (I led this post with one example) This is very evident. In other words, why is everyone wasting their time arguing with him?

 

[V99]

And you don't see it anywhere. Maybe one of us is wrong?

Clearly I do not


Well done Jace and RustyJ, very good posts.

The ARV issue concerns me greatly. To be blunt ME has been entered as the cause of death on numerous cirtificates in the UK. It is not a benign condition. So how could ARV's ever be worse. For a patient like myself it would be unreasonable to try them experimentally, I am better off waiting, but they are not. It has been another trick of the psychobabblers to make the world believe that this is only fatigue or chronic fatigue, but they can't stop a coronor from performing an autopsy, and discovering the truth. This situation is disgusting!

 

[Wayne]

surrounding CFS there is also what some on this forum have referred to as "reams of psychobabble". The biomedical research is subject to heavy skepticism by default while the frequently flawed psychological research usually goes unchallenged and related speculation is presented as established fact. Double-standards are extremely irritating.

The patient realises that their poor treatment stems from prejudices present in the general public and the health care system, then sooner or later traces much of the psychobabble back to psychologists and psychiatrists, who often appear oblivious to or rarely take responsibility for past mistakes or the impact their claims have on how patients are treated.

During a lack of evidence we can tentatively look towards trends. The trend is, retroviruses cause disease, and chronic illnesses dominated by physical symptoms which are initially judged psychogenic or psychosomatic end up being better explained more in terms of organic pathophysiology.

Great post Biophile, thanks for posting. One thing I hope Alan gets out of this discussion is an understanding of the need for RESPONSIBLE members of the psychiatric profession to step forward with LOUD denunciations about how their profession has been hi-jacked regarding CFS.

The ignorance and arrogance of many arm chair psychiatrists interjecting themselves in CFS discussions is and has been astonishing. A question I would have for Alan is, "When will the psychiatric profession take this situation seriously, and address it appropriately and assertively?"

Regards, Wayne

 

[V99]

Not everyone in the psychiatric profession believes ME/CFS to be psychosomatic. Just a few powerful voices